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Black Thrive Employment Project

Work Well

Investing in local employment projects and offering tailored support and coaching

REPORT: Work Well Report

BLOG: Redesigning employment support to help not hinder

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Thrive London

A study on the experiences of Londoners affected by serious mental health problems who are in work or looking for a job

REPORT: Thrive London

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100 People

Evaluating specialist employment support to people with schizophrenia or bipolar disorder

REPORTS:

100 People Project final report

100 People Project summary report

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The TOGether Project

Evaluation of a suicide and self-harm intervention

BLOG: A lifeline in limbo but what will become of it?

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Blogs

Work Well: Redesigning employment support to help not hinder

NICE mental health clinical guideline development groups

Group type: 3. Institution or initiative-specific

Contact details: 

There is no specific contacts but more information about this process can be found on www.nice.org.uk/about/nice-communities/public-involvement

Email address:

For general enquiries about involvement in NICE guideline email PIP@nice.org.uk

To contact the NCCMH, email NCCMHAdmin@RCPsych.ac.uk

Twitter: @nicecomms

Telephone: +44 (0)300 323 0140

Address:

National Institute for Health and Care Excellence
10 Spring Gardens
London
SW1A 2BU

Remit of the group

These are Expert Advisory Groups for NICE guidelines.

To see positions available see www.nice.org.uk/Get-Involved/join-a-committee, part way down the page, under “Patients, service users, carers and lay people”.

This is not a single research group as such. NICE’s role is to improve outcomes for people using the NHS and other public and social care services. To do this, NICE develop a large range of guidance based on the available research evidence on the topic.  NICE’s collaborating centres (NCCs) help develop guidelines by harnessing the expertise of the royal medical colleges, professional bodies and patient/carer organisations. Every guideline in development has an expert group, called the Guideline Committee which includes 2-3 service user or carer members.

There are always 3 service users and/or carers on each group. If it is not possible to have service users on groups, for example if they are children, then there will still be 3 service user and/or carer representative and an additional focus may be held with children.

NICE mental health guidelines are developed by the National Collaborating Centre for Mental Health (NCCMH) which is a partnership between the Royal College of Psychiatrists and the British Psychological Society. So far, over 30 mental health guidelines have been developed and 2-3 new ones begin each year.

Frequency of meetings

Guideline committees meet for a full day approximately 12-15 times over a 20 month period, after which the final guideline is published.

Who can consult the group?

Since health and social care professionals are well represented within the Guideline Committees, the NCCMH has an interest in service users (people who have a relevant condition or disability) and carers (family and friends who provide unpaid) without a background in health or social care.

Service users and carers are full members of the guideline committee having equal status alongside the professional members, and supported by the NCCMH technical team. Service users and carers have an integral part to play in the guideline development process by ensuring that their experience informs all facets of the guideline.

Their experience of a particular mental health problem and its treatment means that they can contribute to discussions within the Guideline Committee about appropriate terminology, issues about diagnosis and stigma and adverse effects of treatment. They might contribute to writing sections of the guideline, including reviews of the experience of care. There is standing item on the agenda for each committee meeting to discuss servicer users’ and carers’ concerns and NICE’s Public Involvement Unit provides training and support for service users and carers working on NICE guidelines.

As well as being represented on the Guideline Committee, service users and carers can register as stakeholders (see www.nice.org.uk/get-involved/stakeholder-registration) and participate in consultation processes throughout the guideline development process.

The opportunity to engage directly with the guideline development process commences with a stakeholder workshop and consultation process to define the scope of the guideline for each topic.

The Guideline Committee assesses the available clinical and health economic evidence, use their expert clinical judgement and experience when evidence might be lacking and ensure that the needs of service users and carers are incorporated into the guideline. During this process, focus groups of service users and carers may be formed to provide specific guidance to the Committee that will inform the recommendations in the final guideline.

At a later stage, registered stakeholders are invited to comment on the draft version of the guideline. Each comment is considered and a response provided during these consultation processes.

At the conclusion of the guideline development process, information for the public and specific resources are developed and published alongside the guideline and are available on the NICE website.

Website

For more information about this process see www.nice.org.uk/about/nice-communities/public-involvement

For positions currently available see www.nice.org.uk/Get-Involved/join-a-committee

Publications

Taylor, C., Richens, Y., Shaw, F. & Evans, P. (2006) The Contribution of patients and the public to the NICE guideline. Midwives: The Official Journal of the Royal College of Midwives, 9, 390-391.

Harding E, Pettinari CJ, Brown D, Hayward M, Taylor C. Service user involvement in clinical guideline development and implementation: learning from mental health service users in the UK. International Review of Psychiatry. 2011;23:352-7.

Kendall T, Crawford MJ, Taylor C, Whittington C, Rose D; Guidance Development Group. Improving the experience of care for adults using NHS mental health services: summary of NICE guidance. BMJ. 2012;344:e1089.

Guidelines Published

Service user and/or carers were on GDGs of all of the following: All obtainable from www.nice.org.uk/guidance/published?type=CG#/guidance/published?type=cg. The column on the far right links to the GDG for each guideline, if you wish to see who the service user and/or carers were.

