Testimonials in support of CAPS

The testimonials on this page come from people involved with CAPS, organisations that support our work and staff. They make clear the terrible impact on people if our services end. The Edinburgh Health and Social Care Partnership has proposed cuts that would see the loss of 82% of the Collective Advocacy service at CAPS, and with it the loss to Edinburgh of a significant amount of knowledge, skills and pathways for voices. Find out more about the proposed cuts, how you can create your own testimonial and other ways that you can help here.

Please read the testimonials below:

Group statements from Collective Advocacy projects

Group statement from Edinburgh Community Voices (Edinburgh Collective Advocacy)

Without community voices collective advocacy group, we would be less informed of decisions that affect our lives and would be less able to participate in them. The group has enabled us to have our say on issues that matter to us, as our collective advocacy worker is in an independent position to be able to advocate for our views on a strategic level, to senior staff of services who would otherwise be less able to hear our views. At our group meetings we have often discussed how inaccessible participation in these decisions and conversations are for people with lived experience of mental health issues. It often feels like no one is listening when we voice our concerns. But with collective advocacy, overcoming these barriers feels possible. Some of us have been involved in community voices for many years, including while the group was previously run by Advocard. Over the years the group has produced numerous projects including surveys and reports on GP surgeries, transport, and most recently community drop in services, many of which are now under threat of disinvestment and closure, despite the voices of many people asking for these services to remain. We have produced resources on our experiences which have helped other services that interact with people with mental health issues. Weve responded to budget consultations and other local authority work. Our approach as a group is unique as we address issues in communities as a whole, from a mental health perspective, rather than only focusing on mental health services. This means we are more able to meaningfully engage in our communities. The negative impact of these cuts to collective advocacy is also exacerbated by cuts to other services we use – some of us access other services for support, which is now being withdrawn, breaking relationships built over time with services, leaving us very few places left we can access the support we need. We believe this is short-sighted as reducing preventative support will incur further costs for crisis support. Collective Advocacy offers us a mechanism to challenge this lack of services, but if all Collective Advocacy in Edinburgh is cut we will not have this option.

Group statement from Much More Than A Label Experiences of Personality Disorder

MMTAL changes how we see ourselves. It helps us feel less like toxic monsters, teaches us more about our own experiences and the experiences of others with personality disorder diagnoses, and helps us learn to challenge stigma and educate others. It makes us feel seen, and heard, and gives a purpose to the trauma we have faced dealing with the stigma of our diagnosis and the challenges we have faced navigated the mental health system with such a stigmatised and misunderstood label. It gives us hope that life can be better and helps us help ourselves. We deliver workshops to many different health and social care students and workers and the sense of achievement after reading the overwhelming positive feedback forms is extremely validating. We’re able to effect change, not just for ourselves but for everyone who comes after us and has this label put on them. Watching each other grow and transform and stay well after months of involvement is a testament to the group. People with personality disorders are still discouraged from socialising with each other because “you’ll pick up bad habits from each other” but when this CAPS group is involved the opposite happens. We pick up good habits and help each other. It gives people with these diagnosis the chance to meet others like them and find positive relationships. 

The work we do as a group is often called invaluable by the professionals we train, provide resources for and interact with. Many professionals tell us they have no other training on borderline personality disorder, and the work we have done and the workshops we deliver are used widely, for example by the Royal College of Psychiatrists and by newly qualified nurses at the Royal Edinburgh Hospital. It is particularly important to have a group such as this at the moment in Edinburgh, as there are currently no tailored services provided for people with a BPD diagnosis. Trying to get the specialised care and support we need can feel like an impossible task, and without this group trying to challenge this lack of services, we worry that hundreds of people with this diagnosis in Edinburgh will be left unsupported and suffering. In Edinburgh at the moment, community mental health teams and other services are reluctant to engage with people with personality disorder diagnosis, and this makes this group all the more important because it provides a resource for people who otherwise may be failed and have no supportive environments at all.  Without the work this group is doing to try and provide the services to people in Edinburgh they both need and are entitled to, we fear lives will be lost, and the extra pressure put on crisis services and general mental health services will compound harms to vulnerable people and make it impossible for professionals to effectively support us and other people like us.

Group statement from Experiences of Psychosis

What we do

The main focus of the EOP is the workshops we run called ‘Experiences of Psychosis.’ These are  interactive, creative, unique events for a wide range of people including nurses, psychotherapist, crisis and mental health workers, clinical psychology, nursing, occupational health and creative therapy students and people from the community such as loved ones of people experiencing psychosis. In the last year alone we have run our workshop for approximately 130 people, and we receive more requests all the time.

The participants gain a new perspective on psychosis, people have had real revelations in the workshops about their professional and personal lives. Each workshop is a unique event and we share different aspects of knowledge with attendees and ourselves, and all our perspectives evolve. Everyone wants to know the best way to support someone dealing with psychosis  but there’s no easy answer- we create a space for complex exploration and nuanced conversations that change minds. The workshops are a chance for attendees to meet people who have experienced psychosis but are not unwell at that point, and give professionals a chance to speak to people who can step back and talk about what they have experienced.

We have developed our own structure to facilitate exploring psychosis using lots of different perspectives, like art, philosophy and our own experiences to create deeper conversations. Feedback from group and participants helps us gain confidence that we are raising issues that are important and reflect what people want to explore. After our workshops, participants will able to treat their patients better than we were treated, and everyone attending can think more about how we treat each other in society.

What would be lost if the cuts take place?

Without a group and a facilitator it is hard for us to get access to opportunities to share our points of view -unless these things are set up and facilitated, where will people get the information from?

The wider community wouldn’t have access to this collaborative space which generates new ways of thinking about psychosis and society which cannot be got anywhere else. The wider community would lose the chance for professionals to learn how to interact with  people experiencing psychosis  better, which helps the professionals and their patients.  

We would lose the opportunity to not just be seen as patients, or as a source of information to fit into a medical model, like a standard training, but to be seen as valued people, able to generate new knowledge through collaborations. Removing collective advocacy would remove access to the kind of insight you cannot get without having lived through it from people it could help, and remove our opportunities to share that insight, which helps us.

Group statement from Oor Mad History

What does the group do? 

The Oor Mad History group is a unique and important community history project and collective advocacy group. It aims to reclaim and promote the history of activism and collective advocacy by people with mental health issues. The group started in 2008 and grew out of the Lothian Mental Health Service User Movement. When we document and archive, we do so as part of our advocacy work. Inherent in that work is the goal to change power structures in society, and the belief that understanding our history and sharing that understanding is essential in that structural change. We use community history to have a stronger voice about mental health and the mental health system, build community, challenge assumptions about people who use mental health services and tackle discrimination.

The group has made some profound accomplishments since 2008 when it started. We have developed a rich and extensive archive focusing on the history of advocacy and activism. Currently, we are digitising these materials into a comprehensive space accessible to all.

The project published its first book in 2010, capturing peoples’ memories and stories from the 1980s to 2000s. A further book ‘Oor Mad History Ten Years On’ was published in January 2022. It looks at the history of collective advocacy and ‘mad activism’ in Lothian from 2010 to 2020.

The group hosted a new four-week community course called ‘Understanding Oor Mad History’ in partnership with the Lothian Health Services Archives (LHSA) at the University of Edinburgh. The course is designed for people with lived experience of mental health issues, and participants are able to explore topics such as the history of confinement and treatment, sexuality, gender and intersectionality, and activism then and now. We received some excellent feedback on the content, sense of community and solidarity that was created during the course. We will be running the course again at the end of August this year.

Additionally, the group further collaborated with LHSA on a ‘Discovery Session’.  Members spent time researching topics of their interest within the archives and brought their lived experience to draw out important messages, learning and stories found within the collections.

What would be lost if the group ends – to us and to the wider community.

Knowing and interpreting our history helps us to understand the nature of power and how we can help to shift power imbalances. In highlighting lessons of history, we can help prevent past mistakes being repeated. Without this work, we would lose the opportunity to record our experiences and make these accessible for learning and reflection. We would risk losing the many positive and transformative impacts of activism and relationships of trust we have built. 

We and the wider community would lose these safe spaces to share learning and build community. We would lose the opportunity to collaborate with each other and partners like LHSA and build skills in research, writing and public speaking to name just a few.

The loss of the project would also take a toll on our mental health. Our self-esteem, confidence and knowledge of mental health has been boosted due to our involvement in the project, knowing we are contributing to positive change. Knowing that the project is long-term and is there for people whenever they want to be involved has been a great source of comfort and that would consequently also be lost.

Group member Pauline states: “It’s very empowering. It’s been a staple in our lives. You are not judged, and you know that what you share is confidential. We are there to make progress for ours and others’ futures.”

To lose this project, this work, these voices, would be devastating. The legacy and efforts of Oor Mad History and the Lothian Mental Health Service User Movement has been the catalyst for so much of Edinburgh’s mental health scene and services, including the Crisis Centre, The Patient’s Council, Advocard, independent advocacy being enshrined in the Mental Health (Care and Treatment) (Scotland) Act 2003 and much more. The group is unique, deeply meaningful and historically significant. We cannot let go of this project which has made such a profound impact on people’s lives in the past and present. We want to carry it into the future and continue our impactful work of advocacy, activism and solidarity.

Any other information that’s important to us as a group.

Our future lives and other people’s lives are at stake and the group needs to stay together to continue working for positivity in mental health and against stigma. We’ve come a long way to get here together as a group. It is by us and for us and it’s shocking that what we’ve built is being threatened to be taken away. We want to take this hard work into the future and this group is the product of so many hundreds of people fighting for their voices and human rights. We campaign on behalf of those who cannot speak up for themselves. We don’t know how other people can decide whether our group is worthwhile when they have not been part of it. They have no idea about the feelings and hard work that goes into it. They only worry about the monetary value. It brings up a lot of anger, frustration and helplessness. In a way, if they say that the group isn’t worth saving then they’re basically saying that we’re not worth saving.

Finally, as a group, we ask the question:

Who else, if not us, would document this information in such a thorough and compassionate way?

Group statement from Seen But Not Heard – Experiences of Eating Disorders

What does the group do?

“Seen But Not Heard” is a collective advocacy project for people with experience of all kinds of eating disorders, who live in Lothian. It is a space where people with lived experience of eating disorders can come together and share their stories to create awareness, to help educate others, and to reduce stigma. We draw on our experience to raise awareness with the view of improving knowledge about eating disorders and eating disorder services. The project began with the film ‘Seen But Not Heard’ and was funded by The Butterfly Bursary. High schools, universities and eating disorder units across Edinburgh and the Lothians have used the film for facilitating discussions and relating personal experiences. Since then, we have created another film, a GP resources pack about eating disorders, and hosted awareness events.

Current Projects:

Eating Disorders Research

We received funding from Thrive Edinburgh to carry out experience led research into “Men and Eating Disorders”. We have conducted interviews, analysed the data, and written a full research report. We presented a research poster at the NRS Mental Health Research conference in November. We have also presented the research to the National Eating Disorder Network group. The research findings reflect a need for both cisgender and transgender men’s voices to be heard.

Publication of ‘Exploring Recovery’ article in International Journal of Mad Studies

In 2024, several group members submitted an article for publication in the International Journal of Mad Studies for their special issue ‘Critical Eating Dis/order Studies: Madly Questioning Eating Orders’. The article is based on an open discussion between five adults who have experienced/continue to experience various forms of eating disorders. We discussed the notion of recovery and how expert choice is always given more value than lived experience. This article will be published soon.

Rewrite of ‘Overcoming’ Series

In 2018, some of the group were involved in the rewrite of the book Overcoming Anorexia by Dr. Chris Freeman. Dr. Patricia Graham had undertaken the rewrite and asked the group to help reshape the self-help section, as it felt important to include the views of those with lived experience. We have continued to work on subsequent books in the ‘Overcoming…’ series including ‘Overcoming Bulimia Nervosa’ and are currently in the process of rewriting the book ‘Overcoming Binge Eating Disorder’. Working with Dr. Joanne Waine and Dr. Madeleine Tatham has been a wonderful experience and they expressed why it has been important to have our group involved with the project.

“Knowing that we are truly including the real experts – those who have used our services and are experts by experience”

• Dr. Joanne Waine

Education as Advocacy

We continue to deliver educational workshops to raise awareness of eating disorders. Recently we have delivered workshops to counsellors at LGBT+ Health and Wellbeing to raise awareness of the intersection between eating disorders and marginalised identities. We have also delivered workshops to art therapy students at Queen Margarets University for multiple years, social work students at the University of Edinburgh, and to secondary schools.

“The workshop gave me a better idea of the scope of eating disorders and helped dispel stereotypes so I can meet my clients more easily with openness and curiosity”

– Feedback from ED Awareness Workshop to LGBT+ Health and Wellbeing

We recently developed a new workshop delivering eating disorder training for fitness professionals and gyms as this was identified as a need in the recent National Specification for Eating Disorder Care and is something that has come up a lot in group meetings. We delivered the workshop to a popular gym in Stockbridge, and already have two more workshops to gyms in the Edinburgh area lined up.

“The information provided was useful and relevant and highlighted why as the ‘front line’ we can be doing so much more to help and spot eating disorders early”

• Feedback from ED Awareness Workshop to Personal Trainers at F45 Stockbridge

What would be lost if the group ends?

If the group ends, all of our current ongoing projects would come to an end. This includes the rewrite of the ‘Overcoming Binge Eating’ book, the Men and Eating Disorders research, and the upcoming workshops to personal trainers and students. These projects are incredibly important to educate and raise awareness of eating disorders and directly fulfil the new specifications for eating disorder care in Scotland.

Without this group, we would lose a platform to have our voices heard and the ability to share our experiences to increase awareness of eating disorders. We would lose a collective advocacy group that has done incredible work in Edinburgh and Lothian for over 10 years. Our own research has shown how much the stigma attached to eating disorders can prevent people from seeking treatment and can result in delayed diagnosis. This collective advocacy group challenges these stereotypes attached to eating disorders. Losing this collective advocacy group would mean taking away a key educational resource for students, professionals, and third-sector organisations to learn about eating disorders. This group has given us a place to connect with others and a place where we can make a difference to eating disorder services. Taking away this group means taking away our voices when they are desperately needed.

Group statement from Out of Sight Out of Mind Planning Group

We are a group of people who have experience of mental health issues. Together we plan and deliver an open call exhibition for people who have mental health issues. It is the biggest mental health exhibition in Scotland. It is a unique exhibition, and a unique support for people with mental health issues.

Out of Sight Out of Mind is open to anyone with a mental health issue. It is welcoming, diverse, inclusive, accessible, accommodating and flexible. It is non-hierarchical, non-judgemental, validating. It doesn’t question us or provide opinions. It is accountable, free from conflicts of interest and is not bound to a particular treatment method or philosophy.

We spend 11 months each year making it happen, and we deliver the kind of exhibition that we want to take part in. This exhibition has an impact on our lives, others’ lives and leads to change.

Voices that art institutions might not be interested in platforming

We want everyone to be allowed to express themselves using art if they would like to.

Mental health can prevent us from having many wonderful things. Some of us also experience physical ill health, neurodiversity, disability, not being from Scotland, having an ethic minority background, different social backgrounds, and/or gender identity struggles. This can all come hand in hand with housing and financial issues, a lack of resources, education and other opportunities.

This can mean we lack art experience, knowledge and networks, art CVs and art degrees. We may not meet cultural ideas of what an artist is (a certain kind of ‘attractiveness’, have an outgoing personality, be the right kind of ‘weird’). For people who already have arts experience, this exhibition is place where they and their artistic voices can be freed of such expectations and demands. 

