Does Doctor know best?
Vidhya Alakeson, Resolution Foundation
Two questions of evidence have long made personal health budgets controversial. The first - do personal health budgets work - was answered by the independent evaluation of the national pilot programme published last year. The evaluation found that personal health budgets are a cost effective way to improve the quality of life and well being of those with long term conditions and disabilities. The second relates to the use of personal health budgets to buy treatments and services that have not been deemed ‘evidence-based’ by the National Institute for Health and Care Excellence. This second question goes to the heart of personal health budgets and calls for a more fundamental shift in thinking in the NHS.
Personal health budgets allow individuals with long term conditions and disabilities to have greater choice and control over the care the NHS provides, much in the same way as personal budgets have done in social care. Instead of receiving centrally commissioned services, individuals use their personal health budget to put together a care plan that is specifically tailored to them as a person; to their individual priorities and needs. For example, Malcolm who lives with frontal lobe dementia was sent to an NHS day service four days a week when he came out of hospital. At the day service, he became aggressive, needed four people to manage his behaviour and had to have his medication significantly increased. With the flexibility of a personal health budget, he and his family have found that renting a flat close to their home and buying a Sky Plus box that can record Malcolm’s favourite television programmes is a far more effective way of keeping him safe, stimulated and well during the day.
Neither a Sky Plus box nor rent on a flat nor the multitude of other things such as bikes, massage therapy and computers, that individuals have purchased with a personal health budget are recognisable NHS services. None of them have been approved by NICE and none are ever likely to be assessed by NICE. But this does not mean that they cannot be effective. On the contrary, they have been shown to work well for particular individuals and often to work better than commissioned service or conventional treatments. However, it is not the case that personal health budgets dismiss evidence as unimportant. They simply move away from population-based evidence; recognise that evidence-based treatments and practices will not work for everyone; and allow innovation by individuals and their clinicians to better meet each person’s specific needs.
The approach to evidence taken by personal health budgets stems from three core differences with the view adopted by the wider NHS. First, personal health budgets are focused on the outcomes that services achieve for individuals rather than the services themselves. As a result, they accept that a far broader range of things can deliver health benefit than standard commissioning currently recognises. Double glazing can improve asthma and a holiday can reduce mental distress.
Second, personal health budgets recognise that there are two sources of evidence and expertise required to improve the lives of people with long term conditions and disabilities: the evidence that individuals and their families bring of how a condition affects their lives and the scientific evidence provided by clinicians. For conditions that cannot be cured but can be managed, both sources of evidence have to be brought to bear to enable people to live better lives.
Third, personal health budgets value the evidence-base of clinical medicine but also recognise as legitimate the innovation that comes from individual choices and experimentation. The current clinical evidence-based may be strong on symptom alleviation and improving clinical functions but in many other areas of life, such as employment and maintaining family relationships, it has little to say. Personal health budgets are a source of practice-based evidence that can shed light on the outcomes that matter most to individuals living with long term conditions and disabilities.
Doctor knows best? The use of evidence in implementing self-directed support in health care, by Jon Glasby, Vidhya Alakeson and Simon Duffy, is now available as a HSMC/Centre for Welfare Reform Policy Paper.