Open letter regarding proposed funding cuts

To the Edinburgh Integration Joint Board,

We are a Collective Advocacy Response Group, formed by people with lived experience of mental health issues, who are involved with different Collective Advocacy projects at CAPS Independent Advocacy. We have come together in response to the proposed cuts to these projects by the Edinburgh Health and Social Care Partnership (EHSCP).

CAPS Independent Advocacy has been informed by the EHSCP that they intend to cancel the funding for ten of the projects we participate in. This would mean the loss of 82% of Collective Advocacy at CAPS. The intended cuts to Collective Advocacy projects at other organisations in Edinburgh would mean that there would be no provision of Collective Advocacy at all in Edinburgh. We will outline why we believe this to be a poor decision, that is legally questionable.

This Response Group is an example of Collective Advocacy, as we are speaking together from our perspective of lived experience to challenge this proposal, which was made with insufficient consultation and without our involvement. We hope to share our views with the EIJB and ask them to reconsider these proposed cuts to Collective Advocacy, the impact of which would be devastating.

Our right to Collective Advocacy

Collective Advocacy is a way for us to ensure that our rights are recognised, respected, and secured. By working collectively, we have a stronger voice to advocate for our rights. Independent Advocacy recognises the many barriers that people with mental health issues face in getting their voice heard, and works to overcome these.

As people with lived experience of mental health issues (‘with a mental disorder’) we have a right to access Independent Advocacy, as outlined in Part 2 subsection 259 of the Mental Health Care and Treatment (Scotland) Act 2003. The law also states that it is the ‘duty’ of local authority and Health Board(s) to ‘secure the availability’ and ‘take appropriate steps to ensure that those persons have the opportunity of making use of those services.’

Official guidance on this Act by the Mental Welfare Commission tells us that our right to Independent Advocacy includes Collective Advocacy. This is outlined in their 2017 ‘Good Practice Guide: Working with independent advocates’. This guidance states that ‘The Act gives people a right of access to both collective and individual advocacy’.

This tells us that as people with mental health issues, the EIJB has a duty to provide us with access to Collective Advocacy services. The proposed cuts would eradicate this access, therefore the EIJB would not be fulfilling their statutory duty, as set out in the Mental Health Care and Treatment (Scotland) Act 2003.

Other funders have refused to fund CAPS’ Collective Advocacy projects, precisely because they are deemed to be a statutory service.

We believe that if the EIJB were to remove all access to Collective Advocacy, they would be in breach of their statutory duty, which we could raise as a legal issue in court.

This would be a denial of our rights!

What the impact of these cuts would be on us

All of CAPS Collective Advocacy projects work with people who have protected characteristics, including us. We believe the impact of the proposed cuts on people with mental health issues would be devastating.

If the plans to cut these projects go ahead, people will lose a unique and independent method of having their voices heard on important issues and making positive changes for others.

The impact and importance of the Collective Advocacy work facilitated by CAPS cannot be overstated. Our work challenges power dynamics and changes the narrative for people with lived experience of mental health issues – because it is we who write our own narratives here.

This letter is written collectively, but here are some quotes from our individual testimonials:

“If CAPS groups close, I would not be able to function properly.”

“It is a vital support network for wellbeing, reducing isolation and builds connection, reduces stigma and reduces inequality.”

“I don’t know what I am meant to do without Collective Advocacy. It is genuinely a lifeline for me.”

“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.”

At time of writing, twenty-five of our group members have submitted testimonials. These illustrate the impact that these cuts to Collective Advocacy would have on them. The networks of organisations and agencies that we have worked with throughout the last sixteen years have told us what they would lose as well. We urge you to read through these testimonials.

It is also important to note that the harmful impact of cutting Collective Advocacy services will be compounded by cuts to other services we use. Our support will be more limited, our ability to advocate for the improvement of these services will be removed. We are acutely aware that for many of us, our wellbeing and quality of life is likely to suffer as a result.

In addition to the impact on people directly involved in Collective Advocacy, these cuts would mean a loss of knowledge and lived experience involvement across the Health and Social Care sector and beyond. Our Collective Advocacy groups have facilitated workshops and produced resources and learning opportunities that have shaped services for the better. This includes but is not limited to:

• Lived experience workshops created and run by many CAPS’ groups. These are a unique opportunity for staff and the public to find out more about living with mental health issues, from the people who have this first-hand experience.
• The ‘Out Of Sight Out Of Mind’ exhibition run by our Arts as Advocacy project. This is an interactive and accessible way for people to engage in discussions about mental health.
• ‘Much More Than a Label: A Resource About Personality Disorder by People with Lived Experience’, a toolkit about the diagnosis of personality disorders, one of the only resources available to people diagnosed with personality disorder.

