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Young people’s empowerment at TRIUMPH Fest

Hemlata Pant, a member of our Young People’s Advisory Group, reports on two days of community, connection and learning at TRIUMPH Fest – a transdisciplinary research network for the improvement of youth mental public health.

On Friday 7th October 2022, a group from McPin including myself knew we were going to the 2-day long TRIUMPH Festival in Edinburgh. To talk about our YP advisory network and to promote our campaign, mental health research matters. We’ve made a video of some of the content. What we didn’t know was that we’d come out of our time there with a richer and revitalised sense of what it means to work towards building the best future possible for young people.

During the welcoming first day, just seeing stalls and stalls of advocates for young people showed me that the two days would be so insightful. There were stalls from all around the UK: Ayrshire in Scotland, groups from Northern Ireland, Cardiff and more.

From conversations with other attendees, it was clear that more festivals like these are needed since there was just so much transfer of knowledge from everyone’s own experiences working in mental health. Whether it be health practitioners, policy makers, academics, voluntary organisations and more each passionately cared about using what they know and can learn to make sure young people’s experiences with mental health are as positive as possible.

In particular, hearing from Beyond about the future of community and youth empowerment and Not So Micro about tackling mental health inequalities in racialised communities resonated with me. I strongly believe accessibility should be at the forefront of any movement looking to empower young people. We had a panel where Vanessa from McPin spoke alongside young people and other academics/voluntary sector leaders about youth involvement in research. There were so many brilliant examples including from care experienced young people and a member of the TRIUMPH youth organising committee.

After a long day of promoting our Mental Health Research Matters campaign and talking to such interesting people, we were all given a lovely evening full of Ceilidh and a lush dinner. Next time you’re given the chance to Ceilidh in Scotland – go for it – there’s a real charm to group dances with traditional live music! Maybe it’s just that TRIUMPH network are such good hosts, but I had a ball as they kindly explained to non-Scottish people how to do such a fun group dance. We ended the evening with Auld Lang Syne and the memory will stay with me forever. I had only recently turned 18 and this was my first solo trip. I was nervous meeting new people and travelling alone. But I even managed it and was so happy at the end of day one. I even managed to fit in a quick walk around Edinburgh to see some sites.

The next day was insightful in a different way. Each of us from McPin attended different, parallel workshops. The first one I went to: Debating Mental Health was so expertly organised and ran. The group of attendees I was with all agreed that we felt like our opinions were listened to and built upon. We had activities such as moving to parts of the room depending on our opinion of a given prompt and group collection of ideas based on our experiences with mental health. Unlocking the ability to really deep-dive into thoughts around mental health with peers is something I believe we should constantly be doing. This workshop did so perfectly.

The next and final workshop I attended was with Brian Costello – a real expert on young people’s mental health and changing attitudes about it for the better. Telling the story of the creation of HeadStrong: a mental health service he founded which works with schools and local authorities. As a young person, finding out that someone so influential and charismatic on stage also struggled with mental health in his youth; as well as hearing about his journey which used that experience to make life better for so many others inspired me to further contribute into the field.

This feeling that I am able to make a positive change and that there are people out there to support me echoed throughout the festival. I hope everyone interested in advocating for young people and mental health gets to go to a festival as insightful and heart-touching as TRIUMPH.

Thanks to each one of the AMAZING ambassadors for making us so welcome as well as everyone working behind the scenes – your hard work was evident in the success of the festival. And do check out the video we made from some of the guests #mentalhealthresearchmatters.


We’re sparking a conversation about why mental health research matters, what good mental health research looks like and how we can all make a difference. Book a place on one of our free webinars or join the conversation on twitter and let us know why #MentalHealthResearchMatters to you.

Dr Vanessa Pinfold

Vanessa has been working in mental health research for over 25 years.  She has published studies on stigma and discrimination, families and carers, experiences of the mental health system, wellbeing networks as well as more recently co-production in mental health research.  She is currently prioritising developing peer research methods through collaborative or co-production approaches. This includes work developing a community navigators approach to combat loneliness among people with depression and anxiety, developing a collaborative model of care working across primary and secondary care for people with on-going mental health needs, and progressing work on wellbeing networks. Vanessa is an experienced health services researcher and leader within the mental health research charity sector. She currently chairs the Alliance of Mental Health Research Funders and at McPin is the co-founder and research director who is responsible for overseeing the work of the charity. She has a PhD from University of Nottingham, Department of Geography.

 

Time for Change: Action Not Words (Black History Month 2022)

Vanessa Pinfold

We have recently joined a new programme called Inclusive Boards to provide us with another way to drive forward our EDI (Equality Diversity and Inclusion) – or as I learned recently JEDI (Justice, Equality, Diversity and Inclusion) – work at McPin.

In the past year we’ve been developing a new strategy for the charity, and central in all our conversations with staff, trustees and our wider family of lived experience advisors and consultants has been a focus on anti-oppressive practices.

Whether it is responding to a documentary, like the recent Panorama investigation of abuse in a secure psychiatric hospital in Manchester, or the ongoing violence experienced by Black and people of colour in our community, such as Chris Kaba, or Black History Month, we know that our actions and energy need to extend far beyond an ‘awareness’ period but be embedded in our lifelong learning and concerns.

Fostering open conversations

At McPin the intention has been to bring conversations into the open far more frequently – whether that is in project sessions with academic partners, strategy meetings with other mental health research or charity leaders, team meetings or review sessions with staff, and agree actions.

Everyone’s annual appraisal now sets targets for anti-racism and anti-oppressive work orientated towards specific work tasks as well as self-education, including the choice to attend specific courses.

There are lots of ways an organization can encourage and support staff to engage in challenging aspects of our history and think deeply about how we can deliver our mission in a more equitable, open way.

Our mission will always be to transform mental health research and centre those with lived experience. And I thought I would share a few personal reflections mid-way through Black History Month 2022.

Actions not words

The theme of Black History Month this year is ‘actions not words’. I am a mum to two teenage daughters and one of my actions in the last few years has been to bring into our house more books, podcasts and conversations about white privilege, racism, discrimination and inequalities.

I went on a course earlier this year run by Jess Mally which I highly recommend: an introduction to anti-racism. It was a really good use of four Wednesday evenings and I still draw upon the conversations we hadin that group now, as I talk with family and colleagues.

What this course provided was the opportunity to listen, reflect and digest alongside other aspects of the past that are often ignored; and to consider the feelings of others, particularly people of Black heritage living in the UK today, for how we present our history and heritage.

I have a long reading list to work through – and I might have to move towards audiobooks while I walk our dog to make better progress. Top of my list is ‘Black and British’ by David Olusoga.

Revolution for radical inclusion

Earlier this month, I was at a weekend mental health festival run by young people from the TRIUMPH network in Edinburgh. It is a transdisciplinary network that is concerned with youth public mental health, especially among those in greatest need.

It was a really thought-provoking two days, spending time with young mental health activists, and included conversations about racism, British imperialism and how to get beneath the surface on big topics, such as what is wrong in our society and, in the midst of a cost-of-living crisis and government chaos, how can we create a mentally healthy society?

Revolution was mentioned, with strong support for radical inclusive solutions, reflecting the needs of racialized and marginalized communities.

Learning from others, and each other

I have a long way to go progressing my knowledge and understanding in order to be a better leader, working and running a mental health organization, centered to address racism and all forms of oppression.

As an organisation we won’t always get it right, but we do want to foster an environment that is safe for people to raise issues and we are committed to hear them, learn from them and take action when they do occur, including micro-aggressions.

At McPin we are launching our speakers’ programme, inviting  guests to talk to the team, covering a range of topics that help us deliver more inclusive mental health research.

The first of these is this month, led by Doreen Joseph (who has recently launched narrative Black History Group) and Paul Grey. We are thrilled to host two experienced cultural studies and mental health activist experts who will challenge and educate about Black History.

We are also encouraging staff to share resources and ideas (books, podcasts, TV programmes etc.) that they have found useful in our October team meeting.

I recently stumbled across Great Lives on BBC Radio 4 with Bonnie Greer exploring the history of Morant Bay in Jamaica and the hidden history of seven female activists.

I know our team will have lots to share, and look forward to their recommendations. Crowdsourcing actions as well as learning materials is essential.

My next steps include spending at least one day at half term exploring London with my kids, visiting Black History events including the V&A exhibition Africa Fashion; supporting Black businesses, including on Etsy; and, from an organisation perspective, looking at the survey results and report that will be coming our way from Inclusive Boards in about 8 weeks’ time, with support from Do it now now to take forward recommendations – namely new actions.  

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Vanessa Pinfold is Research Director at McPin.

#MentalHealthResearchMatters – round-up from week one!

Vanessa Pinfold

About three years ago we had the idea to start a conversation about why ‘mental health research matters’ (and does it) as part of a piece of work funded by UK Research & Innovation (UKRI).

Last week, after many months of planning, particularly by Daisy Armitage at McPin, the conversation was launched on World Mental Health Day.

The idea behind this ‘conversation’ is to surface interest about how we do mental health research, what we focus upon and what could be done differently, as well as celebrate progress, achievements and consider next steps for the sector.

I have worked in mental health research since I was 22, when I started a PhD at Nottingham University. Now I lead a mental health research charity, set up to champion lived experience expertise as a vital component of all stages of the research process, and have just celebrated my 50th Birthday.

You could say I have a deep and personal interest in #MentalHealthResearchMatters because my career and life have been orientated around research.

But that interest does not preclude me from questioning how we do research or why are we doing research at all. I am impatient to see mental health research deliver better outcomes for everyone affected by mental health issues.

The groups whom I think of first when I say ‘everyone’ are:

  • People who personally identify as having mental health issues
  • Family members, friends and carers of people affected by mental health issues
  • The practitioner workforce employed in mental health roles across the voluntary sector, NHS and private companies
  • The research workforce who can be found in academia, policy think tanks, charities and elsewhere
  • The general public living in communities that are impacted by structural inequalities, poor mental health, climate & environmental uncertainty, the cost-of-living crisis and pressurized public sector services

The ultimate goal is a huge task; improving the mental health of the nation. In week one of the campaign, we have started to surface why #MentalHealthResearchMatters to so many people – and the reasons concern our need for more and better solutions.

  1. We’ve been recognising the need for evidence-based support – identifying treatments that ‘work’ for some groups of people, giving hope that mental health can be improved and there are choices of support on offer.  Research is a key driver of better understanding of mental health and the creator of innovative solutions that, if put into practice, can improve the quality of people’s lives.
  2. All aspects of our lives affect our mental health. There is value in research that takes a truly whole-life perspective, understanding discrimination and poverty as well as therapy, medication and service re-design.
  3. Ultimately, research is important because it can improve lives. It can influence policy and practice, including how resources are distributed or regulations are drawn up.

Do take a look at the twitter hashtag where people have been posting statements about why #MentalHealthResearchMatters matters to them

Our webinar on Monday 10th October was on the topic of Inclusive Research. This is a vital part of the conversation for mental health research.

Thank you to our host Celestin Okoroji from Black Thrive Global and guests from three UKRI networks: Praveetha Patalay, Yasmin Ahmadzadeh, Panos Spanakis, and Karen Mak. You can access the whole conversation here.

Our guests started some interesting conversation threads, including the role of researchers as activists and disruptors. They discussed how research systems need to re-orientate to be more inclusive and useful because often findings are not generalisable, or quality of evidence being produced is low-grade.

Our panellists acknowledged that the measurement question in mental health needs progressing – which outcomes are important and how do we measure them?

They recommended that all mental health research should be concerned about inequalities – and how we don’t need inequalities scientists per se, but everyone should be engaged in the study of this fundamental driver of poor mental health.    

The co-ordination team are busy summarising this webinar with an infographic and short excerpts to follow. Thank you for getting involved.

Please spread the word, and tell us why #MentalHealthResearchMatters to you


Vanessa Pinfold is Research Director at McPin.

The #MentalHealthResearchMatters campaign is running from 10th October to December 2022. UK Research & Innovation (UKRI) funded 8 mental health research networks to tackle a variety of mental health research subjects, ranging from youth mental health to violence and abuse, to loneliness and social isolation. Visit the website to find out more.

#MentalHealthResearchMatters is a digital conversation about why mental health research matters, what good mental health research looks like and how we can all get involved to make a difference.

Happiness at Work Week 2022: A diary of intention

McPin’s Senior Operations Manager Clare talks about the power of focussing on the potential positives and what this week looks like for our team 

Clare Walsby

This week is International Happiness at Work week.  Given everything that is currently happening in the world, it seems a strange week to try and talk about happiness at all, but ‘awareness weeks’, however cliched, can open up an opportunity to focus on something potentially positive and beneficial, and that has to be a good thing. 

A few years ago, when I joined McPin, I started the highly enjoyable custom of gifting something to the team during this week every year.   

The first year it was journals, the next an extra day off (it was 2020 and everyone was at their Covid lockdown limit), and the next it was chocolate.  Stay tuned to the end of the blog to find out what it will be this year…:)  

Monday 

An unexpected bank holiday.  At McPin we recognise that the team all have different views on how they wish to spend this day, so we have given everyone the option of taking the leave on Monday 19th, or on another day within the next two weeks. I, like many others, will have to take the day off for childcare reasons, but I will be keeping an eye on my emails to check that the team that are working are supported. 

Tuesday 

One of my personal goals for the coming months is to improve McPin’s support for those going through the menopause. Vanessa, our Research Director, highlighted the Menopause Workplace Pledge as a good place to declare our intentions.  I am a firm believer in actions speaking louder than words, and am aware of how signing pledges can be seen as the ‘action’ in itself, with no more work or learning to be done. So, on Tuesday I will be signing the pledge on behalf of McPin, and also booking to attend a conference on supporting menopause on the workplace in October so I can learn how to put practical steps in place that will truly help the team. 

Wednesday 

On Wednesday it is our monthly team meeting, held hybridly (is that a word? I think it must be by now) so everyone who is working can attend from wherever they are. These meetings allow us to refresh the sense of community that was somewhat lost by the move to working remotely. We use these times to come together to learn and share information about our current projects, seeking input and collaboration from our colleagues.  Vitally, they also remind us why we do what we do, why we all committed to McPin’s mission and why Mental Health Research Matters

Thursday 

This is typically my day in the office, where my wonderful team and I can see each other face-to-face and collaborate on ways to improve wellbeing and happiness at McPin. This Thursday we will be reorganising our annual Wellbeing Day, which unfortunately had to be postponed due to the volume of people currently in London. We hope to do this in October – a day to meet, chat and spend time with our colleagues whilst enjoying a break from emails and meetings. I will also be labelling up and tending to the 20+ plants that will have commuted in with me… 

Friday 

…Yes, plants! A gift for 2022 that hopefully symbolises growth, development and life. Plants also require action to survive and thrive – words alone will not keep a plant alive. Tending plants can provide a boost in mood and a reduction in stress levels according to the RHS, and I am hoping that the fabulous team at McPin will get as much pleasure out of these plants as I had choosing them.   

By Friday this awareness week will be drawing to a close, but it is our intention at McPin to continue the pursuit of employee happiness all year round. For more ideas on how to do this, please see my blog about ways to improve wellbeing at work.

To find out more about who we are at McPin, or about joining our team, take a look at our website 


Clare Walsby is Senior Operations Manager at McPin

Loneliness & Mental Health: How research can help find solutions

To mark the end of Mental Health Awareness Week, the McPin team explores the importance of research in investigating – and tackling – loneliness

Vanessa Pinfold

 We started doing research directly on loneliness at McPin back in 2017. It is something I have always felt was a vital topic affecting people across the course of their lives. 

In particular we felt this was true of: young people developing their sense of identity, changing schools and dealing with relationships; older people concerned about changes in mobility and health, dealing with bereavement and changing relationships within families; adults managing stress and change in their lives including new parents, the homeless, people losing jobs and people with health difficulties.  

“Is loneliness a health problem or is it a social problem with health consequences?”

I could also relate to loneliness and the idea of feeling lonely but not being physically alone (termed social isolation); being surrounded by people but feeling disconnected and very alone.  

Questions I have previously posed include: is loneliness a health problem or is it a social problem with health consequences? Should it be ‘medicalized’ with treatment prescribed? When did loneliness move from being a very ordinary experience to a significant problem with long term adverse outcomes? How is loneliness different to, say, poor mental health including depression?  

There was a lot of think about, and it was becoming a ‘hot’ research topic.  

Building on existing research 

As McPin moved into loneliness as an area of academic work, we found some of these questions were being considered, including measures of loneliness and how well suited they were for different groups of people, and the role of social prescribing as a health intervention.  

The BBC did a nationwide ‘experiment’ in 2018 collecting narratives on loneliness from the public. There was also a funded network dedicated to research on mental health and loneliness based at UCL.  

This all gave us a good baseline of evidence from which to start looking at the topic. 

Wellbeing networks & mental health 

In 2017 we had the opportunity to work on two projects that built on  Community Health Networks, which we carried out from 2011-2013, and developed an innovative approach to mapping people’s social worlds – including connections to people, places and activities, looking at how they interlink and how they impact wellbeing. 

This resulted in the Hounslow Wellbeing Network being set up in west London, as well as the South London network mapping for physical health, a pilot study that aimed to support people diagnosed with a severe mental illness to improve their physical health using social connections.   

Read about both on our website, and you can also watch a video from the Hounslow Wellbeing Network here: 

Moving forward with solutions 

As we come to the end of Mental Health Awareness Week 2022, which has focused on loneliness this year, it has been good to follow the conversations and contributions from people across the world.  

In the last five years we’ve spent two of those living under the Covid-19 pandemic with restrictions on our movements in place. This has placed an even greater emphasis on loneliness and its consequences for poor mental health.  

We don’t need research to tell us loneliness is problematic; that’s pretty obvious. However, research could help us with getting some of the solutions funded by local government or public health bodies.  

Research could also help us understand the impacts on particular groups, and what might alleviate feelings of loneliness so we are better able to offer support and help prevent the negative mental and physical health consequences associated with loneliness.  

“Many community-based supports closed during the pandemic and have had funding cut.”

Research priorities 

In conversation with Georgia Naughton, a peer researcher on our team at McPin, we reflected on our priorities for research on loneliness. They are: 

  • Better measurement of loneliness by age, gender and ethnicity. People experience loneliness in different ways and we need to know more about that so solutions better suit individual circumstances.  
  • Using the current research evidence-base to influence commissioning decisions so that services and supports are available to those who feel lonely. There are lots of examples of projects addressing loneliness with supporting evaluations; we’ve looked at the Men’s Sheds online and community peer support groups, and Community Navigators programme, to name just a couple. Many community-based supports closed during the pandemic and have had funding cut, including libraries, after-school clubs, and social groups for varied age groups.  
  • New research to better understand the impacts of the pandemic on loneliness, including the benefits and challenges of virtual connections.  
  • To ensure research is inclusive of the people most marginalized and isolated in our communities, as we know isolation can be a compounding factor for loneliness.  
Image: Gustavo Fring from Pexels

No ‘one size fits all’ answer 

Georgia  also emphasized to me how important a ‘no one size fits all’ approach is in regard to support focusing on reducing loneliness.  

Current research reports that people experience loneliness differently based on age, as the causes of such loneliness are more often than not caused by different life events or factors.  

This being said, a lot of the current research base and interventions focus on mainly two age groups: young people and older people.

Therefore, there is a lot less knowledge and support available for individuals outside of these age groups who are experiencing loneliness. This in itself may then cause further feelings of isolation.  

It is also important that knowledge and support is accessible to people of all ages and experiences.

That’s why research focusing on individual experiences of loneliness, which considers varying protected characteristics, is essential to facilitate the wider use of personalized interventions for loneliness.  

Making a difference in communities 

We are currently working in collaboration with University College London to test a co-developed social intervention called the Community Navigators programme. The intervention aims to reduce loneliness and depression.  

We were part of the developing team with research testing feasibility and acceptability. Now we are looking at effectiveness and implementation.  

Research can be a long and complicating endeavour! Something that has helped our work researching loneliness is our partnerships with experts by experience. 

We work side by side with people who have personal experiences of depression and loneliness, and this has been vital in shaping both our research processes and co-designing new strategies to test.

That includes this week – so big shout out to everyone who has shared their knowledge about mental health and loneliness, helping us and others drive forward the research agenda.  

Community Navigators 2 is currently recruiting roles in York, Camden & Barnet. Find out more & apply today! 

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Vanessa Pinfold is Research Director at Mcpin 

Georgia Naughton is a Trainee Peer Researcher at McPin 

Our history

The McPin Foundation has evolved from a small family foundation to a specialist research charity dedicated to putting people with affected by mental health problems at the heart of the research agenda

The foundation was established in 2007 by Dr Nick McNally and Dr Vanessa Pinfold (“McPin”) as a small grant-giving family foundation.

The focus until 2012 was awarding grants to organisations undertaking education, research and community projects. Our grant making programme is currently closed.

In 2012, the Trustees decided to refocus the activities of the charity and to establish the foundation as a dedicated mental health research organisation, with a focus on promoting expertise by experience in research.

From April 2013 we were joined by researchers from the current Rethink Mental Illness Research Team. We have since evolved and grown to work with a wide variety of researchers, public involvement, policy and communications professionals.

As well as conducting our own research, we work with other researchers in collaboration and to support their public involvement work.

We remain interested in other potential collaborative hosting arrangements to support individuals or organisations committed to improving mental health through research.

Our trustees

The McPin Foundation’s Trustees govern all our activities, including overseeing the work of the research, public involvement, communications and operations teams. Our Trustees are selected to bring a range of skills, experience and contacts to help deliver our stated aims. They share a dedication to improving mental health research.

We are committed to having at least half of the Board with direct experience of mental health problems, either through caring roles or managing their own mental health.

Vanessa Pinfold, one of the founding members of the McPin Foundation, stepped down as Chair of Trustees in 2013 to establish our staffed research unit. She reports to the McPin Foundation’s Independent Trustee Group (ITG) in her role as the McPin Foundation Research Director. The ITG is currently chaired by Amy Meadows.

Anti-racism and mental health: “All the researchers I’ve worked with have been White”

Sandra Jayacodi reflects on her experiences in research involvement and what researchers and funders can do to be anti-racist

Mental health research still has a long way to go before its workforce looks like this

It’s been a while since the end of our webinar series – How to become an anti-racist mental health researcher – delivered jointly with LivPsych Society and the Mental Elf. The last session was June 2021. All the episodes are available to watch. We are creating a summary resource that we hope to launch by the end of the year.

Here we are pleased be in conversation with Sandra Jayacodi, who uses her lived experience in mental health research and who spoke at our last event. She sat down with our Director of Research, Vanessa.

Vanessa: It’s great to talk to you. What was your response when you were invited to talk at the webinar?

Sandra: At first, I didn’t really think there was an issue. I had not thought about racism within mental health research until then. But we are who we are because of our background, the languages that we speak, the understanding of our cultures, our faith. All those things play an important role with regards to our character and behaviour and how we see things and do things.

I think I realised from thinking about and talking about this, that if I want somebody to understand me, it would be easier for somebody who’s from my culture to understand me. That’s the same for research. If you are doing research in a field that’s going to affect me, how would you understand my experience of mental health, if you don’t understand as much of who I am as possible? Unfortunately, I have to say that all the researchers that I’ve worked with are predominantly White.

