Collaborating with people with lived experience

4 things I learnt running a social group for people with psychosis

Lived experience facilitator Gill shares why social groups offer more value than they’ve been given credit for, as well as some tips for others looking to set one up

Psychosis

Collaborating with people with lived experience

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How lived experience can help revamp mental health tools

Even well-established tools can benefit from service user input found Public Involvement Lead Carolyn Asher following a recent study

Psychosis

Collaborating with people with lived experience

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Visualising Public Mental Health

Public mental health affects us all – this new tool pulls together all the connected components in one visual framework

Public mental health

Collaborating with people with lived experience

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‘It gives me an excuse to out myself’ – Jozef’s marathon story

With three weeks to go to the London Marathon one of our fab runners Jozef shares his mental health journey, why this has been a freeing experience, and the importance of self-soothing

London Marathon 2021

Collaborating with people with lived experience

Fundraising

Inclusion and combating stigma

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Suicide “postvention”: what do we know about social support?

To mark World Suicide Prevention Day, researcher Hannah Scott shares the benefits and challenges of social support after a loss to suicide.

PhD

Peer Support

Collaborating with people with lived experience

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Redesigning employment support to help not hinder

Peer Researcher Gary reflects on his involvement in the Work Well project and how it compared to his own jobhunting experiences

Employment

Collaborating with people with lived experience

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Mental health data science: “My NHS patient record is a very precious thing”

A lived experience researcher working with McPin on a ‘big data’ project discusses the hidden impact of data in their life

Data Science

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Why data science is unlocking new doors in mental health research

Data could be the key to new discoveries in mental health research – but it should be handled in the right way

Data Science

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Why we need to remove this barrier to publishing in research journals

To involve people with lived experience of mental distress in the publishing of research, simple but vital changes must be made says Dan Robotham

Collaborating with people with lived experience

Inclusion and combating stigma

Public Involvement

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

How did the Covid-19 pandemic impact different groups of young people? A member of our Young People’s Network has unearthed the data

Young People's Network

Covid-19

Collaborating with people with lived experience

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Forgotten or ignored? Safety research in community mental health services

Have your say on the safety and quality of care provided in adult community-based mental health services

Public mental health

Carers

Collaborating with people with lived experience

Improving mental health support

Public Involvement

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Imposter syndrome and work – it’s not a ‘you’ problem

A McPin senior researcher discusses how imposter syndrome is related to discrimination in employment systems, and how peer support and lived experience could counteract it

Employment

Peer Support

Collaborating with people with lived experience

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Why peer support could play a role in tackling unemployment: the Peer Support Employment Groups Evaluation

There are no easy solutions to long-term unemployment but peer support could help, says Dan Robotham

Employment

Peer Support

Collaborating with people with lived experience

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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

Employment

Collaborating with people with lived experience

Inclusion and combating stigma

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Black Thrive: The benefits and challenges of having a dual role in research

Despite its challenges, being on both the project and evaluation team can bring important and unique perspectives to the project work, says Faith Amasowomwan

Employment

Anti-racism

Collaborating with people with lived experience

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Black Thrive: Becoming a Community Peer Researcher

Although stepping out of my comfort zone was challenging, it was hugely rewarding says Davino Beckford

Employment

Anti-racism

Collaborating with people with lived experience

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“It’s fun and enabled me to identify and express my needs”: how gameChange compares to other therapies I’ve tried

Digital mental health

Collaborating with people with lived experience

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“We need to see lived experience as a strength rather than a risk”

Collaborating with people with lived experience

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Successfully co-producing research!

The Community Navigator study is one of the best examples of co-production in research that McPin has been involved in. Here the team reflect on what worked so well.

Coproduction

Collaborating with people with lived experience

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We often discuss why lived experience improves research quality, but what about the ‘how’?

