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Head of Patient and Public Involvement, Mental health Foundation
What will patient-led services look like?
TRANSCRIPT Excerpted from British Psychoanalytical Council Recording Part 2
So I sit here as someone who is broadly speaking, delighted to be able to sit here.
But I think before you think about the future, it is worth remembering how it is we got here. It's very important that we listen to things with a skeptical ear. It is frighteningly close to 30 years since I first used mental health services. And every time I've used mental health services, I have been promised that my problems will be solved. And since that first happened, back in the late 70s I collected 6 diagnoses, I've collected 22 psychiatric treatments, I experienced a whole range of therapies, many of which are strongly evidence-based and throughout that entire period the only thing that remained consistent for me was that I was hearing and seeing things that other people couldn't. So, with that in mind, I embark on this with a deep sense of skepticism.
Firstly the fact that we are here at all, suggests that to some extent, and I'll leave you to make up your own minds to what extent, psychiatry has failed to deliver what it promised. I have heard countless times, promises that depression will cease to be a problem because we are just around the corner from inventing the perfect drug to treat it.
Depression is still very much here, or we wouldn't still be here having this discussion.
And so you'll forgive me for being slightly cynical at the notion that depression, a cure for depression, is just around the corner in the form of evidence based talking treatments as well.
Secondly psychiatry has at its heart the notion of dividing people up into diagnostic boxes, and then your expert applying the appropriate tool from their toolbox to you as the person getting the diagnosis, in an attempt to make you better.
Thirdly, that notion of making me better has always been based on somebody else's view of what normality is. Now, in my psychiatric career I have sat across the table from countless professionals all of whom had their own view about what is normal. All of whom have been striving to get me closer to that than I was when I first walked in the door and met them. All of whom, I'm proud to say have spectacularly failed to do that.
And finally, in terms of how we got here today. We have seen an explosion over the last thirty years of evidence-based practice but what we haven't yet seen is an explosion of what constitutes evidence. From my own personal experiencea very brief narrative if you likewhen I first went in to services I was embarrassed to say that I was seeing and hearing things. It took me years before I could actually say to the person that was there to treat me that that was actually why I was there. Then once I'd said that, they were falling over themselves to find ways of stopping me hearing and seeing things. And each one of them failed, and each one of them made me feel much, much worse about the whole business. So eventually I just lied, Halleluiah I am no longer hearing and seeing things. And that was fantastic because, their treatment had worked. Evidence-based psychiatry in action. They had someone who was no longer seeing and hearing things.
And I think that lies at the heart of why I worry about what constitutes evidence-based psychiatry, evidence-based practice and evidence-based talking treatments. Because I can go through the same process with any approach that any one of you good people would have taken with me. And if it had annoyed me enough, or damaged me enough, sooner or later out of sheer survival, I would have agreed that I was no longer hearing and seeing things. And you would have got your evidence. That your processes were working.
Now I don't see, from my own point of view, I concentrate on seeing things and hearing voices, but I experienced a huge amount of depression alongside all that. Frankly a lot of that was a result of broken promises and failure to deal with hearing and seeing things. Some of it was a result of pharmaceutical intervention, and some of it was this notion that I was so far from what normality should be, that I was a failure, and that I needed to sort myself out.
And I think in many ways, my story may be my own story, but it also typifies a lot of people's experience by the time they get to the stage where they, what they desperately want, is talking treatments. I think it is absolutely fantastic because I know hundreds of people who use mental health services, probably rather more than that and the vast majority of them do say, we want talking treatments.
But I think there are three reasons for that, that we haven't as yet adequately explored.
Firstly the good reason, some people have had them and it has helped or they know someone who's had them and it's helped. And that's fantastic
Second reason, not so good. People are desperate for something that will help, and they think that that just might. And that's not a good reason.
Finally, some people think that anything that isn't drugs, and anything that isn't psychiatry has to be a good thing. That's not a particularly good reason for seeking talking treatments either.