The other thing I realised is that too much research is focused on the wrong things. We have done enough research about the barriers people from BAME communities face when accessing mental health services. Or another common one is schizophrenia. There is so much research investigating why diagnosis rates are so high within BAME communities. And much of this research is being done by White professors. I wonder, is this research actually something that will help those BAME communities?

We talk about race within mental health. But the research is not really focused on what the community wants. It’s not community based. It is often based on the funder’s agendas.

Let’s take my community: the Tamil community. Why is it not possible to meet with a huge group of Tamil community members, and ask ‘where do you think research needs to be done?’, ‘What questions should we be asking in terms of research?’. I’ve never heard that. And I think, maybe that’s something we should do.

You’ve worked on lots of different research projects. What has your experience been of doing service user involvement work as a person of colour?

It has varied. With the RADAR study about coming off anti-psychotic medication, for instance, I didn’t feel like my presence was there to tick a box. But some studies, it can feel like you’re there to be a BAME representative. But I think, because I’ve been working within the patient and public involvement community for so long, I’ve seen progress in being accepted as one of the team, rather than just a service user who is here to be a tick box. There is progression but it varies from researcher to researcher.

What is quite telling is that even though we might recruit a diverse research advisory group, race is not often openly spoken about. But it seems like you’re feeling more confident to speak out?

Yes, I’m bringing race into the conversation more. For example, if you’re helping somebody to come off anti-psychotic drugs, it’s important to understand their background, their culture, who can support them, what family they have. It’s very important to understand that.

For me, I live on my own and, in the beginning, I didn’t want my family members or my community to know that I was coming off the anti-psychotic drugs. I did not want them to know about my mental health. But later I realised having my parents coming over to stay with me definitely helped. The community support I had was important as it made a difference during the withdrawal period.

I also believe when conducting research, it’s important to understand the participants and their different ethnicities. Consider questions relating to their culture, their beliefs, and how that has influenced the way they think about the research question. I don’t think we do this enough.

Has your approach to your work shifted as a result of thinking more deeply about these issues?

I tell the researchers I work with that I’m not the representative of all Asian people. Having just one BAME person in your research team doesn’t mean that you have engaged with ethnic minority group. I suggest they engage with a wider group. I say, you need to come to the community and talk to us about research questions at the start of the study’s design.

Thinking back, I realised I’ve never worked with any lead mental health researcher from the BAME community. That is a huge issue especially when there is a higher prevalence of mental illness within some BAME communities.  This made me question, why? Why is that so? It is a real issue. Why isn’t the government focusing on training, on increasing accessibility so that people from the BAME community can enter into research careers? We need to create more opportunities for people from BAME communities to have career progression.  

The webinar series was called ‘How to become an anti-racist researcher’. What’s your message to researchers?

We should be thinking about ‘Nothing about us without us’. To really focus on what the study is about and thinking about who it benefits. If there is the intention to include people from communities who are not usually included, what are the provisions you need to do this meaningfully?

The point is, you need to consider the race of the participants and I think the outcome of the research will be much richer if you do. If you have that conversation in the design stage itself, it will create a much richer outcome.

And to funders? What do you think needs to change for their work to be considered anti-racist?

I would ask them whether they have gone out and spoken to BAME communities and found out what they think should be funded. In research, discrimination can start with the funding and what areas get prioritised – even before the researchers make the application for that money.

We need to go to the funders and say, ‘this is what people from particular communities are saying they need’.

Then the emphasis needs to be on grant applications that engage communities to help shape their research question, and those that plan to involve the community throughout the research and dissemination process. Funders should promote and prioritise mental health research applications from a BAME lead or co-applicants. 

If funders truly want more people from different ethnicities involved pr participating in research, they need to look at what provisions are included in the research grants for the day-to-day running of the study.

Is there money allocated to travel, to fund work with grass-roots charities and organisations, to use interpreters and print materials in different languages? Without the foresight and finance to support all these things, the inequalities are perpetuated.

Thank you for your time.


Sandra Jayacodi is a PPI lead and peer researcher and Vanessa Pinfold is the Research Director of the McPin Foundation.

You can watch the webinars from the ‘How to be an anti-racist mental health researcher’ here.

Our vision and beliefs

The McPin Foundation exists to transform mental health research by putting the lived experience of people affected by mental health problems at the heart of research methods and the research agenda

Our mission

To champion experts by experience in research, so that people’s mental health is improved in communities everywhere

Our vision

A world where the value of expertise based upon experience is recognised and is at the heart of all stages of mental health research

Our core values

1. We passionately believe involving people directly affected by mental health problems improves research

2. We are driven to produce work of the highest quality

3. We are inclusive and listen to all opinions and perspectives

4. We collaborate with others to deliver our mission

5. We care about the wellbeing of everyone connected with us

Our beliefs

  • An effective mental health system should be based on knowledge and science that includes the expertise of people affected by mental health problems. We call this expertise from experience.
  • All mental health research across the entire bio-psycho-social spectrum can benefit from having expertise from experience in the research team.
  • Involving people with mental health problems and their families in research can:
    • ensure that research addresses relevant questions, those that have the greatest impact on people’s lives
    • help researchers engage positively and ethically with participants
    • challenge researchers’ assumptions in their study design and data interpretation
    • make study findings accessible and engaging for a wider variety of audiences.
  • In other words, combining high quality research expertise with insight developed through first-hand experience increases the chance that the research will be relevant, acceptable and impactful. This can be done in multiple ways, which collectively we refer to as using collaborative methods.
  • Despite the fact that mental health problems affect 1 in 4 people in the UK, investment in mental health research remains shockingly low.  There is an urgent need for greater investment in high quality mental health research. Ensuring that expertise from experience is included increases the chance that this money will be well spent.
  • Mental health research must mean more than the search for a cure or new medications. Research explores, reviews, examines and assesses information to improve our understanding of prevention, management and treatment. It can provide the evidence desperately needed to improve the lives of people affected by mental health problems and the efficiency of services designed to support them.
  • Alongside universities and other organisations, the voluntary sector has a role in mental health research and can make a difference.

Partnership working

We will work in partnership with any organisation that has similar goals to our own. We will carefully review any potential partnership to assess conflicts of interest and mission compatibility. Our main expertise is in mental health services research with an emphasis on the social; most of our staff have psychology or social science backgrounds. We work collaboratively with experts in other research areas and believe it is very important that scientists from all disciplines work collaboratively to progress our understanding of mental health problems and prevention strategies.     

A word about language

A collaborative approach must start with a shared, constructive language.  Mental health has historically been associated with many degrading and devaluing labels.  However, there is little consensus about what terms should be used and, of course, context is key.

When talking about people with a mental health diagnosis or undiagnosed mental ill-health, we use terms like ‘people with lived experience’, ‘people with mental health problems’ and ‘people affected by mental illness’ to emphasise that the individual comes first, and the diagnosis comes second.  We rarely talk about ‘patients’ – a term which is historically disempowering.

When research focuses on mental health service use, terms like ‘service users’, ‘clients’, ‘survivors’, and ‘consumers of mental health care’ are used.

We know that people have their own preferences when it comes to these terms.  Our position is that everyone affected by mental health problems has an important voice in finding solutions to improve our mental wellbeing – and that we should all work to make sure that language is not inaccurate, disrespectful or disempowering.

In 2016, we published a guide to the language we use to describe our ways of working and methods. Our language and the way we describe our work has evolved since then and we are currently creating some updated resources to reflect this.

Anti-racism

The McPin Foundation stands in solidarity with those who experience racism, systemic discrimination, police brutality and violence more broadly. We are committed to acknowledging and tackling our complicity in systemic and institutional racism. In 2020 we re-assessed the work we were doing to tackle oppression and racism both within our organisation and the mental health research sector more broadly. The Black Lives Matter movement provided additional impetus for organisations like McPin to think again and more deeply about inequalities and racism. Entering 2022, what changes have we made?

We are making progress but this will always be an ongoing process. We have set up a peer support space for people of colour who work at McPin (called Auntie’s Kitchen). We give staff time within their working hours for anti-racism self-education or to attend courses and events.  We appointed new Trustees to support us to develop as an anti-racist organisation and commissioned training on inclusion for the board. We commissioned a deep listening exercise across the organisation and shared the findings with staff; we are using these to refresh our values and create a new organisational strategy in 2022. We worked with partners to deliver a webinar series “How to become an anti-racist mental health researcher” and we are planning on using this content to create a resource for researchers.

At the end of 2021, we were interviewed for From Pledge to Action by the Synergi Collaborative Centre which outlines some of the anti-racism work we have done. There is much more still to do to create a more inclusive and equitable organisation – in all aspects – communications, recruitment, leadership, organisational policies, project work and the support we offer to our team. In 2022 we are committed to completing equality impact reviews with project teams – often including university based partners – at the beginning and end of a study. We are also setting up more structures at McPin to move forward our anti-racism work including a Diversity Equity and Inclusion forum involving staff and Trustees. We must continually hold ourselves to account, intensifying our work to become an anti-racist and anti-oppression organisation. Part of this accountability is through our board. It is also through staff feedback and working with our wider networks. We also listen and learn from others in the charity sector and activists who are leading change. To find out more about our approach to this work, please get in touch directly. (Vanessa Pinfold, January 2022)

2021: Mental health, inequality and the role of research

As we wave goodbye to 2021, McPin Research Director Vanessa looks back on some highlights and also ahead to next year.

Vanessa Pinfold

At the start of 2021 we said to our teams, this is going to be a challenging year. We are still living with Covid-19 and the associated uncertainty, we are mostly working from home, and there is lots of project delivery. We vowed to to look out for each other and our mental health.

This year will be remembered for increased recognition of the importance of mental health, how inequalities in society are being exacerbated by Covid-19 – which impacts on the nation’s wellbeing – and an increased awareness of the role of research (and science) in our society. We hope that you have found ways to cope this year and, as we leave 2021 behind us, we are thinking of everyone in McPin’s networks.

Last year we talked about taking forward our work on young people’s mental health, inequalities and employment, as well as restarting projects that were paused during lockdown. We also wanted to push forward with more work on lived experience expertise and, in particular, examine how people use their varied experiences in their roles at McPin.

We promised to focus, both internally and externally, on anti-racism, inequalities and diversity in all our work, as well as how peer research and PPI (public and patient involvement) can and must do more to address systemic problems in mental health care and mental health research.

With all this in mind, here are a few of our highlights from this year:

Helping McPin grow

In 2021 our team grew so we had to recruit, induct, and train new staff, mostly via Zoom. While we’re starting to get the hang of interacting mostly virtually, it’s still not quite the same as meeting face-to-face. The silver lining is it has allowed us to welcome more remote workers to the team from across England.

Supporting the wellbeing of all our staff virtually still has its challenges but we are committed to continuing to develop, and it’s been great to see some initiatives pay off, including our expanded mentoring programme and a pilot wellbeing fund.

We have continued the journey we began last year on racism, inclusion and diversity internally, and will continue to work hard on this. We are currently recruiting, so please visit our vacancies page if you are interested in working with us or know others who might.

Trying new things

After a year of being able to do very little, we were keen to get involved in exciting new opportunities – which included securing two spots in the London Marathon. Our chosen runners signed up for very different reasons, and raised over £6,000 in total for McPin and mental health research.

One of our lovely runners, Rowan

You can read about how Rowan’s love of running and research collided here, and how the marathon gave Jozef a nudge along his own mental health journey here. Although sadly an injury prevented Rowan from running in the end, we are still incredibly grateful to both of them for their hard work, time and energy – and for picking us as their chosen charity.

We also wanted to take a step back and show the ways in which many of our research and PPI projects fit into the wider themes at McPin, which is why we’ve added some thematic pages to our website. These pull together projects, blogs, podcasts, audio and reports on a common theme into one place, to give an idea of where they fit in the bigger picture.

So far we have pages for VR & digital, peer support, storytelling, employment and inequality, with more to come. And a shout out to the podcasting we have been doing – which is new to us but something we are keen to develop. You can listen to one on young people’s mental health  here.

The Agency podcast looks at the steps to giving young people agency in mental health

Of course, the reality is life is never clear cut, and many of these projects overlap and intersect several themes. Hopefully the pages will serve to add context to the work we do, and encourage intersectional thinking, which is another big theme for us going forward.

Anti-racism work

A milestone for McPin this year was publishing a rapid review called the ‘Good Work Report’ for the Black Thrive employment project. It focuses on the changes needed within local systems to help Black people with long term health conditions thrive – health, education, employment, local government – using a community-led approach. Including in our own organisation, there are recommendations for us and others to take on board.

A short video on researching the impacts of Covid on Black people in Lambeth

Three of our peer researchers blogged about different aspects of being on the project: Researching the impacts of Covid-19 on Black people in Lambeth; Becoming a Community Peer Researcher; and The benefits and challenges of having a dual role in research.

We were also involved in a series of webinars with Mental Elf and LivPsychSoc on how to become an anti-racist mental health researcher, which saw fantastic speakers share their thoughts and experiences. We will be using the talks and feedback from the events to collate a knowledge hub on the topic in 2022.

In the summer, we also had an organisation come in to take a snapshot of where we’re at with our anti-racism work, and how we can take it forward to create meaningful, sustainable impact.

The results of the survey and one-to-one interviews done across the organisation have recently been fed back to us, and we are committed to using it for positive action in the days, weeks, months and years ahead, which we will keep you updated on as we progress.

Delivering better mental health  research

Our primary focus is on improving the quality of mental health research and ensuring the findings are used to improve people’s lives. We have delivered lots of projects this year, including the conclusion of the gameChange programme, where we delivered a qualitative peer methods interview study to explore how people found the virtual reality therapy.

Using virtual reality in the gameChange programme

This year also saw the completion of PARTNERS2 after seven years, a project which explored new ways of supporting people with bipolar and schizophrenia in GP practices, with some reflections on co-production.

Covid has led to a flurry of newly commissioned projects to address the mental health impacts of the pandemic. We got involved in the Health Foundation’s Covid inquiry, working with young people to contribute to their infographic series.

We worked with THIS Institute in Cambridge, publishing work carried out in the first few months of the pandemic and began a follow-on piece of work exploring best practice remote access mental healthcare. We are also involved in a study looking at Covid, inequality and mental healthcare through a racial equity lens involving NHS Trusts in Manchester, Coventry, East London and Sheffield.

There is new work on the horizon too with several studies working alongside people with psychosis, focusing on side effects of medication, development of therapeutic wearable devices, and addressing problems with sleep.

We continue working on our unfairness and mental health Photovoice study in Harrow and Lambeth (we are still recruiting!) and are supporting several applications for the MRC Developing Minds methodology call, which seeks to improve scientific approaches to best deliver changes for young people.

The inequalities and public mental health study is still recruiting!

2022 – a refresh and a big birthday

In 2022 we will be developing a new organisational strategy, building a new website (because it is old and clunky) and getting ready for reflecting on 10 years of McPin. Yes, we have a significant birthday coming up!

This calls for a refresh of our values, checking in on progress made and what still needs to be done to improve lived experience expert input in mental health research.

Thank you to everyone for your support as always, and particularly through another somewhat off-balance year. We are committed to doing practical research that can make a difference, and championing expertise from experience loudly and passionately.

Best wishes from all of us for the festive season and into the New Year.

To stay up to date with McPin’s work in 2022 and beyond, sign up to our newsletter and follow us on Twitter @mcpinfoundation


Vanessa Pinfold is Research Director at McPin.

Influencing

Awareness of the value of involving people affected by mental health problems in research, evaluation and service design is growing – but there is a long way to go.  The McPin Foundation works to influence stakeholders to make user involvement an integral part of mental health research and service evaluation and design.

 Our influencing work includes:

  • educating and lobbying decision makers and opinion formers
  • taking part in relevant debates, fora and networks
  • supporting and working in coalition with others to influence the research process and research agenda.

Examples of our work

Our research director, Vanessa Pinfold, has been the chair of the Alliance of Mental Health Research Funders since 2014. This group seeks to gain influence for the mental health research community and improve the quality of mental health research. They contributed to the development of a Framework for mental health research (2017) published by the Department of Health.

In 2017, we published a policy briefing called Everywhere and Everyone Included: Research in NHS Mental Health Trusts in England, which argued the Government needs to do more to fulfil its commitment on spreading research within mental health services.

In 2019, McPin joined the International Alliance of Mental Health Research Funders and Vanessa is co-leading a working group focused on lived experience. In May 2020, an international meeting in Mumbai, India will explore global mental health research funders involving expertise from experience in their funding calls. 

McPin have been supporting the MRC’s new research programme – Adolescent Mental Health and the Developing Mind. Our Young People’s Advisory Group have met the coordinator, helped recruit the programme director and sat on a funding making panel in February to award engagement grants. We spoke at the launch event and continue to work closely with the MRC, providing public involvement expertise.

Navigating loneliness research now it’s on our doorstep

McPin Research Director Vanessa Pinfold looks at research past and present to inform how we might address the increasingly vital issue of loneliness

Vanessa Pinfold

The Covid-19 pandemic has bought loneliness to our doorstep. I think many more people have become aware of the ‘loneliness problem’ through the past year, be that personally feeling lonely or awareness of the people around you suffering.

One direct result of this is that I now know more of my neighbours through setting up a WhatsApp group on our street during the last year.

This was partly driven by a sense that there were a lot of people at risk of loneliness because they lived by themselves and maybe we could connect and help each other; not that loneliness is all about social contact – you can live with people and feel alone, stranded in an emotional space of emptiness as well as a physical one. 

Personally, I feel connectivity to my street has been a positive from this extremely difficult year and most people joined it – with clear parameters set on use! It quickly became clear that for a WhatsApp group to be a useful and positive space it needed clear rules.

Loneliness in McPin’s work

At McPin, loneliness is a theme threading through a lot of our work. We are part of the loneliness and social isolation network at UCL, which has brought people together across the UK interested in researching loneliness.

We joined because we know how important meaningful activity and social connections are, both through our personal wellbeing networks study, and broader conversations with people affected by mental health issues.

There is increasing interest in this topic, both pre and post pandemic, spanning from the young to old age: check out these resources for more information.

A few years ago, we were part of the study developing a ‘new’ intervention for addressing loneliness among adults with chronic depression and anxiety.

By that we meant people who had lived with complex mental health problems and were supported by secondary mental health services that specialised in depression and anxiety; people’s whose health problems were disabling in many respects, including when it came to making social connections.

It was called the Community Navigator study and was funded by the National Institute of Health Research (NIHR).

The project co-developed a ‘Community Navigator’ role to input across the NHS, if proved useful. It brought together people with experience of loneliness, depression and anxiety, practitioners working in mental health services, and academics and has resulted in several research papers.

Loneliness among adults

First, we scoped what else was out there for addressing loneliness among adults and wrote up a review of what we found (Mann et al (2017) A life less lonely).

This review uncovered social prescribing work and psychology-based groups that were heavily tied to the medical model. Our lived experience advisors were keen to develop something different; an approach that was social, not medical, in value-base and philosophy, built upon the understanding of loneliness as felt by mental health experts by experience.

We then wrote up the results of our development work and small feasibility study, which showed the Community Navigator approach had promise; people mostly liked it and it was feasible to deliver (Lloyd-Evans et al 2020 Feasibility Trial).

This also helped us secure funding for part two of this work – a full Randomised Control Trial which will start in Autumn 2021, again funded by the NIHR. The aim of this second project is to see if the Community Navigator role is ‘effective’ and could be rolled out across the UK.

Things that helped and things that hindered

The paper I enjoyed working on most was our qualitive piece, co-produced with members of the entire team, including practitioners and experts by experience. We looked at the accounts of 19 people who worked with Community Navigators to address their feelings of loneliness.

We surfaced things that helped and hindered the relationship, which was valued as different from traditional mental health supports or family relationships (Frerichs et al 2020 Influences on participation).

As Leah moved on to describe her experiences of the Community Navigator programme, the tone of her narrative changed to one of optimism and energy, and it is clear that her relationship with the Community Navigator was at the heart of this. In an animated voice, with upbeat music playing in her home, she explained how she got on with her Community Navigator from the start, forming a close relationship that was “almost like a friendship”.

Extract from paper (page 6)

People made progress small and large. They acknowledged how hard it is to address feelings of loneliness but found that having a friendly professional person to support them was a bonus.

We are also working with young people to look at how loneliness impacts them, and the role of screen time including social media use as a help and hinderance.

Looking at the social issues of loneliness

I am personally wary of too heavy a focus on loneliness as a health problem. If it is to be treated as a health issue, the likely solutions must address social issues as well as medical ones. For example, what are the social determinants of loneliness? I think a new research project might be brewing!

Get I touch if you are interested in helping us progress this, we’d love to hear from you.

Get in touch to find out more and share your thoughts via contact@mcpin.org


Vanessa Pinfold is Research Director at McPin

ARIADNE: AddRessing the ImpAct of coviD-19 paNdEmic on the access to and experience of mental health care of people from Black, Asian and Minority Ethnic groups

What is this project?

This project is funded by the NIHR policy research programme under the funding call ‘Recovery, Renewal, Reset – Research to inform policy responses to COVID-19’. It is a 12-month study involving four NHS Trusts in Manchester, Sheffield, Coventry and East London.

The method we will be using is EBCD (Experience Based Co-design). Our focus is exploring the impact of the pandemic on access to and experiences of mental health care among people from Black, Asian and Minority Ethnic communities.

We will be interviewing key people to capture their view on current challenges and potential target ideas for change. We will be running workshops. Finally we hope to create implementation plans with each site to address inequalities.

Why is this project important?

The pandemic has widened inequalities in society, with people from Black, Asian and Minority Ethnic communities experiencing the negative impact of Covid-19 disproportionately. In mental health there was already a problem of inequalities in access and experience of care.

This research will support other programmes of work in the four sites to co-develop action plans to address racism and inequalities in mental healthcare. Our ambition is it can contribute to learning and change.

How are McPin and people with lived experience of mental health problems involved in this project?

We are a partner in the project and will be working with Steve Gilbert OBE to lead PPI (patient and public involvement) in research activities. This includes the formation of a 12-person LEAP (Lived Experience Advisory Panel) who will work with the team to influence and shape the project.

McPin will also employ two peer researchers to work on the study under the leadership of Dr Domenico Giacco From University of Warwick.

How can I get involved?

The project recently completed, September 2022. A report is being prepared for the funder – the NIHR. Thank you to everyone who supported this piece of work, including the LEAP members and peer researchers in the team.

Where can I find more information?

For more information about the project, contact vanessapinfold@mcpin.org.

Our Language and How We Work

The McPin Foundation champions the inclusion of people with lived experience of mental health problems in mental health research, often called Public & Patient Involvement in research or PPI. In our public involvement and research work we often seek to test new methods of doing this.

Because this is a relatively new field researchers, let alone the wider public, have yet to come to a consensus on the most appropriate terminology to describe it.

We have therefore produced these slides as an overview of the language we use at McPin and how we work. They are mainly intended as a guide for our staff, so we are consistent in how we speak, and our collaborators so they are clear about what we mean. They may be of use to other researchers who are thinking about similar issues.

Our Research Director and Co-Founder Vanessa Pinfold blogged about the process of creating these slides.