Guideline Publication date GDG
Antenatal and Postnatal Mental Health (update) Dec 2014 CG192
Bipolar (update) September 2014 CG185
Psychosis and Schizophrenia in Adults (update) March 2014 CG178
Autism in Children & Young People August 2013 CG170
Social Anxiety Disorder May 2013 CG159
Conduct Disorder in Children and Young People March 2013 CG158
Schizophrenia in Children and Young People January 2013 CG155
Autism in Adults June 2012 CG142
Service User Experience December 2011 CG136
Self-harm: longer term management November 2011 CG133
Common mental health disorders: Identification and pathways to care May 2011 CG123
Psychosis and Substance Misuse March 2011 CG120
Alcohol Dependence and Harmful Alcohol Use February 2011 CG115
General Anxiety Disorder January 2011 CG113
Depression – Chronic Health problems October 2009 CG91
Depression – Primary and Secondary Care October 2009 CG90
Borderline Personality Disorder January 2009 CG78
Antisocial Personality Disorder January 2009 CG77
Attention Deficit Hyperactivity Disorder (ADHD) September 2008 CG72
Drug Misuse – Opioid Detoxification July 2007 CG52
Drug Misuse – Psychosocial Interventions July 2007 CG51
Antenatal and Postnatal Mental Health (APMH) February 2007 CG45
Dementia November 2006 CG42
Obsessive-Compulsive Disorder (OCD) October 2005 CG31
Depression in Children and young people September 2005 CG28
Post-Traumatic Stress Disorder (PTSD) March 2005 CG26
Self-Harm July 2004 CG16
Eating Disorders January 2004 CG9

 

Guidelines in Progress

Service user and/or carers are on GDGs for all of the following: All obtainable from www.nice.org.uk/guidance/published?type=CG#/guidance/indevelopment?type=cg. The column on the far right links to the GDG for each guideline, if you wish to see who the service user and/or carers were.

Guideline Publication date GDG
Violence and Aggression (update) April 2015 Link
Challenging behaviour and Learning Disabilities May 2015 Link
Children’s Attachment Oct 2015 Link
Mental health problems in people with learning disability Jun 2016 TBC
Mental health of people in prison Dec 2016 TBC
Eating Disorders (update) TBC TBC
Depression in Adults (update) TBC TBC

 

 

PARTNERS2, LEAP (Lived Experience Advisory Panel), Lancashire

Group type: 2. Project-specific

Contact details

Named contact: Ruth Sayers

Email address: ruthsayers@mcpin.org

Telephone: 0117 965 1515 / 0754 691 0723

Address:

The McPin Foundation

32 – 36 Loman Street

London

SE1 0EH

Remit of the group

PARTNERS2 aims to enable Primary Care and community based mental health services to work more closely together and to develop a model of care to allow selected individuals with severe mental illness to be managed in primary care with secondary care support.

We are recruiting three Advisory Panels of people, one of which is located in Lancashire, who have personal experience of living with diagnoses of schizophrenia or bipolar (as a service user or a carer) and are interested in how mental health research is done. Payment and training will be provided.

Members of the Advisory panel need to have lived experience of bipolar disorder or schizophrenia, or are carers of people with these diagnoses.

Frequency of meetings

Quarterly from autumn 2014 – spring 2017

Who can consult the group?

Researchers on the PARTNERS2 research project.

Website

www.birmingham.ac.uk/research/activity/mds/projects/HaPS/PCCS/partners2/index.aspx

Publications

www.birmingham.ac.uk/Documents/college-mds/haps/projects/Partners2/Bham-PPI-poster.pdf

More about the group (optional)

This new research programme funded by the NIHR Applied Health Programme aims to develop better ways of supporting people with severe mental illness within GP practices.

Spectrum Advisory Panel, Lancaster University

Group type: 3. Institution or initiative-specific

Contact details

Named contact: Chris Lodge

Email address: c.lodge@lancaster.ac.uk

Telephone: 01524 59 49 50

Address:

Spectrum Centre for Mental Health Research

Division of Health Research

Lancaster University

Lancaster

LA1 4YG

Remit of the group

Mental health (bipolar disorder)

Frequency of meetings

Every 2 months for 3 hours (including a lunch break)

Who can consult the group?

Researchers within the Spectrum Centre.

Website

www.lancaster.ac.uk/shm/research/spectrum

Publications

N/A

More about the group (optional)

The group consists of 10 – 12 members who have lived experience of bipolar disorder (themselves or as a carer). The aim of the group is to advise and support the work of the Spectrum Centre.

PARTNERS2, LEAP (Lived Experience Advisory Panel), Devon

Group type: 2. Project-specific

Contact details

Named contact: Ruth Sayers

Email address: contact@mcpin.org

Telephone: 0207 922 7877

Address:

The McPin Foundation

32 – 36 Loman Street

London

SE1 0EH

Remit of the group

PARTNERS2 aims to enable Primary Care and community based mental health services to work more closely together and to develop a model of care to allow selected individuals with severe mental illness to be managed in primary care with secondary care support.

We have three Advisory Panels of people, one of which is located in Devon, who have personal experience of living with diagnoses of schizophrenia or bipolar (as a service user or a carer) and are interested in how mental health research is done. Payment and training will be provided.