You can see the breadth of our groups’ work here.

Mental health professionals also recognise how essential our work is. For example, Dr Sean Harper, Director of Psychology, NHS Grampian worked with our Experiences of Psychosis group for many years. In one of the many testimonials from professionals for CAPS, he told us:

“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. 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.”

The same sentiment is keenly felt by group members, who have said:

[the cuts would mean a] “loss of the opportunity to improve mental health services and social understanding of important issues.”

“I feel we make such a difference to others’ lives by sharing our experiences.”

Without this independent space for lived experience input, these services and staff would not have been able to learn and develop to the same extent. Cutting Collective Advocacy would be a profound loss of knowledge, insight and opportunity. The Health and Social Care sector is ever-changing and developing, and our voices should be a part of that process. At a time when services need to meet people’s needs as effectively as possible, this loss would be a great disadvantage and extremely short sighted.

Our place in your strategy

CAPS Collective Advocacy work enriches and contributes to the EIJB. It creates an opening for people like us to independently have our say in systems that are often inaccessible to us. Without CAPS Collective Advocacy, so much of the work the EIJB commissions would not have the same enriching input of lived experience perspectives. In the EIJB’s draft Strategy, on the topic of ‘health inequalities’, you state that you will;

“identify people and communities most at risk of ill health and design our services in a way that is accessible and acceptable to them”

and

“involve people from groups most likely to have poor outcomes in the design of the services that affect them” which will “ensure the services we provide meet the needs of the people we serve”.

On strategy to ‘Prevent harms resulting from severe mental illness’ you state it is a Primary Aim;

“To support people with mental illness to live well in the community, measured by a reduction in the number of people who have to stay in hospital unnecessarily”,

To do this, you say you will

“ensure everybody has access to independent advocacy services to support them to make their wishes known when they are unwell”

and will “regularly engage on the best way to support people with mental illness” to “Help us design better services”.

We believe that the disinvestment of such a huge proportion of funding to advocacy services would be inconsistent with this strategy. To quote one of our group members:

“This would be a completely backwards step in the work of the EIJB”.

Projects like Collective Advocacy run by CAPS are the best way to meet these aims. They are independently run, so people involved are more likely to give you an unbiased and unrestricted perspective on services. People reliant on the EHSCP for support might feel unable to speak up if they disagree with how things are run without the security of CAPS independence.

Our groups have the specific needs of different marginalised groups built into their structure, ensuring people feel comfortable and supported to advocate for their views. Independent Collective Advocacy is a means to facilitate these actions, as it is a way for people to engage in the EIJB’s work, which is often inaccessible and intimidating to people who are not experienced in navigating similar processes. This simply won’t work in the same way without CAPS Collective Advocacy, and the EIJB will be less able to meet its aims.

Collective Advocacy plays a large role in supporting people with mental health issues to live well in the community. People have told us that Collective Advocacy improves their self-esteem, gives them a sense of belonging and negates the sense of shame and stigma that often results from navigating life in the community as a person with mental health issues.

To conclude

The EIJB cannot, and should not, in good faith deal such a devastating blow to a service that upholds people’s agency, dignity, and human rights. This actively contradicts its utmost role to:

“Make Edinburgh a caring, healthier and safer place for everybody to live.”

We urge members of the EIJB to reconsider the importance of Collective Advocacy and reject this proposed disinvestment to CAPS Independent Advocacy.

Sincerely,

Collective Advocacy Response Group

Facilitated by CAPS Independent Advocacy

Individual signatures:

Rae R., Response Group, Edinburgh Community Voices

Liz R., Response Group, Edinburgh Community Voices

S. McIntyre, Response Group, Lothian Voices

Euan R., Response Group, Much More Than a Label

Lauren S., Response Group, Arts as Advocacy, Oor Mad History, Minority Ethnic, LGBTQ+ Much More Than a Label, Experiences of Trauma

Colin S., Response Group

Charlotte M., Response Group, Experiences of Psychosis, Lothian Voices, Edinburgh Community Voices.

J. Moody, Response Group, Much More Than A Label, Out of Sight Out of Mind exhibition

Jean Y., Response Group, Lothian Voices, Out of Sight Out of Mind exhibition

F. Macdonald, Response Group, Experiences of Trauma, Art as Advocacy, Oor Mad History

Andrew L., Response Group, Experiences of Trauma, Lothian Voices

Marianne M., Out of Sight Out of Mind exhibition

Campbell S., East Lothian Collective Advocacy