Covid-19, young people and inequalities: The emerging picture

A Young Person Co-Researcher and member of our Young People’s Network shares her experiences during the pandemic, being a part of the infographic research process and what the initial data she unearthed tells us about marginalised groups in the time of Covid-19

K.S., member of the Young People’s Network

I’ve been involved in developing an infographic to illustrate how Covid-19 has impacted the mental health of children and young people, and particularly those from marginalised groups. This involved reviewing recent research to unpick the data story of the pandemic and to understand how different groups of young people had been affected in different ways. As a young person, it is very important to me to be raising public awareness about this topic. Upon reviewing the data, whilst a lot of it confirmed what I believe has been going on for myself and my friends, it also captured other things that were beyond the scope of my current experiences. I learnt a lot about different groups of young people, and how Covid-19 has impacted their mental health; whether it be for better or for worse.

     

         The specific task I was set was to look at inequalities. How had Covid-19 impacted different groups of young people? A lot of the data I found highlighted intricacies impacting on mental health but not all of it helped me to unpick inequalities. We had to cut down the data sources. If the research did not have a comparison group, we were unable to include it. Having a comparison group within research is important as we can get a better understanding of any inequalities faced between groups. An example of this is comparing mental health outcomes of LGBTQ+ young people to non-LGBTQ+ young people. We wanted to see if any pre-existing inequalities had changed as a result of Covid-19 or whether these pre-existing inequalities were present regardless of Covid-19.

Covid-19 research and South Asian representation

              Whilst the data picture I found did capture a lot of what is going on, there is definitely room to have stronger conversations about various topics such as race, educational status and gender. We held a workshop with seven young people to discuss the infographic. It was great to highlight where we felt there is scope for future research to potentially spark deeper discussions.

From my own personal experience, the issue of race stuck out to me. As I come from a South Asian background, I do relate to some inequalities faced. One individual in the group touched upon how mental health for a white young person is potentially experienced very differently than a South Asian young person due to important factors that research may not even consider. Issues such as shame, lack of acknowledgement and reputational upkeep are a few of the many factors that should be considered.

A member of the Young People’s network discusses the differences in perception of mental health within different communities in the UK

There is a real gap in the research here that needs to be filled in order to acknowledge these young people. This would be best achieved by actively involving young people from different ethnic backgrounds in the design of research studies, ensuring diversity of perspectives and lived experience shapes future research.

University students were left in the lurch

              Another topic that stuck out to me during the workshop was the gap in research about the mental health impacts of Covid-19 for young students attending higher education such as University.

Whilst I am no longer a student, many of my close friends have been attending university this past year. During the second wave of the pandemic back in October 2020, there was a lot of blame cast upon students as they returned to university. However, during the entirety of the Autumn term, students didn’t have any clarity on whether they would even be able to return home for Christmas. Then suddenly the government gave students a window of time to return home (whilst some were sitting exams) and if they did not return in that window, they would no longer be allowed to. Ultimately, many did not go back to university after the Christmas holidays which left their accommodation, which most had already paid for, unoccupied.

A member of the Young People’s group discusses universities’ responses to the different stages of the pandemic

In addition to this, many students feel that they are about to enter one of the worst job markets with immensely high rates of unemployment. I finished my third year of University back in May 2020, during the first lockdown. The anxiety of the pandemic definitely took a toll on the mental health of both myself and my peers. If I think back to how I felt during that time, I do believe that the events that have occurred since would have inevitably led to poorer mental health outcomes across students. This has not yet been fully captured in the present research. More research is needed here to raise awareness and to provide better support to those who need it.

The pandemic did not affect genders equally

              Another topic raised in our workshop that is important to highlight is that differences in gender in terms of mental health outcomes due to the pandemic are yet to be fully understood. One member of the workshop pointed out that individuals that identify as men or women typically experience differences in their mental health, both in the prevalence of different mental health difficulties but also in the experience of them. There may be need for a gender segregated analysis to fully understand any disparity in mental health outcomes during, and after, Covid-19.

In addition, as a result of the pandemic with many staying at home with their extended families, stereotypical gender roles regarding the traditional men/women differentiation may have been perpetuated within certain households. For example, some women had to take on more additional caring responsibilities than men during the periods when schools were closed. We don’t know how this may affect mental health in the long term. I was raised by my father in a single parent household and I can only imagine the potential effects the pandemic might have had on his mental health had I been of school age. There needs to be more research on single parent households too.

A member of the group discusses the impacts of the pandemic on those who identify as men or women

Where to next?

              It is impossible to recognise the entire impact of the pandemic on young people’s mental health using a few statistics. Findings are still emerging, and we know first-hand narrative data will also be vital. The pandemic is ongoing, with new developments and restrictions being publicised in the media every day that may have an effect on mental health outcomes. Recent research has found that many young people experienced the most recent lockdown in 2021 as harder to cope with than the first lockdown, and we must remain vigilant as we move forward into more potentially unchartered territory.  

It is important for the perspectives of young people to be a key part of post-Covid-19 planning as the impacts are far reaching on our lives. I hope that diverse samples of young people continue to be represented within the dialogue and that we are offered the chance to share our experiences of the impacts of the pandemic.


To read the Health Foundation’s associated infographic, click here.

Stay up to date with the McPin Young People’s network by following us on Twitter.

How Time To Change got me started as a lived experience researcher

McPin researcher Lisa reflects on the incredible impact Time to Change has had, both on her personally and on the wider mental health landscape – and what needs to happen next

Viewpoint interviewers

At the end of March funding for the Time to Change (TTC) programme ended, and it came to a close after 15 years.

I have followed TTC, a campaign which was set up to end mental health stigma and discrimination, for a long time. I was also involved, in a small way, with its evaluation.

I thought, therefore, that this would be a good time to reflect on what it’s meant to me on a personal level, and also think about the wider impact it’s had on society’s attitudes towards mental health stigma and discrimination.

From service user to researcher

Thinking about the beginnings of Time to Change, and how I learned about it, takes me back nearly 14 years.

I was at a mental health support group and noticed a flyer advertising for service users to become involved with a study called the Viewpoint Survey. It offered the opportunity to work from home interviewing people, paid well, and all it asked for was lived experience of mental health difficulties (‘all it asked for’ – how ridiculous that sounds to me now; lived experience is nearly everything!). 

The Viewpoint Survey was set up by Kings College London to address changing attitudes and resources around mental health and help evaluate the impact TTC was having. It ran between 2008 and 2014 and involved interviewing roughly 1000 participants per year. McPin co-founder Vanessa was one of the project leads and helped to secure around £20,000,000 in funds.

I’ve been a service user on and off since I was 15 and have experienced a lot of discrimination and stigma in the intervening 34 years. I didn’t have the first clue about research in general, never mind mental health research – like many others, I thought of it as something done in a lab – I just knew this seemed important.

“Here was this opportunity that not only wouldn’t penalise me for my mental health difficulties but would help me reframe and actually use them in a positive way”

‘I felt my mental health difficulties meant I would never be able to work again’

There were roughly 22 of us at the first meeting, all from different walks of life and all with different reasons for being there, yet most of us were united by our shared experiences of mental health difficulties. 

It was so exciting. I had been at home raising my boys for many years and was terrified by the very notion of going back into the working world. I had felt my mental health difficulties would mean I would never really be able to work again – at least not in any environment that would give me any satisfaction. And yet here was this opportunity that not only wouldn’t penalise me for my mental health difficulties but would help me reframe and actually use them in a positive way to enhance the evaluation. 

I was lucky enough to be in the team involved in the designing the study and analysing the data, as well as conducting the interviews, with nearly all of us employed for our lived experience of mental health difficulties.

I think it was important that, very early on, the decision was made to employ a team of service users to conduct most of the interviews. This wealth of lived experience cannot have failed to positively impact the quality of the responses, as well as how we analysed the data and wrote up the findings.

No need to hide or pretend

This world of work was entirely new to me – true appreciation, no need to hide or pretend anymore and no more elephants in the room. For the first time for many of us we had the freedom to exchange our views and stories about mental health without fear of discrimination.

I can honestly say that becoming involved with the survey quite profoundly changed my life. I had truly written myself off but I’m still here and I’m still working, so Time to Change really did change all of that – for me, at the very least. 

Meeting objectives personally and professionally

Throughout the process, the TTC objectives have also come to represent some fundamental changes within my own life. For example, with the objective of “Improving public attitudes and behaviour towards people with mental health problems”; I no longer feel I have to pretend to be okay as often, which has always been so exhausting and certainly impacted my own mental health. People seem less judgmental and more able to accept the reality of my difficulties.

However, others have been a little more difficult on a personal level – such as “Reducing the discrimination that people with mental health problems report in their personal relationships, social lives and at work”. The stain from years of external stigma is not going to go away quickly and I believe there is still some way to go, but I’m also more aware of my own self-stigma.

Have attitudes toward mental health changed?

On a wider level I have noticed conversations about mental health springing up everywhere. I find people talk about it almost as much as they talk about the weather – and often in conjunction with talking about the weather (“Oh, this constant rain is getting me down”)! People may not always agree but they are talking, and this is changing attitudes.

The media also talks about mental health on a regular basis and it’s heartening to see a variety of celebrities talking about their own mental health battles. If it can happen to them it can happen to anyone and that message has finally touched most people.

Are changing attitudes enough?

There has been progress across all areas of society, and we have Time to Change to thank for much of that, but is it enough? As with any work in progress, for two steps forward there can be one step back.

The world is a very different place to what it was when Time to Change was getting off the ground. There’s a common statistic that 1 in 4 people will experience a mental health problem at some point in their lives and I wonder, given coronavirus, what those statistics look like now.

So, is it time to stop? I really don’t think so – this is only just beginning. There is still so much we can learn from Time to Change, which proved that, given a concerted effort and enough money, change really is possible.

Maybe we can think about the sorts of things that have instigated change and learn from them, so we can apply them to the myriad types of discrimination that continue to persist today.

Sign up to our Involvement Bulletin for opportunities to get involved in mental health research


Lisa Couperthwaite is a remote peer researcher at the McPin Foundation.  She has worked on a number of projects over the years including The Viewpoint Survey, TOG and, more recently, Work Well.

Read our first Time to Change blog from McPin Head of Research Vanessa Pinfold to find out how McPin has supported the anti-stigma campaign and also been shaped by it.

Time to Change is ending, so what next?

The end of Time to Change marks a personal milestone for McPin founder Vanessa Pinfold, as she shares how McPin has supported the anti-stigma campaign and also been shaped by it

Just one of many reasons to support TTC

The end of the Time to Change (TTC) programme – a campaign launched in 2007 to reduce mental health-related stigma and discrimination – is personally significant for me. This is because I was involved in setting it up more than 15 years ago, while working at the charity Rethink Mental Illness as Director of Research and Mental Health Promotion.

A proud moment

Extract from Stigma Shout report, 2008

It seems like a very long time ago when, back in 2006, I wrote a research review on mental health stigma for Comic Relief, to take to their trustees to begin the process of developing a pitch for a campaign.

Later, around 2010/2011, I was part of the bid team alongside Sue Baker who put together an application for sustained funding. It took months of work but when millions of pounds were invested, it was one of my proudest moments at Rethink.

As well as giving the campaign a huge boost, it also meant that the lived experience leadership programme in TTC could become more central. That was a criticism of the first few years and is an aspect of all work in mental health research, as well as something I am passionate about. It was something that I felt was so essential to mental health research that when I set up the McPin Foundation as a research unit a year later, ‘expertise from experience’ would be its driving ethos.

Building a social movement

Time to Change Objectives

The TTC team has worked tirelessly building a dedicated social movement of people addressing mental health stigma and discrimination. Jo Loughran, most recent director of Time to Change (and previous McPin Trustee), reminded us in her blog that at the heart of the campaign was the ambition to mobilise more open conversations about mental health. I think they achieved that.

Lots of people have found their voice and are talking more openly about mental health struggles, something that Covid-19 has also accelerated. On a societal level, statistics tell us that public attitudes have shifted by 13% since 2008, which equates to 5.4 million improved attitudes (see the latest impact report from the Time to Change team).

Then there are the ripple effects: organisations have pledged to change workplace culture and schools have embraced mental health awareness lessons. And this is only scratching the surface – see the TTC legacy video for a sense of what they achieved.

Stigma research and our work at McPin

There is lots to build on going forwards to keep the momentum going.

At McPin, we will continue the spirit of TTC by weaving anti-discrimination work into all our projects. That starts with the people working for us. Some of our job roles have “peer” in the title, which indicates a personal experience of mental health issues; not all choose to include this though, as we respect personal preferences over identity profiles.

Our staff use lived experience leadership in their work and write about it as a strength. We look to provide an environment where everyone can thrive – no one should experience discrimination, so we and other organisations need to keep calling out and sustaining pressure for change.

One of our contributions to Time to Change was an evaluation of their early schools programme. That legacy remains here as we develop our Young People’s Network – a community aged 13 to 25 who advise on mental health research relating to children and young people. That includes stigma as a topic to study in itself, as well as being part of the social movement that openly talks about mental health struggles.

The network’s involvement with the Keep Cool project is a great example of this – developing engaging, evidence-based tips to help young people manage their mental health. We continue to look for more opportunities to give young people a platform to develop their own work and careers.

Our stigma research work also continues, as we are involved in a small way in a study called Let’s Talk led by researchers at the University of Manchester. It’s all about opening up conversations for service users to talk to practitioners, particularly peer support workers, about their worries and concerns around mental health stigma and dealing with feelings generated by stigma and discrimination.

What comes next?

McPin and the rest of the mental health sector must keep working to tackle mental health discrimination as it is still a major problem with many impacts, and the next stage of this should take a more intersectional lens. Mental health discrimination is often interlinked with other forms of negative attitudinal and behavioural actions – by race, class, educational attainment, gender, sexuality and geography, as well as disability.

Yes, more people are talking about mental health and attitudes are better than they were, but does this mean things are better for everyone? Do peer/lived experience researchers have parity with those who don’t overtly draw on their lived experience in their work? When people reveal a mental health condition to their employer, who is given the support they need and who isn’t? Can we encourage more conversations about discrimination experienced by racialised communities?

The fight isn’t over yet.

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Vanessa Pinfold is Research Director at McPin.

Read our second Time to Change blog to find out how the campaign helped one of McPin’s peer researchers started in her career.

Looking back and looking forwards at McPin

Vanessa Pinfold

2020. The year that was – unexpected.

Out of a crisis some positives emerge, but mostly this year has been a seismic shock and the emergence of a “new normal” still feels a long way off. At McPin, we have tried to keep our positivity going by finding new ways to connect, by supporting our colleagues and those in our wider networks and constantly asking ourselves what next? How we can learn from others, change our organisation and in some small way meaningfully contribute through the Covid-19 pandemic?

After half a decade of mental health rising up the government agenda and seeping into national conversation, this was the year that no one could look away. Covid-19 wreaked havoc on the nation’s mental as well as physical health, and the aftereffects will be felt long after the vaccine is rolled out. Health and social care services continue to grapple with increased demand for mental health support and are still working out new ways of delivering core services.

The mental health impact of the pandemic, including on people with existing conditions, is also on the scientific research agenda. In fact, the amount of Covid-related research was so great that we had to rethink the way we communicated with our networks about involvement opportunities. We have inserted a trigger warning into our bulletins to alert those who are experiencing Covid-19 overload. We have also been vocal about our concerns that the pace of new research risks overlooking the important principle ‘nothing about us without us’. Involving experts by experience in designing research studies is as important now as it has ever been.

Covid research

We have been involved in lots of plans for new Covid-related mental health research, and two specific studies. The first was developing a peer-to-peer support programme with young people with Oxford University and the second was with Cambridge University’s THIS Institute, delivering an interview study using peer research methods to understand access to secondary mental health services. The latter will continue next year, exploring what “good” looks like for remote access care beyond the pandemic. We have some experience of this through our PARTNERS2 research project, which had to move therapeutic support to phone and online platforms. The team have written about this as well as the challenges of collecting research data remotely. We are keen to look at issues around digital exclusion and blended support (remote access and face to face contact) so do get in touch if this interests you too.

Here are a few of our highlights this year:

In 2020 our team grew so we had to recruit, induct, and train new staff via Zoom. Not meeting face to face is a new workplace experience. Supporting the wellbeing of all our staff virtually has also challenged us – but we are committed to continuing to develop. We have done a lot of work on racism, inclusion and diversity internally and more will follow. We are currently recruiting so please visit our vacancies page if you are interested in working with us or know others who might.

Endings and beginnings

We completed My Story, Our Future, a project about living with psychosis using a storytelling approach – and launched some resources for both practitioners and people using services. This work was delivered by survivor researchers. We also supported the NEON project and the production of a resource for people thinking of talking to others about their mental health experiences. We would love to do more storytelling work so do get in touch if you are interested. Our evaluation of Women Side by Side, a women-led peer support programme for women who are at risk of, or who experience ‘multiple disadvantage’, also came to an end. You can read about our findings and learning from the project here.

We have a team working with the NIHR School of Public Health Research. To engage people across England, they created the #Iampublicmentalhealth hashtag and accompanying website, which includes Covid Life, a collection of unique moments documenting experiences through the creative arts. Do take a look, there are poems, photos and films. In 2021, we are planning a Photovoice project to explore structural inequalities by talking to people in four areas in England.

A significant piece of work this year has been our partnership with Black Thrive, working on their employment programme for Black people with long term conditions in Lambeth. We have learnt a lot and many staff have been involved in a rapid literature review, a community-led interview study and developmental evaluation of a system change programme. With partners TSIP, the report asking what it will take for Black people in Lambeth to recover financially, physically, emotionally and socially from the pandemic is our first output.

The mental health research sector is doing rapid work thinking about priorities, and how we can continue to make progress with issues that felt very pressing before Covid as well as the new challenges the pandemic has brought. McPin were involved in a Covid roadmap for mental health science published by Lancet Psychiatry and we have reflected on the importance of research leadership, including among funders from the charity sector. The International Alliance of Mental Health Research funders has scoped out spending across the globe on mental health research highlighting inequities. It goes without saying there is much to do.

More change to come

At McPin, we are looking to 2021 and taking forward our work on young people’s mental health, inequalities and employment as well as restarting projects that were paused during lockdown. We will also be doing more work on lived experience expertise, and how people use their varied experiences in their roles, as illustrated by a recent blog post from Rachel.

We will be focusing both internally and externally on anti-racism, inequalities and diversity in all our work. Peer research and PPI (public and patient involvement) can and must do more to address systemic problems in mental health care and mental health research. Drawing on the expertise of everyone at McPin – our newly expanded group of Trustees, our staff, members of our Lived Experience Advisory Panels, project groups and Young People’s Network – 2021 will be a year of change for us as we move towards our 10-year anniversary.

Thank you to everyone for your support, always but particularly through the last few months. We are committed to doing practical research that can make a difference, and championing expertise from experience loudly and passionately. Best wishes from all of us for the festive season and into the New Year.


Vanessa Pinfold is the co-founder and Research Director of McPin.

Successfully co-producing research!

Beverley, Nick and Vanessa

“Co-production” is one of those terms that has become somewhat corrupted through over-use by mainstream health services, including mental health, and then weakly applied in practice.

We are lived experience consultants and a public involvement coordinator, and we know how disappointing it is when an offer of “co-production” turns out to be mere consultation or even a tick-box exercise. It was as exciting to find out that the Community Navigator Study was being true to the principles from the very start, as it was gratifying to reflect how fantastically well this had worked at the end. The publication of our recently released open access qualitative research paper is one part of this journey, where principles of co-production alongside peer research methods were applied throughout:

Influences on participation in a programme addressing loneliness among people with depression and anxiety: findings from the Community Navigator Study

The first study paper was published earlier in the year, based on the full feasibility trial findings:

Results from a feasibility randomised controlled trial of a programme to reduce loneliness for people with complex anxiety or depression

These papers present our work from a two-year study guided by the Co-production Working Group. The team consisted of service users, practitioners and researchers who drew on experiential, clinical and academic expertise with each given equal weight. People could have more than one role and have overlapping expertise.

The first 6-months were spent co-designing a new programme to reduce loneliness in people with depression and anxiety. Over the next 18 months, we tested it, modified it and explored it further to see if it was useful and acceptable to people.

For Vanessa at McPin, the Community Navigator study was a positive research experience using a co-production approach. And these experiences are rarely documented. The publication of the second paper provides the opportunity to share some of our learning, bringing the team back together to talk, reflect and connect even if that is only virtually.

For Nick, this project is worth talking about because it worked! It was well planned, had a purpose everyone could understand, and individuals knew how their skills could be best employed. The seamless way in which it ran allowed the serious stuff to flourish pretty much effortlessly.

Enjoyable not endurable

For Beverley, one of the key elements is to establish a non-hierarchical atmosphere so that everyone feels free to express their ideas regardless of position or job title. Saying that it is a level forum is one thing but curating the psychological safety and good-humoured rapport to actually encourage sharing is priceless. At a time when Covid-19 has brought many new collaborations between community and statutory bodies in response to the crisis, it is a principle that should be borne in mind if these connections are to be built upon and utilised as part of an integrated community health system. This style of working actually made the meetings enjoyable rather than endurable.

For other members of the co-production group, it is worth highlighting how important it is to be able to use personal lived experience of depression, anxiety and mental health services to co-design an intervention that addressed some of the challenges and barriers they had experienced in the past. Experiential knowledge so often gets lost in the system and this was a great opportunity to use both positive and negative experiences to create something that strived to attend to people’s individual needs.

So, what made a difference?

Writing the paper helped us reflect on how we did co-production in the Community Navigator Study, and what we learnt along the way. Here is a list of things we think helped.

  • Appointed a peer researcher as a member of the project team and resourced the role for the entire length of the study.
  • Discussed and agreed upon ground rules for co-production working group meetings from the beginning rather than wait until an issue cropped up.
  • Were transparent from the start on how decisions were going to be made across the team following co-production principles and agreed methods for gaining consensus as far as possible. 
  • Created an open, positive and non-hierarchical environment that allowed ideas to be articulated and developed in a safe space, mostly in meetings but also emails and telephone calls.
  • Sat at the table together, literally and metaphorically. On a practical level, this meant giving enough notice and carefully planning agendas so that everyone could make and contribute to meetings. But more importantly, everyone’s expertise (experiential, academic and clinical) was equally valued and drawn on to make decisions. This contrasts with other projects where the service user group might meet separately with their views ‘fed in’ to the decision-making group.
  • Hosted several meetings in quick succession at the beginning of the project. This enabled people to get to know each other quickly and establish good working relationships, which contributed to team cohesion. This laid a good foundation for later in the project when meetings were less frequent, or tasks were completed remotely.
  • Routinely asked everyone for feedback on how meetings were run and suggestions for improvement at interim points. These were incorporated where possible.
  • Were open to adapting our processes where needed but discussed this with the whole group first.
  • Ensured that the work was well organised, with roles and tasks carefully clarified.
  • Adopted an approach to the work that allowed for different people’s strengths and experiences to be used meaningfully at each stage.
  • Ensured there were opportunities to contribute in several ways and supported people to develop their strengths and skills. These included qualitative interview analysis, training the community navigators who worked on the study, writing up the final report, speaking at events, and producing blogs.  
  • Ensured sufficient resources were available for all involvement tasks, paid at a value reflecting their worth.

We feel that putting time and effort into co-production is a good investment. Our Co-production Working Group shaped the study – all members left an impact. This was equally true for shaping the Community Navigators intervention itself and in writing up the papers for publication. In our most recent paper we discussed how to visually represent our findings: the final diagram was a team effort and it was good to get positive reviewer feedback on that particular aspect of our work. 