Members of the Advisory panel need to have lived experience of bipolar disorder or schizophrenia, or are carers of people with these diagnoses.

Frequency of meetings

Quarterly from autumn 2014 – spring 2017

Who can consult the group?

Researchers on the PARTNERS2 research project.

Website

www.birmingham.ac.uk/research/activity/mds/projects/HaPS/PCCS/partners2/index.aspx

Publications

www.birmingham.ac.uk/Documents/college-mds/haps/projects/Partners2/Bham-PPI-poster.pdf

More about the group (optional)

This new research programme funded by the NIHR Applied Health Programme aims to develop better ways of supporting people with severe mental illness within GP practices.

“Wrestling some power back for the women”: My experiences researching medication decision-making in pregnancy

Charlotte Walker

A few years ago, while browsing Twitter, I came across a request for service user involvement in a research project. The McPin Foundation was seeking women of childbearing age with a history of severe mental illness to work on a study into women’s choices about medication use during pregnancy.  The project interested me because I have long had an interest in maternal mental health. I also take antipsychotics and mood stabilisers for bipolar disorder so I understand the nature, purpose and impact of psychotropic drugs. I decided to apply despite having no experience in research and was delighted to be selected. 

I knew nothing of the McPin Foundation and was pleasantly surprised to find that the study was to be a genuinely collaborative effort between McPin researchers, academics from UCL and four service users. Service user involvement took two forms. Firstly, as the driving force behind the study design and data collection on the qualitative arm of the project; and secondly as a Lived Experience Advisory Panel (LEAP) helping to “shine a light” on the findings of the quantitative arm of the study

Shifting perceptions

It was exciting to work on a project where my lived experience was accorded value and I felt that the service user sub-team was able to shift academics’ perceptions of how to view the data. For example, the academics had drawn up a list of adverse pregnancy and birth outcomes to record rates for women who take medication while pregnant compared to those who don’t. While the LEAP was also concerned about issues such as preterm birth, low birth weight and other obstetric outcomes, we were keen to provide the perspective of childbearing women with a severe mental illness. Adverse outcomes for this group might include admission to a mother and baby unit, detention under the Mental Health Act, difficulties in bonding with the baby, and so forth. My impression was that our viewpoint was a surprise to the academics, which meant we had done our job of introducing a new perspective on the work. This was highly important. Despite the centrality of our experiences to the project, I was keenly aware that there was a hierarchy at work, with team members employed as academics or researchers having a level of status and power we service users could not attain. I saw my role as wrestling some of that power back for the women participating in our study, and for the wider community of women service users. 

On the qualitative side, we service users developed the study, writing the protocol and deciding on the approach. Drawing up the schedule of questions for the semi-structured interviews was fascinating. It was our chance to contribute views on what might be significant concerns for women having to make what were sometimes very difficult decisions about whether to take medication during pregnancy. We understood from our experience that a range of people, from psychiatrists to family members, have strong views over whether and when psychotropic medication should be used, and as a mother of two children, I was also acutely aware of the way in which people often feel able to offer unsolicited advice to pregnant women. 

Peer to peer

It was decided that where possible data collection would be conducted by a pair of service user researchers. One person would conduct the interview and one was there for support and note taking. We met with a supervisor from McPin immediately after the interview for a debrief and after a period of reflection, we supplied field notes. 

We were privileged to be invited into the women’s homes for the majority of the interviews. We were always clear from the outset that we had lived experience of a severe mental illness and built into the interview schedule a question about whether it had made a difference to the participant’s experience of the conversation knowing that we were also service users. The reaction to our disclosure was highly positive. 

As collectors of the data, the service user researchers subsequently felt very protective of it. The intensity of the experiences shared by the participants, and our own lived experience, meant that a bond was forged with the women we worked with, even within the very short time it took to conduct the research interview. Later on, some tensions emerged about how the data was used and by who. As someone who is deeply embedded within the online mental health community, I found it difficult to be patient when it came to the dissemination of the findings. My natural impulse was to immediately share insights and their implications with as wide a spread of women and professionals as possible, and the process of writing up a study, submitting it to a journal and then going through the peer review process felt lengthy and cumbersome.

It is with great satisfaction, therefore, that I greet the publication of our paper. My hope is that it will give professionals some insight into the complex and nuanced decision-making that pregnant women must negotiate around psychotropic medication, and show how any decision is a crucible for the women’s concerns, hopes and fears. 


Read the peer reviewed paper here. Download an illustration of the main messages below.

If the messages resonate with you, please consider printing the illustration and asking your local health centre to display it. If you are a teacher of practitioners in this field, please consider using it as a teaching aid.

PARTNERS2, LEAP (Lived Experience Advisory Panel), Birmingham

Group type: 2. Project-specific

Contact details

Named contact: Ruth Sayers

Email address: ruthsayers@mcpin.org

Telephone: 0117 965 1515, mobile: 0754 691 0723

Address:

The McPin Foundation

32 – 36 Loman Street

London

SE1 0EH

Remit of the group

PARTNERS2 aims to enable Primary Care and community based mental health services to work more closely together and to develop a model of care to allow selected individuals with severe mental illness to be managed in primary care with secondary care support.