Out of Sight Out of Mind gives us all, whether we have these things or not, an opportunity to take part in art, as equals.

As a Planning Group we ensure that our group and the exhibition are welcoming, non-hierarchical, accessible, supportive and fair. Our exhibition is free of art jargon, our application process is simple, we offer support, we offer art materials grants, we aim to meet exhibitors’ requests, to meet accessibility needs where we can, participation is not dependent on art experience, and we are not concerned about perceptions of artistic quality.

We produce an exhibition of the highest professional standard that we can. We carry forward 12 years of experience, we visit other exhibitions to learn more, we spend a year planning, months curating, weeks installing and invigilating. The love, care and professionalism we give is shown in the feedback from the community.

When words are not enough

In mental health services, work, social and family settings, speaking about our mental health can feel risky, unwelcome and even taboo. Self-confessed mental health issues are a definite demotion in society. We don’t always feel that we are taken seriously because of stigma. Conversations can be uncomfortable. Even trained professionals can find it hard and complicated to say the word ‘suicide’. It shouldn’t be this way.

This exhibition is a rare space. It is just for us. We don’t have to get the words right, we can say what we want, we can be as we are, we can be sad, happy, honest, scared, angry, political, funny, loud or quiet. Art is one of the places a person is allowed to indulge in their distress (or their appreciation) that might seem trivial to others, and people are used to seeing taboos in art.

The act of sharing what we want to say in a room with other people’s thoughts and opinions can be empowering, and really is advocacy.

In some ways the exhibition is the opposite to social media: we can speak out loud, and people can listen or move on, but we cannot be disagreed with, and we do not need to defend ourselves.

It is a space where our voices can be seen as beautiful, important, normal and shared.

Our exhibition is an unconventional method to engage with the public, our community and people close to us, about mental health. People are more likely to have empathy. We bamboozle people out of being judgemental.

When services are not enough

Out of Sight Out of Mind is for our mental ‘wealth’.

Mental health support needs to happen before someone becomes mad. The industry needs more routes for contact and Out of Sight Out of Sight is one of these within a scant, threadbare, precarious, and often ineffective set of supports, which leave us in a worsening state.

The exhibition is one solution to helping people. It appeals through not being a conventional method. It is safe, welcoming and sometimes a first step to engaging and speaking about important things.

As well as the act of communicating something difficult being empowering, the creative process is unique way to channel thoughts, emotions and energy, and is a proven and legitimate tool that we can use to improve our mental health.

Having Out of Sight Out of Mind exhibition in our calendars is a catalyst and an encouragement to make art. It gives many of us the structure we need to complete something: a theme, a deadline, support and the solidarity of a collective. Just making and showing an artwork might be a single step we can take, which might lead to future steps.

The work of the Planning Group work is task driven and value based. It gives us meaning, purpose, confidence, reassurance, skills and experiences and it can give us the courage to tackle other projects. We have a purpose for our day, and it can help us get out of bed. We can put Out of Sight Out of Mind on our CV’s, refer to it at job interviews, and go on to work and study because of being involved. We share our knowledge with others who are inspired by our work.

Having a mental health issue can result in our isolation. The Planning Group are a found family. The exhibition is a way for us to connect with our city. Out of Sight Out of Mind is a community of hundreds of people: exhibitors, volunteers, audiences, supporters, workers and us. We all belong. We are all seen.

A place where someone who feels as inconsequential as me can have an impact

We want everyone to have a space where they get a chance to say something about decisions being made. In organising Out of Sight Out of Mind exhibition we learn that we can speak up, that we have good ideas, that we are resourceful, and that we can make a difference.

Part of the stigma and self-stigma that comes with mental health issues is a perception of ‘lost time’ and ‘lost potential’. Here a small piece of positivity is possible, a sense that ‘what I have been through is not wasted’. Involvement brings some meaning to our struggle.

What has been built over the past 13 years is unique and powerful. People tell us that they would like to have an exhibition like ours in their city, in their town, or in their country. We think that Out of Sight Out of Mind could be a template for all kinds of services, where people know they are welcome, accepted, valued, equal and where people can take part in decisions and where their agendas matter.  

Please value our voices, the difference that we have made and that we will keep making. Don’t take our exhibition away.

Group statement – the Midlothian Panel’s views on collective advocacy’s importance

If only individual advocacy was funded, rather than collective and individual, what would be missed? 

Collective Advocacy provides safe, non-committal, reflective and adjustable spaces physically and digitally to people at a time in their lives when they feel the world doesn’t see or feel them. Immeasurable through decimal reflections, these spaces are allowing people to opt in and opt out. A sense of choice to participate or not participate whilst others engage respectfully, passionately and heartedly (if they so choose), while experiencing adverse experiences, is positively impactful. There is no power imbalance. A collective of people sharing experiences are often keys to unlocking doors to move forward in people’s lives. A shared sense of difficulty can generate harmony.

Why is collective advocacy useful?

Collective Advocacy is the useful path for people to take. Collective Advocacy brought me opportunities and dignity when I couldn’t see a way through. When I saw others like me were struggling and they kept going, that encouraged me. I’ve had the opportunities to speak with MSP’s, attend cross-party parliamentary groups in local government, engaged with services at local level, encouraged my absence of confidence in myself to submit personal art to Caps Out of Sight, Out of Mind Exhibition, having my lived experiences quotes in a book they published, working with University of Edinburgh through their experts by experience panel leading to my third year involved in supporting in the assessment of clinical psychology students. The list goes on… ALL because of Collective Advocacy. Please keep building these paths for people, they need them when they’ve hit rock bottom.

If only individual advocacy was funded, rather than collective and individual, what would be missed?

Representation

I volunteered as the Service User Representative – Midlothian Joint Mental Health Strategic Planning Group. Though some time ago now the work undertaken still has relevance today. I was in this role was for a number of years and it was the direct result of CAPS collective advocacy work.

It was CAPS visiting and speaking with groups in Midlothian (I was in a group facilitated by NHS Occupational Therapy and MDC at the time) that found candidates such as myself willing to volunteer and represent service users. It was CAPS staff that encouraged and gave people the confidence to get involved and have a say in the design and delivery of services.

This was my first involvement with CAPS Collective Advocacy and immediately apparent was something I still admire. CAPS staff facilitated meetings, they provided support, they provided information, but they never directed opinions. They provided the opportunity to have a voice and be listened to but it was your voice and it was what you wanted to say.

All sorts of opportunities to contribute further resulted from that first involvement with CAPS. I have since been a member of consultation groups, steering committees, lived experience panels and (after a break) I am still volunteering today and still supported in doing so by CAPS Collective Advocacy as a member of the Midlothian Mental Health Lived Experience Panel. I have also just attended a meeting of the Midlothian IJB Strategic Planning Group as a prospective representative member.

I have seen many positive changes in the way services are delivered in Midlothian over the years. The most fundamental being the integration of health and social care and wholeheartedly agree with the Integration Joint Boards (IJB) stated aim: –

“The IJB is committed to working closely with people and partners including representatives from the third sector and those with lived experience joining planning groups including the IJB itself”

Any lived experience representative on groups such as the IJB is by definition a collective advocacy representative. These representatives do not exist in a vacuum They do not magically appear as and when required. This is the result of the work and support of CAPS Collective Advocacy and without that work representation will be missed.

Why is collective advocacy useful?

I am tempted to say, “see above”. Instead, I am including an extract from an email I received This was some time ago, but a really clear example of the impact representation can have. I

would not however have been a member of the group had I not first been introduced to the Joint Mental Health Planning Group by CAPS Collective Advocacy: –

(………………) was especially keen that I ask you, because your input to the strategic plan at the Community Collaborative meetings a couple of years ago significantly altered the direction of the plan and gave it a clearer focus on prevention and wider factors that influence health and wellbeing. This in turn contributed to decisions to keep funding the Community Health Inequalities Team nurses and expand the Health and Wellbeing service in GP practices.

Group statement – the Midlothian Panel members’ response

For me this group is a vital representation of lived experiences. I too still have days where I struggle with my mental health. There have been days that coincide with our meetings and I’ve came along. This has been important because I know I’m coming to a safe space where I can say to fellow group attendees “I almost wasn’t going to come today, I’ve been struggling”. This has led to conversations of sharing thoughts and feelings together where I have then felt less lonely and isolated with my thoughts and feelings. I’m not alone in struggling occasionally. There is a strength in this connection and sharing. That has an affect on my wellbeing that simply put medication cannot ever give me. 

I feel really passionate about community work and connection. So much so I studied it. I value my lived experience as I’ve progressed from accessing support services to helping deliver them with two charities I volunteer with and small community groups I help to run. My experience on the caps panel helps me feel valued as a person and listened to and connected to my community. Helping to improve support services feels like a valuable part of my coping and recovery journey.

I feel it’s important to share lived experiences and help represent those who cannot speak up. I took have days where I can’t speak up. But coming to the lived experience panel” I can always speak up and have a voice, even on my most difficult days”.

“I’ve valued the experience as meetings and panels can be intimidating but somehow here on this panel it’s never felt like that, ever”

We are using our lived experiences to help improve future services and provisions by looking at what doesn’t work and voicing realistic suggestions for improving changes in how services are shaped and delivered in the future.

It’s important not to lose the space to share lived experiences and give a voice to anyone living with long term mental health conditions and those experiencing mental health and wellbeing challenges in the short term.

Group statement from Lothian voices

What does the group do?

Designs and plans the annual People’s conference for those with lived experience of a mental health issue in the Lothians. All previous People’s conference reports can be seen on CAPS website. In the past we have looked at topics such as the homelessness and housing crisis and met with the minister Paul McClelland in 2024. The group takes part in consultations e.g. looking at topics like the adult disability benefit. We met with researchers from the Scottish Government regarding benefits and mental health and were integral in getting a lived experience perspective considered. The group also take part in CPGs (cross party groups), in the past the mental health CPG and now the health inequalities CPG, to ensure voices of lived experience are heard at parliamentary level.

We want our voice heard in the Lothians! The group feel collective advocacy is a way to tackle isolation, to learn from each other, to help each other and people out with the group and to pass on what we know and hope it will help people. It gives us a purpose, “it’s a lifeline in many ways” for people to advocate together. This was especially important during lockdown but post lockdown too.

What would be lost both to group members and wider society if the group ended?

“Our faith”

Our experiences will affect other people and decisions made, information we can pass on and lots of things we share in consultations benefits the community. There is a positive ripple effect, without it there is a sense of sinking or drowning.

The group is very good for group members mental health, to gain new knowledge, new strategies and passing on their knowledge. We want to be able to affect the system! Without groups, people end up unwell which the NHS will have to deal with. There is drip reaction: things get worse and worse and deteriorate.

“Where does it end?”

The loss of community collective advocacy and opportunities to express ourselves and to work with other groups. The group gets people out and about and interacting with one another reducing isolation. It helps to restore confidence, self-esteem, to learn skills, to feel like a useful, worthwhile person and that we’re contributing to society and the mental health community. It is personal development like a CPD but “continuous personal development” (as opposed to professional). We don’t judge each other and feel safe in the group, it’s confidential and people are accepted without questions

What would be lost to the wider community is the contributions made and the help for others: we’re all compassionate individuals, we know what it’s like to go through emotional pain.

Our family and friends will be more worried about us because they know what the group means to us and the support it provides.

In the group we’re listened to and because we are listened to, we help each other and can help others. We listen better now and learn to listen better.

 “It’s so important to listen to what’s being said, to listen and learn.”

Group Statement from the LGBTQIA+ Collective Advocacy group

What does the LGBTQIA+ group do?

The CAPS LGBTQIA+ collective advocacy group spreads awareness of the challenges that LGBTQIA+ people face with mental health and when accessing mental health services. We use our own personal experiences combined with research to plug the gaps in knowledge around LGBTQIA+ identities. In the past, we have delivered workshops to NHS staff, the Cullen Centre, Mental Health Officers, other third sector organisations, the Lothian Health Services Archives, and university students. We have also designed and delivered collaborative workshops with the Minority Ethnic and Eating Disorder collective advocacy groups at CAPS. These collaborative workshops were initially proposed by group participants and increase the value and effect of the workshops. These intersectional workshops are frequently requested by organisations. We have also hosted events for LGBTQIA+ people to come together and have their voices heard.

What would be lost if the group ends?

The city’s mental health and third sector services would lose a unique educational service mostly provided for free by people with lived experience. We’re often told that hearing from us directly has more of an impact than more sanitised textbooks or medical journals. 

CAPS’ Collective Advocacy groups are safe and trauma-informed spaces. We produce our own group agreements and stick to them. One group member described the group as “the only queer space I’ve been in where I haven’t experienced racism”. Being a part of this group gives us a sense of purpose and a way to make a difference. Losing this group would be losing a way to make change. Even if we change a few minds, there is a knock-on effect. This group empowers queer people to make change. It is a safe space to just be, and to express our concerns. We can make connections with others who have similar experiences, and this makes us feel less alone. CAPS is a community that just gets it. This collective advocacy group is different to other LGBTQIA+ groups as it’s a place where everyone has similar mental health experiences and we don’t have to feel embarrassed. If this group ends, it will increase loneliness and isolation, and we will lose a sense of purpose.

Group statement from Experiences of Trauma

We are a group of people who have varied lived experiences of trauma. Our goal is to challenge stigma and make things better for everyone involved. We do this by sharing our own experiences and using them to influence health and social care systems, professionals and carers in helping roles, and the wider community

Trauma is really complex, and for a long time, people mostly saw it from a biomedical angle. Things are starting to change for the better, but we all view trauma differently and are at different points in our own journey. Being part of the Experiences of Trauma collective advocacy group has made us feel more connected and confident in making a difference – especially by sharing views that aren’t just based on a medical point of view.

Through CAPS Independent Advocacy, we have found a space that is trauma aware, where we can come together, support each other, and make our voices heard. It also gives us the strength to challenge systems that try to ignore our own experiences and keep unfair power structures in place.

Many of us have experienced being disbelieved about our trauma, with this rejection adding on to the harm we have already experienced. As a result, we have often had to turn to third sector organisations for the essential support we need. Nowadays, with waiting lists for assessments and the shift from psychiatric hospitals to community-based services, third sector organisations like CAPS  have been where we have found support to manage when there are gaps. With our peers we can learn to develop skills and tools for wellbeing, until the root causes can be addressed.

The loss of collective advocacy groups would also undermine the NHS’s stated commitment to patient-centred care. Collective advocacy helps build a bridge between people who have lived through trauma and health professionals. Speaking to psychologists or psychiatrists can be intimidating, and even more so when it comes to challenging their views. As a collective it’s easier to challenge decisions made without your input. If you take away one of the few ways our voices can be heard, you risk providing lower quality care.

Over the past ten years, our group has been involved in several important projects that brought lived experience into key conversations and service planning. These include:

• Input into the redesign of the Rivers Centre to ensure it is safe, accessible and welcoming.
• Provided feedback on the NES National Trauma Training Programme (Level 1);
• Contributions to the Edinburgh Alcohol and Drug Partnership (EADP) Lived Experience Strategy.

We also created and deliver a lived experience workshop called ‘Here and Now’, which highlights holistic, person-centred narratives, learning and reflection, grounded in strength, insight, creativity and growth – offering an alternative to the illness and deficit-based lens through which trauma is so often seen.

