Service User Led Training

This is part of a talk I gave on Service User Led Training at a NIMHE 'Bring & Share Fayre'. I was doing it as part of a group called PLUS+ (Positive+Learning+Understanding+Support) - a group of service users who use their experiences of mental distress to inform and educate 'proffesionals' and assorted others about how it feels to be us. The group has been running for a few years, and this talk was intended to take some of the main issues i've encountered and explore them a little.

Empowerment. PLUS+, to me, is about empowerment and our journey towards it. This journey isn’t always smooth sailing as the waters are relatively uncharted, at least on a personal level. This is the case for the users, aswell as any support staff involved in the project. As a user of the mental health service I’m much more used to being a passive recipient of care, of having decisions made for me, and feeling deficient, crazy and otherwise out of control. It comes down to me being a patient, and those treating me being the ‘experts’ (I was as guilty of holding that view as any of the workers I met). Add to the mix the fact that I’m not in my ‘right mind’ and really am crazy, then you can understand why I’m often not taken as the best witness to my own mental health state. Lack of insight, anyone?

Now I’m in a position where my experiences of mental health are not seen as a deficit, or a problem – they are actually the reason people are sitting down and listening to me. It’s a topsy turvy world, and everything I previously accepted is being turned on it’s head. People are taking me seriously, hell – you are taking me seriously. That’s gonna take a bit of time to get used to, for all of us.

Assumptions. We’re full of them, all of us. Without making assumptions and quick judgements we wouldn’t be able to function. If we had to puzzle everything out, and take every scrap of information on it’s own merit life would be one long migraine. Many of the ones we hold, though, need a bit of an upgrade. Even the most socially aware and politically correct of us need a reality check every now and then.

Some of the most common ones centre around our pre-conceived idea of each other. Services users are all on benefits, they don’t work. Nurses don’t understand and don’t want to understand. She’s not a ‘real’ schizophrenic. Doctors aren’t going to listen to me, so why should I even bother? She’s not representative, she’s the exception rather than the rule. She’s too ill to give training, it’ll just upset her too much. Service users are fragile and need to be protected. I need to organise, to support and to take the reigns – otherwise nothing will get done, and everything will fall apart.

While some of the time these beliefs are true, there are many times when they’re not. We need to treat each other with respect and be prepared to challenge our ideas and the status quo. Try asking what people feel comfortable with taking on, what they need from you and enable them to find out for themselves what they are capable of. We need to be able to make our own decisions and take our own risks. It’s a basic right, and one that many of us haven’t had much chance to exercise in our dealings with the mental health system. It involves a new way of working, and one that doesn’t come with an instruction manual.

Communication. This, I believe, is THE most important part. To work effectively it has to be two way, honest and respectful. I’ll forgive a lot of oversights, assumptions and mix ups if I have a good relationship with the workers involved. I need to see them as humans, as individuals with strengths and weaknesses and I need to feel that they see me too. No one’s perfect – not even us service users. So the ability to talk to each other openly is what saves us from getting disillusioned and dropping out of the project all together.

It takes time to build up this level of trust. I’ve been involved with PLUS+ for about a year, and it’s only in the last few months that I’ve really felt comfortable with it. Initially I found it difficult to speak my mind in the meetings, and I can still feel hesitant because it’s not something I’m used to. What has made a difference, I think, is seeing the workers and other group members out of the boxes they are in – maybe chatting after the meetings, getting a lift in with one of the workers, going to the pub for someone’s birthday, or just talking about things other than mental health. It is these interactions which have broken down the lines that I’d become used to – and enabled me to take myself out of the patient role and into the one of service user trainer.

In conclusion, then. Service user training is an exciting and essential development in mental health education – for professionals, users, carers and the wider public. Like the others have already said, who better to explain mental distress than those who live it, breathe it and are (in one way or other) surviving it? It has the power to break down stereotypes, and has an impact way beyond other more academic methods. It’s about real people and real life experiences. There are many positives gained from such training, but there are still many barriers and pitfalls that have a nasty habit of getting in the way. I firmly believe, though, that it’s well worth the ride and that as our collective experience grows the pit falls will be more easily avoided. Personally, I’m looking forward to the time when service user training is the norm and not the innovation.

Rachel Waddingham © 2003