We would like to encourage more co-produced research. You do not need to have the whole co-production process strictly mapped out at the start for it is a journey of discovery. A firm framework but with spaces for creativity will help research projects get the most out of co-production. Remember, it’s not just consultation, it is co-creation. May the future be fertile!


“I share the really positive experience of co-production described here. All through, it felt like we were doing research with the co-production group, not consulting them about it. I think that central principle was key. McPin, as involvement specialists, did more than just provide experience in how to organise co-production: they held the whole study team to account and ensured co-production remained a central focus at all stages. The co-production group model, rather than having a separate lived experience study group, was new to me. I feared it might mean some voices got lost. Instead, it served to break down barriers, ensured all perspectives were fully heard, and allowed everyone to share all their relevant experience, whatever perspective they primarily brought to the group. Perhaps especially with research about developing new ways of working, lived experience and practice experience are crucial: I’m really grateful to all involved that we got that on Community Navigators, and the study was much the stronger for it”. Dr Brynmor Lloyd-Evans, UCL. Study co-lead.
Here are a few tips to get you working towards co-production, based on our learning from the Community Navigators project

The Co-production Working Group was facilitated by the McPin Foundation including Vanessa Pinfold. Several members of the co-production group contributed to this blog including Beverley and Nick who are both lived experience research consultants.

Understanding access to secondary mental health services during and after the Covid-19 pandemic

Photo by Marianne Bos. Three arrows in circles pointing in different directions painted on a concrete wall

What is this project?

McPin are working with The Healthcare Improvement Studies (THIS) Institute on a study exploring people’s experiences of accessing and providing secondary mental healthcare during the Covid-19 pandemic. The study is funded by THIS Institute and led by Professor Peter Jones from the Department of Psychiatry (University of Cambridge).

Much has been written about mental health during the pandemic, but this qualitative study has a specific focus: to understand how the pandemic has affected experiences of accessing and providing secondary mental health support, and to identify principles for good practice.

The study began with a consultation with an expert panel of service users and carers to refine the project aims and approach. It was decided that interviews would be conducted with service users and carers to examine their perspectives on deciding to seek NHS mental health support, and with NHS staff to understand the ethical dilemmas and the challenges in provision of care staff faced during the Covid-19 crisis.

Papers:

Read our first peer reviewed paper from this work, which explores service users, carers and practitioners of remote access mental healthcare during first months of Covid-19.

Read our second peer reviewed paper from this work, which explores mental health practitioner experiences of providing support during first months of Covid-19.

Read our third and final paper from the study, which looks at access & candidacy for secondary services mental healthcare services.

Blogs:

Mental healthcare and Covid: “At a time when services were needed most, the onus was on us to find other ways to access support”

Why is this project important?

Secondary mental healthcare typically offers continued access to treatment and support. Changes following the introduction of lockdown measures meant services had to adapt quickly. Difficult decisions about prioritisation of care and changes to the way inpatient and community services could operate had to be balanced with multiple priorities, including individual needs and attempts to contain Covid-19 infections.  

As we move through the pandemic attention is turning to what we can learn from these experiences. This research seeks to offer useful insights drawing on views of mental health service users, carers and practitioners.  

How are McPin and people with lived experience of mental health problems involved in the project?

McPin helped to recruit both the study advisers and the study participants to both project 1 (interview study) and project 2 (Delphi survey).

Ten people with lived experience of using mental health services or caring for someone with mental health difficulties are advisers on the project, including young people. By attending meetings with the researchers they helped to shape the project in the beginning, ensuring that the research questions were relevant to service users and carers, and the methods proposed were appropriate.

The first study was conducted using peer research methods: all the service user interviews were conducted by a McPin researcher drawing on their own experiences of accessing mental health services. The peer researcher also worked with the THIS Institute team on the analysis and write up of the findings.

For the Delphi study we are also project partners helping to develop all the study materials including the survey tool, which has been piloted with lived experience advisors and the design, recruitment, analysis and write-up includes a peer researcher.

What is the current status of the project? 

We have completed phase one of the study and peer review papers have been published.

The second phase of the study is currently ongoing with researchers from THIS Institute and McPin, along with the advisory group. This is a Delphi survey to establish what ‘good’ looks like for remote access mental health care, acknowledging both the importance of face-to-face and the potential for more remote provision in the future. It should launch early June 2021.

Where can I find more information?

The report will be published on THIS Institute’s website and we will post an update here.

For further queries about service user involvement, please contact Vanessa on vanessapinfold@mcpin.org.

Social support after loss to suicide

What is this research?

The McPin Foundation is supporting a PhD project based at University College London focusing on social support after a loss to suicide. Not much is known about the impact of suicide loss on a group of family and friends, or about how best they can support each other through this bereavement. To better understand this area, the project involves two studies:

  1. A systematic review of quantitative research to understand whether social support has a positive impact on those bereaved by sudden or violent deaths.
  2. Qualitative interviews with friend and family groups who have been bereaved by suicide to explore their experiences of supporting each other.

The final stage of the project involves developing the basis of a public resource to help friend and family groups support each other through their loss.

Why is this research important?

Research has shown that people bereaved by suicide are at an increased risk of poor mental health and reduced wellbeing, so it is important to provide support to people going through this loss. However, we know from studies that people aren’t very likely to access formal support (such as their GP or psychological therapies) in relation to their loss. People may feel uncomfortable accessing this kind of support or aren’t able to due to their geographical location or because of a lack of knowledge about what support is available. In the UK, support specifically for people bereaved by suicide is only provided by the charity sector.

Together, these factors make it likely that people who have been bereaved by suicide will rely on their friends and family for informal social support. This means it is important to help friend and family groups support each other in the best way possible.

Currently, we don’t know much about the best ways for friends and family to support each other after a loss. We don’t know how support works if multiple people within a friend and family group are impacted by a suicide, and what the challenges are for friends and family who are primarily in supportive roles. This project aims to develop a better understanding of each of these areas.

How are McPin and people with lived experience involved in this project?

The McPin Foundation co-funds this project using funds raised by the Gibby family in memory of along Gwyneth Gibby, along with the ESRC. Vanessa Pinfold is on the PhD supervisory panel. McPin is supporting the involvement of people with lived experience in the project. A Public and Patient Involvement (PPI) group has been involved since the beginning of the project, ensuring that the research conducted is relevant to the needs of people bereaved by suicide at each stage and that it is carried out sensitively.

Currently, the PPI group is advising on the data analysis to ensure that the results are reflective of the real-life experience of people bereaved by suicide. They are also advising on the development of the public resource to ensure that its format and content will be accessible and useful to people bereaved by suicide.  

What is the current status of the project?

The PhD is now finished. Consultation for the development of the public resource is due to take place over summer and autumn 2020.  

The first peer-reviewed publication from this project is available to read online:

 A systematic review of studies describing the influence of informal social support on psychological wellbeing in people bereaved by sudden or violent causes of death

Where can I find more information?

For more information about the project you can contact Hannah at hannah.scott.17@ucl.ac.uk.

You can also get in touch if you are interested in being involved in the PPI group for this project.

Public Involvement in Research Group, Berkshire Healthcare Foundation Trust

Group type: 3. Institution or initiative-specific

Contact details

Named contact: Vanessa Jones

Email address: Vanessa.ppi@virginmedia.com

Telephone: 07899 793461

Address:

Berkshire Healthcare Foundation Trust

Research & Development

Fitzwilliam House

Skimped Hill Lane

Bracknell

RG12 1BQ

Remit of the group

Mental health and community healthcare

Frequency of meetings

4 times a year plus any extra for specific projects.

Who can consult the group?

Researchers in Berkshire Healthcare NHS Foundation Trust (although people from adjoining trusts do also consult us).

Website

N/A

Publications

N/A

More about the group (optional)

Radical collaboration, common sense & a focus on inequality: McPin’s response to the Covid mental health roadmap

Thomas Kabir, Vanessa Pinfold, Jessica Bond and Dan Robotham 

Today, the Lancet Psychiatry published a “roadmap for research” on Covid-19 and its impact on mental health, co-authored by 24 people and coordinated by the Academy of Medical Sciences and the charity, MQ. Thomas Kabir, Head of Public Involvement in Research at McPin, was one of three authors contributing a lived experience perspective. The headline recommendations include the need for real-time monitoring of mental health on a scale never before seen, the creation of a neuropsychological database of Covid-19, the design of apps and digital programmes, and research to understand what makes people resilient in the face of this crisis. There is also a focus on understanding the effect of the coronavirus on the brain and nervous system, and suggestions for how to do this using biobanking (storing tissue, blood, or genetic material), and by using patient data. The team’s expertise spans bio-psycho-social interests and there is a strong emphasis on the need for multi-disciplinary research approaches.

The paper is a rapid response to an unfolding, unprecedented situation and was the result of discussions among the authors about where research priorities should lie, informed by public surveys conducted by Ipsos Mori and MQ, just after lockdown began. As we have written elsewhere, the whole population now has lived experience of Covid-19. The stress will affect people in different ways and to different intensities depending on individual and socioeconomic situations. But there is no doubt that as a society, we are already facing a crisis that is causing huge psychological distress, and will continue to do so long after the pandemic is brought under control. This is extremely worrying when you consider how ill-equipped we were to deal with rising rates of mental health problems before the word Covid-19 was seared into public consciousness. 

Given this urgency, we welcome the publication of the Lancet roadmap. We clearly need high quality research to help address the massive mental health impacts of the Covid-19 pandemic. Understanding the role of research in addressing the mental health impact of Covid-19 needs careful consideration. Thus, the roadmap is a rapid response that needs rapid scrutiny. With this mind, we offer the following thoughts.

A call for radical collaboration. The paper is a call to arms for the mental health science community to present a united front, as opposed to “the current uncoordinated approach with a plethora of underpowered studies and surveys”. We welcome this sentiment and the acknowledgement of the role that lived experience expertise has to bring, but we would like to see this sense of collaboration extended to the whole research community. Now is the time for mental health researchers to make friends with our colleagues in emergency medicine, in public health, and those working in social care (to name just a few). Never has it been so clear how interconnected physical and mental health are. Why not create an open-access Covid-19 mental and physical health research database rather than just a neuropsychological one? Instead of designing studies from scratch, why not see what coronavirus research has already been submitted or approved and see if it is possible to nest a mental health component within that? We also need to avoid the temptation to make an unrestrained ‘grab’ for patient data without proper consent and to be efficient wherever we can. 

High ethical standards – no exceptions. The paper calls for the large scale monitoring of anxiety, depression, self-harm, suicide, and other mental health issues, drawing on existing cohorts and the creation of new ones. We appreciate the need to collect systematic, quality data but we must also think about what this real-time monitoring would actually look like and the burden it may place on people. We are told to embrace techniques that can “assess moment to moment changes in psychological risk factors”. How can we collect these data without reminding people at multiple points throughout the day that their mental health might be fragile right now? Will repeatedly questioning how anxious we are lead to more anxiety? How would this work for frontline workers? Do we have co-produced, reliable tools that we know are acceptable to the public? What’s more, this focus on symptoms risks overly medicalising understandable psychological distress. So alongside any monitoring, non-medicalised support needs to be available, including that rooted in communities, self-help and mutual aid. 

Appropriate use of people’s data. Once collected, who would own and control these data – our data? Now more than ever people’s data need to be collected and guarded under strict conditions. As well as mental health monitoring, there is much talk of using apps to track if you have symptoms, or if you are near an infected person. The benefits are fairly obvious. But there is every danger that these apps and the data that they access can be misused by commercial companies, the government, or even researchers under the cover of being necessary to ‘fight the virus’.  Fundamentally, we need to make sure that people have control over their own data, and that there is proactive agreement for data to be collected in the first place. People’s rights should never be buried in hundreds of pages of terms and conditions as they commonly are now when signing up to apps. 

A common sense approach. McPin is a specialist mental health research charity committed to improving the quality of research. However, it is clear to us that the answer to many of the problems raised currently about the nation’s mental health do not need more research. They need the application of what we know already. This is a huge opportunity for public health to increase public mental health awareness. Starting with the Five Ways to Wellbeing, developed by the New Economics Foundation way back in 2008. The whole country, indeed the world, is living with the mental health consequences of social distancing, self-isolation, furloughed jobs and financial instability, a rise in domestic violence and fears around family and friends’ health. We need to adopt self-care strategies related to good sleep, exercise and nutrition routines, and the government needs to adopt policies that support social cohesion. We need to adapt current treatments and support and make them more widely available so people in need can receive mental health care now. There are huge concerns that people in psychiatric hospitals are being forgotten and that suicide rates will rise across the community. The response to Covid-19 is more about politics and policy than it is to do with funding more academic research. 

Existing inequalities writ large. The platitude that we are all equally in this together has been debunked many times in the last week. We now have the data to show that non-white people are disproportionately effected by Covid. The paper talks about vulnerable groups and is to be commended for acknowledging groups that are often overlooked such as the homeless and incarcerated, but one notable absence is the impact on BAME communities. Mental health research too often fails to recruit diverse samples, or consider the specific needs of people from within and across different BAME communities when developing new treatments and support systems.  

Covid-19 is exacerbating existing inequalities. We need research to identify the particular mechanisms behind this, including any impact of past government policies that have hit some groups harder than others and may have increased vulnerability. This will be particularly important when it comes to the economic aftermath of the pandemic. While it would be great to think that the social security package created in response, plus the heightened awareness of the need for community connection that many are feeling (you only appreciate something when its gone), will usher in an era of greater public spending, including on grassroots and community initiatives that could really change society for the better, this is wishful thinking. The reality of a second bout of austerity is surely what faces us after we’ve faced down this crisis. We need research that will make the case for investment in the nation’s wellbeing and scaled-up mental health support everywhere – the home, workplaces, community, schools, hospitals, and prisons, but also investment to address the root causes of a lot of psychological distress, poverty, social deprivation, inequality.   

So what next?

A rapid response is needed to Covid-19 but so is the acceptance that we need to understand this crisis properly, and that will take time. New information is coming in all the time, not just from the real world experiments (both scientific and social) that are happening everywhere, but in the stories of those affected. We need to take advantage of this newfound appreciation for community cohesion, hastened by our collective realisation of society’s fragility. We need to work with the people who are more affected, and ensure they don’t get even more left behind in the new world which appears.

History says this can go one of two ways. After World War Two, we ended up with the NHS. But there are plenty of examples of global catastrophes plunging society to new depths (the Great Depression springs to mind). The only way around this is to listen to people and hear what they are saying. Not just to those who shout the loudest. At McPin, we are already working with people, trying to find out how people are disempowered (or empowered) by this pandemic in unexpected ways. We urge others to do the same. Research will be better for it.

New conversations, VR and more money for young people: looking back on 2019

Vanessa Pinfold

With the December holidays fast approaching, I am sitting on the train on the way home from work looking back on another year at the McPin Foundation. This is our seventh year as a mental health charity championing expertise from experience in research. It isn’t always easy to explain to people what we do, especially outside of the involvement and mental health spheres, as we have a highly specialised remit. Our main aim is to transform research using collaborative methodologies – especially using the expertise we gain from life experiences, including living with mental health issues.

While it is often a rollercoaster ride, with progress being made alongside significant blocks, the fantastic team at McPin has kept me and everyone else challenged, energised and focused on this key remit. This year we have done this through influencing the wider sector, delivering research ourselves and providing advisory inputs for a range of different studies. 

With the train speeding forward through early darkness, here are my 2019 highlights:

Attending the European Network for Mental Health Service Evaluation

ENMESH took place in Lisbon in June. It was great to meet international survivor, consumer and lived experience researchers. The terms we use differ but being in the same room and talking about our work brought into focus the shared aims of our work: to bring experiential expertise into the mental health mainstream.  At ENMESH, McPin had 10 pieces of work mentioned, which brought home how many partnerships we have forged recently. See our 2018/2019 infographic for the numbers, including organising 15 involvement panels, developing 46 projects and working with 13 universities.

A rather exciting and disorientating first experience of virtual reality!

While my eyes may have struggled to adapt to my new environment, I couldn’t help feel as though I was glimpsing a world of potential. This year at McPin, many of my colleagues have been involved in virtual reality projects, including gameChange, a VR therapy for people with psychosis and other studies creating digital interventions for depression and OCD. This recent blog from the gameChange team reflects on lessons learnt around delivering meaningful research involvement in virtual reality studies, as well as the challenges.

More funding for young people’s mental health

At a recent meeting of the Mental Health Research Funders forum, we got to learn an extensive amount about new research funding programmes. A body of research that stood out was research on children and young people’s mental health, which links well to our Right People Right Questions project that identified 10 research priorities. The growing emphasis on mental health, including that of young people, has been seen throughout the health sector. Wellcome Trust listed mental health research as a priority area alongside its existing neuroscience programme. UKRI (with the MRC as the lead) has announced an adolescent mental health programme, focusing on the developing mind. Our Young People’s Network contributed to research ideas at the launch workshop in November (see the photo above). The Wolfson Foundation recently awarded Cardiff University an investment to develop a centre for young people’s mental health research.

New conversations and developing older ones

Talking with the McPin team and our growing ecosystem of external peer researchers about research, involvement work, user-experience testing and co-production in research has been both personally and professionally highly fulfilling. Together, we have worked hard on finding meaningful answers through our work to questions including: How do these concepts differ? Why is it so important to distinguish engagement activities from involvement work? We believe it really is important to constantly evolve our thinking, engage in debate and test out new ways of working. We asked questions about power sharing, drawing on practical experiences such as our work in PARTNERS2. We reflected on how to involve people in public mental health research – starting with who are the public? We began plans for a podcast series in 2020 exploring collaborative methodologies.

We wish you all a restful festive season, and a special thanks to @myillumind for designing our card this year. Look out for more illustrations in our outputs in 2020!

What if family and friend carers could be equal partners in mental health care?

Vanessa Pinfold

In December I always like to spend some time looking back at the year. I recently came across my notes from an event back in October at the Royal College of Nursing to celebrate the work of Alan Worthington and the Triangle of Care programme. This is an initiative to raise awareness of and facilitate the essential role that carers and families play supporting their loved ones when they are in contact with mental health services.  

The Triangle of Care has been shaped by the hard work, dedication and passion of many people including Alan. I had not met Alan before, and as often happens when people with personal experience of schizophrenia begin to tell their story, I felt emotional and teary. Alan identified a problem – family and friend carers being let down by a system that did not sufficiently include them – and set about trying to change that, first in Devon, then nationally. Fighting powerful systems and demanding culture change is exhausting work even in a team with others. Having allies along the way helps and many of them were also in the room. 

The Triangle of Care helps NHS Trusts to better involve and support family and friend carers as ‘partners’ in mental health care. It doesn’t shy away from the difficulties of doing this in practice, be that staff attitudes or concerns about sharing information. By building on best practice, six standards have been developed for Trusts to strive towards. Trusts commit to embodying these standards by joining a membership scheme and are assessed and awarded for stage one, two and three achievements. A list of the 38 Trusts involved in the programme can be found here (updated March 2018). Is yours one of them? I wonder why all 56 NHS Mental Health Trusts in England aren’t involved. 

Dual identity

The event I attended in October was very interesting with Trusts presenting the work they were doing and talking about the six standards. Each group of presenters included one or two carers who explained why they were involved in championing Triangle of Care locally. And it needs champions, as well as sustained leadership energy, to keep it moving forwards. Two of the Trust ‘Carer Leads’ responsible for the Triangle of Care were themselves mental health carers, adding to their motivation to answer Alan’s “What if” questions for acute mental health care.

My interest in Triangle of Care comes from my own research, on carers and confidentiality many years ago while working at Rethink and the writing I did for the Caring for Carers resource with the Meridian programme. Plus, McPin’s recent brief evaluation of the Triangle of Care for the Carers Trust. We were asked to look at the implementation of the programme earlier this year and make recommendations.

It is clear that this is a very important programme, as relevant today as it was in 2010 when it launched. Those signed up to the scheme are making progress, but, as a representative from one of these Trusts explained, we still need a substantial culture change so that carers are properly supported, included and valued as ‘partners in care’. Those “What if” questions still stand.

As one carer governor said, “We are still only at the beginning of the journey, but I am proud of the work we are doing”. And this work is not easy. Our evaluation and the speakers at the event acknowledged the many challenges. These include competing priorities for staff time, the need for cross-organisation managerial support, a lack of funding and finding enough carers to involve in co-delivery.

Local implementation

Well done everyone involved in the Triangle of Care. Keep going. The work championing mental health family and friend carers continues, and your support of each other is clear to see. I hope you are sharing all your learning, resources and tools. The benefit of a programme like Triangle of Care is that the “not invented here” syndrome should not apply – you can choose how to address each standard locally and will be assessed on progress towards each goal.  

McPin will continue to work championing carers’ issues through research. Do get in touch if you have ideas on what our carer research priorities should be. And finally, a huge thank you to Alan and his family. The room was full of passionate, inspiring people (mostly carers) who have been on the Triangle of Care journey with you. That is why it was so emotional for me as an observer; the power of collective support, motivation, energy, commitment and compassion founded in difficult personal experiences.


Read more about mental health research and the role of carers: “Who will support my son when I am gone?” What needs to change for carers

Space

xmas3We have talked about the value of connections for wellbeing in our Christmas messages so far. But it’s important to remember that withdrawal from social relationships can also be a strategy for people’s wellbeing, at times. When someone we know does this, it can be easy to take it personally, or to misinterpret their actions. An important ability in managing our social relationships is understanding when someone withdraws, but could do with you reaching out, or when they just need some space for a while.

In our Community Health Networks study , while social connections were rated as very good for wellbeing by participants on the whole, they also discussed how it can be stressful maintaining social relationships, especially if you are feeling ill or low, or life is just stressful. During these times, an active wellbeing strategy can be withdrawal from relationships because it is beyond what is manageable at the time. As a result, it can be difficult to keep some relationships going, or to rekindle them. But it’s also important not to feel suffocated by relationships during stressful times. One participant talked about how he hoped he had built up enough good will during the nine months a year he was feeling ok, to see his relationships through the three months a year when he was low and so withdrew.

Case study: “Knowing when to back off, and when to turn up on the door step to give a hug and lend a ear”

Knowing when to offer a helping hand or ear to your friends or family can be tricky. You are worried about someone but they are requesting you give them time out – space. So did they mean it, or maybe it is code for “help me”? I know my standard reaction when people offer me help is “I’m fine” – it trips off the tongue so easily. I broke my finger last week falling in the street as I walked to catch the train after dropping the kids at school. A really stupid accident and when my friends offered lots of lovely help I did my usual “It’s fine, thanks we are fine” instead of accepting the lift to school. So I see the dilemma in my own reactions as well as worrying what to do when I see the mood dip of someone on facebook or a close friend experiences a mental health crisis. It is a real challenge when the support you are asked to provide is to “back off”. How long do you do that for and is that the best way to support someone in distress?

Vanessa

Vanessa

Obviously each friendship is different and a wide network of people in a friendship group offer different types of support. It’s reassuring to know when one person is the link and others can “back off” in confidence it’s helping. Christmas is a challenging time when you are living with depression and we know people need different support to get through it. This was well voiced this week by @bipolarblogger, and a news piece for @bbcouch. For me personally the biggest challenge is knowing when the signal to “back off” transfers into “show you are still there and care”. Sitting passively in the background is not an excuse to go to sleep and forget people. Findings ways to show unobtrusive support and kindness is crucial.