Losing this collective advocacy group would mean the end of this valuable, impactful work. Our voices matter, and without platforms like this, they are at risk of being silenced.

As one member stated – “The EOT group is a trauma informed pathway. The foundations concretising this route are developed from lived experience. We are using our adversities to create hope and advance how we compassionately support others. This space helps us to nurture safely and ultimately grow as people. That is impactful in ways that allows members to be seen, heard, valued and included. Essential for people processing or sharing trauma experiences”

Group statement from the Minority Ethnic Collective Advocacy group

We are a diverse group of people who all have lived experience of mental health needs and are from minority ethnic backgrounds. Our voices are often underrepresented and discussions about our mental health can be clouded by cultural and social stigma. As a result, many in our communities feel unable to challenge mainstream narratives or engage openly with mental health topics. We also face difficulties in accessing NHS services and experience discrimination in many aspects of our everyday lives which is why we came together to try to change this. 

CAPS’ Minority Ethnic Collective Advocacy group gives us a safe, welcoming, accessible, and trauma-informed space where we can use our lived experiences to make our lives and the lives of those who come after us better. We create and follow our own group agreements. As one member shared, “This is the only minority ethnic space I’ve been in where I haven’t experienced anti-LGBTQIA+ bigotry.” In these groups, we come together to decide what we do and how we do it. One way in which we effect change is by creating, updating, and delivering workshops multiple times a year to NHS and third sector workers and students. Our goal is to use our collective lived experience to help mental health services be more accessible, inclusive, and confident when working with people from minority ethnic backgrounds. The feedback from these is overwhelmingly positive and we are often told that hearing from us directly has more of an impact than sanitised textbooks or medical journals.

Due to stigma and a lack of understanding, many of us find talking about our mental health within our own families particularly difficult. Through this group friendships have formed, and we have found the recognition and acceptance for our mental health needs which we had not previously experienced either within our communities or through the formal healthcare system.

If the Minority Ethnic Collective Advocacy group were to cease, we would lose the sense of worth, purpose, and fulfilment that comes from creating and delivering these important and much needed informative workshops in a way that is accessible to us. Working to create and deliver these workshops helps build our confidence, provides focus, and gives us something to look forward to. It brings a sense of achievement and allows us to feel we are making a difference. As another group member said “I need this group to feel listened to and able to talk about my issues as a person of colour, a racial minority and as an immigrant. I also learned and can ask for advice and support about procedures on how to access government services or make my voice and concerns heard”. 

Edinburgh’s mental health and third sector services would lose a unique educational service provided for free by people with lived experience. And we would lose a safe, accessible space that enables us to change our own lives for the better. 

Group statement from East Lothian Collective Advocacy

The advocacy group I attend is useful because:

I meet other people who are in a similar situation and therefore helps to alleviate loneliness.

I find out information about events, other groups, etc, which I wouldn’t have known about otherwise.

It makes me feel that I can help others and stops me focusing purely on myself.

Individual testimonials from people involved with CAPS Collective Advocacy

Testimonial by a person involved with CAPS Collective Advocacy

What the group does?

–          The CAPS eating disorders group provides several invaluable services. We give training to mental health professionals from a personal lived experience perspective, something that is otherwise completely lacking in their education. We carry out our own research projects that use our personal experiences to identify what’s missing in the current literature and explore questions from a unique perspective outside of traditional academia. Most importantly we create a space for people with eating disorders to help change societal perceptions of what eating disorders look like, where they can take their experiences and contribute to something extremely important, to make things better for everyone else who shares their suffering.

What would be lost if the group ends? -to you and the wider community. 

–          The critical thing that would be lost if the group ends is a place for people with eating disorders to use their painful and difficult experiences for a productive and valuable purpose. For me personally the thing that’s helped me most overcome my eating disorder has been being able to take my experience and use it as a way to contribute to the different group projects. To be able to feel as though my suffering wasn’t for nothing, and that now it can be used to help other people suffer less in the future, has been immeasurably important for my own recovery. Ending this group doesn’t just end the services it provides, it robs people with eating disorders of a chance to make things better not only for themselves but for others too.

Testimonial by a person involved with CAPS Collective Advocacy

How are you involved with CAPS?

I’ve been involved with CAPS Collective Advocacy groups since 2011. I first joined Much More Than a Label, then helped found the Out Of Sight Out Of Mind exhibition through the Oor Mad History project. I then joined the Trauma group and Lothian Voices. I’m currently involved in the Much More Than a Label, Oor Mad History, Arts As Advocacy/Out Of Sight Out Of Mind exhibition, Minority Ethnic and LGBTQIA+ groups. CAPS is now a major part of my life. My friends know not to ask anything of me in September and October because I’ll be effectively living in Summerhall working on the Out Of Sight Out Of Mind exhibition and I love every minute of it.

What benefits do you get from Collective Advocacy?

I’ve gained confidence, self-esteem, a sense of self-worth, a sense of belonging, a found family, and a safe and supportive environment to talk about what’s wrong in the world mental health wise and come up with ways to make it right for everyone not just myself. It’s given me the confidence to do many things I thought I’d never do. I’ve volunteered to give speeches in front of hundreds of people without a script! I’ve done several video interviews and as someone who used to have panic attacks and run away at the thought of doing that, that’s a big deal! I’ve learnt how to organise an exhibition from start to end. I’ve delivered lectures, presentations, workshops and events. I’ve presented a poster at a large mental health research event. I’ve been involved in delivering consultations and conferences. I’m treated like an equal by everyone involved. There’s no hierarchy.

What will be the impact on you if CAPS’ groups end?

I’m terrified by this prospect. CAPS is my life and saved my life. I’ve gained and continue to gain so much from being involved in multiple groups all of which are now being threatened. I feel like I haven’t done enough, or what I have done wasn’t good enough for you. Please tell me what more I could have done to make this be a good enough return on investment to be saved. I need to know so I can do better in the future as my current input obviously wasn’t enough. But that’s not true. I’ve given so much to and received so much from CAPS as a result of my involvement. I will lose so much if they all end.

My self-esteem and confidence will be negatively affected. I’ll meet fewer and fewer people who will stop me in the street to tell me that a workshop or lecture or presentation I delivered has helped them in their work. I still get approached by people I taught over 10 years ago who say our workshops were the highlight of their course and they still use what we taught them.

I’ve exhibited work every year at the Out Of Sight Out Of Mind exhibition since the first one in 2013. Every year, people with similar experiences to me who have interacted with my works tell me, or leave comments saying they feel seen, validated, less alone and better able to talk about or explain their experiences to their loved ones and/or healthcare professionals. All of this will be lost and while those people won’t know what they’re missing out on, I will. I’ve also had comments from friends and family of people like me who say my work has helped them understand their loved ones better. I’ve had people cry on my shoulder because my art meant that much to them. And that’s just one artwork out of over a thousand over the years.

I’ll meet fewer people like me and may become more isolated. I’m disadvantaged and marginalised in many different ways, e.g. ethnicity, sexuality, gender identity, mental health, physical health, neurodivergent, that make it difficult to find people who understand it all. The emotional labour of explaining how these all intersect to people who don’t have my experiences is exhausting. The people I’ve met through CAPS, volunteers like myself and staff, continue to make a huge impact on my life. I’ve learnt so much about myself and been introduced to some novel but good ways of coping. Without CAPS I’ll miss out on any future connections because there’s nothing as safe as CAPS groups out there. While CAPS’ Collective Advocacy groups aren’t support groups, they are supportive. We’re a very close, but still open and welcoming, community. I use the term family. We’re a “found family”. That’s how safe I feel in these groups. As someone with mental health issues and several other disadvantages, I find it very hard to socialise by which I mean more than just arranging things. I often struggle with understanding cues and context. CAPS gives me a way to socialise with a purpose which makes the rest of it easier. We’re making life better for ourselves but mostly for everyone else one workshop or artwork at a time.

The Out of Sight Out of Mind exhibition is the most social I am all year. It’s safe because we have a group written document that informs how we work as a collective. It’s trauma-informed thanks to the work of our trauma collective advocacy group who helped create those materials. It’s not overwhelming and it’s accessible as tasks are set depending on what you can and want to do with whatever support you need.

If I lose this and my found family I don’t know how I’ll cope. CAPS Collective Advocacy saved my life, gives me purpose, self-esteem and confidence in a supportive environment. I thought I was beyond help in those areas. Neither university nor NHS services were able to help me but CAPS did. They also gave me the courage to challenge my previous mental health diagnosis which proved inaccurate. At the age of 41 I was finally officially an autistic ADHDer, the medication for which has changed my life. I worry about the people who could have but now never will have the positive experiences I’ve had because of CAPS.

Ever since I learnt of the intent to cut all of the Collective Advocacy groups I’ve ever been in and then some my mental health has been very precarious. Just the thought of losing something that has and continues to help me and so many others has massively increased my suicidal ideation. I’m getting self-harm urges too and I haven’t had those since my mother died years ago. I cried almost non-stop for days after finding out and then started dissociating again. Thinking about CAPS now brings up this pre-emptive grief. Something that once was, and, I thought, always would be a comfort is now disturbing me.

I’ve not had to use crisis services since being involved with CAPS’ Collective Advocacy but just the threat of losing this is causing my mental health to deteriorate. I dread to think how much worse it will be if I do lose every single CAPS group I’m involved with. I suspect I may end up using front line services again. I worry about the impact this increase in use, because I won’t be the only one, will have on NHS services. Will they be harder to access? Longer waiting times? Less compassion by burnt out staff? All this will impact me. That’s not the only impact that will affect me.

Staff will no longer have access to the many varied Lived Experience workshops that CAPS Collective Advocacy group volunteers deliver free of charge. Personality Disorder, Trauma, Minority Ethnic, LGBTQIA+, Eating Disorders, Arts As Advocacy for example. People who have attended our workshops or exhibitions overwhelmingly find them useful. I once gave a police officer a copy of a book I wrote for the 2014 Out Of Sight Out Of Mind exhibition after an interaction I had with them. I’d been explaining to him the best way to approach someone like me who was in crisis. He took it and a few days later he phoned me to say he’d read it and found it informative. He’d been called out to someone with bipolar disorder who was in crisis. He told me he’d used what I’d written in an attempt to de-escalate the situation and it worked. I fear for myself and everyone else with a mental health condition because, if these cuts go ahead, all this learning will be lost.

There’s nothing like CAPS’ Collective Advocacy groups out there. I’ve looked and tried some. They weren’t right. I could join the Edinburgh Collective Advocacy group but that’s having its funding reviewed too. So is that even safe? How will that one project cope with an influx of all the other group members? Especially given how different we all are. We won’t have the same level of understanding because it will be so diluted. And there will be much more emotional labour required again. We won’t be able to do all the things we’ve been doing. All that educational material and expertise will be lost.

As someone who is in five different CAPS Collective Advocacy groups which are all under threat I’m feeling an overwhelming amount of what I can only describe as grief. I feel like I’m about to lose everything that has helped keep me well.

Testimonial by a person involved with CAPS Collective Advocacy

I have been a member of the Oor Mad History group for four years, as part of this group I have been involved in a range of activities. I have helped to write and deliver workshops on the history of mental health, and the impact that has on present mental health services.

Helping with the afore mentioned activities has helped me in a number of ways. The fact that I have been able to research the history of mental health has increased my belief in my ability to undertake new ventures, something I had thought I could no longer do.

It has given me the opening to gain a lot of knowledge, particularly as a result of group visits to the Lothian Health Service Archive. I have been able to examine a number of documents there, and work with an historian.

My self-esteem has been bolstered by the opportunity to write up my research, and present it to others. This is partly, because I feel that my time has been spent productively, but also, because I have been able to impart the information I have learnt to others.

At the end of one of the workshops, as one of the presenters, I was able to tell me to talk about my own experiences. Writing this meant that I was able to looking back to see if I could identify any pattens in my history of mental health issues. It also gave me the opportunity to hear the experiences of others, and gain a greater insight into how other people have experienced services for mental health issues.

If the For Mad History group closes, I fear that the impact on me will be adverse for several reasons. Firstly, I feel that my mental health will deteriorate. Whilst it is not a support group in the conventional sense, it does allow me to mix with people who have shared experiences. This means that they understand if I am feeling low, and do not try to cheer me up, or, make me talk. They allow me to be myself and accept me depression and all. In other words, it my safe place. If I lose it my feelings of isolation will increase.

Secondly as I have mentioned helping to present workshops has increased my feeling of self-esteem. If I am no longer able to take part in such activities that feeling will decrease once more, which will make my depression worse.

Thirdly at the moment I feel that I am playing a part in educating people about mental health issues. If the group end, so will be opportunity to do so, and my self-confidence will drop to its previous low levels.

Fourthly the group is important to me, because it offers long term support. In the past I have had several forms of therapy, some of which have been useful in the short term. They do, however, all have something in common in that they are time constrained. Once the, for example, the six weeks of counselling ends the patient is left with nothing more. This is regardless of whether I have improved, or, not. In the past this has led to me feeing abandoned.

Lastly, but by no means least the Oor Mad History group gives me I reason for going out. When my depression is bad it is very easy for me spend days at home alone. The group gives me the motivation I would not otherwise have to leave my flat, thus stopping me from becoming more reclusive.

Testimonial by someone involved with CAPS Collective Advocacy

I have worked as a volunteer on the Planning Group of OOSOOM, as well as exhibiting.

This maybe counts as my first and most solid piece of evidence that this is a worthwhile activity. I am willing to invest time into this.

An art space dedicated to showing the unfiltered work of people with Mental Health Issues in their lives offers both a chance for them to communicate and a window into their lives. This is important, as it is hard to talk about mental health.

Mental health issues and the seeking of help with regards to your mental health come with a host of hurdles and even threats.

There is huge stigma related to mental health issues and opening up comes with the risk of eroding the respect or trust of those around you, or even infringing upon your rights as an individual.

There also may be things that either you or the support networks around you (family, doctors) may not know where to place on the gradient between trifle, concern, and emergency.

Getting these thoughts out in art, and displaying them in a non judgemental art space within the community where the mundane and the fantastical are given equal attention provides a voice, a conversation that might not have taken place.

That “silly thing” gets airwaves, or maybe you get to cry for help without a set of references and hospital visits.

Equally, you get to stand in and with a crowd.

My personal exhibit last year was a collection of my own work crowded and cramped together. This had a purpose. I wanted all thoughts out there, the good, the bad, the relatable and the strange all mixed to give the whole. In a collective exhibition it also had the thousand equally interesting, confusing, triggering, and beautiful thoughts of many others. A majority of the non-unanimous, a crowd of non-consensus.

We need places, particularly for the sufferers of mental health, where people are openly invited to be the “whatever the hell they are” in a safe, supportive, but public facing environment.

From my involvement in the group, I heard of and witnessed many instances of conversations and explanations manifesting themselves by discussions of the artwork, including the discussion of artwork by complete strangers.

Then for another group, the opposite achieved. People who are not burdened but overwhelmed by their mental health issues who are just showing us that they are still human, and still capable of creating beautiful objects, still there, even.

Every chance we give for someone to express themselves stitches up another hole in the net that so many people fall through.

It also encourages art making, which has long been accepted as a mode to therapy, as well as healthy discourse both inner and outer.

Art is an interesting place to drag your thoughts into. Slow and deliberate, it often allows a new level of focus, giving the creator the choice of how much to reveal in a thoughtful and measured way.