Rachel Temple reflects on how she has used her lived experience of mental health issues to inform her work with young people in mental health research over the last three years

Collaborating with people with lived experience

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The importance of involving people in digital mental health research

Digital mental health products need to have user involvement at the core, says Anja Hollowell

Digital mental health

Collaborating with people with lived experience

Public Involvement

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How to make partnership working across sectors effective

Partnership working offers great benefits but also presents challenges. Here are our reflections on how to make it a success from a partnership between the mental health and women’s sectors

Coproduction

Collaborating with people with lived experience

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“I belong here as much as anyone else, having lived my field of expertise 24/7 for 17 years”

Being a Lived Experience Practitioner allows me to use my past experiences to bring about change but there is still much to be done to appropriately value these roles going forward, says guest blogger Ellie Wildbore

Collaborating with people with lived experience

Public Involvement

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Using a peer research approach to evaluate women-led peer support

Peer research not only enriched the findings from the Women Side by Side evaluation, but it also brought mutual benefits to everyone involved, says Tanya MacKay

Women

Peer Support

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Women Side by Side has helped raise awareness of mental health in a BAME community

Evaluating and facilitating a women-led peer support programme as a peer meant that Fozia Haider was able to experience the benefit of the approach first-hand

Women

Peer Support

Collaborating with people with lived experience

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Overcoming imposter syndrome as a peer researcher

Our blogger reveals how her experiences of observing women-led peer support groups during the Women Side by Side evaluation helped dispel fears of feeling like a fraud

Women

Peer Support

Collaborating with people with lived experience

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Women Side by Side shows what can happen if women are given the space to grow

Naima Iqbal shares her experiences of evaluating a women-led peer support programme, including how spending time with the women helped her own confidence to grow

Women

Peer Support

Collaborating with people with lived experience

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Involving peers can enrich research when it’s done right

What factors are important for peer researchers to have in common with research participants? We asked Sarah Markham, an advisory group member, about her involvement in the evaluation of Women Side by Side

Women

Peer Support

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Finding the right people to ask the right questions: new survey on young people’s mental health  
by Thomas Kabir

What do we really know about young people’s mental health? We know it’s a big issue. Around 1 in 10 young people have experienced a mental health difficulty. Around 75% of people with a mental health problem start developing it before the age of 18¹.

Children, young people and families

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Using Lived Experience in Evaluating Mental Health Peer Support
by Andreja Mesaric | Julie Billsborough | Raj Hazzard | Richard Currie | Sarah Gibson

This essay was originally published as the afterword to the early research findings of the evaluation of the Side by Side programme. In it the researchers who used their lived experience of mental health problems and peer support whilst working on the evaluation reflect on how including that expertise from experience strengthened the research. 

Collaborating with people with lived experience

Research methods

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Our Evaluation News

 

Over the last few weeks we’ve been giving our website a bit of a spring clean. As part of that we’ve added a new page showcasing the work we do for partner organisations including our work on evaluations. This is a growing part of what we do, helping other organisations to understand what impact their work is having and how it can be improved.

Collaborating with people with lived experience

Research methods

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Expertise from Experience in Peer Review – Dolly’s Experience
by Dolly Sen

Earlier in the year MHRUK asked for our help in reviewing applications for three PhD Studentships. They wanted to strengthen the peer review process by including reviewers who could contribute their expertise from experience. We asked Gary, Dolly and Ryan to reflect on their experience of acting as reviewers, and we publish their blogs here.

Collaborating with people with lived experience

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Expertise from Experience in Peer Review – Gary’s experience
by Gary Coyle

Earlier in the year MHRUK asked for our help in reviewing applications for three PhD Studentships. They wanted to strengthen the peer review process by including reviewers who could contribute their expertise from experience. We asked Gary, Dolly and Ryan to reflect on their experience of acting as reviewers, and we publish their blogs here.

Collaborating with people with lived experience

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Research in 2016
by Agnes Hann | Johanna Frerichs

To mark the end of 2016, we’re taking a look back at some of what the McPin team has learned over the past year.

Collaborating with people with lived experience

Research methods

Wellbeing and connectedness

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Expertise from Experience in Peer Review – Ryan’s Experience
by Ryan Freeman

Earlier in the year MHRUK asked for our help in reviewing applications for three PhD Studentships. They wanted to strengthen the peer review process by including reviewers who could contribute their expertise from experience. We asked Gary, Dolly and Ryan to reflect on their experience of acting as reviewers, and we publish their blogs here.

