In conversations about mental health care, the voices of healthcare professionals and policy-makers tend to be the loudest. Or, more accurately, these are the people given the microphones.
This is being turned on its head through a number of initiatives that centre the voices of experience.
Problems surrounding the "service user" label
"The emergence of service users as a creative force in the mental health system has been a remarkable feature of the last 25 years", says Peter Campbell, a Freelance Trainer and Mental Health System Survivor in the British Psychological Society's 'Good Practice Guidelines'. And he's right.
But the "service user" label is not without problems.
Receiving feedback from the very people who use its services, the NHS now sees "service users" as integral to its functioning. Whilst it's important that services are shaped by their users, the label of a service user as the authoritative non-clinician fails to recognise a fundamental problem with many services: they are inaccessible.
The voices of people unable to access mental health services are just as important as those who can.
The inaccessibility of services is as much a problem as the issues encountered once "in" said services.
The emphasis on the "service user" label denies a voice to many people, as there are a multitude of reasons why someone does not enter into services: from overwhelming anxiety about a phone call to book a GP appointment, to fear of not having their symptoms validated. It can take months, years, or even decades for someone to feel able to disclose and even articulate their suffering to a medical professional.
Such people may have great suggestions as to how services could make this initial step easier yet, because they are not in services, their voices are not heard. When under the care of a service, one can go to any professional within that service with their feedback, complaints, and recommendations. If not in a service, it's difficult to know where or who to turn to.
If the inability to get past particular obstacles denies someone the label of a "service user", then how are these obstacles going to be eliminated?
All too often, people struggling with their mental health find it an arduous process to find appropriate support - and that's not for lack of trying. Not knowing where to seek help in the first place is an issue faced by many, as is being rejected from a service without being redirected to another. A diagnosis often functions to direct someone to an appropriate service for treatment, yet one needs to be in a service to be diagnosed - it's a Catch-22.
That being said, it's clear that becoming a "service user" rather than a service seeker can be a feat in itself.
Because of this, mental health projects are shifting their focus to people with lived experience of mental health issues rather than just the subcategory who are under the care of a service. The voices of people unable to access mental health services are just as important as those who can. No longer is it solely the acceptance into a mental health services that grants a person permission to consult on policy and practice; simply experiencing mental health struggles is enough.
Listening to the Voice of Experience, or, LiVE Mind is a project in Brighton and Hove between Mind charity and the local Clinical Commissioning Group (CCG). Commissioned by the CCG, a group of local people are invited to consult on topics surrounding mental health support quarterly. For three of the consultations, the CCG chooses a broad topic and the group hones in on a subcategory of their choosing. For the final quarter, the group is free to choose the area of focus.
The group is comprised of people with lived experience of mental health problems. Carers are also invited to join, as well as people who have an interest in developing the local services. Through the means of surveys, interviews, polls, focus groups, etc. the voices, thoughts, opinions, and experiences of local people are heard. The quantitative and qualitative data gathered are submitted to the CCG in a report.
More often than not, a lack of funding is a barrier to receiving appropriate mental health support. In a world in which people dealing with mental health problems often feel powerless, having the CCG commission local people to consult on policy and practice subverts the traditional power dynamic.
The project's value lies not just in its impact upon services, but also the positive effect it has on the lives of its participants. It creates an environment in which people are both understood and listened to, giving them a newfound confidence to become advocates for themselves and others.
Some of the outcomes of the project to improve Brighton and Hove mental health services include £261,000 of funding for 61 new projects supporting wellbeing, a new mental health liaison service at the children's hospital, a mental health rapid response service that runs 24/7, inclusion of screening for depression in health checks for 40 to 75 year old people, health trainers being given extra training to support their own emotional needs, and community navigators in GP surgeries to help people access community activities and support
For this consultation, LiVE Mind is examining people’s experiences of falling between mental health services and how this has affected them. They are tackling the problems that prevent someone from becoming a "service user" head on.
Maudsley Debates, in collaboration with Debating Mental Health, saw four people take the stage at King's College London to debate the motion “This House Believes: That people below the age of 18 should never be detained under the Mental Health Act.”
Whilst these debates take place three times a year, this is the first year in which the panel has been comprised solely of people with mental health difficulties. It was also the first debate about young people led by young people. After a free-to-attend taster and selection day, four people - aged 17-22 - were chosen, based upon their debate potential rather than debate experience. To make the debate accessible, the only requirement to attend the taster and selection day was having first-hand experience of mental health issues.
Maudsley Debates pushed the idea of centering the voices of the service user even further; the only "criteria", or, non-criteria, to enter into the selection process was having self-defined first-hand experience of mental health difficulties.
"We deliberately stay away from the phrase "service user" because we recognise that not all young people we work with will have been able to access a service", says Laura Wallis, Director of Debating Mental Health. "Likewise, this is why we prefer young people to self-define, because we think it [is] arbitrary to require a diagnosis for us to work with a young person".
The future of reforming mental health care
This rejection of the phrase "service user" is a radical shift away from the clinician as the power that determines whether someone is truly suffering. Not only are Maudsley Debates and LiVE Mind giving people a platform; they are also validating their experience.
By giving a voice to service seekers or people with lived experience, the structural barriers within the NHS are acknowledged.
Let's hope that such initiatives are the future of shaping mental health care.
[Photo: Shifted Productions]