Practical tips

  • Christmas can be exhausting and some people need time away from socialising. It’s important to remember that this can be due to many personal circumstances, but that letting someone know you’re there for them without being overly persistent can be a valuable way to offer support. This can be a difficult balance of too much but not too little, because sometimes social contact is still worthwhile, even if someone is not in the mood.
  • Sending a text message occasionally so people know you are thinking of them maintains contact and offers the chance to plan other activities.

“Who will support my son when I am gone?” What needs to change for carers

Vanessa Pinfold

Yesterday I was in Manchester for a mental health carer conference. I was invited because I’ve been part of a research team developing and delivering a self-management programme for relatives of people experiencing first episode psychosis. The programme is called REACT and it is funded by the UK National Institute of Health Research (NIHR). The project has been led by Professor Fiona Lobban from Lancaster University and the event was part of a conversation asking: “where do we take our work next?” A pretty important question if research is going to affect change.

My involvement spans 10 years, from my Rethink Mental Illness days, and it was good to see the chair of Rethink – Phillipa Lowe – at the event. I have ensured the carer voice is part of the REACT research programme, bringing vital expertise from experience into the team, including two peer researchers who helped plan the research and spoke at the conference yesterday.

I always find carer conferences impactful and emotional. I sat down at a table with several people not knowing what conversations would occur but ready to hear some difficult things. Mental health carers come to events to meet other people and learn from each other. To share their struggles and concerns. We didn’t know each other but within minutes conversations were flowing and solutions to problems were being offered.  One women whose son lives at home and has been unwell for many years said: “I don’t know if I should say this, my main fear and that of many carers I know is what happens when I am gone. Where will my son live? Who will help him?” No one has any confidence the state will step up and deliver anything like the support they do, let alone the love. To this the table nodded, leaving the question heavy in the air. This point was brought up again from a conference speaker, another mother who had been caring for her son for over 30 years, acknowledging she hasn’t found a solution to help her mange this entrenched fear.

I think it’s important to acknowledge that there was a fair amount of frustration in the room yesterday. Carers who were part of setting up Triangle of Care asking why only 16 trusts in England have achieved stage 2 of the process (data as of March 2018). Started by carers in 2010, the Triangle of Care has been changing cultures in Trusts where implemented well. Our research looking at implementing REACT also uncovered many barriers. Carers, whose relatives are chronically unwell and have been for years, with their medication having little impact and no other treatments offered, did not find reassurance in what they heard about current mental health policy plans. The prevention agenda is a positive step forward, but what about their children chronically disabled by years of cognitive decline, poor physical health, low self esteem and stigma?

At the end of the day we sat around tables for discussions – I was part of one on research. Our table discussed what can research do to affect real change for mental heath carers? There was a wide-ranging discussion. Some issues raised do not need more research. They need money, common sense and clear leadership to implement the changes we all know are needed, with the evidence we do have from previous academic research or evaluations of local service developments. But other research ideas linked firmly to peoples’ own experience. Carers around the table wanted:

  • To enrol their son in a study about virtual reality and psychosis – providing skills to deal with difficult social situations and helping others by taking part in research too if they get randomised to the control condition
  • Research exploring the links between autism and psychosis, Multiple Sclerosis (MS) and schizophrenia, More work on genes generally and hereditary links to provide further understanding of why people may have developed their mental health problem
  • To use their own experience of mental health problems in research with one person looking to do a PhD building on her carer and personal journey in mental health
  • New intervention research – carers said “we can’t cure mental health problems so we need better support to manage them”. Research may provide hope that things can change.

For research to affect change it needs the implementation pathway to be sorted out. One point raised was a feeling among carers that mental health staff including psychiatrists are not really interested in new research findings. We are in conversation with the Royal College of Psychiatrists about this very point; we completely agree – we need to improve practitioner research literacy and interest in research.

The conference was about what needs to change. A lot. A lot needs to happen and the carers in the room will be part of the process however hard it has been for them to date. They are not giving up and will continue to challenge the systems all around them. Including us.


15/7: This blog was updated after it came to our attention that the numbers cited for the number of trusts taking part in the Triangle of Care was incorrect.

How to break down power structures in coproduced research

Vanessa Pinfold

It is Co-production Week and the theme is sharing power, something that is central to the very definition of co-produced research. According to the National Institute of Health Research,“Co-production is about working in equal partnership with people using services, carers, families and citizens. Co-production offers the chance to transform social care and health provision to a model that that offers people real choice and control”.

I was first introduced to co-production as a distinct approach for collaboration a few years ago and have not looked back since. It is an approach that we often use at McPin as it is values based and it makes sense – why wouldn’t you involve different types of expertise to improve your work? It also has the potential to dismantle unhelpful hierarchies of established practice, something that is key if you are trying to do something new, interesting and innovative. 

This isn’t easy, however, especially in research. Hierarchical power structures are everywhere. Take two examples – universities and gold standard evidence. 

  • Universities are built around power structures that include a promotion ladder for academics to professorship and head of the department roles linked heavily to demonstrating ‘research excellence’. People who make it to the top often exude a sense of power. Academics can also be found working in charities or industry but they may be less visible and less valued without the kudos that comes with working at a university on a permanent contract. 
  • Gold standard evidence refers to approaches – usually randomised controlled trials (RCTs) – that are deemed the ‘best’ way of evaluating scientific data. They are the top of the hierarchy of study design. This means that RCTs are privileged over other study designs, such as qualitative approaches that are often used in mental health research. 

These and other hierarchical structures make doing co-produced research really very difficult. Even with excellent guidance, the practice of building relationships, sharing power and valuing all types of knowledge (whether that’s from different types of expertise or different study designs) can be extremely challenging. With all the good will in the world, power structures and professional status can get in the way. I think the hardest part is sharing power and reducing personal influence over the process. This is true for everyone but particularly those with a research status such as “professor” or “doctor” – PhD or medical. 

Compromise and careful planning

In my experience, co-production in research is a learning journey for all involved. It requires everyone to give of themselves personally and professionally, often in a different way to usual. I enjoy that but not everyone does, so understanding different preferences is part of the process of building relationships and trust across the entire team. Compromise is needed, as is lots of effort and careful planning. Projects must set up mechanisms to enable shared decision making – so the “project lead” doesn’t decide everything! There should also be ways for members of a team to be mentored or trained in new research methods or approaches, be they established academics or people new to research. 

The upshot of co-production is that it is not one thing – it has to be different in every context. We must consider the people involved, the topic being researched, the setting for the study, timescale, budget and … so much more. This is a strength as it’s not a fixed framework but something to co-create with others in the team. 

I learn from the people I work with on every study how to co-produce research. Here are a few practical things I’ve found can help reduce power disparities: 

  • Rotate the roles during meetings – change who chairs each time
  • Change how a room is set up to make sure people sit in different places – you don’t want all the academics in one cluster, mental health service users and carers in another, practitioners again grouped separately
  • Use more group work and have fewer presentations, as this will enable people who don’t like speaking in front of a big audience to give their opinions more easily 
  • Have clear roles for everyone and equalise them as far as possible in terms of how much paid time people have to work on the project and what outputs are expected from everyone
  • Provide opportunities for members to develop new skills and share their own expertise. Include a budget for training.  
  • Try and keep group membership stable with a balance of backgrounds, for example, a group with 3 practitioners, 3 people with experience of mental health issues and 3 researchers (while acknowledging people can have multiple expertise).  

It’s great to see Co-production Week focusing on the topic of power. I look forward to learning from lots of other examples because although coproducing research it is not easy, it is vital. 


If you are interested in reading more about co-production in research, take a look at page 36 of our summary report of Side by Side, the evaluation of a community-based peer support project. 

For reasons why RCTs are problematic in mental health research, please see Alison Faulkner’s Talking Point paper on the subject.   

Staff publications

Dr Vanessa Pinfold – selected research publications

Larsen J, Ainsworth E, Harrop C, Patterson S, Hamilton S, Szymczynska P, Tew J, Manthorpe J, Pinfold V. (2013) Implementing personalisation for people with mental health problems: a comparative case study of four local authorities in England. Journal of Mental Health

Corker E, Hamilton S, Henderson C, Weeks C, Pinfold V et al (2013) Experiences of discrimination among people using mental health services in England 2008-2011. British Journal of Psychiatry, 202: s58-s63.

Lobban F, Glenworth D, Wainwright L, Pinfold V et al (2011) Relatives Education And Coping Toolkit – REACT.  Study protocol of a randomised controlled trial to assess the feasibility and effectiveness of a supported self management package for relatives of people with recent onset psychosis.  BMC Psychiatry 11: 100

Hamilton S, Pinfold V, Rose D, Henderson C, Lewis Holmes E, Flach C and Thornicroft T (2011) The effect of disclosure of mental illness by interviewers on reports of discrimination experienced by service users: A randomized study. International Review of Psychiatry, 23(1): 47-54.

Pinfold V, and Teasdale M (2009) The role of the voluntary sector. In Gelder (eds) New Oxford Textbook of Psychiatry, second edition. Oxford University Press: Oxford.

Pinfold V (2008) Time to change – let’s end mental health discrimination: the challenges ahead (letter to editor) The British Journal of Psychiatry, 193: 507.

Pinfold V, Rapport J, Bellringer S (2007) Developing partnerships with carers through good practice in information sharing.  Mental Health Review, 12 (2): 7-14.

Slade M, Pinfold V, Rapaport J et al (2007) Best practice when service users do not consent to sharing information with their carers: national multi-method study.  The British Journal of Psychiatry190: 148-155.

Morgan C, Burns T, Fitzpatrick, R, Pinfold V, Priebe S (2007).  Social exclusion and mental health: Conceptual and methodological reviewThe British Journal of Psychiatry, 191: 477-483.

Pinfold V, Byrne P, Toulmin H (2005) Challenging stigma and discrimination in communities: A focus group study identifying UK mental health service users’ main campaign priorities.  International Journal of Social Psychiatry, 51(2): 128-138.

Pinfold V, Huxley P, Thornicroft G et al (2003) Reducing psychiatric stigma and discrimination: Evaluating an educational intervention with the police force in England.  Social Psychiatry and Psychiatric Epidemiology, 38: 337-344.

Pinfold V, Huxley P, Thornicroft G et al (2003) Reducing psychiatric stigma and discrimination: evaluation of educational interventions in UK secondary schools.  British Journal of Psychiatry, 182: 342-346.

Pinfold, V, Bindman, J and Thornicroft, G et al (2001) Persuading the persuadable: An evaluation of compulsory treatment in the community using Supervised Discharge Orders.  Social Psychiatry and Psychiatric Epidemiology, 36:260-266

Dr Vanessa Pinfold – other publications:

Contributing author for Caring for Yourself, a self help workbook consisting of 8 booklets written in 2012 with Dr Grainne Fadden, Director of the Meriden Family Programme for Rethink Mental Illness.  The workbook is a guide for anyone who cares for someone with a mental illness, whether they are a parent, sibling or friend.

Secretariat for the Schizophrenia Commission which published The Abandoned Illness in  2012, the report of the Commission’s has year-long inquiry and consolidation of evidence on living with schizophrenia and psychosis, proposing priority actions to transform the lives of people affected by schizophrenia and psychosis.

Member of the Priority Setting Partnership on Schizophrenia for the James Lind Alliance .  The Partnership developed an agreed ‘Top 10 Treatment Uncertainties for Schizophrenia’, with input from patients, carers and clinicians, in January 2011.

Daryl Sweet – selected research publications

Pinfold V, Sweet D, Porter I, Quinn C, Byng R, Griffiths C, et al.Improving community health networks for people with severe mental illness: a case study investigation. Health Serv Deliv Res 2015;3(5)

 

We need a wider lens on equality in science than gender alone

Vanessa Pinfold

I was recently invited to attend the launch of LancetWomen, an event to mark the publication of a special edition of The Lancet journal “Advancing women in science, medicine and global health”. It was a really thought-provoking day, not least because it was hosted in one of the many buildings around London that speaks to ‘male power’ of time past – the old General Medical Centre HQ near Regents Park that is now the Hallam Conference Centre.

The opening speaker was the inspirational Caroline Criado Perez (@CCriadoPerez) who successfully campaigned to have a woman on a bank note – Jane Austin is now on the £5 note – and the first female statue in Parliament Square with Millicent Fawcett unveiled in 2018. Yes, it took until 2018 for one of 12 statues in the square to be female. Caroline’s current campaign and book exposes the absence of female-focused design and the problem of the gender-data gap in areas like car safety, where a male default is the standard for test dummies. Her talk was a fitting opening to a day of discussions that ranged from addressing inequalities of opportunity for women scientists in different countries, to how funders have a role to play in tackling the gender-gap including who sits on funding committees and who is asked to peer review protocols, to how to shift the culture of influencing or networking away from outside of usual office hours.

Prior to attending LancetWomen, I did a tally of projects I have worked on to see what the gender balance is. Currently, I am working on studies led by 11 men, 10 women and two with joint leaders. In the last few years, I have experienced a similar balance of 6 men, 4 women and 1 with a joint leader. I admit, the near balanced score card did surprise me – is mental health doing better than other disciplines? This might be the case in terms of gender but it is certainly not elsewhere. For example, the sector has too few academics from BAME communities in leadership positions. I can only think of a small number of people and this includes a few professors who will be retiring soon. This is really concerning given the complexity of mental health and how this requires diversity of experiences and thinking. One take-home message from the event is that we need a wider lens on equality in science than gender alone. Little was spoken about intersectionality with disability, sexuality, ethnicity and religion as well as considering gender and transgender.

Inspiring women

Since I am writing this blog on International Women’s Day, I have taken the opportunity to think about the women in mental health research that I know about and the impact they have. The first name that came to mind is the new head of mental health at the Wellcome Trust, Professor Miranda Wolpert, who will be responsible for a large new funding programme and whose unit at UCL recently reviewed our Right People, Right Questions top 10 priorities for young people’s mental health research.

The second was the first professor of user-led research based at the Institute of Psychiatry, Psychology & Neuroscience (IOPPN), Professor Diana Rose, whose work we draw on regularly. At McPin, we emphasise the importance of ‘expertise by experience’ and mostly this refers to experience of mental health issues. But we all have lots of different life experiences to draw upon, and I found, in particular, experiences of motherhood have helped me in my work. I have actively drawn upon these experiences in several projects including our Birth Companions study and our pregnancy and medication work. Does my gender influence the organisation I lead? Does it impact on the research we prioritise? I don’t think so in any strategic way but it might do subconsciously.

Influence and power

At LancetWomen, Professor Dame Sally Davies, Chief Medical Officer and the recently appointed master of the prestigious Trinity College at Cambridge University – the first female to hold such a post – said that in her experience, women feel more comfortable with influence than power. I was struck by that statement and I liked it although I am not sure you can untangle these two things very easily! People obviously have different leadership preferences and styles. What has always been important to me is trying my best, considering different viewpoints, apologising when you get things wrong or misunderstand and leading with integrity and passion. I will be more aware after the LancetWomen event of how important the conversation around gender bias is, the importance of male champions, and the small changes that can make a huge difference, for example, the images we choose to use. At McPin, we changed our promotional postcard image from female to male to reach out to more men as we know they are underrepresented within involvement work.


Do get in touch and tell us about who are the women in mental health science who inspire you and why. We’d love to collate these and celebrate more broadly the contributions being made across the country.

Mental health research – it is still underfunded

Vanessa Pinfold

The second mental health research funding landscape review from MQ: Transforming Mental Health is finally out! This second analysis looks at the mental health-related research grants awarded by major funders in the UK between 2014 and 2017, and builds on their initial funding landscape review which considered funding between 2008 and 2013. We know it has been a tricky project for the charity, as their paper in Lancet Psychiatry documents.

Has mental health research received more investment between 2008 and 2017? In a word, no, not in real terms when inflation is taken into account. The headline figures are:

  • Between 2008 and 2014, £115 million per year on average was spent, or £9.75 per person affected by mental health problems. This compares to between 2014 and 2017, £124 million per year, or £9.25 per person.
  • This is significantly lower than spending on physical conditions such as cancer. Between 2014 to 2017, comparator figures were £612 million per year spent on cancer research which equates to £228 per person. 
  • Investment dedicated to research focusing on children and young people accounted for 26% grants.
  • Funding is allocated to 250 universities and organisations including NHS Trusts, but the majority (59%) is awarded to just 10 institutions, and actually 37% goes to just 4 institutions – 3 in London and the University of Oxford.
  • Charity fundraising accounted for 2.7% of mental health research funding. This compares to 68% for cancer research, 41% for cardiovascular disease and 28% for dementia.
  • Very little funding is going on prevention or development of new treatments. Most is spent on underpinning research and aetiology (looking at causes).

At McPin, the report speaks to us in several ways.

Firstly, as so few resources are allocated per head of the population we need to be even more coordinated in our approach to research to reduce duplication and to prioritise studies that will make the biggest impact on people’s lives. It is not uncommon to find several research teams all working on the same topic and none of them knowing (much) about the other! We hope our Right People, Right Questions project (which provides a list of 10 top priorities for young people’s mental health research) can assist here. This study is based upon the views of multiple stakeholders including children and parents. It is good to see a greater interest in child mental health among funders, including the Wolfson Institute, and more focus on the link between mental and physical health, which calls for more research crossing the traditional discipline boundaries in medicine and social science.

Secondly, we welcome a call for a multi-disciplinary approach, and encourage the inclusion of lived experience expertise in every mental health research project. This is both using peer research methods as well as developing strategies for Patient and Public Involvement (PPI).  We would like funders to require more of mental health research teams in terms of co-production and leadership with experts by experience. This is in line with recommendations within the recent Framework for Mental Health Research produced by the UK Department of Health.

Thirdly, the concentration of mental health investment in a small number of institutions is a concern (the majority of funding, 59%, being awarded to 10 institutions and 37% of this going to just 4 institutions), as we need diversification in the sector to ensure fresh thinking and leadership. The report is UK wide but it looks like spending is concentrated in England, and in particular London and Oxford. We need to encourage more people into mental health research as researchers, research advisors and research participants from across the UK. This means maintaining these centres of excellence but investing elsewhere as well. It also requires strategies to address the lack of diversity and intersectionality in the mental health research workforce.

There are not that many funding organisations in the mental health research sector, with most grants being awarded by government funders. This limits the pool of money available but also restricts innovation and diversification into new areas of study. Each funder has its own priorities, but the sector needs different types of organisations to cover the breadth of mental health research and differences in conceptual models and support approaches. There are significant gaps in terms of types of research being prioritised, the topics invested in, and the health areas targeted. For example, very little work supports research around the diagnosis of personality disorders, itself a very problematic label, which is something we are trying to address with Words That Carry On. Eating Disorders is also poorly supported by funding. The 2018 survivor research network manifesto  calls for a greater focus on experiential knowledge in mental health research; future landscape reports could look at what methodologies are employed in research studies to track the use of recommended multi-disciplinary approaches.

Many people get involved in mental health research to provide ‘hope’ that better support and understanding will be available to future generations. This is why we need a broad base of scientific discovery, listening carefully to experts by experience and those working with them, including carers and practitioners. However, there have also been over 200 user-led organisations that have closed in the past two years making it harder for grassroots priorities, ideas and teams to get involved and develop their own research. The eight new RCUK research networks look like they will attempt do more of this, connecting with community groups and allocating grants beyond university research teams, but each of these networks has only a very small budget. All of this is important because we want the best quality mental health research produced – research that can have a practical and beneficial impact on people’s lives.

Research is only useful if it leads somewhere – to greater understanding and to practical actions that change systems, practices and approaches for the better. McPin supports the call for increased funding for research but that resource has to be well spent to achieve maximum impact. We believe there needs to be a greater tie between research produced and the impact on society. We will be discussing the MQ report and the importance of better research impact assessments with the Alliance of Mental Health Research Funders when we meet in March. And we welcome feedback from you on the current mental health research funding landscape.

Why do the Top 10 priorities for young people’s mental health need answering?

Jessica Bond

 

The Right People, Right Questions project set out to identify gaps in research on children and young people’s mental health, as identified by children and young people, parents, teachers, mental health and social work professionals, and researchers. The output is a list of the Top 10 most important questions about treatments and services not conclusively answered by research. The hope is that this list will be used by researchers, funders and policymakers to shape research on young people’s mental health over the next three years.

We revealed the questions at an event in Parliament at the end of November. Since then, staff and members of our Young People’s Advisory Group have been reflecting on the importance of the questions. Here are a few edited extracts.

 

Question 5: What interventions are effective in supporting young people on Child and Adolescent Mental Health Services (CAMHS) waiting lists, to prevent further deterioration of their mental health?

“Waiting lists are a fact of life. But it is also a fact that while you wait for treatment to begin, your mental health could be steadily deteriorating. When we reviewed the evidence for the RPRQ project, we were surprised to find that research has little to say about how to help people while they are waiting.

My suspicion is that the NHS and research funders find this a difficult matter. The topic seems to be taboo. Nobody wants to be seen to be offering an approach that may be seen as second best to the treatment and help that people are actually waiting for. But, in the meantime, people suffer.

We know that helping people on waiting lists is not easy. But there is the real possibility that if people are not helped or supported in the right way they might get worse. On the other hand, encouraging people to do something in preparation for a treatment might not be a bad thing. It could give people a kind of head start. What’s more, there is always the possibility that someone may not find the treatment or approach that they have been waiting for useful anyway. In such a case, it could even be that something they tried while on a waiting list could be of more use!

One thing is for sure: more needs to done. Let’s break the taboo surrounding research to help people on waiting lists”.

Thomas Kabir, Project Lead for Right People, Right Questions at McPin

Let’s break the taboo and find out what helps young people on waiting lists

 

Question 7: Which interventions are effective at supporting suicidal young people?”

“Following recent media coverage of student suicides, many universities have publicly stated that they are taking student mental health extremely seriously. Yet, myself, like many other students, question whether this is actually happening or being done in the most effective way.

Take the University of Bristol’s recent announcement that they are allowing academic tutors the freedom to contact the guardians of students they feel are at risk. This came after the suicide of a 19-year-old first-year English student. After his death, it became apparent that he had been missing seminars and lectures, yet at the time, none of his tutors questioned his declining performance. Bristol’s opt-in scheme is innovative and welcome, but the tragedy that precipitated its introduction encapsulates the complete failure of the student support networks that currently exist.

For a start, what is supposed to happen when the guardian is informed? Presumably they are supposed to take the matter into their own hands and sort out some non-university-based support. The bigger picture question is, why let it get to this stage in the first place? Why can’t universities think of more sustainable ways to tackle the rising rates of student mental ill health?”

Lucy Power, member of the Young People’s Advisory Group

Universities need to find ways to prevent students reaching crisis point

 

Question 8: How do family relationships, parental attitudes to mental health, and parenting style affect the treatment outcomes of children and young people with mental health problems (both positively and negatively)?

“When I look at my daughters, one niggling thought is what effect my everyday parenting decisions have had on them. Is this just me? I doubt it – the inclusion of this question in the RPRQ list suggests that people are hungry to know more.