Conversely, but equal in value, surprises in the making process, and in the gradual manifestation of said thoughts on the page can often lead to a new understanding of the topic. I personally love it when a grievance or fear hits the page and becomes something beautiful.

Art is frequently seen as an optional extra, and I’d like to argue that here that is not the case. The voice of mental health sufferers is a fragile voice. Hard words in the throat, and easy words to stamp down.

It needs every stage that it can get, and art has always been one of the most vital and accessible of these stages to many that would otherwise have found themselves silenced.

Testimonial by a person involved with CAPS Collective Advocacy

There have been multiple aspects that I’d mention briefly during Amy’s time. She’d always listened to us, making each and everyone very welcomed and more importantly relaxed. I’d felt empowered, learned a lot, grown gradually in personal confidence and rebuilt trust in her safe care amongst our small community. Amy has been incredibly very effective in facilitating both open and focused discussions, a true enabler!

Thanks to her depth of work experience, great collaborations, myself and the rest of her LVs team members had been made to know meaningfully in time what’s been happening within and outside CAPs including many events / themes updates, the CPG in the Scottish Parliament being one of the examples (to me at least).

Indirectly Amy had taught me (impacted most positively on the rest too) very valuable communication skills, how to understand varied/complex information.

People’s Conference in Nov 2024 was so amazing in my view. Amy’s yearly patient detailed planning together with my group and sessions time management had assured me an unforgettable learning journey.

Testimonial by a person involved with CAPS Collective Advocacy

My involvement with Caps has now been five years, plus. They have supported me with Collective Advocacy in my whole time with them. I’ve been involved in many critical and peer lead projects that encourage engagement through peer sharing in a safe space. I’ve been involved in the publication of “Oor Mad History” book with many of my own lived experience quotes that have resonated with others, which was very important for me during my own mental health crisis and feeling my own identity whilst processing my own trauma. I’ve submitted Art to Caps “Out of Sound Out of Mind” exhibition, had opportunities to present to wide audiences throughout Third Sector mental health events and develop relationships with institutions such as University of Edinburgh (leading me to be involved with training of Clinical Psychologists). I’ve been involved in Policy reviews which bridges engagement between peers and service providers. And a whole lot more.

Collective Advocacy has been an integral part of my own recovery journey. The importance of peer reflected spaces are integral for those who experience challenges and difficulties of a familiar nature. Collective Advocacy is allowing others to have shared space that ultimately gives them an opportunity to share, listen and contribute if they choose. These are crucial in developing the models and understanding of creating trauma informed pathways. A peer sharing a similar experience eg. issues accessing mental health services or benefit and social security challenges. Peers benefit from others lived experience and at points in life where trust may be low and anxiety may be high, peers create space for others to relate. A space of empathy when they may not have it from home/work/family/friends and mental health professionals.

Collective Advocacy is an important opportunity for those with lived experience to connect. Meaningful, insightful, purposeful and inspiring conversations happen when peers share, hold space and work collaboratively. Personal experiences can leave people feeling captured. These groups create connection through the said, unsaid and perspectives of how and why we can create better. A collection of voices is stronger than a single voice and these types of groups revitalise individuals through safe and overseen engagements. If you take that away, you demolish pathways to collective hope, solutions, reflective spaces and common resources that people pull together. When we find it difficult to hold ourselves together, the relatable voices in the room, or through a computer/phone if online, seals gaps and creates reassurance. We volunteer our time and energy because we care.  

Testimonial by a person involved with CAPS Collective Advocacy

I’ve been involved for 7-8 years with CAPS in various projects over the years e.g. trauma group, EL CA, Art as advocacy and LV

It helps keep me in touch with myself a bit, makes me feel I am doing something constructive, and it gets me out of the house

It would lead to more social isolation. It’s important to see and realise you aren’t alone.  
Testimonial by a person involved with CAPS Collective Advocacy

I’m involved in the EL CA group and have come along to Lothian Voices meetings sometimes too.

It’s nice to be listened to and listen to others with similar issues, it makes you feel less alone and that you are possibly helping others too.

I would feel more lonely and not have a voice.

Testimonial by a person involved with CAPS Collective Advocacy

Since 2018, I’ve been involved with Out of Sight Out of Mind exhibition (OOSOOM) in many ways — as a visitor, exhibitor, planning group member, and as the exhibition assistant.
And yet, I sit here now struggling to find the words to explain what this exhibition truly means to me. How do I summarise something that has been a job, a creative outlet, a lifeline, a place of growth, a community, a family? It is all of those things — and so much more. And that’s exactly the problem.

I’m autistic, dyslexic, and live with long-term health conditions and mental health challenges. Words are difficult. I struggle to find the right ones, the ones that fit, the ones that carry the weight of what I feel. They often slip away, get tangled, or fall short of expressing the depth of my experience.

And yet, here I am — trying to use words to save the one thing that saves me.

Art.

This exhibition gives me a voice in a world where I often feel voiceless. It’s not just about creating or showing work — it’s about being heard. OOSOOM gives space to the kind of expression that can’t be forced into neat sentences or diagnoses. Here, I don’t need to explain myself in ways I can’t. Through art, I speak. Through this exhibition, I am understood.

Without it, I spiral — into silence, into isolation. Art is my connection to the world. OOSOOM is the only place where that connection feels safe, supported, celebrated. In this space, I’m not just tolerated — I belong.

It’s a window into lived experiences that are often overlooked or unheard, but that matter. Experiences that hold value, beauty, insight, and truth — and speak to the universal human need to connect and be seen.

Nowhere else have I found a community like this. Nowhere else have I felt so wholly accepted. Here, I have friends. A mad, loving family.

OOSOOM is the only place I feel able to be my full, authentic self. It gets me out of the house. It brings meaning to my days. It gives me something to look forward to, to work toward, to hold on to.

Please don’t take it away.

This exhibition doesn’t just support artists — it saves lives. It saved mine.

Testimonial by someone involved with CAPS Collective Advocacy

I’m one of the artists who has been supported over many years by CAPS, Out of Sight Out of Mind (OOSOOM), and Pam and the wider team. I was genuinely shocked to hear that their funding is under threat — and I want to be absolutely clear that I believe this would be a serious and damaging mistake.

Without OOSOOM, I know my mind would convince me there’s no place for me in the Scottish arts world — that I’m too crazy, that my work is too intense. OOSOOM is, for me, an annual reminder that I’m not alone — not by a long shot.

I’ve exhibited with OOSOOM most years since 2018 and was part of the planning group in 2022. Being involved with OOSOOM led me to participate more actively in the Scottish Mental Health Arts Festival, where I was shortlisted twice for their writing awards and won the Royal College of Physicians and Surgeons of Glasgow’s ‘The Prescription’ creative writing prize in the hybrid (art and writing) category.

Having my work about mental health taken seriously and supported has opened up so many doors: paid artistic commissions from Birds of Paradise, Sanctuary Queer Arts, Dash Arts, and others. It gave me the confidence to keep going.

In 2023, as part of the Scottish Mental Health Arts Festival, I received funding from Thrive Edinburgh to curate an exhibition asking: How do we show ‘difficult’ art without re-traumatising the artist or harming or triggering the viewer? I exhibited my own work alongside artists Carys Reilly and Chandelle Waugh, and we continuously reshaped the exhibition in response to the audience’s and facilitators’ wellbeing.

In 2024, I received a CAPS Thrive Arts Fund grant to develop a project called the Befriendable Black Dog — small ceramic sculptures designed to offer comfort during moments of distress. With that support, I was able to test, develop, and begin selling them successfully.

Honestly, even the threat of losing OOSOOM — or any of CAPS or Thrive’s services — has made me feel deeply anxious and unwell, especially alongside the looming cuts to disability benefits. OOSOOM has been a lifeline. The very first time I took part, I exhibited a painting I’d made in a psychiatric hospital, during a time when I believed I would never recover or be released.

As I told The Scotsman in 2022:

“ The painting I exhibited in 2018, Oma’s Cardigan, was one I had painted in a psychiatric hospital the year before. At the time I painted it I was sure that my career was over, as well as deeply afraid I was going to spend the rest of my life in institutional care. The painting is in Teeline shorthand, but a particularly garbled/abstracted version of it, and the text itself reflects how unhinged my mind was… it’s very much a visual proof of how ill I was at the time. It also isn’t immediately accessible to the viewer, which meant that the nurses and other patients didn’t really know how to respond to it and I felt incredibly unsure of its worth. Being able to display it at Out of Sight Out of Mind allowed me to see its artistic value and helped me in working towards going back to art college to do a masters in painting. It was the springboard to a whole new body of work there and it was the confidence and reassurance I got from Out of Sight Out of Mind that made that possible… It’s really the 2018 show that sums up, for me, what Out of Sight Out of Mind is about – I needed someone to take that painting seriously, to really look at it and see the confusion and pain and fear that I was feeling and I felt Out of Sight Out of Mind really held it and held me. I’ll forever be grateful for that.”

Of all the exhibitions I take part in, OOSOOM is the one that means the most. It’s a space where mental health is not just discussed — it’s central. It’s a place where I feel artistically and emotionally understood. I’ve loved working with Pam, whose kindness, clarity and belief in me has shaped so much of my artistic development post-hospital and post-art-college. She listens and encourages and shows genuine enthusiasm and care — not just for me but for so many artists navigating life with mental illness. Lauren, too, has been a huge part of that community of care and feeling of genuine peer-to-peer understanding.

When I feel like giving up, I think about OOSOOM, and it helps me keep going.

I honestly can’t believe anyone would consider taking money away from people like Pam and her team. If anything, they deserve more support, not less. Without OOSOOM, CAPS, and Thrive, artists with mental illness will receive the message that we are not worth investing in. Many of us won’t be able to make sense of the policy rationale — we’ll just feel rejected, silenced, and afraid that our worst fears about being too much, too chaotic, or not valuable are being confirmed.

I urge you — please — reconsider these proposed cuts.

Testimonial by a person involved with CAPS Collective Advocacy

1. I am a member of the following groups:
   Experiences of Psychosis,
   Lothian Voices,
   Community Voices.

Recently I got an Arts Grant towards the publication of my Memoir. CAPS organised everything.

2. I get the following benefits from Collective Advocacy:

a. We share our ailments and realise we are not alone.

b. We are able to gather people’s opinions and pass them on to the powers that be. The 2023 people’s conference was on housing and homelessness. We passed our findings on to the minister who came to visit us and to receive the findings.

c. I gain in confidence when we do workshops. My public speaking is improving.

3. My life would change. I rely on CAPS for the following:

a. To meet like-minded people.

b. To be able to influence mental health policy.

c. To get to know our staff.

If CAPS groups close, I would not be able to function properly. I usually have at least two meetings a week.

Testimonial by a person involved with CAPS Collective Advocacy

1. I’m involved in CAPS Experiences of Psychosis group, EOP.
2. I feel better and more open about my illness thanks to collective advocacy. We are not a support group but learning from other’s experiences has made me accept mine more. I have learnt a lot through this group and found what I am here to do. To take something in my life which was so negative for me and use it in a positive way. It’s made me a happier person and a person with purpose.
3. If CAPS were to end, I don’t exaggerate when I say I would be devastated. I’d feel a terrible identity crisis without CAPS. I feel we make such a difference to others life’s by sharing our experiences. I don’t know what I am meant to do without collective advocacy. It is genuinely a lifeline for me.  
   

Testimonial by a person involved with CAPS Collective Advocacy

How are you involved with CAPS?
I am involved with CAPS Much More Than a Label which is a collective advocacy group for people who have lived experienced of personality disorder.

What benefits do you get from collective advocacy?
As a CAPS volunteer, I have delivered training on lived experience of personality disorder to a wide variety of professionals including psychiatric nurses, student occupational therapists, art therapists and psychology graduates. These experiences have improved my ability to speak in public and deliver training which has helped me professionally, were I not in employment these skills could potentially help me gain employment. Through interacting with CAPs volunteers, I have developed a greater sense of what my own recovery means, built a sense of community with people who have similar experiences and have felt more able to sustain my own employment as CAPs makes me feel I am doing something positive to help others and gives me the resilience to keep working in social care.

What will be the impact on you if CAPS groups end?
My personal circumstances will not change if CAPS groups end, I am in the very privileged position of having secure employment, a home, a supportive wife and two young children and I have come a long way from the very unwell person I was in my teens and twenties. I have all these things because I grew up at a time where we resourced services properly and while things were not perfect, I had access to treatments and care which are not available to people in my shoes in Edinburgh in 2025.
The impact of CAPS groups ending for people less fortunate than I will be acute and devastating. The messaging from the EHSCP and IJB is that the Medium-Term Financial Strategy (MTFS) aims to protect the most vulnerable of our citizens. Many of the decisions which form part of the MTFS have involved no meaningful consultation with our most vulnerable citizens, and the failure to produce an easy read version of the IJB strategy, a strategy which is supposed to align with the MTFS, demonstrates the complete lack of thought being put towards communicating with the most vulnerable. Cutting collective advocacy services will be another step towards eroding the ability of our most vulnerable citizens to engage with and influence decisions being made which will have devasting consequences and lead people to live shorter, less dignified, and more difficult lives. The message which the EHSCP on behalf of the IJB have delivered to support services is that we have made people to dependent on services, how can we enable people to be more independent by removing services which allow people to engage less with statutory and more costly interventions like Housing Support and Care at Home? Everyone who works in mental health in Edinburgh knows the REH is overflowing with meeting rooms being used as bedrooms, a “surge” ward having been created in the old CAMHS inpatient unit and discharges taking place (and failing) due to a lack of planning and resource.
How do the EIJB suggest someone (for example) with severe and enduring mental illness who volunteers at CAPS, attends the Stafford Centre and receives 5 hours of housing support per week will cope when CAPs is gone, the Stafford Centre is gone and their support is reviewed (in a very person centred way obviously…) and reduced to 2.5 hours per week?
So the impact on me will really be that I will know that I live in a city where we do not value the voices of our most vulnerable citizens, where we pay lip service to including people in decisions we make about them, where we gaslight people experiencing mental illness into thinking they are not doing enough to help themselves and where people who have built communities and done immensely valuable work to influence policy and support EHSCP colleagues in their work will be more alone, less supported and all this in a climate where every other mental health resource in the city is being cut to the bone. This makes no sense, and it is dangerous, and it makes me ashamed to live in a city where so many people have so much and we are taking from those who have so little.
We are all acutely aware of the financial position of the EIJB, however, the solution is ambitious and bold change with all involved recognising there will be reductions in many services, but this must be proportionate, safe and give us some foundation to build on so that we do not continue to fail our most vulnerable.

Testimonial by a person involved with CAPS Collective Advocacy

How are you involved with CAPS?
Through CAPS LGBTQIA+ Advocacy
What benefits do you get from collective advocacy?
It gives me a voice to make a difference in queer accessibility to mental health support. Especially now, transgender folks need more help than ever.
What will be the impact on you if CAPS groups end?
The positive changes they are making for those involved, as well as those who use our services and attend our workshops.

Testimonial by a person involved with CAPS Collective Advocacy

How are you involved with CAPS?
I was part of their ‘Lothian voices’ group, I sometimes pop in if I am available and can make it. I was a member of Lothian Voices in 2023 when they were discussing the housing crisis impact on mental health.
What benefits do you get from collective advocacy?
I feel really welcome, comfortable, listened to and listening to others. The support and the creativity is really valuable and important. Community is supportive and you feel much less alone. It raises awareness and developing knowlegde.
What will be the impact on you if CAPS groups end?
There will be no place that is a safe space for expressing yourself and being understood and sharing and opening our minds. It is a vital support network for wellbeing, reducing isolation and builds connection, reduces stigma and reduces inequality.

