Some years ago I was told off by a mental health worker for using the word ‘chronic’ in a presentation I was giving on the Chronic Care Model, an approach to organising care widely used in long term physical health conditions. It’s been used in improving care for depression and I wanted people to think of applying the same principles to improving care for people with severe mental health problems.
‘You shouldn’t talk about ‘chronic’, we emphasise recovery now,’ she told me.
I remember feeling a little bruised by the encounter. I certainly hadn’t wanted to suggest recovery wasn’t possible. I know it is but of course it depends how ‘recovery’ is defined.
I’ve seen people with all kinds of mental health problems, from psychosis to depression to substance misuse, manage to reclaim their lives and get back to something they would consider to be a ‘normal’ life- if there is such a thing. When we asked people in the community who had experienced depression for up to several years how they defined ‘recovery’ many of them didn’t understand what we meant. The ‘recovery’ literature has not penetrated much beyond mental health care. When we asked how they defined ‘getting better’ they talked about:
…not feeling tired, achy, sad… So feeling normal is getting up in the morning going, “Oh, right, yes, new day.” Get ready, have a shower, brush your teeth, clean up quick so you can get out.” (Makin and Gask 2012)
In other words not having to think much about the minutiae of everyday survival.
What has become clear to me is that recovery is a very personal experience. It is not about symptoms, but more to do with a sense of being able to live life with a sense of fulfillment. It’s not static, but a dynamic phenomenon- your perception of it changes over time. When I have been very low, my perception of my own state of ‘recovery’ has been quite different from how I view myself looking back in time- when I can appreciate I may have been much less’ recovered’ than I thought I was. We all approach it at our own pace. It cannot be externally defined. Some addicts call themselves ‘recovering’ in perpetuity. I understand what they mean. I have met many people who have had great difficulty in achieving it, but I’ve tried hard to help them lead the best quality of life they could, given the problems they faced. I don’t know if they would have called this ‘recovery’. I didn’t ask. But I didn’t give up hope for them getting what they wanted from life.
So I am deeply disturbed to observe just how the term ‘recovery’ has been turned into something that many people with mental health problems now feel is an imperative. Something to be enforced upon them. Even more worryingly a state which can be achieved, even by people with severe mental health problems, through use of the kind of often simplistic self-help materials for which the evidence isn’t particularly strong even for common mental health problems. To provide a person in a suicidal crisis with an information leaflet suggesting they might get benefit from a cup of tea, and that they should immediately be writing their ‘wellness and recovery plan’ is not only crass. It is cruelly denying the reality of the depth of that person’s suffering. It is suggesting that it is simply their lack of knowledge of the healing power of caffeine that is responsible for them seeking your help. That once you’ve provided them with the piece of paper with the bullet pointed recovery aid-memoire, this is all they need to know to feel better. They will just be able to get on with it. If this were the case we could do away with skilled workers providing face-to-face care and replace mental health clinics with leaflets and a drinks machine- which is indeed the direction in which we are going.
But we cannot pretend that people do not need a great deal of help to recover. Recovery is a collaborative process. It is a goal to be negotiated between a service user and mental health worker in the often very difficult process of changing how we see ourselves, the world in which we live and the future. It may involve coming to terms with terrible trauma from the past, and the discrimination, stigma and social inequalities of the present.
We cannot force a person to recover. Our politicians, instead of aiding personal recovery, have redefined what recovery is. It means getting back to work and being economically active. The personal has become political in the most disturbing way.
I don’t know if I am recovered. I prefer to think of myself as ‘recovering’ from depression. I’m still on a full dose of meds and I have given up work. I’m achieving my own personal goals. That’s enough.
In response to the criticism of my approach to ‘Chronic Care’ I wrote a paper with the late Helen Lester on the importance of a collaborative approach to care of people with long term mental health problems, who need high quality, person-centred care plans, jointly negotiated with well trained and supervised mental health professionals, to help them achieve their own personal goals.
As long as we do it, I don’t care what you call it.