Kathy Greenwood is a professor of Clinical Psychology and a McPin collaborator. She thinks that parents likely play a hugely important role: “Most young people tell us that parents are critical in the help-seeking process. Different parents often have different views on mental health and treatments. How parents interact and cope while supporting their child can be a further critical factor”.

In other words, this is a really important but complex area. I don’t think that lots of expensive research is the only response required. Common sense has a very important place in our parental approach. But having a greater understanding of how we, as parents, affect our children’s mental health and having access to more information on the best ways to support them would be very useful. I know it would help me sleep easier at night”.

Vanessa Pinfold, Co-founder and Research Director at McPin

Why we shouldn’t be scared to talk about how parents impact children’s mental health

 

Question 9: What are the most effective self-help and self-management resources, approaches or techniques available for children and young people with mental health issues?

“In the RPRQ workshop, where the 25 questions rated most important by the public were prioritised, the squeeze on mental health services was at the forefront of everyone’s minds. The room was divided about what, if any, role self-help and self-management techniques should play to ease the strain. Some people argued that putting too much emphasis on these approaches reduces the responsibility on services to support children and young people, unfairly shifting that burden onto the young people themselves.

I understand the controversy. But I’ve learned that recovery comes from the individual. So then the question becomes: When things are tough and we feel like we’re on fire, how do we help ourselves?

Self-management won’t work for everyone but it might help some people who have not yet reached crisis point and who are receptive to it. In my view, one overlooked tool is self-help books. I’ve gained most of my tools from books. There are some books that talk about the author’s experiences of a mental health condition, while others specialise in therapy itself. It’s essentially therapy without the therapist.

A while ago, a therapist recommended a CBT-based book for my OCD while she supported me with social anxiety. It’s difficult to compare two conditions which manifest so differently but I can honestly say that the tools I’ve acquired for OCD have been life-changing. And all from a book. Yet, I can’t say the same for social anxiety because it still interferes with my life a lot. This may be because I waited so long to be treated for the latter, but dealt immediately with the former. Self-help is readily available. Mental health services often aren’t.”

Rachel Temple, Young People’s Coordinator at McPin

Therapy without the therapist: what role should self-help play?

View the Top 10 questions here and the press release here.

Why we shouldn’t be scared to talk about how parents impact children’s mental health

Vanessa Pinfold

The Top 10 questions generated by the Right People, Right Questions project are a to-do list for researchers working on treatments and services for young people’s mental health. They are the most important, unanswered questions identified by children and young people, parents, teachers, mental health and social work professionals, and researchers. In other words, they are the questions that matter most to those most affected by a lack of treatment solutions and poor service delivery.

This blog post is part of a series responding to the questions. It focuses on Question 8: 

How do family relationships, parental attitudes to mental health, and parenting style affect the treatment outcomes of children and young people with mental health problems (both positively and negatively)?

 

I’m a mum of two girls aged 10 and 13 and I’m also the head of McPin, a mental health research charity, set up with my family. My work and personal worlds seem to be colliding more frequently these days, as my girls near adolescence and the national conversation around mental health gets ever louder. Just last week, we had the latest prevalence stats from the NHS. These revealed that 1 in 8 young people aged between five and 19 have a ‘diagnosable’ mental health difficulty. The rate was 1 in 4 for young women aged 17 to 19, with half of those who identified as having a mental health problem also revealing that they had self-harmed or made a suicide attempt.

As a parent of girls, there are lots of fears wound up in these figures. When I look at my daughters, one niggling thought is what effect my everyday parenting decisions have had on them. Small things like my tone of voice when cajoling them to help around the house or how well or otherwise I listen, support, care, build relationships and let go. Is this just me? I doubt it.

Mental health is now on our radar as a society more and more. With my professional hat on, I know that this is a good thing. But having the knowledge and skills to improve how we support our own mental health and that of others, including our kids, feels to be lagging behind our general interest and awareness of the topic.

I have no training in psychiatry, psychology, social work, occupational therapy or any discipline to guide my parenting journey – I have gone with ‘just’ common sense. I don’t read parenting books or blogs, use social media to access advice from other mums and dads, or ring helplines. So far, I’ve muddled through by chatting to friends and family, particularly to my husband, so at least it is a shared footprint that we are casting – for better or worse.

My background is in geography but I have worked in mental health research for over 25 years on things like the Mental Health Act, combating stigma, information-sharing with families and service-user involvement in research. Nothing very useful for being mum, except that it has given me a keen eye for research findings. And when it comes to the impact of different parenting behaviours or styles on your kids, my eye hasn’t been very active over the past 13 years as there hasn’t been much research published on this topic.

Despite this lack of research, I know people are interested in this topic because it was rated the 8th most important, unanswered question in the Right People, Right Questions project. Based on the public’s suggestions, the Top 10 are topics that we have judged to have been unanswered or inadequately answered by existing research. They are topics that warrant more investigation.

When it comes to Question 8, we are not starting completely from scratch. We know that trauma is a huge factor in the development of mental health problems in childhood, and that this can come from many including within the family or guardian unit. Parental mental health is another risk factor for the development of mental health problems in children, through both genetic inheritance and social factors. Parenting programmes have been shown to improve parenting and the wellbeing of children. Expressed emotion, a term used to describe the family environment and interactions in families supporting a person with mental health problems, has been well investigated. But this area is complex – there are lots of spinning parts.

Critical but neglected

The questions that came out of Right People, Right Questions were focused on mental health interventions and treatments. The fact that this question made it into the Top 10 means that we do not know enough about how parental attitudes, parenting styles and relationships within the family impact on how young people access or respond to treatments.

Kathy Greenwood is a professor of Clinical Psychology at the University of Sussex and a McPin collaborator. She thinks that these are likely important factors: “Most young people tell us that parents are critical in the help-seeking process. Different parents often have different views on mental health and treatments. How parents interact and cope while supporting their child can be a further critical factor”.

She points out that it is not just parental impact that we need to consider. We need to know more about the impact of a young person’s whole social network on their mental health outcomes. “Family relationships include the role of siblings, and other extended family, who often hold privileged information and whose views and impacts are often neglected,” she says.

In other words, this is a really important area. So why have parental attitudes, parenting styles and more generally, family relationships and their impact on treatment outcomes, received so little attention from researchers? We do not know. The McPin team who checked the existing research were surprised to find this gap. Maybe it is because public mental health research is a poor relation within the spectrum of mental health research interests. Maybe it is because we have only really started talking openly about childhood trauma, including abuse and neglect, and its contribution to mental distress in the last 5 years. Maybe there is a fear that research into this area could result in parents being blamed rather than supported.

Whatever the reasons, we are not alone in saying that researching the impact of family is important. A project called MH:2K, based on the work of 127 young citizen researchers and funded by the Wellcome Trust, recently highlighted how families need more practical mental health knowledge, as well as help to understand the challenges facing young men, and to accept and support LGBT+ young people.

I don’t think that lots of expensive research is the only response required. Common sense still has a very important place in our parental approach. But having a greater understanding of how we, as parents, affect our children’s mental health and having access to more information on the best ways to support them would be very useful. I know it would help me sleep easier at night.

 

For more information about Right People, Right Questions, including how we generated the Top 10, visit mcpin.org/RPRQ and click on the reports.

Children and Young People’s Research Priorities

Screening, suicide and support while on waiting lists: the questions children and young people want answered about their mental health…

On November 27 2018 we revealed the Top 10 most important, unanswered questions about children and young people’s mental health at a launch event in Parliament.

The Right People, Right Questions project set out to identify gaps in research on children and young people’s mental health, as identified by children and young people, parents, teachers, mental health and social work professionals, and researchers. The output is a list of the Top 10 most important questions not conclusively answered by research.

The hope is that this list will be used by researchers, funders and policymakers to shape research on young people’s mental health over the next three years. This will ensure that resources are used to address topics that matter most to those most readily affected by lack of treatment solutions and poor service delivery.

Childhood and adolescence are crucial times when it comes to people’s mental health. We know that most adults supported by mental health services had problems that emerged in childhood[1]. This is commonly reported as half of all mental health difficulties manifest by the age of 14, with 75% by age 24[2]. Last week, it was revealed that 1 in 8 people aged between five and 19 had a diagnosable mental health difficulty in England in 2017. For young women aged 17 to 19 the rate was 1 in 4, with over 50% who identified as having a mental health problem also reporting to have self-harmed or made a suicide attempt[3].

Despite this situation, young people’s mental health is under-researched. There is a lot that we simply don’t know. The Top 10 are a to-do list for researchers, compiled by people who would not only be impacted by research on this topic but who would also be the participants of any research. Involving them right at the beginning, when the priorities for future research are decided, increases the chance the findings will have real world relevance and can lead to meaningful positive change. We believe it is the first time such a list has been compiled on this topic in this way, following a standard process developed by the James Lind Alliance.

The starting point of the list was a public survey that attracted over 5500 responses from over 2500 people, including many young people, parents and teachers. These questions were categorised into themes, with the largest being questions about mental health interventions and services. Focusing on this theme, we grouped similar questions together under a single overarching question. Working with independent information specialists, we checked to see whether these questions had been adequately answered by existing research.

This left 91 unanswered questions. A second public survey, taken by 753 people, was used to prioritise these questions. The 25 questions that were rated the most important were taken to a workshop. Attendees discussed and prioritised the questions, coming up with the Top 10 questions, within the theme of interventions and services, for children and young people’s mental health.

As well as generating the most important priorities for research, the project revealed just how poor we are at getting good information about mental health into the hands of the people who need it. Of the questions submitted by the public, over half of the ones we looked into had already been adequately answered by research. People just didn’t know about it. We think this needs to change as well.

The next step is to get answers to the questions and use them to shape policy and practice. We call on research funders to fund research that addresses these priorities, and researchers to develop studies that answer the questions and include young people in the design and delivery of their research. Policymakers need to use the answers to formulate policy that leads to meaningful change.

***

“The starting point of the Top 10 was a public survey that attracted responses from a diverse range of people. This means the priorities can be seen as an insight into the nation’s psyche when it comes to the state of our children’s mental health. In other words, the list captures a snapshot of what we are anxious about. It is no surprise to see questions about suicide, the role of schools and the impact of parenting as all have a significant impact on children, families, communities and our society”. Vanessa Pinfold, Co-founder and Research Director at McPin

 

“Checking the existing science, it was interesting to see where the evidence holes were and how this matches up with public policy. For example, there is a lot of talk about screening and ‘wellbeing assessments’ in schools right now, with plenty of it assuming that it is a good thing. As question 1 shows, whether screening should be done in the first place and what the best way would be to do it, is still very much an open question. There is potential for harm if it is not done well. Another interesting area was the desire for support while people are on waiting lists (question 5). We discovered that although there is evidence on the size of the waiting lists and research on what can be done to minimise them, there is very little on how to support people while they are waiting. It is almost like a taboo to acknowledge that waiting lists exist, which results in no funding to find out what could help people while they wait for an assessment or treatment to start”. Thomas Kabir, Project Lead for Right People, Right Questions at McPin

 

“One of the messages to take away from Right People, Right Questions is the importance of involving young people in research. We can’t possibly make discoveries that have real impact without listening to, and collaborating with, the people who will be affected by the research. Throughout Right People, Right Questions, young people have been involved at every stage, from choosing the name to developing the surveys, to analysis and dissemination. Their input has made a real difference, which is what meaningful involvement is all about.” Rachel Temple, Young People’s Coordinator at McPin

 

 “We were pleased to be a funding partner in this work, supporting our commitment to research on children and young people’s mental health. We continue to fund PhDs in this area and have seen an increase in both the number and quality of applications in recent years. The Top 10 will be useful to us as we consider which children and young people’s scholarship to award in 2019”. Clair Chilvers, Mental Health Research UK

 

You can view the Top 10 questions here: www.mcpin.org.uk/RPRQ

 

[1] Jones P. B. (2013). Adult mental health disorders and their age at onset. The British Journal of Psychiatry; 202, s5–s10. doi: 10.1192/bjp.bp.112.119164

[2] Kessler, R., Berglund, P., Demler, O., Jin, R., Merikangas, K. and Walters, E. (2005). Lifetime Prevalence and Age-of-Onset

Distributions of DSM-IV Disorders in the National Comorbidity Survey Replication. Archives of General Psychiatry; 62(6):593-602. doi:10.1001/archpsyc.62.6.593

[3] NHS Digital. (2018). One in eight of five to 19 year olds had a mental disorder in 2017 major new survey finds. Retrieved from https://digital.nhs.uk/news-and-events/latest-news/one-in-eight-of-five-to-19-year-olds-had-a-mental-disorder-in- 2017-major-new-survey-finds

 

Five year forward view – a backwards step at a mental health conference.

ConferenceBy Vanessa Pinfold

I recently attended a mental health conference, reflecting on talks delivered by national policy leaders, voluntary sector providers and others exploring progress on delivering the five year forward view for mental health. NHS England, Public Health England, Department of Health, NHS mental health provider’s forum, charities were all represented.

At McPin, we often attend workshops and events and write reflection blogs to help us disseminate learning and share viewpoints on current developments in mental health and research. I thought I would be focusing on policy and evidenced-based practice elements; unfortunately, that is not this blog.

I am still coming to terms with my conference experience. An experience that put together policy updates with blatant (and inappropriate) product advertising. Commercialisation is now a routine part of healthcare – NHS, voluntary sector and the private sector – we can’t escape it. While understanding how the private sector is involved in mental health care delivery is an important policy issue, so it is good to see them involved in conferences, I was shocked to be ambushed in a plenary session at conference with maybe 300 other people (less after some walked out) with direct product advertising from one company.

I understand the role of sponsors of stands at a conference and advertising materials in a conference pack – as a delegate, you can choose to visit, read and engage or not. But after updates on critical issues such as children and young people’s mental health services, use of online talking therapies and public health local needs assessments – we were left listening to one company’s take on why they were the best in the business.

One of my key concerns and objections, was the tone and language used in this product advertisement. The presentation promoted products to protect staff because they “are often exposed to assault and violent outbursts”. We heard all about product systems to support organisations address abusive and violent behaviour from people using their service. The language emphasis in this area is usually about safety not violence and abuse. I am not saying staff don’t need to feel safe at work, of course, they do, but where was the service user perspective both in developing these products (co-design) and benefiting from gadgets that keep them safe too.

In fact, the Care Quality Commission presentation early that morning emphasised a key concern is sexual safety on mental health wards. Other people walked out of the session describing gadgets and products to protect staff. Maybe because they felt it was inappropriate too. How can a conference that is built upon a co-produced strategy for the five year forward view, focused on recovery and person-centred provision? Why I asked the organisers? Who decided on this programme?

I should explain I got a free place at the event. The agenda looked interesting and I felt it would be a good opportunity to listen to key leaders talk about progress in mental health service delivery. As a research organisation ,there is always the chance that we get lost in the detail – it’s always good to network more widely in the sector. I spoke to another attendee who commented they don’t usually attend these types of events because they are so commercial.

A lot of leading charities were sponsors and had stands. Is this the future? I really hope not. Or if it is we need guidance (values-based practice) so that all speakers and stand holders are vetted and supported to use appropriate language, including when describing staff and patient safety. We need experts by experience on the organising committees of conferences – commercial or otherwise – and employed by conference companies to ensure they get this right. There were no experts by experience speakers the morning plenary sessions.

There was lots to be interested about such as:

  • The Peer support roles being mentioned; I hope this includes leadership development for people using expertise from experience as an asset in job roles.
  • Many questions were raised about the funding of community sector mental health support that has been disappearing in recent years.
  • Patient choice was planned alongside risk assessment in some commercial companies looking to develop product solutions to support the improvement of mental health care.
  • There was a variety of case studies presented including the Amy Winehouse Foundation and Organisational development work with the police force.

However, I still feel very uneasy about commercial product advertisement in plenary sessions and a lack of co-production in any event that builds upon the five year forward view for mental health. Co-production was a founding principle of the work. I have asked the organisers for comment – no response yet! Does anyone else feel the same way?

 

Co-production in Research: Barriers and Solutions

By Vanessa Pinfold

Here at the McPin Foundation, we are pleased to support the third year of the Social Care Institute for Excellence’ (SCIE) co-production week and its focus on learning. This year has seen the introduction of co-production in research principles from INVOLVE. Below are the key principles and features in the guidance:

  •  Key Principles Sharing of power – the research is jointly owned and people work together to achieve a joint understanding
  • Including all perspectives and skills – make sure the research team includes all those who can make a contribution
  • Respecting and valuing the knowledge of all those working together on the research – everyone is of equal importance
  • Reciprocity – everybody benefits from working together
  • Building and maintaining relationships – an emphasis on relationships is key to sharing power. There needs to be joint understanding and consensus and clarity over roles and responsibilities. It is also important to value people and unlock their potential.

Key features

  • Establishing ground rules
  • Ongoing Dialogue
  • Joint ownership of key decisions
  • A commitment to relationship building
  • Opportunities for personal growth and development
  • Flexibility Continuous reflection
  • Valuing and evaluating the impact of co-producing research

In my experience it is the “how to” part that is the most difficult, reports from Australia and UK (South West England) are particularly useful giving tips and case studies as well as exploring ideas that provide a conceptual foundation.

McPin were interviewed for the INVOLVE guidance project illustrated above. We fed in our experiences of collaborative work with university departments for large multi-centre research trials of complex interventions for mental health. Something we emphasised was the importance of collaboration between three main groups: (1) service users and carers, (2) practitioners and clinicians and, (3) researchers; this is known as tri-part collaboration. We have used this model several times now for developing and delivering a research project. While it is not always easy, it does lead to work that draws on the expertise and experience of all three groups. The combined expertise of people who fall into more than one of these categories is useful in the promotion of sharing ideas and learning from each other.

One example of this in practice at McPin is research on loneliness with a team at UCL, which bloggers Angie and Jackie describe in a summary about their involvement in recruiting staff to deliver a new approach. Drawing on the example of the same study, I recently spoke about the importance of relationships and building trust within working groups. At an end of study feedback session, expertise was shared, and different contributions were valued which included:

  • The lead researchers talking about the key findings, having shared their slides in advance with other members of the research team;
  • A discussion panel that was formed involving a research team member, a person delivering the intervention and practitioner working group member.
  • Working group service user members deciding to talk about their work through a question and answer interview session, supported by some background information our co-production approach.

Nothing is perfect, and we all still have much to learn. Each project can be improved, and it is our intention to learn from each and seek to develop new ways of co-producing research. Openly discussing the barriers and looking together for collective solutions is key. Each project is different and how power is shared can be negotiated and each research project varies.

Recently I have been trying to write a paper about co-production with twenty-one authors! This is not an easy task but a very important one.  Peer review journals are not set up for collaborative writing. Who is the ‘lead’ author? And who decides on the ordering of authorship? This is not a unique challenge, but in mental health, where too often those ‘in power’ have made decisions impacting on the lives of service users and carers, with negative and oppressive consequences, this really does matter.

In our co-production paper, everyone is inputting into the writing, so should we write as a collective with no individuals named? No decisions have been taken yet. How such decisions are made in our experience is part of the co-production journey and careful thought is required. That is a familiar theme – thoughtful and careful working – because co-production in research needs to be well planned, time is needed to build and maintain relationships, honest and open conversations (difficult ones too) are necessary.

I have learnt so much in the last five years of working at the McPin Foundation and continue to do so on every research project I am involved with. Thank you SCIE for putting the spotlight on co-production. Let’s keep sharing the learning as that will improve all our work.

Object-based storytelling can help start a conversation about mental health

Kat Berry

Object-based storytelling can help start a conversation about mental health. A pop-up exhibition by the Soul Relics Museum during Mental Health Awareness week aimed to do just that using photographs of a wide range of objects that have held special significance to their owners during times of distress. The idea behind Vanessa Yim’s exhibition was that a ‘soul relic’ is an object that may have provided solace or comfort, helped recover a sense of self or simply marked a time of difficult internal struggle. As each object is unique, so is every narrative behind these objects and every person who chooses to share their story through them.

At McPin, we have been curious about this project for a while and inspired by the passion of the creator to tell stories in different ways. So we went along to the pop-up to see it for ourselves and enjoy munching some ‘depressed cookies’, baked by the talented people at the Depressed Cake Shop at the same time. Everything about this event had a twist, including how the relics had to share the exhibition space with the everyday bustle of a busy research institute. All this was set to beautiful live piano playing.

There have been several research studies focusing on the benefits of art or object-based interventions for mental and physical health (Anders et al., 2013; Lanceley et al., 2011). Feelings may be projected onto objects during important or difficult times and can carry a symbolic meaning. Objects may be used as a motivating tool or to help promote personal wellbeing.  The ideas within the Soul Relics Museum are not unconnected to other projects within the research or arts sectors but are part of a growing body of knowledge linking art to mental health.

Personal resonance

The Soul Relics Museum is an open and ongoing record of personal stories about mental health issues to which anyone is able to contribute. Once the pop-up exhibition is closed, the archive will continue to exist online and individuals can continue to contribute their photos and associated stories to the collection.

The hope is that we will look at the objects, read the stories and find connection with them. We will find one object or story resonating with us more than another. I found some of the stories upsetting, while others were uplifting or even amusing, such as the collection of over 267 TV remote controls. I think part of the uniqueness of this project is the surprising and the personal reactions we might have to another person’s difficult time.

Looking around the exhibition, I found some common threads between the stories despite the wide range of objects, including resilience. One of my favourites was 138, a photograph taken by a contributor called Sarah during a difficult period in her life. She started to go on walks and on one of these she spotted a beautiful lilac blossom growing in a parking bay. She describes it as a “metaphor for hope in bleak surroundings”.

The diversity of the objects collected and the stories behind them is one of the real strengths of the museum. All objects and stories are owned by contributors but not all are named. Contributors are also able to curate their own relic by photographing their possession and by writing the story behind it themselves. This is a break from usual exhibition practise in which a curator will interpret the object, describing it through their own lens on behalf of the viewer. Viewers have a direct insight into the personal significance of the relic though the words of the contributor, allowing them to form their own opinions.

I have kept hold of several objects myself which I associate with significant times in my life. The exhibition prompted me to mentally revisit these objects and explore my relationship with them and my reasons for keeping or discarding them.

The Soul Relics Museum continues as an online exhibition. You can view and contribute to the current collection. The plan is to become a physical museum one day so that people are able to visit, interact with and enjoy these symbolic possessions, opening up conversations about mental health further.

If you have an object of importance that you’d like to share, please spread the word and feel free contribute your own soul relic here.

Service User and Carer Involvement Research Award

Mental health research experts from across the country came together at a national awards event to celebrate the very best examples of service user and carer involvement in mental health research studies and find out the winners of the NIHR CRN, McPin Foundation & MQ Service User and Carer Involvement Awards 2018.

The McPin Foundation has teamed up with the National Institute for Health Research (NIHR) Clinical Research Network (CRN) and MQ: Transforming Mental Health, to present this year’s award. The awards ceremony, held on Tuesday 24 April, was attended by research teams, including service user researchers.

 

The awards aim to recognise the achievements of researchers who involve service users, carers and the public in each stage of the research process – from initial design and participation, to the evaluation of outcomes. The awards will also celebrate the dedication and diligence of the public who get involved in mental health studies and make a difference to the development of new care and treatments.