Testimonial by a person involved with CAPS Collective Advocacy

How are you involved with CAPS?
Out of Sight Out of Mind exhibition
What benefits do you get from collective advocacy?
As a family support worker I have clients who benefit from Minority Ethnic advocacy, and those that are empowered in their wellbeing through participation in the out of sight, out of mind exhibit.
What will be the impact on you if CAPS groups end?
The service landscape would become less person centered as advocacy informs best practice.

Testimonial by a person involved with CAPS Collective Advocacy

How are you involved with CAPS?
Been aware of and involved with CAPS for many years as I worked in mental health
What benefits do you get from collective advocacy?
Support, enables positive change, provides feedback to providers/commissioners-increases individuals skills, confidence and sense of belonging.
What will be the impact on you if CAPS groups end?
See answer to 2 but the opposite! Lack of support, lack of feedback, increased isolation etc. Would be self defeating as likely to result in increased demand in already under resourced and full to capacity services.

Testimonial by a person involved with CAPS Collective Advocacy

1.    How are you aware of CAPS’ work?
I was introduced to the exhibition when a local art group I’d joined put a group submission into the exhibition a few years ago, then have put in an individual submission a few times and have helped with the volunteer Planning Group the last couple of years too.
2.    What benefits does Collective Advocacy bring?
As many people experiencing mental health issues can find it difficult or impossible to communicate or express themselves through conventional means such as spoken or written language, being able to be part of an exhibition which showcases the artwork and creative output of a diverse group of people from varied backgrounds and walks of life who have/do struggle with their mental health issues is incredibly significant. It highlights their struggles and personal stories in a way that I’ve never encountered before. It is hugely valuable as a means for others to peer into the turmoil of what living with severe, long term mental health is like for some people, and I think without that then too often people are stuck with often unhelpful labels, terminology, concepts and theories, but those things barely scratch the surface of what it means to live with these struggles, and yet they say “a picture paints a thousand words” for good reason! The OOSOOM exhibition literally gives these marginalised people a voice through creative expression. It is distinct, unique and trailblazing in its approach!
3.    What will the impact be if CAPS’ groups end?
It is blatantly obvious that with all the cuts going on in the health, care and charity sectors in particular, that there will inevitably be a significant increase in loneliness, isolation, and an exacerbation of various symptoms for many people. We will see an overall decline in people’s health. Some are bound to need more care via their doctors, community psychiatric team. Some may end up needing hospitalised. Tragically, I have no doubt, that if all these cuts go ahead as they have been proposed, then some people will take their own life as a result.

You who do not know or understand the reality of mental ill health, who have been lucky to never experience the overwhelming darkness, the despair, the pain, the misery, the fear, the draining of energy, of joy, of hope, should recognise your own good fortune and give others who have drawn the short straw a chance! You may not understand that in many cases mental ill health is caused by huge traumas in people’s lives, horrific experiences that often precede their decline in health and the horrendous aftermath of living with these things. Constantly trying to pick up the pieces, but finding it’s like sand falling through your fingers is endlessly draining and frustrating. You have no idea how important community groups are, including many charity organisations and their activities. Shame on you if you are ignorant and have no heart for those who have endured suffering you cannot imagine!

Testimonial by a person involved with CAPS Collective Advocacy

How are you involved with CAPS?
Experience of Psychosis group

What benefits do you get from collective advocacy?
-Using lived experience insights to impact mental health care and social understanding of psychosis-its not just a personal benefit but a wider social benefit.
-Friendships and social connection
-Shared sense of purpose
-In a landscape of individual mental health services, collective advocacy provides something special-it builds social connection, a sense of purpose and more impactful change and training

What will be the impact on you if CAPS’ groups end?
-Loss of the opportunity to improve mental health services and social understanding of important issues.
-Diminished voice of lived experience.
-Loss of the legal right to individual and collective advocacy, both of which are important parts of independent advocacy.
Testimonial by a person involved with CAPS Collective Advocacy
I should like to express my strong support that all proposed funding cuts to Caps Advocacy be reversed and funding be retained in full.
I suffer depression anxiety and ocd and have accessed and hugely benefited from caps, particularly the arts advocacy and oor mad history training. These enabled me overcome severe isolation and self destructive self harm behaviours and to connect with others and learn and heal. I’ve moved from a place of chaos and worthlessness to a situation where I now undertake several volunteer roles helping others and myself, which without help from caps and others would not have been possible.
In my previous paid employment history I worked with numerous caps service users over the years who avoided homelessness and poverty because of caps interventions. If these funding cuts go ahead it will not only cause extensive suffering to already vulnerable people but also prove counter productive and expensive by increased homelessness, accident and emergency and other hospital admissions and other impacts upon statutory and third sector agencies
Please, please act ethically and professionally and fully reinstate funding  

Testimonial by a person involved with CAPS Collective Advocacy

I’m a member with CAPS and have been for 10 years.
I’ve done varies projects with them and it’s been a lifeline for me.
Collective Advocacy has made me very knowledgeable on people’s needs and being there for them and myself.
The impact of CAPS being scrapped is shameful on those whom don’t understand the Great Need for CAPS ADVOCACY and the work they have done and continue to do for People’s Voices to be HEARD.

Testimonial by a person involved with CAPS Collective Advocacy

I have been in touch with CAPS since about 2007. I’ve always defended CAPS when it was under threat of reduction of funds, loss of contract etc.

The OOSOM exhibit has been an annual challenge to produce artistic work. The Experiences of Psychosis group has been a wonderful benefit to me and my contemporaries.

People will lack means of promoting their mental health.

Testimonial by a person involved with CAPS Collective Advocacy

How are you aware of CAPs work? I am aware of CAPs work because my twin brother has been involved with the Out Of Sight Out Of Mind exhibition that is on yearly at summerhall for the past 4 years and I have attended every year, and was hoping to also make a piece to put forward myself. The OOSOOM exhibition is literally the most moving exhibit I have ever been to, i will never forget the first year I went and i cried my way round the whole thing, it is so rare to see humanity on full display in its most painful, real, tender and vulnerable state – just so special! words really cannot express what it means. All the peoples art, every piece is so unique, SO special, so breath taking! I struggle every single day with my mental health and have for decades at this point and getting to see this exhibition every year is so important to me and for my twin brother to be apart of. He too has struggled for decades and i know being apart of this group has been one of the best things in his life, he has struggled to socialise or make art, and he is really an artist at heart – so this exhibition really pushed him to try! in a way he hadnt in many years. So this is how i know about CAPS.

What benefits does Collective Advocacy bring?
The benefit collective advocacy brings is that it allows us to know we are not alone, becuase struggling with our trauma is so isolating – so to have a place where you can come together with others is the most important thing around. It brings people together, creates community, it empowers people, inspires people, challenges people, brings awareness and helps others to get involved who maybe wouldnt. It also just gives us a space to exist in a world that basically wants to pretend we dont.

What will the impact be if CAPs groups end?
I think the impact could be truly devastating, people with mental health and trauma are struggling desperately and for some people this is the only thing they might have that helps them cope or feel like their life has meaning. Taking that away from people is very dangerous. One of the major feelings of being unwell is feeling completely powerless, hopeless and oppressed – and to take this space and these groups away from people could be detrimental to people who are already hanging by a thread. The world is an extremely difficult place to be, we need groups like this now more than ever. There is NOTHING more important than helping each other, and that’s what you do, and whoever is in charge of funding should be doing everything in their power to support you.

Testimonial by a person involved with CAPS Collective Advocacy

I have been attending/volunteering with the OMH advocacy group for around a year and a half; I came across the group whilst looking for volunteering opportunities in Edinburgh. My own personal experience with ‘madness’ was a period of mental turbulence from 2019-2021, which was diagnosed as delusional psychosis. Since getting involved with OMH I’ve discovered that CAPS also has a dedicated psychosis group- whose funding is also currently threatened- which I’ve been contemplating getting involved with. As I’m no longer experiencing psychosis and well understand the factors surrounding my prolonged episode however, I’ve enjoyed instead the diversity and richness of the OMH group. Although 18 months isn’t all that long, I’ve met a variety of people from different walks of life with very different experiences of mental health, and have enjoyed the rounded discussion and understanding which comes with that. That said, those who do not wish to open up about their own experience of mental health ‘issues’ are also welcomed and respected members of the group.

In addition, OMH has provided the opportunity for semi-formal research into mental health, as well as the platform to contextualise and even normalise these experiences. I can also see that for those who may have experienced exclusion or societal trauma as a result of their mental health, the group provides a means of re-integration. It seems to me that these functions are economically beneficial in two main ways; firstly they provide a release valve and safety net to NHS mental health services, and secondly this outlet can mitigate workplace pressures to encourage rehabilitation into the workforce and reduce absenteeism for those with ongoing conditions

The group has been efficiently and coherently run and administrated. When I briefly expressed some minor reservations about the framing of the group in certain contexts, these were quickly and adequately addressed, and my respect for the professionalism and humanity of those involved in running the CAPS group has only deepened.

I have very much enjoyed my involvement with CAPS and OMH, and the connection, however fleeting, with all those I’ve met thus far. My limited understanding of the OMH tradition and community is that it has endured various political difficulties and hurdles over the decades, and I have faith in its capacity to do so again. However, the restriction of this valuable amenity would do a disservice to all those who have attended and invested in the group, and would set back the cause of community mental health by restricting the continuity of engagement. In this sense, the preservation and documentation of the archives only becomes more pressing as this continuity of community engagement is threatened. In a way, the struggle against political constriction and alienation is precisely the raison d’etre of the Oor Mad History group, and the wider international ‘Mad’ movement. The withdrawal of funding risks being counterproductive in multiple, profound ways.

Testimonial by someone involved in CAPS Collective Advocacy

I should like to express my strong support that all proposed funding cuts to capsadvocacy be reversed and funding be retained in full.

I suffer depression anxiety and ocd and have accessed and hugely benefited from caps, particularly the arts advocacy and oor mad history training. These enabled me overcome severe isolation and self destructive self harm behaviours and to connect with others and learn and heal. I’ve moved from a place of chaos and worthlessness to a situation where I now undertake several volunteer roles helping others and myself, which without help from caps and others would not have been possible.

In my previous paid employment history I worked with numerous caps service users over the years who avoided homelessness and poverty because of caps interventions. If these funding cuts go ahead it will not only cause extensive suffering to already vulnerable people but also prove  counter productive and expensive by increased homelessness, accident and emergency and other hospital admissions and other impacts upon statutory and third sector agencies 

Please, please act ethically and professionally and fully reinstate funding 

Testimonial by someone involved with CAPS Collective Advocacy

If the proposed funding cuts to community mental health services in Edinburgh go ahead, it will signal the end of an era of community development spanning four decades. Remarkably, it was the actions of a Conservative government that first opened doors for groups of marginalised people routinely treated like second-class citizens to become active participants in their local community and national polity.

Whatever debates there are around the key factors that led to the emergence of a thriving culture of collective advocacy in Edinburgh and the Lothians, there can be no doubt that this region, with CAPS at its centre, led the way in Scotland in terms of involving people in decision making that affects their lives.

One CAPS creation that captures the significance of its role in fostering active citizenship and community development is the Oor Mad History project. This community history project was established nearly twenty years ago, bringing people together and bringing to light the rich traditions which sustain the social connections and collaborations that CAPS has been pivotal in creating and maintaining for so long.

I started to work with the Oor Mad History archives back in 2012 when I undertook research on the history of collective action by psychiatric patients in Scotland. Oor Mad History has pioneered history from below, community history, which puts the stories and perspectives of marginalised groups front and centre. It has been a privilege to work with this collection of archives and oral histories and some of the great people who created it.

People need time, space and a sense of place. They need connection, belonging, purpose and meaning. From the early days of Oor Mad History, the project has provided all of that and more. Facebook was only a few years old, Twitter was a year old, and the iPhone just months old, when the first seeds of Oor Mad History were planted in 2007.

Since those early days, the technological and electronic carapace that surrounds us has grown, mediating much of our existence today. Those who started Oor Mad History recognised the importance of spaces, especially organic spaces. Virtual spaces may occupy much of our lives now, but from the beginning CAPS was rooted firmly in the Lothians and Scotland.

That sense of place and rootedness in a local and national culture and polity has been part of the identity of CAPS from the beginning and integral to those organic, claimed and created spaces that have been opened up since its inception. These embodiments of civic consciousness are as vital now as they were in 1991 when CAPS came into being.

Oor Mad History has told the stories of people who had traditionally been excluded from the historical narrative, but also from local and national conversations. Recently, Oor Mad History has built a digital archive, making some of its extensive paper archives accessible at the click of a button, or tap of a screen, wherever in the world you may be.

If the cuts go ahead, those spaces and opportunities to gather will be closed down and many people will be deprived of a voice in relation to local services and policies. Those opportunities for time and space, a sense of place, connection, belonging, purpose and meaning – all cut off. Should we just leave people to their devices and fob them off with an app to keep them connected?

Living, breathing, embodied communities need places to go and people to be with. It would be a great shame if Edinburgh, after leading the way in collective advocacy in Scotland, would take such a short-sighted decision to deprive these valuable projects of the material resources and civic spaces they need to serve their communities.

Testimonial by someone involved with CAPS Collective Advocacy

I am a member of the Out of Sight Out of Mind Planning Group.

Evidenced-based protective factors against suicide for those without dependents and not accessing healthcare services include having something to look forward to, something scheduled in the future and a social network of friends, family and colleagues (O’Rourke etc al., 2023, Suicide Screening and Prevention).

These are factors that are provided by community centred mental health collectives such as Out of Sight Out of Mind (OOSOOM). It is not a healthcare service. Which is why it is effective in improving long term health and wellbeing.

What OOSOOM offers participants, are the fundamental components of what it means to be well. It is a safe space where people can find community and connection as the person they want to be, beyond a label or a diagnosis. It a space where meaning is created through art and meaningfulness occurs through being seen and heard. These evidence based components to wellbeing are what community centered health delivered by grassroots organisations excel at creating.

A short summary of my analysis of how OOSOOM creates health and is a health asset is in the link below. The analysis brings together academic evidence with what the exhibition means to people

https://www.outofsightoutofmind.scot/what-does-it-mean-to-you-2024

From the article….

“Seeing the exhibition as a constellation rich in relationships provides a way of describing why the accounts of what the exhibition means to people are so diverse and why some are deeply personal. People relate to different parts of the constellation and reassemble the relationships that they connect to into their own constellations of health and wellbeing. Some meanings are fleeting, where it is another exhibition and have a temporary effect on health and wellbeing. Some meanings become part of identities, built up from multiple encounters over time, becoming a steady source of health creation. In this way, how the exhibition becomes a health resource or asset can be seen”

My experience highlights the long term impact of a preventive health asset like OOSOOM.

Seven years ago, I was well and looking to share my evaluation skills. CAPS offered me a different opportunity and asked if I wished to volunteer on the planning group for OOSOOM, assuring me that having no knowledge of exhibitions or art was not a barrier. I gained benefits from volunteering which directly led to being accepted on a post-graduate programme to study community centered health and start a new career as a social researcher. Having a job you enjoy, has been shown to be a key component to wellbeing.