We are recruiting three Advisory Panels of people, one of which is located in Birmingham, who have personal experience of living with diagnoses of schizophrenia or bipolar (as a service user or a carer) and are interested in how mental health research is done. Payment and training will be provided.

Members of the Advisory panel need to have lived experience of bipolar disorder or schizophrenia, or are carers of people with these diagnoses.

Frequency of meetings

Quarterly from autumn 2014 – spring 2017

Who can consult the group?

Researchers on the PARTNERS2 research project.

Website

www.birmingham.ac.uk/research/activity/mds/projects/HaPS/PCCS/partners2/index.aspx

Publications

www.birmingham.ac.uk/Documents/college-mds/haps/projects/Partners2/Bham-PPI-poster.pdf

More about the group (optional)

This new research programme funded by the NIHR Applied Health Programme aims to develop better ways of supporting people with severe mental illness within GP practices.

Share

xmas3When you’re facing difficulty or stress in your life, social support from others can be one of the most important resources to draw on in order to help you through. We all know someone who could do with this type of support, but it can be difficult to know what to do or say in order to help.

Everyone struggles at some point in their lives. The ability to draw on your own similar experiences or to make a connection between your own struggles and theirs can really help to provide much needed support at these times.
In our Community Health Networks study many people talked about the benefits of having friends or acquaintances that have been through similar experiences, and how this made them feel they were not alone in what they were going through. They could offer practical tips drawn from experience that helped them navigate their problem, or simply be there to listen with empathy. This sometimes took the form of specific support groups, but sometimes it could simply be the empathy that those around them provided, even if they hadn’t had the exact same experience themselves.

In our pregnancy and medication study  we also heard how some women found it really helpful to either share their own experiences or to hear about other women’s experiences that were similar to their own. Sharing offered validation and reduced the sense of isolation felt by some women with severe mental health problems. Others found that sharing their own experiences helped them to move on from painful memories of the past.

Despite the benefits of this type of social support, people tend not to talk about their problems with others. In our Time to Change Children and Young People’s survey we found that only 26% of young people said that they had spoken about mental health with friends, and just 22.5% with family.

 

Case study: Peer Support in Hospital—A Shared Journey

ben_gray resizedBeing in hospital is a painful experience, but it’s also a personal journey, and for me it was forming friendships on the ward that pulled me through.

Being on the ward is often isolating and frightening, with people shouting at their voices and sometimes being restrained by staff.

Befriending other people, getting their support, praying for others, and engaging in group activities all aided in my recovery. By taking part in group activities like creative writing or music therapy, I became closer to people – not as recipients of diagnoses of schizophrenia, bipolar disorder or depression, but as human beings with complex problems, emotions, and difficult past histor
ies). We talked about our personal experiences and difficulties and supported each other’s gradual progress and journey toward recovery. Importantly, I realised we were all in it together—I wasn’t alone.

Friendships—showing a little bit of love and care for each other—make the time on the ward easier and more rewarding. It can be tough and not everyone likes going into hospital, but I think the important thing to remember is that we can all support each other. It may seem like a little thing, but having a good relationship with another human being makes all the difference.

Ben Gray, senior researcher, McPin Foundation

 

Practical tips

  • Who do you know who is going through difficulties right now? What experiences can you draw on to offer support?
  • Simply offering an empathetic ear can really help in times of difficulty. Offer someone your support this way this Christmas
  • Sharing your own story with people not only provides them with support but can forge a deeper connection between you. Don’t worry about saying the right thing – use these times as an opportunity to strengthen friendships

Thriving or surviving? Our work on personal wellbeing network mapping to help people thrive #MHAW17

Daryl Sweet, Senior Researcher

Daryl Sweet, Senior Researcher

This year’s Mental Health Awareness Week theme ‘Thriving or Surviving?’ is a reminder that good mental health and wellbeing is about more than the absence of a mental health problem, but the opportunity to live a full and meaningful life. This means more than simply ‘getting by’, or managing symptoms of mental distress, but supporting people to thrive and flourish – develop positive resources for mental health such as resilience, social support, and a healthy and fulfilling lifestyle.

There is a stigma-busting message here too – people with mental health problems, including those which are severe and enduring, can also thrive. Mental health support has progressed considerably from the days when treatment was focused only upon medical symptoms and survival in terms of people barely managing, or not being ‘in crisis’. However, this narrow approach to mental health still exists, particularly for those who are the most unwell. There continues to be low expectations for such people that they will ever be able to thrive.

These issues are present in wider society: as the Mental Health Foundation’s new report this week reflects, too few people are thriving in the UK. If we’re going to change this, at McPin we suggest the need to develop new asset-based tools which focus on people’s strengths and personal opportunities as well as resources across communities all around us, and we need research evidence on what does and doesn’t work.

At McPin, we have been working on an asset-based approach to mental health that we have called ‘Personal Wellbeing Network Mapping’. From 2011 to 2015 we conducted research funded by the National Institute of Health Research (NIHR) that mapped the social networks of people diagnosed with schizophrenia, bipolar disorder or psychosis. Our social network mapping approach was unique: we extended the approach to map not only people but places and meaningful activities too, and we asked participants to rate the impact of these on their wellbeing.