Collaborating with people with lived experience

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McPin Methods
by Ian Bradshaw

The 30th of November saw the first of what we will hope will be a series of methods workshops. It brought together over 70 researchers to discuss how to integrate ‘lived experience expertise in mental health research teams’. The event was massively oversubscribed and if the fact that we had to cut short discussions before we were physically kicked out of the venue is any guide, it succeeded in its aim of stimulating debate and the sharing of ideas.

Collaborating with people with lived experience

Public Involvement

Research methods

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Influencing the debate – peer research in academic journals
by Sarah Hamilton

A new special edition reporting findings from the Viewpoint survey was published in July. It includes a paper on our qualitative research into mental health discrimination experiences which was co-authored with four peer researchers. We reflect on the importance of experts by experience being named as authors, and why they are so often absent from peer reviewed journal articles.

Collaborating with people with lived experience

Inclusion and combating stigma

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Getting our Report Card – asking people what they think of you and acting on their responses, the Your Experience in Mind Survey
by Madeleine Musgrove

Research and Evaluation Officer, Mind

Mind have been working together with the McPin Foundation since 2014 to evaluate the experience of people using our federated local Minds through the annual ‘Your Experience in Mind’ survey. We have 146 local Minds across England and Wales providing over 50 different types of service.

Collaborating with people with lived experience

Improving mental health support

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Why did I take on the work with the McPin Foundation?
by Gary Coyle

In March this year I took on an exciting opportunity: working with The McPin Foundation as a Peer Project Assistant on a pilot scheme entitled ‘My Story, Our Future’. We will be exploring the stories of people who have themselves used or supported others accessing Early Intervention for Psychosis (EIP) services. 

Collaborating with people with lived experience

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Peer Research and Complex Needs: A Mental Health Perspective
by Agnes Hann

Read a new blog about how research on people with complex needs are using an approach that we champion at the McPin Foundation – peer research. Written by Agnes, a senior researcher in our team, it looks at some of the challenges and benefits of peer involvement in research. It was written for Revolving Doors, a charity that supports people with complex needs including mental health issues. We are really proud to support their work exploring the role of peer - otherwise known as experts by experience - contribution to research.

Collaborating with people with lived experience

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Reflections from working on an evaluation project: Your Experience in Mind
by Julie Billsborough

We are keen to look at new ways of involving mental health service users and carers in research. Part of our commitment to developing new approaches has been to investigate the things that have worked well and not so well about the methods we have tried in our own research and evaluation studies. We will publish a series of methods papers describing our work. Our first methods paper describes the 'Survey Champion' approach used in an evaluation of Local Minds.

Collaborating with people with lived experience

Improving mental health support

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Reflections from 10 years of service user and survivor research event
by McPin Foundation

On Monday (1st June, 2015), St George's University of London celebrated 10 years of doing service user and survivor research with a fantastic day of discussions attended by many inspirational leaders in mental health research, from a lived experience perspective. Three of us from the McPin Foundation attended. In one of the sessions, Sarah Carr, Peter Beresford, Diana Rose and Jayasaree Kalathil reflected on the place of collaborative and survivor research in Universities. Is it safe in universities?    

Collaborating with people with lived experience

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Does service user involvement in research make a difference?

A major interest of the McPin Foundation is how service user and carer involvement in mental health research, reaching beyond taking part as participants, improves any project. It is a topic that is of interest to research funders as well, with programmes of research being commissioned by the NIHR to answer this question.

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Doing PPI better: why we are always learning
by Sarah Hamilton

Last week, I attended a fantastic conference on Patient and Public Involvement in Exeter, organised by the South Peninsula CLAHRC.

The conference was a very inspiring event with a wide variety of researchers, practitioners and people who have used health services and are engaged in Patient and Public Involvement (PPI) in research.

Collaborating with people with lived experience

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