During the pandemic, lockdown and other life events occurred that pushed my default coping mechanism of passive suicidal ideation towards the active. Suicidal ideation makes you feel like the world is an unfriendly place that is not meant for the likes of you. The activities that gave me purpose and the communities I tried hard to be part of disappeared. Only my dog and OOSOOM kept me from withdrawing from the world. The community OOSOOM creates means you feel safe turning up to meetings as your worst self. There is no judgement for not being able to contribute, it’s safe to not fake being fine, people were genuinely glad I was just there. This was something I hadn’t expected to experience in my life and was powerfully impactful on my wellbeing. Continuing to turn up to meetings, having scheduled dates, and just knowing OOSOOM existed and always accessible, kept me tethered to the world. The online launch of our exhibition during the first lockdown was unexpectedly emotional as I was not the only one for whom OOSOOM was a source of joy and comfort at this time. To be part of something that meant so much to other people made me feel like that maybe I had something to offer to the world. 

There is no service for when I am unwell as I don’t have diagnosis. And I don’t feel my issues are as serious as other people’s as I still function. I do not have depression so I would not go to a GP and receive  a medical or social prescription.  Therefore all the improvements these cuts aim to make to services would not reach me as I would fall past services and crisis and straight into not being here. 

OOSOOM provides the protective health factors of activities that are purposeful and meaningful, that is scheduled all year round to look forward to. Enabling participants to develop another protective health factor, as over time, the connections created through meaningful activity, naturally turn into a social network. For me OOSOOM are friends, family and colleagues combined.  

I didn’t know I needed CAPS and OOSOOM. I didn’t know that it was possible to be the person I am today thanks to being part of their collective. They are more than healthcare services, they keep people not just in this world, but with the best parts of this world and being human. 

Testimonial by someone involved in CAPS Collective Advocacy

I have been involved with/around MMTL since its inception. I have witnessed the impact the training has on helping people make sense of themselves,those they care about and those they work with.Given those who attract a diagnosis of “personality disorder” continue to experience stigma and discrimination across services the programme offered by MMTL remains an important powerful component of addressing this at a local level. The resources generated have offered people a means of self directed reflection and learning, and are tools which can bring those with lived experience and clinicians together. I know the opportunity to be involved in collective advocacy and education has given people a sense of connection, understanding, empowerment and hope which they gave them been able to harness in other aspects of life. There is much to be lost if funding is withdrawn.

Testimonial by someone involved in CAPS Collective Advocacy

I am writing to express my heartfelt support for the continuation of the Out of Sight Out of Mind (OOSOOM) exhibition.

As someone who has personally experienced psychological pain, I know how difficult it can be to face such struggles alone. Many people suffer in silence, unaware that their pain is not unique or shameful. Art can break that silence. OOSOOM, through its sensitive and powerful exhibitions, helps individuals realise that they are not alone — that others have gone through similar experiences and that there is strength in vulnerability.

Before now, I did not know this exhibition existed. Learning about it made me wish I had discovered it earlier — it could have helped me, as I believe it helps many others. I truly hope more awareness can be raised about this project so that those in emotional distress can find comfort, solidarity, and healing through this space.

OOSOOM is not just an art exhibition; it is a vital platform for connection, expression, and mental health advocacy. Please ensure its survival beyond 2025. We need spaces like this now more than ever.

I will also be recommending this socially meaningful and truly supportive project to my friends, so more people can benefit from what it offers.

Sincerely, L.X.

Testimonial by someone involved in CAPS Collective Advocacy

I visited the Edinburgh In-Visible exhibition last year and found this to be a very inspiring experience. My mental health problems have isolated me somewhat, yet after my visit, I felt I was not alone. There was so much to view and read, and many meaningful testimonies to relate to.
It was interesting and uplifting to see all the different ways people chose to express their issues and feelings, and it was thus such a positive experience. Seeing sometimes quite negative experiences turned into creations, and therefore something positive, it seemed like it didn’t much matter how skilful the use of the medium was, it was more about heartfelt expression.

Testimonial by someone involved in CAPS Collective Advocacy

I visited the Edinburgh In-Visible exhibition last year and found this to be a very inspiring experience. My mental health problems have isolated me somewhat, yet after my visit, I felt I was not alone. There was so much to view and read, and many meaningful testimonies to relate to.
It was interesting and uplifting to see all the different ways people chose to express their issues and feelings, and it was thus such a positive experience. Seeing sometimes quite negative experiences turned into creations, and therefore something positive, it seemed like it didn’t much matter how skilful the use of the medium was, it was more about heartfelt expression.

Testimonial by someone involved in CAPS Collective Advocacy

Creativity can be a powerful force for mental health

Gardening, is a journey where an empty plot becomes a living sanctuary, tending and nurturing seeds brings colour, life, and transformation to bare soil, creating a space of rest and renewal. Painting offered me a similar refuge; it was a way to escape into shapes and colours when words failed me, to give form to feelings I couldn’t express otherwise. Through these acts, I realised that even the smallest gesture of creation, like planting a seed or laying down a brushstroke, can spark positive change.

Testimonials from other organisations and professionals

Statement in support of CAPS Collective Advocacy from the Mental Health Foundation

We are very concerned to hear that the future of CAPS’ Arts as Advocacy programme is under threat, including the annual Out of Sight, Out of Mind exhibition. Ever since it began in 2013, the exhibition has been a vital part of the Scottish Mental Health Arts Festival (SMHAF) programme.

The exhibition supports, champions and empowers hundreds of artists – many of whom have gone through very challenging experiences – to make and exhibit powerful work about mental health.

As one participant expressed, ‘This is a place where someone who feels as inconsequential as me can have an impact.’  It is hard to imagine another event that so effectively captures what we aim to do as a festival – through sharing beautiful artworks, important mental health content and stories that inspire, uplift, and challenge us. Out of Sight Out of Mind powerfully aligns with our mission to promote mental health awareness and inclusivity.

Statement in support of CAPS Collective Advocacy from Museums Galleries Scotland

Out of Sight Out of Mind is a hugely valuable and rare project which centres people with lived experience of marginalisation and allows them to tell their stories and communicate the truth of their lives. In museums and galleries there is a growing recognition that the organisations are not doing enough to provide accessible and inclusive experiences for disabled people. There is low representation in the workforce and even lower in positions of management and leadership. Disabled people are a valuable part of society, museums and galleries should represent their lives and histories. The work of Out of Sight Out of Mind team is an exceptional example of creating a truly accessible space and experience. They have a lot to share with the museum sector and it would be a huge loss to lose this vital work and project.

Statement in support of CAPS Collective Advocacy

I’ve had the privilege of working with CAPS Advocacy on a Discovery Session in partnership with the Oor Mad History (OMH) group and the Lothian Health Services Archive at the University of Edinburgh. The session stemmed from a community workshop led by the OMH group, where they shared insights on the biomedical model, intersectionality, and the history of mad activism. Having worked in a health archive for several years, I can tell you that the history of psychiatry is rarely told from the perspective of the service user. In fact, the OMH group filled this problematic gap almost a decade ago, by depositing their archive with us, giving the collection new life and amplifying voices that often go unheard
During the workshop, the members of the OMH group spoke bravely about their struggles with mental health and their complex relationships with the healthcare system. Their stories were profoundly impactful, evoking deep emotional responses. I still reflect on the workshop today because the stories shared resonated so strongly—they left a lasting impression, and that was due to the unique perspective they offered. A perspective that is often invisible to the wider world: the rich, nuanced lens of lived experience. Lived experience is invaluable in challenging traditional narratives and reshaping our understanding of mental health. It’s not just about individual struggles; it’s about the collective strength of people who have navigated the mental health system and found ways to persevere. We need these voices carry the wisdom, resilience, and insight necessary to guide us toward a more compassionate and equitable healthcare system.
I left the workshop feeling inspired and galvanized to continue supporting the OMH group in their mission to highlight the importance of lived experience in understanding mental health and healthcare – which led to the delivery of the Discovery Session.
We need organizations like CAPS and groups like OMH, which empower people to take ownership of their own histories. Their work is vital, and we must continue to support and amplify these voices to better understand mental health, activism, and the transformative power of lived experience.
I am concerned that by removing groups like OMH, we risk losing access to these invaluable voices. The members who have found much solace in being part of a community group will have nowhere to turn, and the essential dialogue on lived experience could be silenced.

Statement in support of CAPS Collective Advocacy

I have worked alongside CAPS for over 20 years as a local authority officer and as a member of the third sector. Their commitment to supporting people to be heard, their honesty and courage about how they do that, and the way they work tirelessly to ensure those views and experiences are understood by statutory services and decision-makers cannot be underestimated. The removal of funding for Edinburgh-based services will not only have a detrimental and lasting impact the people who use those services now and those who would in future. It has the potential to impact CAPS work across the Lothians and any erosion of provision will affect all of us.

At a time when statutory services are already overwhelmed, it seems incredibly short-sighted to remove a highly effective provider of a wide range of services that offer early intervention and prevention. The loss of services will only result in an increasing number of very vulnerable people presenting to EHSCP, Edinburgh Council and NHS Lothian in crises that could otherwise have been averted. In some cases, it may also be separating them from their statutory right to independent advocacy.

The third sector is a delicate ecosystem and an affront to one of us is an affront to all. Please maintain CAPS funding and services.

Professor Jon Jureidini Research Leader, Critical and Ethical Mental Health (CEMH), School of Medicine, The University of Adelaide in support of CAPS

‘some of the most dramatic changes I’ve seen in my patients has been when they have found a role in advocacy. Taking away an opportunity to do that will deny a pathway to recovery’

See Me in support of continued investment in CAPS and Arts as Advocacy

CAPS Independent Advocacy, and collective advocacy is a lifeline for many people in Edinburgh and the Lothians. Continued investment in CAPS is critical to ensure people who face the most challenging inequalities are engaged, heard, supported and empowered to contribute to community and influence policy and practice change based on diverse lived experience.
Their Arts as Advocacy projects have a proven track record of breaking down barriers that people who experience mental health problems face, alongside other forms of marginalisation and discrimination. Through creativity they platform individual and collective experiences of marginalisation; sharing the reality of prejudice, stigma and discrimination and the impact it has. They challenge the status quo, rebalance power and make a clear call for fairness, equity and human rights for all.
Engaging people with diverse lived experience is central to public service delivery and reform, without effective advocacy the voices and contribution of those most marginalised will be lost.

Queen Margaret University in support of CAPS Collective Advocacy

1. How are you involved with CAPS?

As an education provider we have been involved with CAPS for over ten years. CAPS have created and delivered meaningful inputs about living with eating disorders and living with psychosis. These have been very well received by our learners who may be working therapeutically with persons with an eating disorder or psychosis. The insight that CAPS advocacy bring can support trainee therapists to consider how they can co-create meaningful therapeutic pathways.

2. What benefits do you get from collective advocacy?

It is essential to the learning of any health professional to include perspectives that come from lived experience. CAPS have created accessible resources that help to share complex personal experiences and ensure that our students learn to see the whole person beyond a pathology.

3. What will be the impact on you if CAPS’ groups end?

If CAPS groups end we would struggle to engage our learners with lived experience perspectives in a meaningful way.

Lothian Health Services Archive in support of CAPS Collective Advocacy

How are you involved with CAPS?
Lothian Health Services Archive (LHSA), based at the University of Edinburgh, holds the historically important local records of NHS hospitals and other health-related material. We collect, preserve and catalogue these records and promote them to increase understanding of the history of health and for the benefit of all.
As the LHSA Manager, I am involved with CAPS through the work my team has been doing with the Oor Mad History project. This has specifically involved the exploration of mental health and activism, especially through the prism of the historical records of 19th Century asylums and more recent activist archives, including CAPS own archival material.
The CAPS archive, donated in 2011 and 2013, contains a substantial number of oral history recordings and a paper archive collection generated by the project and is a testament in itself to the breadth of work with which CAPS have been involved.
Most recently, LHSA and CAPS have collaborated with the OMH group on two initiatives: the Understanding Oor Mad History course, a four-week community Mad Studies programme and a public Discovery Session. The LHSA team worked closely with Azra Khan (Collective Advocacy Worker, OMH) to include allow participants to look at their lived experience of mental health through the lens of our archival collections. This was an enriching experience both from the participant perspective and for LHSA. The course was booked at capacity, and will be running again in the late summer.
The Discovery Session, held in April, was a participatory research event based around items from LHSA collections. Participants from the OMH group joined a number of research workshops where they selected archival material that chimed with their own experience or was of specific interest to them. The event gave the OMH group participants, a means to voice and to explore their own lived experience in a way that more traditional research style workshops would not have done. Putting participants front and centre of this type of event made it much more powerful and attracted a wide range of attendees from the interested general public, heritage organisations, the University community, researchers into healthcare, and the voluntary and arts sectors.

What benefits do you get from Collective Advocacy?
LHSA, as the institutional archive for NHS Lothian focuses very much on the development of health and health care in our regions, as well as health activism and advocacy. The CAPS archive is a unique example of collective advocacy work and has added much needed balance to both LHSAs collections, but also to the understanding of mental health services, especially since many of our collections relate to hospitals and residential mental health care, rather than capturing the voices of the patients or service users.
Researchers across many disciplines are increasingly interested in these alternative narratives, exploring the history of mental health from the non-professional, non-clinical perspective. The historical record has been dominated by the voices of doctors, a profession that only permitted women to practice medicine in the mid-19th Century, so working with people with lived experience of mental health issues and capturing their history is vital to ensure that our key stakeholders, the residents of Edinburgh and the Lothians are properly represented.

Second statement from Lothian Health Services Archive in support of CAPS Collective Advocacy

What will be the impact on you if CAPS’ groups end?
The impact of CAPS groups ending would be significant for our community engagement activity. One of the University of Edinburgh’s key strategic aims is to work locally and nationally to deliver change for communities. Our work with the OMH group so far has brought new communities into our study and research spaces. For those who have not encountered the University environment before, libraries and archives can seem intimidating, so collaborating with Azra and the OMH group has allowed LHSA to work with participants inside a framework that is familiar to them, whilst also enabling them to explore material at their pace and from their vantage point. We have seen how we can adapt our services, facilities and methodologies to make our spaces and events more accessible and to use collective history as a way to inspire change and make our archives more representative. Without the CAPS team’s enthusiasm and expertise in working with lived experience of mental health, LHSA would find it difficult to fulfil our community goals.