We reported that the people in our study had a wide variety of wellbeing assets in their lives with some having thriving and active networks of resources that helped them have good mental health, contrary to popular preconceptions about people who are diagnosed with mental health problems. We also found that there was potential to help people actively manage and build on these wellbeing connections, with some initial evidence that the tool we used to collect data could be used in practice. We found some of the people in our study had already started to make changes to their networks as a result of mapping their connections, by the time we met them a second time.

There is now plenty of evidence that social networks are vital in helping people to maintain mental and physical wellbeing, as well as to recover from ill health. Traditionally, mental health services have not had a role in helping people manage their social worlds, but this is changing with recognition that people who are most unwell are often isolated and find it particularly difficult to maintain or build new social relationships. Our approach could help identify opportunities to support people to address social challenges in their lives, through mapping community assets that support social connection as well as meaningful activities, interests and places around which people can build new social networks.

Two years on from the end of this study, we’re beginning to see progress towards using this method in practice. We are working with a variety of partners who are testing our approach as an asset-based intervention to help people thrive and with others who are doing work inspired by the methods we used. Our Community Navigator study is testing an approach to help people with anxiety or depression increase social connections, while in Hounslow a Wellbeing Network has been created that offers our mapping tool to members who join and identify social isolation as a challenge. Our colleagues in the Institute of Psychiatry, Psychology and Neuroscience are using our approach as the starting point for an intervention to help people with enduring mental health problems to improve their physical health.

We are bringing together these partners on Wednesday 10th May to discuss how we can learn from each other. How is wellbeing mapping being used in practice? We hope to collectively take forward ideas to improve our approach, creating insights that might benefit other groups such as people leaving secure care. An open-access journal paper will soon be published in which we describe the methods, concept and some of our key findings using our personal wellbeing networks approach. Stay in touch to find out when this is published and to keep up to date on our work on this topic.

 

Long term impacts of medication for Bipolar

hot-off-the-press-pharmacy-shelvesMedication side effects are a burning issue for many service users and carers.  Yet research to date has failed to accurately reflect the prevalence of the adverse events and effects resulting from long term psychiatric medication use. This is a particularly urgent issue for people diagnosed with Bipolar, as influential guidelines on its management, including those of the National Institute for Health and Care Excellence (NICE) and the British Association for Psychopharmacology, advocate the long term use of medications. This article provides an overview of a recent study looking at the long term physical impacts of medications used to treat Bipolar.

It is thought that approximately 1-2% of the population will develop Bipolar at some point in their lives. Of those who seek treatment, the majority are offered medications such as Lithium, which are often prescribed long term in what is known as ‘maintenance treatment’.

The effectiveness of these medications continues to be a focus of research. Systematic reviews and meta-analyses to date suggest that some medications are generally more effective than a placebo drug in reducing the severity of symptoms associated with a Bipolar diagnosis. The exact mechanism by which these drugs work is still unknown.

In contrast to the evidence on the efficacy of existing medications in reducing the burden of some symptoms, there is only limited information on the prevalence of adverse events and effects resulting from their long term use. This presents those seeking treatment with a conundrum. What are the risks of taking psychiatric medication long term and how can these be balanced against the potential benefits?

At present there is very little for people to go on. All of the possible side effects are described on a medication’s accompanying leaflet, but there is currently no way of determining prior to consumption whether a specific individual will experience adverse effects. As with many other psychotropic medications, people who wish to explore it as a treatment option for Bipolar must embark on a journey of trial and error.

For those who experience fast relief and few or no adverse effects, medication can be a life changing treatment. For others, the search for a medication that works can take months or years, and can include debilitating adverse effects along with any withdrawal symptoms as they try different drugs. Even for people who find a medication that is therapeutic, the lack of information relating to the long term impacts on physical and mental health can make it difficult for them to be confident in taking medication for a prolonged period.

I was therefore pleased that a new study led by Joseph F. Hayes based at University College London has been published in the PLOS Medicine, which looks into the adverse effects of the long term use of medications commonly prescribed for Bipolar (‘Adverse Renal, Endocrine, Hepatic, and Metabolic Events during Maintenance Mood Stabilizer Treatment for Bipolar: A Population-Based Cohort Study’).

Mood stabilisers and antipsychotics can cause a wide variety of adverse effects. This study focused on the negative impacts of the four most commonly prescribed medications for Bipolar: Lithium, Valproate, Olanzapine and Quetiapine. It looked at adverse impact on the kidneys; hormone glands such as the thyroid; the liver; and metabolism, particularly in relation to weight gain and associated hypertension/diabetes. Although Olanzapine and Quetiapine are relatively newer drugs, Lithium was first approved for ‘manic disorders’ back in 1970. Data was collected from The Health Improvement Network (THIN); a UK primary care database that contains anonymised patient information. In total, 7,000 individuals’ records were analysed for incidence of adverse effects. All study participants had a diagnosis of Bipolar and were taking one of the above mentioned medications.

