The expert patients programme should be one of the most progressive ideas in recent health policy. The idea is a great one – we empower patients with long-term (chronic) conditions to self-manage their own care. Studies from the US show how patients can meet this challenge by taking greater control of their own medication, going on courses that help them to do so (http://patienteducation.stanford.edu/programs/cdsmp.html), and which are now available in various forms (including on-line) in the UK (http://www.expertpatients.co.uk/). Expert patients make less use of their GPs, and are encouraged to develop a deep understanding of their illness, supported by medical professionals as they need them. All good, yes?
There is a lot of good potentially here. It’s clear that we need to make more of an effort in the UK to understand our own health, with comparative studies showing we are somewhat laggardly here (http://www.amazon.co.uk/Culture-Health-Illness-Hodder-Publication/dp/0340914505/ref=sr_1_1?ie=UTF8&qid=1314174818&sr=8-1). We will also have increasing difficulties in dealing with long-term conditions as we get an older population and, according to the DH, one in three of us already has a chronic illness of one kind or another.
But there are also problems. My reading of the DH’s publications on this area, going back to 2001, seems to suggest that the issue of cost-saving is often at the front of policymakers’ minds. Getting people to be self-managing when they want to be is one thing, doing it to save money is another. Wilson’s work (published in Health and Social Care in the Community in 2001) suggests that it is an expression of pastoral power, attempting to move the responsibility for chronic disease away from the the state, and my own attempt at contributing to the debate (published in Social Theory and Health in 2008) suggests the Expert Patient patient programme resonated with the previous (and I suspect current) government because it cast illness as a mental problem that with appropriate management techniques could be overcome.
What I’m trying to say here is that long-term conditions are a complex mix of clinical and self-management problems. Training for the Expert patient programme, on the other hand, tends to focus on it as a self-management problem. I’m very happy for patients who want to be less dependent on the NHS to take greater control of their care, but worry if that might be what becomes expected of them, or that pressure is put on patients to do it when they don’t feel equipped to do so. Presenting long-term illness as a management problem has a tendency to lose the clinical part of disease, and to make it a cost-saving opportunity. And that makes me very uneasy – especially if we are entering an age when GPs consortia might be looking at cost-saving on a much smaller scale than in the past with the abolition of PCTs.
I don’t think GPs will be directly applying pressure on patients to become self-managing (at least I hope not). But reviewing chronic cases and encouraging more patients down the expert patient line is a very definite possibility, and raises the question of whether the gains from the expert patients approach are quickly exhausted.
The people who want to become expert patients probably already are, who have found out about it for themselves, and want to become self-managing. Training courses might help support such patients, but they’d probably do it without them. There may be a group of people who don’t know about the self-managing approach and could benefit from it, but I’m not convinced this is a big group. It also seems that the benefits patients get from being part of the Expert Patients programme seem to stem mostly from being involved in the training rather than from reduced dependence on health services (http://www.medicine.manchester.ac.uk/primarycare/npcrdc-archive/archive/PublicationDetail.cfm/ID/225.htm), and that the benefits might be restricted to a highly-motivated group wanting to participate in the programme rather than being applicable to those with long-term conditions as a whole.
What this means it that it is difficult for the Expert Patients programme to free up clinical time by making patients more independent, or save much money. Becoming self-managing has a substantial up-front costs as patients are trained, and they may need a great deal of initial support to become more dependent later on. A report from the Multiple Sclerosis Society (Measuring Up) in 2003 made it clear that they saw little savings from the programme as a result of these up-front costs. The same report also raised questions about the availability of the training needed to make the programme a success.
We need to do all we can to get patients to be more responsible for their own health, but recognise that doing so is not just a self-management problem, but also a clinical one. We also have to accept that not everyone is going to want to become an Expert Patient, and any potential pressure on them to do so for cost-saving ends is deeply troubling. Putting health services on a basis where budgets are both under pressure and held by smaller units creates the potential for tensions such as these to come to the surface. We all want the NHS’s budget to be spent responsibly. But we also want it to serve the people who need it the most instead of making them think twice before calling a clinician because they think they are meant to be self-managing.