Participatory research is a massively growing field in all areas – with funders and policymakers pushing for change. By participatory research, I mean any research in which non-professional researchers play an active role. For example, bringing lived experts into research as collaborators – having a say in the research directions, methods, interpretation, or outputs. Within the research sector, funders are pushing increasingly for this kind of involvement – for example, the health funder Wellcome has increasingly built in “involvement” as a core component of its funding mechanisms. UKRI/MRC has equally demanded involvement in non-clinical research.
From the process of developing the Library’s “Outwith” efforts – https://library.ed.ac.uk/research-support/participation – I’ve got to see first hand the changes wrought on research, and have had researchers coming to me explaining their greatest challenges. Third sector organisations such as CAPS, and projects like Oor Mad History and the community surrounding it are an essential part of this participatory future and can help researchers to address these challenges – while raising the profile of their partners and potentially securing overlapping funding opportunities. While sometimes researchers work directly with their lived expert partners, often it is far more fruitful for everyone involved to work with third sector organisations to help bridge the gap. This may be informally, through in-kind support in both directions, or increasingly frequently, in direct partnership with co-submissions in funding bids with sustained applications (ideally seeking “win-win” outcomes).
Regarding those challenges I mentioned – one example found towards the top of most lists concerns relationship building with diverse participants. Participant recruitment and retention is always difficult – but it’s even more so when it comes to ensuring that the participants come from diverse backgrounds (an ethical duty of research – but also – fundamentally – an important methodological and practical one). Research has a chronic problem – particularly participatory research – of reaching the same demographics (white, cis, straight, middle aged, and middle class). Reaching outside those demographics and building a trusting relationship can be extremely difficult – if not impossible. Working with third sector groups to mutual benefit can enable new avenues for research.
Another challenge is that of “Impact” – something that is, I imagine, the same challenge for CAPS! Getting the research – the voices from participants and the outcomes of their involvement – heard and listened to can be very tough. Whether that’s visiting Holyrood to inform MSP’s of the outcomes, consulting with journalists, or collaborating with policymakers – this is a key challenge for researchers today. Again, collaborating with third sector groups who have shared objectives can streamline this process for both parties.
Put simply: I wanted to highlight the reality that with the growth of Participatory research brings with it new opportunities for collaborations with third sector organisations that can be win-win situations. Most often the “wins” will be an extra boost towards overlapping outcomes. Sometimes there will be space to negotiate shared resourcing (though, honestly, this is rare and contingent on projects and funding calls!). But having witnessed the exceptional work CAPS has done with the LHSA, it really shows the potential here in the future. CAPs occupies a unique space as it exists currently – it’s a long history within the community in its various incantations, a trusted group of members, and active work to capture intersectional and diverse groups within the space of mental health – they are all richly important areas as a potential research partner. The game is identifying opportunities for future mutually beneficial collaborations!

Statement in support of CAPS Collective Advocacy

I worked with CAPS Independent Advocacy after early retirement from health and social care in Edinburgh after varied career as a social worker and learning development team leader. At one point I supervised the person who co-ordinated the program for mental health officers.

In my five-year contact with CAPS, I learnt how important collective advocacy was and how social care staff learnt to respect the voices of people with lived experiences and it certainly influenced their practice.

The other important lesson from both individual advocacy and collective advocacy is that people working in statutory services, by definition, cannot offer the independent support that people need. Many of us who were trained in the 1970s believed that they could be advocates and it was part of our learning that that was a misleading offer to people.

I am very sad to hear that the funding for Collective Advocacy is going to be withdrawn because it has enabled people with lived experience to present coherent views about how the community should respond to people who label as having mental health problems. I have personally seen how people who would have never expected to be heard, discover their own ability to influence how society deals with issues that affect everybody. From the point of view of individual advocacy I would have thought that the loss of collective advocacy will narrow their own connection with the voice of users of the service.

 The courses that have been run designed by people with lived experience has come out of collective advocacy and have always been well received. The Arts Project which has been a very well attended annual event has been the imaginative way of expressing what collective advocacy is all about.

I very much hope the decision to stop the funding may be reversed.

Statement in support of CAPS Collective Advocacy

As a historian of medicine and mental health based in Edinburgh, I’ve had the immense privilege of working with members of CAPS Independent Advocacy over the past several months on a deeply meaningful project exploring mental health-related archival collections at Lothian Health Services Archive (LHSA). This collaborative journey culminated in a powerful exhibition curated by lived experience experts. The archival sessions leading up to the exhibition were very much led by the curators, who selected materials based on topics and themes they were particularly interested in. This included women’s experiences and treatment in nineteenth century asylums and in more recent mental healthcare systems, the ways in which different illnesses were diagnosed and conceptualised or talked about in the past and the legacy of art as activism and advocacy in mental health. Everyone brought their own perspectives, expertise and experience together to explore, interpret and ask questions about the materials and to talk about the stories contained within them.
This project was grounded in a belief that participatory, inclusive research, an engagement with archives and the past and an acknowledgment that all forms of expertise- including lived experience – are valid and equal. Participatory research is not just academically valuable—it is essential. It challenges conventional hierarchies of knowledge, centring the voices of experts by experience. Through their insights, we can access deeper truths about the complexities of care, identity, and advocacy, past and present. Participatory projects like this matter because they foster inclusion, build community, and open up space for constructive dialogue and change. They show how engaging with archives and history can support healing, understanding, and empowerment. This work has shown me that lived experience brings emotional nuance, cultural context, and narrative depth that traditional research methods often overlook.
CAPS’ work—whether through projects like this recent collaboration, or through their annual Out of Sight Out of Mind exhibition—does more than support individuals with lived experience. It enriches the broader cultural and academic landscape. Personally, attending a CAPS exhibition in 2015 sparked the entire trajectory of my academic career, from my undergraduate dissertation to my PhD exploring creativity in psychiatric settings.
The value CAPS brings to individuals and society cannot be overstated. They create opportunities for people to be seen, heard, and meaningfully involved in shaping how mental health is understood—historically and today. Their work fosters equity, informs better policy, and drives social change.
That is why ongoing, secure funding for CAPS Independent Advocacy is not only justified—it is urgent. If we care about inclusive research, social justice, and transformative advocacy, we must invest in the organisations that make it possible.

Third statement from Lothian Health Services Archive in support of CAPS Collective Advocacy

How are you involved in Collective Advocacy at CAPS.
I am involved with CAPS through my role as Archivist for Lothian Health Services Archive (LHSA), NHS Lothian’s archive inside the University of Edinburgh. LHSA collects archives from local hospitals and historic material about healthcare in the Lothian region. We are the largest health archive in the UK.
LHSA has been involved with CAPS since the first Oor Mad History (OMH) project exploring the history of the mental health service-user movement in Scotland. In 2011 and 2013, CAPS donated a substantial number of oral history recordings and a paper archive collection generated by the project to LHSA. Since then, OMH group members have visited LHSA to research records of both the service-user movement and of nineteenth century psychiatric institutions (“asylums”).
In 2025, LHSA and CAPS collaborated more closely with the OMH group on two initiatives. During February, we hosted the Understanding Oor Mad History course in the University of Edinburgh’s Centre for Research Collections, where LHSA is based. Understanding Oor Mad History is a four-week community Mad Studies programme. In partnership with Azra Khan (Collective Advocacy Worker, OMH), we added an archive component to the course, and participants have accessed collections from both the service-user movement and asylum records held in LHSA. The course was booked at capacity, and will be running again in the late summer.
In April, CAPS and LHSA hosted an extremely successful public Discovery Session in the Centre for Research Collections. This participatory research event was based around items from LHSA collections selected by members of the OMH group after a number of research workshops. The event demonstrated the power of lived experience voices in research around the history of mental health care, with OMH group members interpreting their chosen archive material with the perspective of their lived experience. Attendees came from the interested general public, heritage organisations, the University community, researchers into healthcare, and the voluntary and arts sectors.

What benefits do you get from Collective Advocacy?
As an institutional archive (that is, the archive for NHS Lothian), we have gained an enormous amount from our involvement in the OMH programme over the last 14 years. The collections that CAPS have deposited with us as an output of their collective advocacy work have added enormously to the public memory of the history of mental health services, and provided a much-needed counterpoint to our hospital-centred collections (where the primary voice is that of the physician). Archives donated by CAPS centre on voices that have been marginalised in more traditional psychiatric hospital collections and in the history of mental health services more generally – that is, the opinions and perspectives of the individuals receiving treatment. This service-user history is of increasing interest to researchers from a range of backgrounds, from more traditional academic research to innovative participatory research programmes. Most importantly, both the collections donated by CAPS and the education and outreach work in which we have partnered work to ensure that the main stakeholders of NHS Lothian are represented in the collections – that is, the residents of Edinburgh and the Lothians.

What will be the impact on you if CAPS’ groups end?
The prospect of CAPS groups ending will have a significant impact on our community programmes, which are key components of strategic planning within the University. Our work with the OMH group so far has brought new communities into our spaces, which can seem intimidating to people outside the University’s staff and student body. Collaborating with Azra and within the structure of the OMH group has allowed us to work with participants inside a familiar framework, and has meant that we are exchanging knowledge with OMH group members to make our spaces more accessible and to use collective history as a way to inspire change and make archives truly representative.  

Statement from Mental Health Network Greater Glasgow in support of CAPS

How are you aware of CAPS’ work?
I have in the past reach out to CAPS to promote the uptake of Advance Statements and other proactive ways people with a lived experience can build a ‘care partnership’ with their mental health services that better reflects their needs. I have used CAPS materials in relation to Advance Statements many times with people who wish to make an advance statement as I find them accurate and accessible.

What benefits does Collective Advocacy bring?
Collective Advocacy enables a more holistic view of the current social context our mental health system operates within. The interaction between the social and the medical is often very nuanced and no one individual service has all the answers in terms of addressing mental health crises and responding to severe emotional distress. It therefore makes sense for strategic partnerships planning to address these issues to have as up to date and comprehensive a picture of local services and issues as possible.This seems to me to be essential in order to maximise the impact of the already limited funding available at this time.

What will the impact be if CAPS’ groups end?
Your planning partnerships will be less informed regarding the social/medical context that services operate within and therefore be less able to respond to issues in a proactive, creative or localised way. There will knowledge ‘gaps’ in the planning and evaluation of services, this will lead to a diminishment in quality and ultimately make services less effective. In the medium-long term this will lead to an increased demand for services and support, therefore I feel that any financial savings gained from these cuts will be self-defeating, leading to an increase in demand for services and support, a lowering of quality of service and support and distancing of the relationship between people with a lived experience and those who plan or provide support and services.

Statement in support of CAPS from Dr Autumn Roesch-Marsh (she/her), MSW, PhD, SFHEA Senior Lecturer in Social Work

Out of Sight, Out of Mind has become an important moment in the yearly arts calendar in Edinburgh for so many people. It raises awareness and connects people, helping people to empathise with themselves and others around themes of mental health, mental illness and stigma. The way the exhibition is curated is also ground breaking – using peer advocacy as an approach to co-creation means that there is a congruence between how the exhibition is made and the themes it explores. This means it really reflects the values that people with lived experience feel are important. For my students at the University of Edinburgh it has been a privilege to learn from the Out of Sight, Out of Mind Team over the last three years as they have provided a guest lecture on my course Creative Social Work and the Arts. Students are challenged and inspired by the work of the project and it grounds their theoretical learning with a successful and inspiring real world example. This project has such an amazing history and so much local support and love behind it, we cannot loose this, if we do it will not be easy to re-create. And now, more than ever, these conversations and connections are needed.

Statement in support of CAPS from VOX Scotland

CAPS Advocacy have been a cornerstone of mental health collective advocacy in Scotland for over 3 decades, enabling marginalised groups to have their voice heard in a way that is led by them and supporting people who often have no other safe place to turn. They are an invaluable group member of VOX Scotland, contributing to important research, awareness and local mental health issues, helping to change service provision for the better and, thus, the lives of those they support.
Collective advocacy is a statutory duty and is recognised as such in the Mental Health Care and Treatment Code of Practice, and by the SIAA and the Mental Welfare Commission, along with local authorities in Scotland. Budget constraints cannot justify cutting these vital collective advocacy groups, without consultation or consideration of the gap they will leave, silencing the voices of those who attend and lead them.
We support CAPS advocacy wholeheartedly in their campaign to challenge these proposed cuts and stand with them in support of the collective advocacy movement in Scotland.

Statement in support of CAPS from Dr Sean Harper, Director of Psychology, NHS Grampian

How are you aware of CAPS?
I worked with CAPS experience of psychosis group for many years in my previous role in NHS Lothian. The group consulted, co-produced and co-delivered a training programme for psycho-social interventions for psychosis in which I was involved from the outset. This training programme has become a key part of the national training programme run by NHS Education Scotland for key mental health staff and is highly regarded at a national level. The unique contribution of the CAPS group from the outset in terms of true co-production sets this programme apart in terms of expert by experience collaboration.
I also continue to have the fortune of interacting and consulting with members of CAPS in other aspects of my work through the Diana Manson Research Collaborative, which is named after a former CAPS member with respect to the legacy of her work in this context, which speaks to the high level of regard with which we hold the opportunity to engage, consult and collaborate with the psychosis expert by experience group.

What benefits does Collective Advocacy bring (to you/others/services)?
The benefits are as described above, but in summary from my perspective, the group offers real opportunity to collaborate on multiple aspects of clinical service improvement, training and research, which otherwise is not available in my experience.

What will be the impact if CAPS’ groups end?
We would lose the most effective group of experts by experience consultants that I have been fortunate enough to work with for the benefit of improvements in our clinical services.
I am aware the group provides much wider function in terms of the support and empowerment of people who may find it difficult to be heard.
Thus I think it is a major risk to lose such valuable collective forums as we look to try to maintain and indeed improve our services especially in the current challenging context.
A statement from film director Chris Teerink, who is collaborating with the Oor Mad History project on a film about Madness:
To whom it may concern,
As an independent Dutch documentary filmmaker – currently working on an international film about mental health, supported by the Netherlands Film Fund – I would like to express my support for the Oor Mad History project. The systems upon which we have built our lives are increasingly failing us in many areas. The psychiatric systems, which are – at least in part – a legacy of the past, are no exception. People suffer, and some even die, as a result. However, in my experience as a filmmaker and researcher, I have seen firsthand how alternatives to the current system can work far more effectively – and are often even less costly.
These alternatives are grounded in a different understanding of what mental health is, could be, or should be. As the number of people experiencing mental health challenges continues to rise in many countries, the need for change is undeniable. But where do we go from here? To understand our present – and indeed to shape our future – we must first understand our past. A person, or a country, without a past cannot have a future. Mental health is no exception. As a filmmaker who sees it as his responsibility to reveal why things are the way they are, I believe it is crucial to preserve and examine not only the distant past, but also the recent past. After all, today’s present will become tomorrow’s history. More importantly, if we fail to learn from past mistakes, we are doomed to repeat them. It is therefore vital that the Oor Mad History project can continue its important work.
As an outsider who has critically observed the world for over forty years, I see this project as an essential part of an ecosystem that deserves support – not resistance. I understand that the decision to propose this cut may not stem from a lack of vision, but rather from necessity. Still, I hope that alternatives can be found, and that the valuable work of the Oor Mad History project can carry on.
Yours sincerely,
Chris Teerink Amsterdam,
the Netherlands.

Testimonial in support of CAPS Collective Advocacy

As part of the MAT standards of care,  independent advocacy is an essential component for inclusion of those with lived experience in our service review towards trauma informed care. Those who have participated in Lived experience panel conversations have expressed the value of advocacy services in supporting them to voice their view of services, and to actively engage with involvement in service changes. 

Empowering those we work with towards recovery requires independent advocacy.  If we are to meet service standards; this is an essential service to maintain. 

Testimonial in support of CAPS Collective Advocacy

In support of Arts as Advocacy at CAPS

If Scotland as a country denies access to the arts to empower people to improve their health literacy and health and well-being to prevent inequities in health, the barriers of injustice and inequalities will increase in Scotland and Edinburgh as a City.

Health Justice through the Arts

The art of the spoken word and the arts, as a form of advocacy, enable people to express their humanity and creativity as both individuals, and as a collective community, and helps to improve people’s health and well-being.

Testimonial in support of CAPS

I recently heard of the potential funding withdrawal from CAPS projects and feel the need to write to express my concern. This would be a devastating blow for many people in the Lothians who rely on or have benefitted from CAPS in innumerable ways. Losing independent advocacy would have direct health and wellbeing impacts on people who are already marginalized and underserved. This risks creating even greater health inequities and runs counter to the aims of international standards such as the new WHO mental health policy and the UN CRPD.  