The research concluded that, taken over the long term (up to 17 years), individuals prescribed lithium were significantly more likely than other participants to experience a deterioration in kidney function, known as Chronic Kidney Disease (CKD), as well as being more likely to develop thyroid problems. In many people, CKD does not result in any noticeable symptoms, but individuals are at significantly higher risk of developing both heart disease and stroke. Thyroid problems can cause a range of symptoms including weight gain/loss, fatigue, depression and hair loss.

Compared to people taking Lithium, individuals prescribed the antipsychotic Olanzapine had the highest rate of weight gain and new onset hypertension. Incidences of significant weight gain were also higher for individuals prescribed Quetiapine and Valproate. Significant weight gain can be one of the most distressing adverse effects of psychiatric medication. It can lead to problems such as cardiovascular disease and diabetes but also can affect people’s self-esteem and body image, which can have a negative impact on their mental wellbeing.

A key strength of the study is its large sample size and long follow up period. Most studies into the effectiveness of these medications do record incidences of adverse effects such as weight gain, but over a far shorter period of time (6-12 months). Given that many individuals take medications for longer periods and some adverse effects only become apparent after prolonged use, it is essential for research in this area to reflect the current prescribing practices.

However, I couldn’t help but feel a little underwhelmed by the study’s results. Although it is a welcome addition to an under-researched area, the Lithium related incidence of CKD and thyroid issues are already acknowledged in treatment guidelines that specify routine monitoring of individuals’ kidney and thyroid function. Furthermore, the weight gain associated with Olanzapine is also pretty well established. On an anecdotal basis, I have rarely met a person who is taking or has taken Olanzapine and not bemoaned the impact of the drug on their weight. Therefore, for me, the concluding remark, ‘[g]iven the need to balance an array of risks and benefits, an individualised and collaborative approach to treatment choice is likely to be most appropriate,’ sums up the crux of the issue. For many people who take psychiatric medication long term, they know what the benefits and adverse effects of their medication are because they experience them day in day out. Yet, with ever shorter appointment times and the tendency of mental health professionals to focus on ‘symptom reduction’, it can be difficult for people to find the space to address a complex and subjective question: ‘overall, is medication the best option for me?’

Understanding how individuals currently go about answering this question and how services can best support people to feel confident in their choice could provide the foundation for a personalised and holistic approach to treatment. Some small steps have already been taken to give us a better understanding of how pregnant women go about making decisions regarding psychotropic medication. A similar exploration of decision making processes relating to psychiatric medication use by the wider population is long overdue.

Mental Health and Support into Employment: Is it Working?

research in the newsAs the recent report from the Mental Health Taskforce points out, only 43% of people with mental health problems are in work, compared with 65% of people with other health conditions, and 74% of people in the general population. The figures are far lower for people with severe mental illness – for example, the employment rate for people with schizophrenia is around 8%.

The current programme of welfare reforms are aimed at moving working age people off benefits and into paid employment. For anyone relying on Employment Support Allowance, the main benefit for people who are unemployed due to a physical or mental health condition, this can mean undergoing a reassessment of their eligibility. The Work Capability Assessment (WCA) or ‘fit-for-work’ test has attracted a lot of attention in the press, much of it negative. First, there are claims that there has been a failure to adequately assess the impact of mental health on ability to work, and although changes have been made to respond to these criticisms, it appears that there are still question marks over whether the tests are fit for purpose.   Second, the impact of the test itself has the potential to cause deterioration in mental health. While much of the evidence to support this has been anecdotal in a recently published research study that also attracted attention from the press, Barr et al (2015) found a link between the WCA and rises in suicide rates, self-reported mental health problems and antidepressant prescribing rates. That is, where a higher percentage of the population in a local area were subject to the WCA process, there was a greater increase in these three mental health outcomes. Although the study controlled for variables that might have had an impact on the findings, such as deprivation and long-term mental health trends, it was not able to make a direct link between the people undergoing the WCA and those experiencing the adverse mental health outcomes. Nevertheless, the authors believe that the study provides sufficient evidence for a policy rethink.

Yet many people who have a mental health problem do want to find and stay in employment, and workplaces and back-to-work programmes need to understand and respond to the impact of mental health problems and the kinds of support that are genuinely helpful.

One evidence-based approach to supporting people with long-term mental health needs to get into work and stay in work is the Individual Placement and Support (IPS) model. The IPS model is based on the idea that not only is it possible for most people with a long term mental health needs to work, but that work itself is therapeutic. The model provides support aimed at rapidly finding paid, competitive employment, and continuing to support the individual once they are in work. It is also based on integrating employment support with clinical support. Developed and shown to be successful in the United States, it is increasingly being used in the UK. While to date the success rates have not matched those in the US – and it is suggested that there are some important differences between the two contexts to explain this – work to implement and evaluate the model continues. We are interested in this model because of our own work in this area. We are fortunate enough to be working with the Centre for Mental Health, Trust for London and the DWP on a project called “100 People into Employment”, evaluating a pilot programme based on the IPS model, aiming to support people with schizophrenia or psychosis into employment. As part of this project, we are undertaking a longitudinal study, interviewing people with schizophrenia or bipolar disorder about their experiences of being supported to find and stay in work. Through this project we hope to develop an understanding not just of the ways in which the IPS model can be adapted, but more broadly of the journey into work for people with long term mental health needs; to understand more about what it is like, what is most helpful, and to celebrate their successes.