But that's how we have got here.
And those are some of the reasons why people really want talking treatments.
And for those of us who do want talking treatments. I would offer these three things.
Three words of caution really:
Firstly, and so many people have said this that I don't need to labour the point, talking treatments are no more a magic cure to all ills than Prozac is. Be very careful what you promise. Do not go out there with grand gestures saying that you are going to cure depression, we've heard it all before, and the first time you fail to do that will be the start of your undoing.
Secondly, be very careful about putting people into diagnostic boxes. Actually we are not very good at putting people into diagnostic boxes. If we were I wouldn't have accumulated six of them by the time I got here. And I have to say I am not that rare in having more than one diagnosis.
Thirdly, there needs to be a slight move away from this attitude that we are passive recipients, eager to receive the wisdom and gifts that you all have to offer us in helping us to banish this depression that's dogged us for so long. Because in the back of my mind I'm worried that psychological treatment doesn't have a very strong record on service user involvement. Say what you will about psychiatry, I think we are being far too polite in the discussions so far, but psychiatry has finally actually got the hang of service user involvement being the important and fundamental thing. And actually, it's getting quite good at it in some bits and pieces of what it does.
Talking treatments are no where near that yet. Talking treatments are still in some places giving out a feeling of being more like a religious cult, where they are there for the believer, they are there, if you believe in it, you'll be cured you'll benefit from it. If you are not, you are an outsider, and you're not ready to join.
The other thing that I have to say, this is just a personal thing, I spent a lot of time in therapeutic environments with therapists and there is a real risk that sometimes the way you present yourselves can come across as either smug, patronizing, or you know, creating some kind of dependency. On you. And it is really, really important that you don't move from one paradigm of psychiatrist as God, to another paradigm of talking therapist as smug friendly person. And all along the way missing out the whole purpose of what we are here to do.
xx recording edit xx
We've also got a track record of a whole range of initiatives aimed at challenging inequality, they happened in education, they happened in general health, that may have been the aim, but the outcomes have been that the real beneficiaries the middle classes who are kind of getting the services they should have got anyway but were just happy to pay for it. There is a real risk that if this particular reform isn't handled properly, and if this money isn't spent wisely, it could end up with all this money subsidizing life-style choices of the middle classes who could actually go out and buy what we are offering anyway.
For this money to be well spent we really do need to turn a few things on their head. We need to move away from thinking about how we can deliver services to people, to how people can regain control of their own lives. We need individuals to define their own service outcomes. Rather than be seen as being moved towards some nice white middle class notion of normality. And with that in mind we need to change what we think of as evidence for effective interventions, as those which best deliver getting a person back on their own desired outcome.
When I went into mental health services I wanted to be an economist. Which some people think is an early indicator of psychoses! Throughout my entire passage through psychiatric services none of them ever worked towards helping me get towards that goal. They were all about stopping me seeing and hearing things. And I sit here now and I'm still quite capable of seeing and hearing things that the rest of you don't. I'm no nearer being an economist and in many ways I think that's a shame because the one thing we really need in mental health at the moment is talented economists who can really work out these economic arguments.
So I would say, the ultimate goal for services in the future, if they are service led, is that we should be moving away from models of service delivery, and moving towards self-management. Moving towards a situation where rather than defining people by their diagnosis, or their class, or their gender, or all these other things that have such a strong impact on what we get out of life. We move towards people setting their own goals, setting their own outcomes, and becoming their own care co-coordinators in a chance to get that.
People should be no longer be defined by their service use in my ideal future, people won't have their future mapped out on the basis of their diagnosis particularly not a diagnosis that they receive at the age of 13. People need to get back control of their own destiny. Now to do that we need your help we need your therapeutic help and we need your political help but most of all we need you to believe that partners in care means that you are not there for us to help us become normal like you but you're there to help us to become normal like me."