Why Are We Waiting? Bringing Lived Experience to the Heart of Mental Health Services
What happens when you’re left waiting for mental health support? This year, CAPS’ People’s Conference will bring people with lived experience together to explore the impact of waiting, share ideas and identify ways services and communities can do better.
The People’s Conference is one of the highlights of the CAPS year. It’s important because it’s a safe space exclusively for people with experience of mental health issues. The first People’s Conference took place in 2014 and it’s been bringing people with lived experience together every year since then. People with mental health issues also plan and organise the day. Together we explore topics that they choose each year.
People in CAPS’ Collective Advocacy groups plan the conference. Collective Advocacy is a way for people with experience of mental health issues to share their experiences, find community and make changes to the way they, and others like them, are treated.
This could include producing resources to raise awareness of mental health, running workshops for health professionals to make sure they understand what it’s like to live with a mental health issue, making zines or getting involved in creative activities, and lots more. The People’s Conference brings together these threads in relation to the theme that the group have picked.
It’s a whole day of discussion and activity that identifies and considers some of the most important concerns that people with mental health issues have. Anyone in Edinburgh or the Lothians who has experience of a mental health issue can attend the conference.
It’s a friendly informal atmosphere where people with similar experiences can come together in solidarity. It’s a day of Independent Advocacy and a continuation of the long running activism that people with mental health issues have been involved in over many years.
This year we’ll be discussing long waiting lists; how they impact people and what could be done by services and in our communities to improve things while people wait. Attendees will discuss questions such as:
- Have waiting times for mental health support in Edinburgh or the Lothians impacted you?
- Is your mental health affected by uncertainty whilst waiting for support?
- How can we work together to make waiting more survivable?
Attendees will have the chance to have discussion and engage in activities with others about ideas for improvement and share these directly with service planners. They’ll also have the chance to take ideas for change forward with the support of CAPS Independent Advocacy.
Our focus on waiting as a theme was developed directly from the work of our collective advocacy groups. The multiple forms of waiting a person with mental health issues may face repeatedly came up in group discussions. Attendees shared their lived experiences of long waiting lists for diagnostic assessments and treatments. People in CAPS collective advocacy groups also highlighted the harmful impacts of waiting to access oversubscribed support services. Or waiting to hear about funding decisions driving service closures. Based on these shared experiences our conference planning group selected waiting as the topic to collectively explore at the 2026 People’s Conference.
The People’s Conference is a way for people with mental health issues from across the Lothians to have their say. It helps form bonds that enable people to stand up for their rights and demand improvements to services. We hope that the conference helps to create and develop the community around collective advocacy. One of the most important aspects is that every year CAPS writes a report from the conference This communicates the concerns of people with mental health issues. The report is shared with professionals and elected representatives that have responsibility for mental health services, funding and development. In this way the conference amplifies people’s voices. It sends a clear message that people with mental health issues can and should be involved in the planning of the services that affect many aspects of the lives. We will also be presenting the work of the day at our CAPS Independent Advocacy conference/AGM in November.
For this year’s conference we plan to amplify people’s voices by focusing our time on space for group discussions. Attendees will discuss the topics related to waiting as identified by our collective advocacy and event planning groups. An example of one of these topics is communication; the failures in communication from the NHS, such as unsent letters or date and time mistakes, that all lead to further waiting, and the lack of clear and understandable communication. This leaves people unsure and uninformed of expected pathways and wait times. These topic focused discussions will be facilitated by CAPS staff, with creative materials on hand for those that wish to express themselves in ways other than verbal conversation. Attendees will have the opportunity to contribute to the discussions that most interest them. On the day, we will use these conversations to produce specific asks of service provision planners to seek to bring meaningful change. The day will include a delicious lunch from a local social enterprise caterer and plenty teas, coffees, and biscuits to keep us all energised!
There is no cost for the day, but booking is essential!
(Or contact Christie at christie@capsadvocacy.org)