The awards were presented by Vanessa Pinfold, Co-founder and Research Director at McPin and Sophie Dix, Director of Research at MQ. This year, there were two joint winners:

 

EQUIP. Chief Investigator: Professor Karina Lovell

Professor Karina Lovell and her team at the University of Manchester ran a study assessing whether increased service user and carer involvement can lead to positive outcome for both healthcare systems and their users. If meaningful service user and carer involvement in care planning is to be achieved, there is a pressing need to agree and foster a system-wide, user-centred model of collaboration and involvement. The research programme aimed to address the gap between policy and practice through this programme of work – designing, evaluating, implementing and disseminating a training intervention for mental health professionals, co-designed and co-delivered with service users and carers.

One panel member commented that “The study demonstrated excellent examples of peer researcher support as well as innovative methods of dissemination.”

The panel felt that the service user-developed ‘train the trainer’ initiative for preparing health professionals to deliver the intervention, as well as service user and carer input into outcome measures, were exciting to see.

Members of the panel were impressed that participants with ‘lived experience’ of mental health problems were listed as first authors on peer reviewed journal papers. Another member of the panel commented that the “exciting methods of user-led dissemination, including use of film, fitted in well with the studies aims.”

  • Find out more about the study, here.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

PARTNERS2. Chief Investigator: Professor Max Birchwood

Professor Max Birchwood and his team ran a study assessing the effectiveness of a collaborative care model in improving both physical and mental health of people with ongoing mental health needs. The physical health of people with long term mental health conditions is often poor – and by breaking down the barriers between primary and secondary provision of healthcare, the study aims to investigate the impacts of a collaborative care model in improving wellbeing and quality of life.

The panel members were impressed that the team held Lived Experience Advisory Panels at each of the research sites, which had a clear influence on shaping the research process. Service user researchers were involved in collecting data and worked alongside research assistants during the research process.

One panel member commented that: “The integration of service user researchers within the research team came across strongly.” Another member of the panel said they “were excited to see a strong commitment to breaking down the boundaries between the service users and academic staff working on the study”.

  • Find out more about the study, here.

High commended: Engager2 – Chief Investigator: Richard Byng

The Engager programme was developed to help prisoners with common mental health problems near to and after their release. The study aimed to assess the effectiveness of the Engager programme in helping men with common mental health problems as they approach being released from prison and in the community after release.

One panel member said: “The study demonstrated creative and thoughtful ideas on how to address patient and public involvement and engagement in a very challenging context.” The panel were mostly impressed with the way the study stayed true to its values, including how the peer researcher role was to challenge and not just affirm the academic researcher’s ideas.

  • Find out more about the study, here.

 

Dr Vanessa Pinfold, Co-Founder and Research Director at McPin Foundation said:

“This important award recognises the importance of patient and public involvement (PPI) and encourages methodological innovation in how NIHR funded research studies involve mental health service users and carers in the design and delivery of health and social care research.

“Strong applications were received from teams across the country, causing difficult decisions for the judging panel. Well done to the winners that included both public advisory roles and service user researcher positions in their programmes.”

 

IMPART: Implementing an online support package for carers

What is this study?

The Implementation of a Relatives Toolkit (IMPART) project is funded by the National Institute for Health Research (NIHR) Health Services and Delivery Research programme. It is looking at how to implement a digital mental health intervention into routine clinical care. The focus of the study is an online self-management resource produced for relatives supporting a family member with psychosis, in particular, through the first episodes of psychosis. The resource, known as Relatives Education And Coping Toolkit (REACT), was written with family members and was piloted successfully. The IMPART study is led by Professor Fiona Lobban from Lancaster University and is being delivered in three NHS Trusts in the north of England and three in near London.

 

Why is this research important?

Family members, relatives and carers can play a huge support role in the lives of people managing a mental health crisis and recovery. This group of people are poorly served by mental health services and the research community. We know too little about how best to support relatives and work with them to support mental health service users. This research seeks to provide an easily accessible, evidenced-based support package for families and test how to implement it in NHS settings. This is no easy task! We are over half way through the study and there are lots of barriers to using a digital intervention for carers in the case study sites. This research will explore in detail barriers and facilitators to implementation – hopefully with wider applicability lessons than the current resource alone.

 

How are McPin involved?

We were asked to join the study because we were involved in creating the REACT resource and to support carer involvement within IMPART. We have done that by recruiting a stakeholder reference group in each of the six case study sites to support the implementation and research team. We also have peer researchers – one carer and one service user – contributing to the study on a consultancy basis.

 

What is the current status of the project?

This project started in April 2016 and ran for two years.

Read a blog by Vanessa Pinfold about her experiences at a carer conference discussing where the work should go next.

Read a blog by Sheena Foster and Julie Billsborough, peer researchers on the project, about what can be learnt from trying to implement the first digital mental health intervention in the NHS.

 

Who do I contact for more information?

For more information, please contact Vanessa Pinfold by email: vanessapinfold@mcpin.org.

Connecting People

What is this study?

This is a study about a programme called Connecting People based at the University of York and funded by the National Institute for Health Research (NIHR) School of Social Care Research. It seeks to support the development of people’s social networks as part of a mental health recovery journey. For several years, Professor Martin Webber has been working with others to create a socially-focused, impactful mental health programme. The development phase of the research involves creating resources for community mental health teams to  deliver the Connecting People programme. An observation phase will follow where data will be collected to see how the programme was delivered in practice and whether people benefited. The Think Ahead social work programme will provide the practitioners who will be trained to deliver Connecting People.

 

Why is this research important?

Social networks are important for managing mental health and wellbeing. Much of the work of community mental health teams is currently focused upon risk management, medication adherence and psychological support. Although teams want to support people to develop connections to ordinary activities and people around them, they can struggle to do so within the confines of their job roles. Connecting People seeks to change that and make it easy in routine practice for staff and service users to work together to pursue socially-focused goals that have long lasting health benefits.

 

How are McPin involved?

We were asked to join the study because of our work on wellbeing networks and interest in the Connecting People programme. Specifically, in this research, we led the stakeholder involvement programme and chaired a working group that advised on decisions made within the research team and co-produced the resources. The working group has both practitioner and service user members, although most are service users.

 

What is the current status of the project?

This project started in April 2017 and has been completed. The development phase involved working with designers based at the University of York. We produced engaging resources including a training manual, service user guide, practitioner resource kit, a website and did voiceovers for an animation of the Connecting People model. The observation phase involved using the materials in five sites.

In July 2019, members of the co-production working group reunited to talk about their experiences. Read more about this here.

Who do I contact for more information?

For more information please contact Vanessa Pinfold by email: vanessapinfold@mcpin.org

Mental Health Act Review – Our Response

On 4 October 2017, Theresa May announced an independent review into the Mental Health Act. 

In response, Vanessa Pinfold, Research Director and Co-Founder of the McPin Foundation, says:

“We welcome the review of the outdated Mental Health Act (MHA). This legislation, as it stands, creates a key barrier for parity of esteem between the treatment of physical health and mental health problems and impedes on our compliance with Human Rights Act. Involuntary detention is a powerful tool, distorting therapeutic relationships and often friend and family ones too. It has a huge impact on the lives of people detained and Government figures estimate that a shocking 180 people per day are detained under the MHA.

As a research charity, we have been considering how research might be used within this review. In our view, it is absolutely essential that lived experience and survivor knowledge is valued as part of the evidence base that is used to inform research and decisions made by policy makers and commissioners. Those directly affected by the MHA are the ones we should be the most keen to hear from during the consultation phase of the review. People for whom the MHA has the biggest impact on are often the hardest to reach – people in medium secure units, people on community treatment orders, people detained under section on inpatient wards – need opportunities to use their experiences to shape legislation of the future. Furthermore, they are not sitting around ready to attend a meeting or fill out a survey. They often are more socially excluded with reduced access to digital technology. The review group charged with this task has a big challenge if they want a truly fair, open process and adequate resources must be assigned for this massive undertaking.

The McPin Foundation is a member of the Mental Health Act Alliance (MHAA), who have been pushing for an independent review, and they recently produced research, outlining an agenda for reform. But this research was criticised for not reaching a diverse enough audience. For example, only 8% of the 61% of respondents who supplied demographic details came from black and minority ethnic (BME) communities. A worrying feat given that you are 4 times more likely to be detained under the Act if you are a black person compared to a white person.

It is also important that we look carefully into how new research will be commissioned and undertaken and how existing evidence will be used. When I worked on the 2007 Mental Health Act amendment, policy processes and research were run in parallel; with those involved hoping their conclusions would complement one another. New research commissioned to support the independent review should be commissioned in a timely fashion so the results can feed into the decision-making process, not the other way around.

It’s been 35 years since new legislation was introduced – much has changed in society since then and we need a new approach to helping people in crisis. There are international models to draw upon and many organisations, including those in the Mental Health Act Alliance, waiting to get involved. Again, let’s not forget, or undervalue, the expertise from those with direct experience of the MHA. These people and their families are seldom heard, make them the priority of the process so we can provide legislation fit for purpose.”

Operations Manager Vacancy

The McPin Foundation is recruiting for an Operations Manager! Are you a people person? Are you great at processes and systems? Do you have an excellent eye for detail? Got what it takes to inspire and enthuse others? Come and join us at McPin!

As our Operations Manager you will work successfully to deliver efficient office management and support services to our staff, volunteers and consultants. This is a key role within our charity and you will be part of our senior management team.

We’re looking for someone with experience of office management; a track record of building commitment and enthusiasm for the achievement of team goals; familiarity with HR policies and procedures; excellent interpersonal and communication skills, and a passion for mental health.

 

Interested? Please read the full job description: Operations Manager Job Description Feb 2017 

The post is full time (37.5 hours per week) based at our offices in Southwark, London.

The closing date for applications is Friday 24th February 2017, at 5 pm.

Interviews will take place on 9th March 2017.

To apply please complete the following forms and return by email to contact@mcpin.org

Application form: Application form_Operations Manager_ Feb 2017

Equal opps form: Equal opportunities monitoring form_Operations manager

If you have any questions or would like to find out more please either call 0207 922 7875, or email vanessapinfold@mcpin.org

Please ensure you address the essential criteria in your application’s supporting statement and send your form in good time to reach us by the closing date.

The McPin Foundation recognises and respects the value and diversity of all.

Using lived experience as a researcher can be “both a blessing and a curse”

Richard Currie is a researcher who is working with McPin on a number of projects that make use of both his research skills and his expertise from experience. In this brief video produced for our PPI in research week he talks with Rose about how he does this. They explore how his lived experience helps to complement his research skills and makes him a better interviewer, but also the need to sometimes put aside one’s own experiences and to look objectively at what the data is saying. These are challenges that any researcher faces, whether using a peer research approach or not.

Richard uses the term Peer Researcher to describe himself. We decided as an organisation to stop using Peer Researcher in our job titles. We encourage all our researchers to be reflexive about their lived experience in the way Richard describes, and to use a peer research methodology when it is appropriate. Our Research Director Vanessa Pinfold has blogged about how we reached that decision.

Richard Currie talks with his manager Rose Thompson about what it means to him to use lived experience in research.

Film Maker: Rose Thompson

 

What do we mean by patient and public involvement in research?

Vanessa Pinfold, Research Director

Vanessa Pinfold, Research Director & Co-Founder

Our charity is on a mission to improve the mental health of communities everywhere – through research. We obviously can’t do this alone, and thus collaborate with many others who share our goals. In the last three years, since we established our staffed research unit, we have seen some progress with the value and role of research being given greater prominence. We were really pleased that the Department of Health agreed to lead the development of a 10 year strategy for mental health research in response to the Mental Health Taskforce Report.  This is happening at the moment. A Dementia Challenge styled effort for mental health research is our goal.

This week we are looking at patient and public involvement in research. This a term familiar to academics searching for research grants. They have to explain how the beneficiaries of their project have helped to develop the rationale behind it, the plan of how to deliver it, and how they will be disseminating any useful knowledge that needs to be shared at the end.

However, patient and public involvement in research, or PPI for short, is not embedded in the work of the mental health sector. When you dig down, researchers and others have different views on what it is, how to do it well, its value, and the challenges involved. PPI is one of the key areas that the McPin Foundation champions as a strategy for improving mental health research. So it is pretty important we know what we mean by the term. So in the summer we started talking to our staff and writing a guide to PPI to use within our induction programme. We thought it might be useful for others as well.

McPin PPI Overview Front Page

McPin Foundation PPI Overview Slides

Today we publish our thinking so far.  The focus has been on defining the terms we use and thinking about how we incorporate expertise from experience, both advising on research and doing research. We have chosen to produce some slides to outline where we have got to.

The process has not been as straight forward as I’d imagined but it’s been very important for the charity. Our staff have helped us develop our thinking and we’ve made decisions based upon their recommendations. Ultimately developing any shared set of language and principles that is practical and consistent involves compromise and some over-simplification. I’m keen that we continue to question and improve how we work and the language we use, and to be challenged and learn from others. So this is very much work in progress.

Our workshop this week, ‘integrating lived experience expertise into mental health research teams’, will continue our learning. This event, the first in a series, brings together people interested in PPI in research to look at how the sector can develop this approach and methods; it provides an opportunity to reflect on current models and share learning with each other.

Stepping back to language and definitions again, a universally accepted set of definitions for key terms used to describe PPI in research has yet to emerge. This linguistic diversity is healthy. It makes visible the methodological debates that are necessary to improve how we work. However, inconsistency of language makes day to day operation as an organisation and collaborating with others difficult. As with any team we need a common language. So over the past few months we’ve talked to people about job titles – how to integrate rather than creating us and them distinctions in teams through labelling. We have also thought hard about the disclosure process – how and when to use lived experience expertise in research, the decisions researchers need to make about what and how to disclose their personal experiences, and the risks of doing so. We’ve summarised our conclusions in this slide pack.

We have made these public as we thought they might be useful for others. We hope it will help us develop further as feedback is received, and it’s important for transparency.

The McPin Foundation is keen to support the development of PPI in research. Please help us to do so.

To get in touch please email contact@mcpin.org or tweet us @McPinfoundation. Please also sign up to our newsletter.

McPin Foundation’s patient and public involvement methods week

The McPin Foundation is committed to using researchMcPin PPI Mental Health Research to improve the mental health of people in communities everywhere. We champion the role of lived experience expertise in all aspects of mental health research. We employ and work with people with mental health problems to provide advice on research and deliver research projects. We fund studentships, supporting young researchers to develop a research career in mental health. We research topics that matter most to our supporters – employment, stigma, personalised support, wellbeing, young people’s mental health and new models of care including peer support.

On Monday we begin a week of activity aimed at highlighting methods of Patient and Public Involvement (PPI) in mental health research. We will be publishing a number of new papers and contributions from our team during the week exploring how we work and the challenges it poses. They draw on our experience of trying to put our principles into practice and what we have learnt  from our friends and collaborators. What we have learnt over the past 3 years is that PPI is not easy but it is important in driving forward quality mental health research. What we have learnt over the past 3 years is that PPI is not easy but it is important in driving forward quality mental health research.

Next week we will be:

We hope you can contribute to the discussion. Do check back on our website (www.mcpin.org) for launched resources and follow us on Twitter (@McPinFoundation) or our Facebook page where we will be talking about this work.

Sad but inspiring: In memory of Donald Campbell 

 

Vanessa Pinfold, Research Director

Vanessa Pinfold, Research Director

Monday morning and I was on my way to work catching up with the news and social media. I had missed an excellent piece in the Sunday Times by Alistair Campbell about his brother Donald who died recently aged 62. Luckily it is available as a blog. Reading, I was immediately absorbed. That’s the power of the personal narrative. I also felt very, very sad. Another person dying far too early after years of treatment for schizophrenia.

About 20 years ago I interviewed 25 people in-depth about their journey living with mental illness for my PhD. I was busy transcribing when I heard one of my research participants had died. A quietly spoken man in his 60’s had collapsed suddenly, leaving a grieving family. It was my first encounter with the physical health consequences of long term psychotropic medication use and other associated factors of living with schizophrenia. Men managing a severe mental illness are estimated to die 20 years earlier than men in the general population. I went to the funeral in shock. I wanted to show my respect for someone I got to know briefly when he had generously shared his story, and for the family, particularly elderly parents, who never expected to be burying their son. Fast forward to 4 years ago, when I heard of another parent’s grief for their son, dead at 50, because of medication complications. Too many people are suffering and we are not anywhere near close to discovering better treatments.

Alistair’s account communicates a flavour of the very talented man his brother clearly was. A brother, son, friend, colleague and quite importantly a piper. It sounded like Donald lived his own way, with his “shitty illness”, with immense sense of humour and keeping his older brother in check. He worked for 27 years at Glasgow University and was making a film with his niece when he died. I am sorry we won’t get to see more of him and his ‘story’. We need more people with schizophrenia in the public eye to help dispel commonly held myths and address stigma.

“The more people read about mental illness, and talk about mental illness, the better will be our campaign for more funding, improved research and services. The more people realize that mental illness is not incompatible with doing good jobs and having a life full of potential and opportunity, the better we will all be too. Donald was not ‘a schizophrenic’. He was a man who had schizophrenia. Big difference. He refused to let his life be defined by his illness”. 

Alistair Campbell on his brother

Donald was not defined by his illness. He was loved by family and friends for being Donald. Many of the themes raised by Alistair Campbell link into research we are carrying out at the McPin Foundation. Focusing on people’s strengths and assets not deficits through work on welling mapping and social capital. The importance of employment journeys in mental health recovery and a project evaluating a programme supporting 100 people with schizophrenia into work. Evaluating the Time to Change programme  – seeking to end the discrimination and stigma  that blight the lives of too many people living with mental health problems.

We will keep raising the profile of mental health, and the contribution of people with mental health problems, through our particular focus on championing experts by experience in mental health research. We are about to start a research project that will look at how narrative accounts can help other people’s mental health recovery journey. We know we will uncover many more people like Donald Campbell who inspire hope and optimism, despite their ‘shitty illnesses’.

Join us in our efforts – sign up to receive our e-newsletter and bulletin or donate to fund our life changing research.

 

Community Navigators: Reducing loneliness in people with depression and anxiety

What is this research?

Though everyone experiences loneliness from time to time, people with mental health problems report having smaller social networks. Research has found links between loneliness and shorter life expectancy, as well as reduced rates of recovery from depression and anxiety. It is therefore important that we find out what is effective at helping people with depression and anxiety to feel more connected to others.

The Community Navigator Study involved the development and testing of a programme that connected people with persistent depression and anxiety, who experience loneliness and are receiving support from secondary mental health services, with a Navigator.

What is a Community Navigator?

The role involves:

  • Working with participants to understand their current social network and what they would like to do going forward.
  • Researching opportunities that fit people’s needs and interests.
  • Going with participants to try out activities and other social opportunities.
  • Bringing participants together at group ‘meet-up’ sessions.
  • Providing encouragement and focusing on what a participant can do, rather than focusing on symptoms and what is holding them back.

In the study, people who met with a Community Navigator had up to ten sessions over a six month period. The Community Navigators worked with people to understand their current social network and what they would like to do going forward, research opportunities that fitted with a person’s needs and interests, and accompanied participants to try out groups and other social opportunities. Participants were also given the option to attend a group with other people taking part in the study, which was run by the Community Navigators. The Community Navigators aimed to be encouraging, focusing on what people could do, rather than symptoms and what is holding people back.

What did the study tell us?

This work was a feasibility and acceptability study. This means that the number of people taking part was not large enough to tell us whether the Community Navigator intervention is effective in improving mental health problems and reducing loneliness. It did, however, allow us to test whether the study processes work (feasibility) and to explore what key stakeholders thought of the intervention (acceptability). This can be used to justify and seek funding for a larger study to test effectiveness.

READ the peer-reviewed journal article about the study published in PLoS One here.

Feasibility: We did not have difficulties recruiting to the study – recruitment of 40 participants was completed within 4 months. We also found that it was possible to retain participants in the study and 80% of people met with their Community Navigator for at least three sessions. This shows that it is possible to run a trial in this context.

Acceptability: We interviewed 32 stakeholders (25 service users, 3 family members, 7 mental health staff and 3 Community Navigators) and found that that intervention was broadly acceptable across stakeholder groups. Interviewees welcomed the idea of the intervention, describing how social connections are an area of need often under-prioritised by mental health services. Nearly all service users reported that meeting their Navigator had been a positive experience, which challenged them to do things they were not that comfortable with, such as meeting other people. They described feeling understood and valued by their Navigator and liked the fact that they were forward-looking and encouraged them to make changes. As a result of taking part, some service users reported that they were now regularly attending activities, had increased contact with other people, experienced improved mood and felt less lonely. Some stakeholders did, however, feel that the intervention was not long enough to achieve sustained change, especially when life circumstances limited the extent to which service users could engage with the intervention.

Overall, the study was feasible to deliver and the intervention was generally acceptable to stakeholders, suggesting it would be worth running a larger study to determine the effectiveness of the Community Navigator intervention for this group.

READ about what influenced people to engage with the intervention in a paper published in BMC Psychiatry:

Influences on participation in a programme addressing loneliness among people with depression and anxiety: findings from the Community Navigator Study

READ a blog from the team about how they used a coproduction approach

Successfully co-producing research!

When did the study run?

The project ran from February 2017 until June 2018, when the final report was submitted to the NIHR School for Social Care Research. We held an event to report the findings to study participants in May 2018 and a wider stakeholder event in June 2018. A paper about the study was published in the peer reviewed journal PLoS One in May 2020, and in BMC Psychiatry in November 2020.

Who ran the study?

The study was led by Professor Sonia Johnson and Dr Bryn Lloyd Evans from the Division of Psychiatry at University College London (UCL). The McPin Foundation led on the qualitative component of the study and the running of a co-production group, made up of people with experience of depression/anxiety and loneliness, staff working in the mental health services taking part in the study, and researchers. The co-production group helped develop the intervention, advised on its delivery and assisted with data analysis and reporting of the findings.

Where do I find more information?

For more information about the project, you can visit the UCL Community Navigator page. For more information about this study, please get in touch with Vanessa Pinfold: vanessapinfold@mcpin.org.

Community Navigators2, which aims to take the findings to four sites across the UK, has now launched.

#RCTDebate – what did we learn?

Our first ever public event was held on 8th October 2015 at the Jerwood Space. This was a chance to bring people with different expertise together to consider the role of the RCT (Randomised Control Trial) in mental health research design. It was also the launch of our Talking Point series of papers – a group of papers written by survivor / service user researchers on under discussed topics. Our launched paper by Alison Faulkner has a title that speaks for itself: “RCTs: the straitjacket of mental health research?

We are going to be following up points that came up in our discussion in the coming weeks. What was very clear from all who attended is this is a very important issue – not just for mental health but across the health sector. We need better quality studies and we need to talk about how to improve our methodologies.

One point raised was the place of the RCT in the hierarchy of evidence. One audience member commented how we need not to reduce the importance of the RCT but raise the weight of other approaches. What might they be? The use of routine data on population level data bases was one suggestion, particularly if data quality can be improved and bias controlled. Alison spoke about survivor research methods.

Outcome selection in RCTs is crucial – and how this happens. At the event there was lively discussion. Some felt too many trials are looking for clinical outcomes, with a strong suggestion that a co-production selection process should be encouraged. I am involved in a study where consensus methods have been used in the last month to select the primary outcome measure balancing service user and carer, practitioner and researcher expertise. The decision was quality of life which all believed was an important goal – consensus was reached. But, will the intervention we have designed shift quality of life? Time will tell.