There are multiple facets to the relationship between work and mental health and supporting people at whatever stage of their journey requires joined up thinking. This is something the McPin Foundation wants to continue to engage with and understand. Tell us what you think are the important areas for research.

100 People: Evaluation of employment support

Download the final report on the 100 People

Download the summary report on the 100 People Project

What is this research?

Funded by the Trust for London, the 100 People project will delivered specialist employment support to people with schizophrenia or bipolar disorder using the Individual Placement and Support model. The project aimed to identify at least 100 vacancies suitable for people with long term mental health needs. It is being delivered by employment advisors working with the Job Centre Plus and with work programme providers, People Plus (formely A4E) across four London sites. ‘100 People into Employment’ is managed by the Centre for Mental Health and The McPin Foundation is independently carrying out the evaluation.

 

What is IPS and why is this research important?

People who experience mental health difficulties have one of the lowest employment rates in the UK. Yet many want to work. The IPS model has a strong international evidence base for supporting people with long term mental health difficulties back into employment. The model advocates employment services should be open to anyone who want help finding work; individual to a person’s needs and wishes; offer rapid placement into paid work; and provide on-going support for an individual in employment, for as long as it is needed. The model also encourages employment specialists to work closely with mental health teams and provide welfare benefits advice during the transition to work.

Our evaluation provided a holistic account of the employment journey, inclusive of the voices of customers. We aimed to understand the barriers, needs and motivation of those with mental health difficulties in relation to work. We evaluated how the IPS model meets needs and helps to overcome barriers.  The ultimate aim of the evaluation is to inform and improve employment services for people with long term mental illnesses.

 

What we did?    

The evaluation of the 100 People project was longitudinal. This means we interviewed different stakeholders including customers, employment advisors and project managers multiple times across the length of the project to understand the work journey from different perspectives and stages of employment.

 

What is the current state of the project?

The study ran for 18 months. We began gathering data in March 2015 and ended in September 2016.

We published the final report and a summary in February 2017.

Who do I contact for more information?

For more information about the project, or to speak to a researcher, please email contact@mcpin.org

IAPT for people with severe mental illness: A service user evaluation

 

Reports

We have produced two reports from our service user evaluation of IAPT for SMI funded by NHS England. The summary is a 12 page A5 booklet and the full report is much longer. Both have been produced with the three peer researchers who worked on this study with staff from the McPin Foundation. We are very grateful to everyone who participated and are working with the study sites to disseminate the findings locally. Click to download below.

Summary report from service user evaluation of IAPT for SMI

Full report from service user evaluation of IAPT for SMI

 

What is this research?

Improving Access to Psychological Therapies (IAPT) is a national programme, started in 2008, 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 psychosis, bipolar disorder and personality disorders.

NHS England selected six demonstration sites to pilot IAPT for people with severe mental illness. They are collecting evidence to show whether this work is effective.

The McPin Foundation has been asked to carry out some research to find out about the experience of people accessing talking therapies in these sites.

Flexible Support

 

Why is this research important?

While it is important to know about the clinical results for people receiving talking therapies through this programme, it is also essential to understand the perspective of people who receive them. We asked people what they felt helped or didn’t help them and what they liked and didn’t like about the experience.

Importantly, we also spoke to people who decided not to receive talking therapies through this programme to find out why they didn’t feel it was suitable for them, or what prevented them from accessing it. This helps to understand not only who the programme helps, but also who it doesn’t help and how it could be improved to help more people in the future.

 

What are we doing?

The research is being carried out by three peer researchers in different parts of the country. They are being supported by two researchers at the McPin Foundation.

We asked people to complete a questionnaire about their experiences of the programme. We then invited 60 people 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 talking therapy, or about why they chose not to use it.

 

What is the current status of the project?

The project began in November 2014 and will end in October 2015. We sent out questionnaires in December, and the interviews took place from January – March 2015. We reported our findings to NHS England at the end of March, we are currently working on an in depth analysis of the interview data which will result in a peer review publication allowing us to address some of the key research findings in more detail.

 

Who do I contact for more information?

For more information about the project, or to speak to a researcher, please email rosethompson@mcpin.org.

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.

Ups and Downs

We have been involved in a study looking at experiences of support and treatment in bipolar disorder. And it has recently been published in the Journal of Mental Health so it felt like a good time to reflect on this piece of work. The project was carried out by a team of researchers based at Rethink Mental Illness, some of whom now work at the McPin Foundation.

The Ups and Downs study followed on from a research project into recovery from severe mental illness.  We realised that some people with bipolar received different levels of support when ‘up’ to when they are ‘down’ and we wanted to better understand this. We interviewed people with bipolar diagnosis and their carers or supporters. We asked about experiences of support and needs during manic and depressive periods, and how these may have been met. Interviews were supplemented by a national web-based survey.

We found that support needs often differ according to mood. When high/manic, people needed calming influences to avoid overly stimulating activities. When depressed, more positivity, more activity and engagement in everyday life routines could be especially helpful. Providing effective support was crucial.