The collective advocacy work that CAPS has undertaken, carefully documented through oral history and archival research and artistically captured in multiple exhibits, is groundbreaking community-led work.  I say this as a scholar located in Toronto, Canada who has travelled to Scotland to view the Out of Sight, Out of Mind exhibit, and has cited the work of CAPS on numerous occasions in peer-reviewed journal articles (even one this week!). What they are accomplishing has been laying the groundwork for service user advocates elsewhere, on an international scale, demonstrating the importance of community, individual and collective voice, and the ongoing need for independent advocacy. While essential at home in Scotland, these projects also have much further reach. So, I implore whoever has the power, to please maintain funding for CAPS now and into the future.

Testimonial in support of CAPS from Redhall Walled Garden SAMH

SAMH is in its third year of facilitating submissions to the Out of Sight Out of Mind Exhibition (OOSOOM).
For our Service Users, creating their own piece or contributing to a group submission is more than creating art, it is a tangible, structured project. From the earliest planning stages, they learn to work to a deadline, commit to a shared vision, collaborate with others, and manage their time effectively. These are the same skills that help them progress toward personal goals such as employment, volunteering, or education. The grounding they receive through our community garden of collaboration, attention to detail, and care for a shared space, transfers naturally into the commitment and teamwork of preparing an exhibition piece.
More than half of our core cohort of Service Users have not only contributed their own artistic expression to the exhibition but have also visited the gallery together as a group. This shared experience is a celebration of achievement, a moment of pride, and a chance to see their creativity valued by the public, often for the first time.
When people living with mental health challenges lose the chance to express themselves through art, the impact is felt across the whole community. Art projects like this help to create a safe space to establish trust, confidence and awareness that learning a new skill is possible. Without this creative showcase for our organisation and to share with other an ability to explore emotions can remain bottled up, isolation deepens, and opportunities for skill-building and empowerment are lost. Society also misses the rich perspectives and voices that challenge stigma and inspire empathy. Our cultural landscape becomes poorer, our sense of community weaker, and the cost to health and social care services greater.
OOSOOM prevents that loss, turning lived experiences into powerful works that connect, heal, and enrich us all. Without funding, this unique opportunity for healing, skill-building, and self-expression will vanish, and the people it supports risk becoming invisible again.
In a city celebrated worldwide for its festivals, galleries, and creative spirit, how can we fail to fund an art project that gives people living with mental health challenges a voice? Edinburgh’s cultural identity is built on expression, diversity, and the sharing of human stories. To withdraw support from OOSOOM would be to silence voices that embody these very values.

Testimonial in support of CAPS from Edinburgh Headway Group

Edinburgh Headway Group is a charity supporting adults who have acquired a brain injury later in life. The work that ‘Out of Sight Out of Mind’ does to highlight the importance of mental health has been invaluable to our community. Many of our members face significant mental health challenges, and having safe, open spaces to talk about these issues and see or hear from others with shared experiences is profoundly beneficial. By raising awareness and increasing visibility around mental wellbeing, the project helps ensure our members feel less isolated and more understood. Losing funding for such a vital organisation would be a devastating blow to many who could be suffering alone, not to mention our members. We’re very grateful to the work done by ‘Out of Sight Out of Mind’ and would hate to see it disappear.

Testimonials from CAPS staff

CAPS Collective Advocacy staff statement

How are you involved with CAPS?

I was a member of several of CAPS’ collective advocacy groups for three years before becoming the collective advocacy worker for the Oor Mad History Project in 2023.

What benefits do you get from collective advocacy?

Quite frankly, collective advocacy is the only service that has consistently come through for me as someone who uses mental health services. Over time my trust was earnt and I was able to feel at ease with the workers and people involved in the projects. My positive experience gave me the motivation to apply for the worker role as I truly felt a sense of solidarity, connection and empowerment by being involved in the projects. Now I have the privilege of amplifying the voices of marginalised people and helping them campaign for tangible and meaningful change in mental health policy and services. We’ve achieved some wonderful things and grown together over time. It still surprises me to this day that many people do not know what collective advocacy is, because it’s a truly powerful practice that puts people first.

What will be the impact on you if CAPS’ groups end?

The collective advocacy groups at CAPS provide vital work which recognise intersectionality and the importance of upholding marginalised voices. I would personally be devastated if this organisation’s groups, which have done such a remarkable amount for me, both personally and professionally, ended. CAPS’ work is built on thousands of voices striving for recognition, equality and fair treatment in the world and it would be an incredible loss for those voices, that work, that community, to end. The knowledge amassed from these groups details how we might improve society through advocacy and activism and it will be valuable for years to come.

CAPS Collective Advocacy staff statement

How are you involved with CAPS?
I am the collective advocacy worker for the LGBTQIA+ and Experiences of Eating disorders groups.

What benefits do you get from collective advocacy?
Collective advocacy is more than just a space to speak- it’s often the only space where people feel truly heard. Working at CAPS, I’ve seen how transformative it is when individuals share their experiences to lead change. Our groups provide a safe space where people can speak openly without fear of judgement, where their voices are not only valued, but central. For many, this is the first time they have been treated as experts in their own lives.

What will be the impact on you if CAPS’ groups end?
As a CA worker, I’ve developed strong relationships with group members and have seen firsthand the importance of having a space where people feel listened to and understood. I have heard from group members the impact that these cuts will have and I feel incredibly helpless knowing that something so vital could be taken away. I see the positive changes these groups have made delivering workshops, doing research, writing books, making resources, creating art- and I am sad that their voices and work are not being prioritised. Collective advocacy is not just a ‘nice to have’- it’s a vital part of building a fairer, more inclusive mental health system. Ending these groups silences voices that need to be heard.

CAPS Collective Advocacy staff statement

I have been working for CAPS for around four years. People with mental health issues have been organising and agitating for better treatment since the 1980’s and before.

On an organisational level CAPS holds a significant amount of all this knowledge and experience and has been built on the efforts of people with mental health issues over the decades.

CAPS is a lifeline to people with experience of mental health issues, often people who don’t find what they need from other services find a home in CAPS. It’s really quite radical for people with mental health issues to be able to pass on the knowledge and experiences of various conditions to health professionals and others to improve services and protect human rights.

I don’t want to see all this work and effort, and the benefits that people derive from CAPS go to waste, it’s a truly unique service. From a personal perspective as someone with experience of severe mental illness and hospitalisation I have found in CAPS a wonderfully purposeful and inspiring organisation. I feel I’m doing good work and I don’t want that to end.

CAPS Collective Advocacy staff statement

How are you involved with CAPS?
I am the Arts as Advocacy Manager at CAPS.
I came across the first Out of Sight Out of Mind exhibition in 2013 and I was blown away by its strength, beauty and rawness. I could see that its power was driven by the people involved and not by an institution. At that time, I was struggling with my own mental health and work situation. I was welcomed into the Planning Group in 2014, and since 2017 I have been employed as the worker for what is now ‘Arts as Advocacy’.
Having been in involved in several ways, I can attest that Out of Sight Out of Mind’s exhibition’s power comes from providing arts for people with mental health issues, underpinned by CAPS Independent Advocacy principles and approach.

What benefits do you get from collective advocacy?
I have had my life changed and improved by this work. I have been included, seen, heard and employed by it. I have had a unique opportunity to develop a method of using arts as a form of advocacy in Edinburgh, and to contribute to the lives of people who struggle with their mental health and who face marginalisation for many reasons. I gain a huge sense of personal satisfaction and achievement from this work.
I have seen over a thousand people speak and be heard through their art via Art as Advocacy and Out of Sight Out of Mind.
I have experienced first-hand what can be achieved by a small group of people with mental health issues when they are given choice and control, and how that can impact thousands of others.
I hear how people are empowered personally, process difficult issues, have improved relationships, and how attitudes towards oneself change. I hear how workers, relatives, colleagues and the general public respond, and how their attitudes and understandings shift. And, how people make change, work, study or undertake their own projects as a result.
I benefit from being part of what is now a large and diverse community of people who have mental health issues, and who face marginalisation for many other additional reasons. From this community I continue to learn and grow as a human being, and as an advocacy worker.

What will be the impact on you if CAPS’ groups end?
Arts as Advocacy is a unique project and I have dedicated 13 years of my creative and working life to it.
I will be affected knowing that the Planning Group and hundreds of people will lose a project they reply on, invest in and believe in.
I will personally lose my ability and power to use my skills and knowledge, built over 25 years in total, to do meaningful work that contributes to the lives of vulnerable people.
These are challenging times for the third sector which see decision makers devalue the work of staff and volunteers who try to meet the needs they know exist, and which see decision makers promote the narrative that economics define societal success. Therefore, it will be extremely difficult for many workers in Edinburgh affected by EHSCP cuts to find new employment in the third sector.

CAPS Collective Advocacy staff statement

How are you involved with CAPS?

I am a collective advocacy worker, I started my role two years ago.

What benefits do you get from collective advocacy?

As someone diagnosed with autism spectrum disorder at a late age, a couple years before I started at CAPS, this job has been revelatory to me. Many parts of my autistic self that would be hinderances in other roles are strengths in this one. Here my disinterest in platitudes means I can focus conversations on what really matters – voices of lived experience. In other roles this would make me seem abrupt, or like I don’t fit in with how other people speak. In so many other parts of my life, I have got into difficulty by not understanding the social codes about speaking to someone differently just because they are ‘important’, by telling them uncomfortable truths and things they don’t want to hear. As an advocacy worker, doing this as my advocacy participants want me to is literally my job. And I can be good at it. This has made an enormous difference to my sense of self-worth.

Due to CAPS’ unwavering commitment to principles of independent advocacy, I know what drives my work and can align myself with this comfortably. I have always struggled with social hierarchies and power dynamics, and this has often had an adverse effect on my wellbeing. I have so often been made to feel ‘less than’ because of my autism and mental health struggles. but at CAPS it is an explicit part of my job to challenge this. I can be confident that I am working on the merit of uplifting and strengthening the voices of lived experience, ensuring they are involved in decisions that affect them, not to impress or appease people who could otherwise make me feel powerless.

The attitude of acceptance that so many of our group members find healing extends to staff too. In other places, I have felt deep shame and inadequacy when talking about challenges I have or needing to adjust how I work to accommodate my autism, but at CAPS it is part of the fabric of how we work, both for participants and for staff. When I have acted ‘abnormally’ at work, instead of suspicion and scorn, I have been offered trust and understanding. If I have misunderstood social cues, been triggered or distressed at work due to the trauma of growing up undiagnosed autistic or had to just had to work ‘differently’, I have been treated with respect and dignity. This is not just because it is a ‘nice’ workplace, it’s part of the very structure of how independent advocacy and lived experience led work operates. I have been given the freedom to do this job in a way that works for me, which in turn means I am able to offer much better advocacy to the people I work with. I struggle to see in what other workplace this would be possible to the same extent, especially as so many other jobs are at risk within advocacy and across the sector.

What will be the impact on you if CAPS’ groups end?

I feel a sense of grief at the idea of this space being taken away from the people I work with and losing this job. There is no other service like this for people. It is truly, radically different. In this job I have found a role where I can truly be myself, and in doing so can play to my strengths and help others.

I am also an unpaid carer for my partner who has a neurological condition. The understanding and flexibility offered within my role at CAPS has meant I have been able to be honest about my caring responsibilities and its impact on my life and work. Without this support at work, I would not have been able to cope when things were at their most challenging. As an unpaid carer, it can be immensely difficult to balance work and caring, often you feel guilty for needing to adjust this balance. I have always felt supported and empowered to find this balance at CAPS. The impact of losing the trusting workplace relationships that have supported me would have a very negative impact on my mental health and my capacity as a carer.

My partner has been unable to work for over two years due to his condition, and difficulties with the benefits system have meant we have at times been on a very low income and at a point of financial distress. The skills I have developed as an advocacy worker have meant I was better equipped to resolve our issues with the benefits system so that we could afford to live. I fear that the loss of income if I were to be made redundant could be extremely damaging to both of our wellbeing. Reductions to other services that support myself and my partner would exacerbate these impacts.

Impact on advocacy and people with lived experience:

I have been in so many meetings with service providers, commissioners, HSCP staff – people making decisions which will shape the lives of people I work with – where no one has brought any lived experience perspective until I spoke up. I am in a unique position as an independent advocacy worker whose role is purely to represent people with lived experience. Through no fault of their own, staff have been so preoccupied with workplace structures, funding, statistics, strategy, that no one has stopped to include the voices of people who will be most impacted by decisions. These meetings and processes are separated from the very people they impact the most. If my role, and all collective advocacy in Edinburgh ceases, there will be no-one in those meetings to make the direct connection between decisions and the people they affect. That invaluable knowledge will be lost. I cannot trust that in the absence of a collective advocacy worker these professionals will include people with lived experience, because even when I am there, it is often an uphill struggle. The impact of losing collective advocacy in Edinburgh would be the exclusion of lived experience voices from decisions and conversations that directly affect them. I cannot see how this is acceptable; it is a huge regression of how we value the voices of people with mental health issues.

The power that comes from uniting people with lived experience to demand better for themselves and their communities cannot be understated.

My work at CAPS has been routed in places and people, establishing trusting relationships over time that allow people the space to speak up. Some of the people I work with take months to even realise what is it they want to say and have the confidence to say it, because no one has asked them before and truly listened to them. Some take even longer to develop the self-worth needed to believe their thoughts are worth hearing. These are people who without an advocacy worker to fight their corner, could become dismissed and disillusioned. Their trust in services would weaken, because ‘why should I trust a service that doesn’t even care what I think?’. Their health would suffer as a result. Running a consultation form or a focus group simply isn’t sufficient, it excludes so many voices that independent advocacy is designed to include.

Testimonial in support of CAPS Collective Advocacy

How are you aware of CAPS?

I am aware of CAPS through my cousin who has used CAPS services himself to support his mental health over a period of several years. As a well educated individual he has also been an active contributor to the activities of the group in promoting debate and challenge in the treatment and management of people with mental heath concerns and conditions.

What benefits does Collective Advocacy bring (to you/others/services)?

The advocacy provides much needed support for those experiencing mental health issues such as my cousin and others I have met. For those who use the group their mental health issues have impacted their quality of life and placed constraints on their activities and contributions within the wider puplic communities. The advocacy supports them in several ways such as promoting greater awareness of mental heath in society in general and providing a strong voice for those directly affected so their lived experiences can be heard and discussed in a context intended to help move the debate forward and seek improvements in diagnosis and management to the advantage of all in society. It helps to challenge outdated attitudes, conscious and unconscious biases seeking to foster better and more informed interactions between health professionals, psychologicsts, psychiatrists and mental health clients.

What will be the impact if CAPS’ groups end?

I believe this will have a severe impact on members who access the service directly impacting their wellbeing and potentially undoing improvements they may have made previously as a result of their involvement with CAPS. The impact of this will I feel be felt elsewhere and will simply result in more pressure at some other point in the system potentially involving, medical and legal professionals, social services, hospital staff, law inforcement and others. Surely by removing support that benefits individuals with mental health difficulties makes for a poorer less caring society and is a backward step.
Anyone can experience mental health issues at some point in their life without warning. When that happens we should respect individuals human rights and choices for their own wellbeing.
More mental health support is needed not less and everyone should ask the question “What if it’s me who needs support? ” because it just could be!
The advocacy provides a real service that is perhaps poorly understood and under-appreciated and merits further funding and support to continue to provide and expand it’s services.

Find out about creating your own testimonial and other ways you can help here.