Improving the quality of trial science was strongly advocated. We were told charities have a role in pushing forward standards and working tirelessly to ensure they are delivered. Charities do this in other health areas – where is the public and patient voice in the mental health research community on this issue? I reflect that this is best done in partnership – maybe the Alliance of mental health research charities that I chair can help.

We did try to extend the debate onto social media. Mental Elf attended and they will be posting a blog on Alison’s paper. We look forward to reading that and continuing #RCTDebate

Vanessa Pinfold, Research Director McPin Foundation

Mental health research priorities for Europe

roamer croppedThere seems to be a lot of conversations at the moment about priorities for mental health research. What should funders fund to improve the lives of individuals and communities with regard to mental health? Where are the promising breakthroughs? How can we gain parity for mental health research funding alongside other health areas? How can we ensure generated knowledge and evidence translates quickly into changes in frontline practice?

There are two important questions. How much money should be invested in mental health research? And what should it be spent on?

 

 

How much money should be invested in mental health research?

MQ landscape analysis published April 2015, built on previous work by the Medical Research Council (MRC) Review of Mental Health Research 2010 to highlight how much is spent on mental health research and what areas are targeted. The UK health research analysis 2014 from UK Clinical Research Collaboration (UKCRC) has also just been published, providing 10 years of data revealing percentage spend on mental health increasing from 4.3% in 2004/2005, 5.5% in 2009/2010 to 5.77% in 2014 but this lags behind figures documenting the scale of the health problem. The gap in 2014 was 13.66%. MQ landscape analysis shows how the UK invests about £115 million per year in mental health research but that works out as £9.75 per affected person whilst in cancer the equivalent figure is £1571 per person. In terms of public giving, for every £1 spent by government, the public gives 0.3p to mental health and £2.75 to cancer research. All these analyses are imperfect and you can identify issues with how things are categorised or organisations that have been left out, but the picture is pretty clear. Mental health research is underfunded. We have less than we need and funding comes mainly from the government and a few large trusts.

What should be the funding target? Well if we align to Disability Adjusted Life Years (DALYs) as shown in the UKCRC 2014 report, 13.66% of research spend would need a £258.99 million investment compared to the current £109.4 million – so quite a lot more.

 

What should we be spending research funding on?

This is a very important question and a difficult one to answer. Who should decide? Currently, the most democratic approaches are based on consensus methods – asking stakeholders to work together to decide; service users, families, clinicians, researchers, and policy makers. Great in theory, but institutions with budgets to allocate research funding make the final decisions. These exercises are only really feeding information in. And all organisations and people within them are bias, with strong preferences for areas of research or types of research. The challenge remains ensuring investment is spread across the prevention – service delivery – treatment – cause pathway.

Currently there is much activity around priority setting.

Firstly, there are two priority setting exercises focused on bipolar and depression, run by the James Lind Alliance: we will soon learn what 10 priorities are identified for each.

Secondly, the NHS England Mental Health Taskforce – the five year forward view will report autumn 2015 with a vision for mental health to 2020, linked to the Comprehensive Spending Review from the HM Treasury; it is working on research recommendations jointly with the Department of Health.

Thirdly, ROAMER which stands for Roadmap for Mental Health Research in Europe, and was funded by the European Union has published its findings and is promoting them.

 

It was with great interest that we read a viewpoint paper in the Lancet Psychiatry by the ROAMER team led by Professor Til Wykes. What were Europe’s mental health research priorities building on three years of consultation? Would current European pressures that can impact on mental health including economic crises and migration with thousands fleeing war and trauma seeking sanctuary be relevant within these recommendations? Published last week, this open access paper (meaning anyone can read it, you just need to register with the journal) outlines the recommendations made by a European team of researchers who have been mapping current mental health research across Europe, identifying gaps and then seeking consensus on priority areas. They came up with a list of 20 priorities, generated by 486 scientific experts and 245 stakeholder organisations across Europe. You might well ask how they decided on these priorities.

  • Did each country have to agree?
  • Did they have to build on established research that showed “progress”?
  • Did they consider timely impact on frontline practice and individual quality of life for mental health service users?
  • Did they have to be relevant for every mental health problem to go onto the list?

 

These were questions we thought of, but many would have their own check list of how to decide if something was ‘priority’ enough. The ROAMER team did too. ROAMER participants rated 151 priority areas on a ten-point scale for:

  • Relevance (likelihood that advance will result in effective intervention to improve mental health)
  • Feasibility (likelihood that the advance can be achieved)

The exercise was the most inclusive and comprehensive priority setting process ever delivered in mental health research. Building on European Science it has developed six priority areas that are very broad but actionable, and supported by high level service user input into their development.

The first one is around the theme of early intervention – Preventing mental disorders, promoting mental health and focusing on young people

The second is on understanding the development of mental health problems and causal mechanisms, including comorbidity [having more than one health problem].

The third area is about research infrastructure – building collaborative networks, sharing databases, running multidisciplinary training programmes. [Research is a complicated endeavour and it often requires a myriad of ‘support’ from different organisations such as the Clinical Research Network for it to succeed. The support necessary to make sure that research happens is called ‘infrastructure’]

Fourth, is to develop and implement better interventions using new scientific and technological advances for mental health and well-being.

Fifth, reduce stigma and empower service users and carers in decisions about mental health research.

Lastly, establish research into health and social care systems that can address quality of care taking into account local approaches.

Will anything change? The authors acknowledge that their priorities are similar to those of the past 10 years. But drivers for change include the increase in cost of mental health problems and better infrastructure to progress with genome-wide studies and next generation sequencing, alongside a policy agenda for personalised care. The paper talks about European researchers being resourced to address some of the biggest social challenges that mental health problems present, and achieving this within 5-10 years. The McPin Foundation would be keen to ensure that a multi-disciplinary emphasis extends beyond psychiatry and psychology, ensuring that other areas of mental health contribute to research agendas. The McPin Foundation would be keen to see the development of nursing research, social work research, mental health systems research, as well as cultural studies, mad studies, survivor research, health geography and public health. This means not just which topics to fund, but also invest in how we carry out research, extend and improve our methodological approaches. We champion experts by experience in order to #transformMHresearch and will continue to ask how user led priorities can best be set and implemented to influence funding bodies, governments, charities and the public.

The ROAMER team are keen for everyone to join in the debate about mental health research priorities. @TilWykes @ROAMERproject #ROAMERpaper #MentalHealth

 

Vanessa Pinfold, Research Director, The McPin Foundation.

Our news – Assessing psychological treatment services – findings from our user focused evaluation

iapt report cover croppedThis month marks an important milestone in our project evaluating an NHS England funded programme known as IAPT for SMI, as the reports on our findings have been launched, both a full report and summary – the culmination of 10 months’ intensive work here at McPin!

‘IAPT for SMI’ is an extension of Improving Access to Psychological Therapies (IAPT), a national programme which aims to allow more people with mental health difficulties to access talking therapies. In 2011, the government made a commitment to expand this programme to people with ‘severe mental illness’ (SMI), including psychosis, bipolar disorder and personality disorders. NHS England identified six demonstration sites which, building on existing provision of psychological treatments in these sites, have been piloting IAPT for SMI services since 2012.NHS England has been evaluating whether these IAPT for SMI services are effective in a number of ways. While it is important to know about the clinical results for people receiving talking therapies, it is also essential to understand people’s experiences of using them – which is why the McPin Foundation was commissioned to find out about the experiences of people accessing talking therapies in these sites. We wanted to understand what they felt helped or didn’t help them, and what they liked or didn’t like about using IAPT for SMI services. We also wanted to hear from people who had been referred to the service, but had not gone on to receive talking therapy, so that we could understand why they didn’t feel it was suitable for them, or what prevented them from accessing it.

We invited people who had used (or been referred to) IAPT for SMI services to complete a survey questionnaire about their experience. We then invited 61 of the survey respondents with a range of experiences to take part in an interview with the researchers. The interviews allowed us to ask more detail about their views and feelings about the therapy, or about why they did not end up receiving therapy.

The reports on our findings come at the same time as information from the mental health task force is published based on a survey of 20,000 people. This survey asked people how they would like things to be different in mental health services by 2020. The number one change people said they would like to see is improvements in access – followed by choice of treatments, prevention and quality of provision. Our evaluation of the IAPT for SMI pilot supports these findings – and also suggests how to achieve improvements in this area.

Overall, our research found that people were very positive about their experiences of the therapy – although some aspects of the service were experienced more negatively than others, notably waiting times, but also the process of exiting from the service. We made a number of recommendations including:

Access

  • Simplification of the referral process
  • Reduction in waiting times and provision of clear information about waiting times from outset
  • Good communication, information and support from IAPT services and others during the waiting period

Choice:

  • Clear information about what to expect from therapy and choices on offer
  • Flexibility and accommodation of individual needs

Central to our evaluation methodology was the involvement of ‘peer’ researchers with lived experience of mental health problems. The research team consisted of three peer researchers based in different parts of the country who worked closely alongside researchers at the McPin Foundation during all the different phases of the project – the design of the research materials, data collection, analysis of the data, and reporting. They were also able to liaise directly with the demonstration sites in their respective localities, to support them with promoting and distributing the survey and, at a later stage, disseminating the evaluation findings. Crucially, all of the interviews were carried out by the peer researchers on the team, as the shared experience helped build rapport with interview participants. This collaborative approach ensured that the evaluation really prioritised the views of people who have used mental health services.

This month has seen not only the publication of the final reports, but also the presentation of the research findings at two conferences. Earlier this month, Julie Billsborough and Lisa Couperthwaite, who worked on the project, presented the evaluation findings at the Lancashire Care demonstration site, and in a couple of weeks, Vanessa Pinfold will be speaking at the IAPT for SMI networking National Conference in Birmingham.

It’s not quite over yet, though, as we have also been working on an in depth analysis of the interview data and are planning to write it up as a peer review publication – allowing us to address some of the key research findings in more detail – watch this space!

Agnes Hann, Senior Researcher, The McPin Foundation.

Research into practice – reflections from a primary care event

Today I attended a learning and development event for primary care practitioners – GPs, practice nurses, information specialists. It was called HEAT – very appropriate considering the soaring temperatures brought by brilliant sunshine by lunchtime – and involved every GP practice from across one CCG (Clinical Commissioning Group).  The topic was mental health. You might have been hard pushed at lunch to recognise this as only one of the nine stands was promoting mental health directly, but leaving that aside it was great to see so many people who have such important roles to play in promoting wellbeing all thinking about mental health for an afternoon.

The opening session particularly addressed local practitioners about current changes in mental health – both local and national agendas including how funding is allocated and services join up. With the new mental health task force working away to create a 5 year forward view of the future it will be interesting to see how issues raised in local meetings such as HEAT can find their way to the task force because crucial concerns are being raised particularly about collaborative provision of solutions for people with mental health problems. How to remove the barriers between teams or system elements so that better care is provided? Can research help with some answers? I hope so. The importance of research linked to practice was mentioned several times.

Firstly, I was there because the McPin Foundation have been working in this CCG to co-produce a new model of care for people with long term mental health needs. We have been attempting to take a piece of research, and do more than write about it, by modelling a new way of working around wellbeing mapping. The good news is the Wellbeing Network was mentioned in the opening slides at the event – the CCG are on course to set up a pilot programme. And it will be evaluated and learning shared.

Secondly, the issue of medication and evidence was raised. This is topical because there is a Maudsley Debate tonight at Kings College London on “This house believes that the long term use of psychiatric medications is causing more harm than good”. An article in the Guardian newspaper on use of psychiatric drugs provides a viewpoint from Peter Gøtzsche who argues that many prescriptions cause long term damage and thus should be stopped with people being supported in other ways, but other experts strongly disagree. GPs were reminded, there is still disagreement over the evidence base for medication in mental health. It was also stressed that medication management and discharge planning needs the service user centre stage. I reflected that more work is needed to better understand the role of primary care in shared decision making. I think some of the GPs present feel they are left out of the conversation entirely, particularly on discharge planning.

We heard from a perinatal consultant who runs a service for women with mental health problems. She spoke about how the service helps women make decisions over medication use, and supports them while pregnancy and up to 3 months post birth. We know from research how vital this service is – having spoken to women with psychosis who felt they did not get the support they needed while pregnant. But the leaflet advertising this service said on the front – funded until July 2015. It made me think research evidence could help keep this service going – making the vital case for this specialism.

I left the event struggling with the McPin Foundation banner, report and leaflets into the brilliant sunshine feeling a mixture of emotions. Collaborative working has a long way to go – but it is beginning. No one has enough time to learn, reflect, plan in the NHS – there are so many pressures that an afternoon event like HEAT is precious. The importance of placing the service user centre position in all our work was emphasised – but so people experience this? Things do need to change. As one GP said visiting our stand – we do a lot of mental health work, and we are very capable of doing this as long as we can extra help for people when needed. The concern is GPs locally and across the country can’t.

By Vanessa Pinfold

Understanding psychosis and schizophrenia – new report from the British Psychology Society

Hot off press BPS reportThe end of November saw the launch of a new report by the, British Psychology Society (BPS) with the aim of challenging stereotypes of schizophrenia and psychosis. This is 14 years on from the publication of the first edition “Recent Advances in Understanding Mental Illness and Psychotic Experiences” which was a really useful overview emphasising the contribution of a psychological perspective to making sense of ‘serious mental illness’. In that time the National Institute for Health and Care Excellence (NICE) guidelines have introduced recommendations that everyone experiencing distressing psychosis be offered talking based treatments – real progress indeed even if not everyone receives them. It is really worth a read, although at 176 pages you might need to choose which sections to dive into first. Unsurprisingly, the emphasis in the report is exploring the role of psychology in understanding and responding to distress but the authors do this by stressing that their aim is to look at both the psychological and the social aspects of recovery. We need more recognition of social aspects of everyday living for managing mental health so I welcome this emphasis.

At the beginning of the report the authors address the importance of language.

“Throughout this report we have attempted to use terms which are as neutral as possible, and which do not imply that there is only one correct way of understanding these experiences”.

Language, for me personally, is the first challenge when working in mental health attempting to write in a person centred, recovery focussed framework that is sensitive to how one describes people’s experiences of distress. Individuals choose their own language, but how does the author of a research report generalise? The full title of the report is: Understanding psychosis and schizophrenia – things that others find strange, or appear out of touch with reality, and what can help. I note with interest that the title of the new report is hedging its bets including a diagnostic label and non-judgemental descriptions.

The report uses case studies from a wide variety of contributors to take the reader through a detailed landscape of lived experience expertise, research insights and clinical work. In conclusion, the report emphasises what I heard psychiatrists also talk about at a conference in London recently – that globally our actions must focus on prevention by taking measures to reduce abuse, deprivation and inequality. These are massive tasks, involving cross sector working well beyond health, but central to the goal of improving the mental health of everyone in communities across the world.

Linked to another article in this newsletter the BPS report summarises what we can learn from genetics. Our conclusions are similar – genetics plays a part but it is absolutely clear that it is not the whole answer. Leaping forward in the report to what mental health services need to do differently I found myself nodding at the computer screen in agreement as I read the report. The authors say:

  • Fundamental changes are required in how we plan, commission and organise mental health services.
  • The starting point in services should be an acknowledgement that mental health is a contested area and there is no one framework to understand it – finding the framework that helps the individual in front of you understand and make sense of their experiences and manage their distress is the key.
  • Practitioner’s roles need to shift from delivering treatment to using their professional skills gained through education, training and clinical experience to offer help and support so that individuals can better manage their problems.
  • Service structures need to allow practitioners to offer flexible support – not a standardised “package of care”.

At the McPin Foundation we are just about to get involved in a co-production service design process within a Clinical Commissioning Group (CCG) to support the development of an innovative new model of care for people with psychosis based in primary care. We hope it will deliver all of the above – watch this space! However, achieving this in practice will require lots of organisations and stakeholders applying pressure to “systems” and the creation of a driving wind of innovation because the default position is usual practice. The BPS report does not end on a pessimistic note. It’s up beat and inspiring focused upon prevention – safety, equality, non-discriminatory and oppressive practices, reducing harmful drug use and protecting our mental health. As with all reports it will generate debate and we note some criticisms of the report are already being voiced on social media, for example see the mental elf blog. You can access a full copy of the BPS report here.

Reviewed by Vanessa Pinfold, Research Director.

Community Health Networks research

We have completed the research and our report is published by the funder.

We have also published a briefing paper summarising the research

Finally we have a paper in the British Journal of Psychiatry which is open access. Our work is now focused on taking this research and implementing elements of what we learned in practice by trying to turn to personal well-being mapping process into a therapeutic process. Examples of this are within the Hounslow Wellbeing Network, Community Navigator Study, and a pilot in South London working with peer support workers who are using our personal wellbeing network mapping approach.

1.     What was this research?

This was a large study in one London Borough and a part of the South West funded through the National Institute of Health Research (NIHR) Health Services and Delivery Research (HS&DR) Programme, to map the networks of 150 people with severe mental illnesses such as schizophrenia and bi-polar disorder. The study was carried out with Plymouth University.

We used a bespoke method that mapped three levels of network; an individual’s connections to people, to places and to meaningful activities using what we called the community health network approach. An example of one person’s network is provided below. We also carried out in depth interviews to understand networks from the perspective of people with mental health problems and practitioners. A key part of the study was exploring the role of mental health practitioners within their client’s personal networks. We hope the project will add something useful to the mental health recovery literature.

An example network from our study (anonymised):

network1

“Working on the Community Health Networks project has been a fantastic experience and it has been a great team to work with, in particular I have valued the time spent with the research participants mapping and discussing their social networks. The study has been enriched by the inspiring narratives of hope people have shared with us, which have powerfully illustrated numerous ways in which people diagnosed with severe mental illness lead rich and fulfilling lives. Hopefully the community health networks methodology can be taken forwards as an important component helping to build and develop the social aspects of recovery”.  Ian Porter, lead researcher Plymouth University.

2.     Why is this research important?

Social factors are important in understanding the experience of and recovery from mental health problems.  Many people benefit from strong supportive social networks and from engagement in meaningful activities as well as physical exercise, connections through meaningful places and support from community health services. Yet people with mental health problems remain less likely to be employed, more socially isolated and with poorer physical health than the general population.

At a time when health services are reconfiguring it is important to understand what resources and assets people have in their networks and the balance of formal and informal support that people with mental health problems need and can access.

3.     What did we do?

We’ve been interested in what personal networks look like for people with mental health problems and how they are used to support health and wellbeing. We had a number of modules to the study which began in April 2011 and was written up for the funder November 2013.

1)     We interviewed around 30 organisations and stakeholders to understand local mental health policy, drivers and strategies related to personal networks.

2)     We mapped the networks of 150 people and evaluated their impact on health and wellbeing

3)     We followed up with 41 people for in depth interviews to explore the meaning of their networks and how they change over time.

4)     We interviewed 41 practitioners such as GPs, psychiatrists, care coordinators and voluntary sector staff to understand their role in developing networks

5)     We interviewed key stakeholders at the project end point to gain feedback on our findings to steer our recommendations.

Our research questions were:

  1. How do people with mental health problems use their networks to support their health and wellbeing?
  2. How do community-based practitioners and organisations support people with mental health problems to use their networks to effectively support their health and wellbeing?
  3. How do organisations work together to develop more effective networks for people with mental health problems to improve their overall health and wellbeing? What are the barriers and enablers to achieving this?

A key part of the team has been our PPI researchers who used their own experiences of mental health services to guide the research team and help us collect and analyse data. A particularly important part of the study was the commissioning of an independent synthesis process based upon personal experiences of recovery interacting with the study data.

“This has been an extremely interesting project to work on, particularly during data collection when mapping the social lives of the individuals who took part, understanding what connections are important to different people and seeing the richness that is in so many people’s lives, regardless of illness or diagnostic labels. I think the Community Health Network approach has a lot to offer the understanding of social factors in recovery from mental ill-health and I’m looking forward to taking the approach forward during the PhD I’ve just started at the University of Manchester”. Daryl Sweet, Senior Researcher, London site.

4.     What is the current status of the project?

We have completed the research and our report is published by the funder. A full copy of report is provided: FullReport-hsdr03050. It is very long so we have also produced two versions of a briefing summary on the study. One for each of our study sites:

We are currently working on writing peer review papers on this rich data set to publish.

“I am enormously proud of the team who worked on this project. We have benefitted from a committed PPI group who worked innovatively with us to help make sense of our data and write up the findings with clear recommendations. We want to take this work forward so will be looking for new opportunities to collaborate and take forward the community health network approach”  Vanessa Pinfold, Research Lead.

Our paper was published in the British Journal of Psychiatry and is open access so everyone can download and read it!

5.     What next?

We aim to deliver practical outputs from the study and in addition, our senior researcher Daryl Sweet is in his final year of a CASE ESRC funded PhD studentship to build upon the CHN study, examining how network connections support or restrict recovery from mental illness using a Qualitative Comparative Analysis approach, egocentric social network analysis and systematic reviews.  We are also looking at how to take wellbeing mapping into mental health services – used by GPs, support workers, care coordinators and individuals themselves as part of a self management approach.

6.     Who do I contact for more information?

You can contact the team via contact@mcpin.org

Reporting stigma experiences – views of practitioners, families and people living with mental health problems

In March, the Mental Health Research Network (MHRN) ran their Annual three day National Scientific Meeting in London. The scientific meeting is an opportunity for mental health professionals, researchers, service users and carers to get together and find out about the different research that is currently being supported by the MHRN. This year the theme was ‘Mental Health: Awareness, Priorities and Challenges’ and the meeting hosted a wide variety of talks on topics such as primary care, service user involvement, stigma and the Schizophrenia Commission: an independent commission set up by Rethink Mental Illness and coordinated by McPin Foundation researcher – Vanessa Pinfold.

Jessica Cotney attended the conference to present a research poster on the theme of mental health stigma and discrimination. The McPin Foundation is committed to understanding and reducing the stigma around mental health and our work focuses, in particular, on hearing about the experience of stigma and discrimination from people who experience it first-hand.

Our poster presented analysis of examples of discrimination given by three groups: people with mental health problems, their families and mental health professionals. A total of 2020 people responded to the online Schizophrenia Commission Survey and 1810 examples of witnessed or experienced discrimination were reported.

We used our Viewpoint survey work to develop a typology of stigma experiences: organisational decisions, abuse, social distancing, stereotyping, lack of understanding, dismissiveness, over-protectiveness, self-stigma and anticipated-stigma. The Schizophrenia Commission survey examples were assessed and coded using this typology. We also found that stigma occurred within a wide range of social relationships and that the type of stigma that is experienced varies by relationship. For example, abuse was a behaviour more commonly experienced from neighbours and strangers, whereas dismissiveness was more commonly delivered by family members.

“I have been refused housing because of the apparent severity of my illness. I have been turned down for jobs when I have disclosed mental illness – I will never know exactly why, but wonder about discrimination. I have experienced friends losing contact with me when they find out about my illness. I have had my experience of childhood sexual abuse denied by my family and put down to ‘delusions’ and to my illness rather than being listened to and believed”.

This research is useful for informing targeted anti-stigma initiatives such as Time to Change where tailored messages to different groups is required to tackle discrimination.

For more info see our poster  “They call him a mental case”: How different are family, service user and practitioner reports of witnessed or experienced mental health stigma and discrimination?

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