1)     Being listened to and not feeling judged by the listener was especially important.
2)     Empowerment: Interviewees had developed a range of coping strategies to moderate their extremes of mood. Carers helped by gently reminding them of what they could do to help themselves. Mental health professionals have a role to play too. Talking therapies can provide strategies to manage moods, while giving people control to adjust psychiatric drug dose in response to mood changes can help too.
3)     Receiving support before reaching a crisis point: Key to this was being aware of, and acting on, early warning signs. Although not all participants were aware of their mood changes, particularly when becoming manic, supporters often helped to detect early warning signs, and acted to help prevent crises. Early action is crucial as extreme highs can develop quickly.

Julie:

I enjoyed being part of such an enthusiastic team. We also got on extremely well. In particular, I found the workshops both stimulating… and tiring! I helped to write the academic paper which was a new challenge for me. It allowed me to gain in-depth knowledge of the relevant research literature and to discover just how much work is needed to have research published in quality journals.

Roger:

Interviewing family members (one mother, one wife, and one sister) was new to me. All three women had been through terribly difficult times in keeping their son, husband or brother safe and seeing them through extreme ups and downs. Each carer had spent many hours researching in order to support effectively. I was most moved as I gained a new insight about the ‘really listening’ that so many of us with the bipolar diagnosis talk about. Although only the sister used the word ‘love’, each left me with a strong feeling that it must be love or something very like love that often makes all the difference.

We thought it was important to make the results of the study as accessible as possible, so we produced the following booklets:

Staying Well with Bipolar – your guide to dealing with the ups and downs

Two members of the team, Alice and Roger, made a video of the study which you can see on youtube and on Roger’s blog.

Our academic paper abstract can be found online:Listen, empower us and take action now!’: Reflexive-collaborative exploration of support needs in bipolar disorder when ‘going up’ and ‘going down’.

Decisions about medication during pregnancy

What is this research?

Women who take medication for a mental health condition face difficult decisions if they want to have a child. Should they stop taking their meds or reduce the dose while they are pregnant because of a possible risk to the baby? What if this makes their mental health deteriorate?

The situation is especially complicated when there is a lack of clear, evidence-based guidance on best medical practice as this means clinicians are also having to deal with uncertainty.

This research project explored how women made this decision. It was carried out by peer researchers, the McPin Foundation and researchers at University College London. The project is part of a larger research programme, funded by the NIHR HTA programme, looking at the risks and benefits of psychotropic medication use during pregnancy. You can read a paper about those results here

Why is this research important?

Psychotropic medications are those that affect people’s mood or behaviour. This includes antipsychotics, mood stabilisers and anti-depressants that are often used to treat severe mental illnesses such as schizophrenia, bipolar disorder and other psychotic disorders. Many women who are treated with these drugs may become pregnant, through both planned and unplanned pregnancies. At the moment, there is a dearth of evidence-based information about the risks of taking these drugs during pregnancy, or the risks of choosing not to take them. As a result, is hard for women to get the advice that they need to make these decisions. It is hoped that this research may help women who find themselves in this situation and their practitioners, by identifying opportunities to provide greater or different kinds of support.

What are we doing?

We teamed up with researchers at University College London to find out what happens to women who become pregnant while they are taking psychotropic medication. The researchers had access to patient records going back to 1995 and looked at whether women chose to keep taking the drugs or stop, and whether either decision affected what happens to them or the child. The researchers were advised by a group of women, recruited by McPin, who have experience of taking these drugs and were directly affected by these concerns.

Alongside the study of patient records, McPin conducted an interview study with 12 women with psychosis who have had to make these decisions. We wanted to know what they thought about the issues, what worried them, what information or advice they had been given, and what decisions they made.  The research was being designed and carried out by peer researchers with first-hand experience of the issues involved.

What was the outcome of the project?

An illustration encapsulating the main messages of the research

We found that the women’s central dilemma was whether to continue taking medication to ensure they stay well and can care for their baby in the face of fear and uncertainty about the risk it posed to their baby’s health. This caused a lot of distress. Despite this, the research found that the women retained strong feelings of personal ownership for their decisions. They drew on their past experiences and views about medication as well as information in books, leaflets, the internet and in published medical papers. Some talked through what they found with their clinicians and together managed this ‘decisional uncertainty’.

Some women decided independently what they wanted to do and presented this to their clinician. Others took a shared decision-making approach – seeking guidance before making their choice. Neither approach was straightforward and often involved negotiation, and in some cases, handling coercion. When women felt that their decision wasn’t supported, either by their clinician or their partners and families, this led to feelings of stress and judgement. Ultimately, whatever their decision and process of getting there, the women took personal responsibility for their choice and framed it as their own, even if they were still conflicted about it.

Resources

You can read an article about the project published in the peer reviewed journal Mental Health Review Journal here. To read about what it was like to be a peer researcher on the project, check out Charlotte’s blog.

Here are some suggestions for how to health professionals and services could make the decision-making process easier for women.

Click the button below to download an illustration of the main messages from the research.

We are asking people to print the illustration and pass it on to their GP, psychiatrist or appropriate healthcare professional or to pin it up in their local community or health centre. If you are a teacher of healthcare professionals, you may wish to use it as a teaching aid.

Who do I contact for more information?

You can contact the team via contact@mcpin.org.