Ultimate Service-User Involvement

Firstly, I need to make it clear that in my day-to-day life my history as a service-user (SU) of mental health services actually pays a very small part in my identity. Some of my friends know my background; few of them know it in any great detail, most just see me as I present. I think this is important. I am not a label or diagnosis. I am many things: daughter, friend, student, volunteer, dancer and pet-owner. But, it would be naive of me to think I am not shaped by my past. I also think it might be sad if I did not acknowledge my experiences and credit them for helping me be the person I am today.

Which is why I created this blog. It is my opportunity to reflect on what it is like to be training to be a professional who has experience of being the one in treatment. Another disclaimer: I’m very aware that, almost without exception, every professional is a service-user to some extent. Most people will at least have a GP and Dentist, people with health issues or disabilities may access a range of services and have more extensive experience than I do. However, this is my space to consider my experience, nothing more, nothing less.

Service-user involvement is pretty common-place is most services today and I think it’s a very good thing that its inclusion appears to be growing. I’ve used services that values service-users as experts in their own experience and I’ve also used services which prefer that you remain safely in your ‘patient role’. I know which one I’d prefer to use. I also know which one was more effective for my own recovery. If I wasn’t in the middle of essay deadlines I’d do some research into the evidence-base for service-user involved services and improved outcomes; a task for another day I hope.

I consider it an absolute privilege to have experienced treatment in a therapeutic community (TC). Although, when I entered it I did so somewhat reluctantly, mostly due to hopelessness that my ‘disordered personality’ was treatable. I was very resistant to help, I was also resistant to finding anything in common with the other community members. I seem to remember describing the TC as ‘a cross between a cult and an episode of Jeremy Kyle’. (The cult reference was due to the somewhat unfamiliar terms from the therapy programme adopted, and I’ve never watched an episode of Jeremy Kyle in my life, so was just putting some angry, unfounded judgements onto the other TC members to mask my own fear.)

To me, a TC involves some of the highest level of service-user involvement, from attending our own CPA reviews (Care Programme Approach) and business meetings, to the whole community interviewing potential new staff members (and often being the ones to decide who got the post). I was fortunate enough to co-facilitate training sessions with clients and staff on topics such as suicide prevention, trauma therapy, borderline personality disorder and group therapy for professionals including nurses, OTs, counsellors and clinical psychology students. Being part of these teaching teams was an incredible experience, on every occasion we received brilliant feedback about the contribution of the service-users to the training. On a personal level the experience of solely delivering half of the training, talking about what I’d found helpful and leading discussions or running exercises was unbelievably empowering. It helped me realise that several years of hospital admissions and a lifetime of distress did not mean that I was useless as a person. At the time I felt that my life had been on hold, but my perspective changed and I realised that while I would never want to re-live my life it had given me a valuable insight that could help others (and on that note, before I get into the cringe-worthy territory of ‘I want to give back to the world to make my life worthwhile’ I’ll move on. Disclaimer number three: I hope none of this comes across as sanctimonious drivel, not my intention at all).

As an OT student, within the first month of starting the degree, we had service-users and carers come to speak to us about their experience of OT, hospital admissions, home-visits and caring for someone with an illness. However, I still feel very conscious of a ‘them and us’ division between professionals and service-users. As OTs we strive to consider people in a very person-centred way, but often it feels that service-users are still considered as ‘different’, especially in mental-health. I’ve lost count of the number of times I’ve heard incredulous students talk about patients in the vain of ‘they were actually really amazing, you know, not scary at all’. Now, don’t get me wrong, I’m glad that students are realising that mental health service users are just ordinary people, with an illness, but I do feel that there’s still a lot of stigma and assumptions to be challenged. Most of them don’t know that their peer and friend was at one point the nightmare patient: endless hospital admissions, sectioned for a year, on one-to-one observations for longer than that (and still managing to seriously self-harm) and, most ironically, the person banned from OT as they used it as an opportunity for desperate attempts at self-harm. Would it change their perceptions of service-users if they knew? Or would they see me as a damaged, vulnerable person? (I’m neither, in fact, I’m possibly more resilient than most as a result of it all). When I started my degree I chose to stop providing training as an expert service-user as I felt it blurred the boundary between me as a client and me as a professional student. I also will be keeping this blog anonymous for two reasons: it could be unhelpful for some clients to have personal information about me and so I can choose the level of disclosure I adopt in the ‘real world’.

So, should I be removing my ‘expertise’ from the contributions I make in my studies? I’m sure that I do contribute in subtle ways; as my perspectives are influenced by the treatments I’ve experienced and clients I’ve known, but could I do more to challenge some of the prejudices that still exist? I suspect, like most things, there is a balance to be achieved. Primarily I am a student, with an awful lot to learn and I am also a service-user with insight that may help me, and others, to be marginally better professionals. When the time is right I may wish to utilise this.


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