Professor Jon Glasby
With the NHS facing significant financial and service pressures, and with an extremely difficult winter looming, it seems a shame that the GP magazine, Pulse, has chosen to focus its recent concerns on the advent of personal health budgets. Under the eye-catching headline 'Revealed: NHS funding splashed on holidays, games consoles and summer houses', Pulse stressed how 'millions of pounds of NHS funding have been spent on luxury goods such as summer houses, holidays and pedalo boats' and how 'the scheme to give 'patients more control over their care' has been used to buy many unevidenced treatments at the expense of long-established services, which have been defunded' Although the end of the article acknowledges that an independent evaluation found significant improvement in quality of life and psychological well-being as well as a reduction in hospital costs, the magazine also pointed out that some money was spent on items such as theatre tickets and ready meals (presumably implying that this isn’t an appropriate use of public money).
To put my own cards on the table, I have been an advocate of personal health budgets (in some settings), since I ran a 2004 national policy event on the potential to extend direct payments from social care to health with the National Centre for Independent Living. Although potentially radical within an NHS context, direct payments had existed in some local authorities since the early 1980s, and had been more of a mainstream option across all Councils following legislation in 1996. Crucially, this way of working came not from formal services but from disabled people themselves, who saw having greater say over how money was spent on their behalf as a key part of achieving greater citizenship and living chosen lives in the same way as non-disabled people. Over time, they responded to similar questions to those raised by Pulse, and proved time and time again that people with support needs, especially when working with skilled public service professionals in a partnership of equals, can often know best what might work for them and what a good outcome would look like.
Over time, we have been involved in advising Downing Street, the Department of Health and the Cabinet Office, as well as providing support to localities seeking to experiment with early forms of personal health budgets. We produced the UK’s first introductory textbook on direct payments and personal budgets and one of the key studies on how personal budgets have spread to other sectors, as well as publishing a series of policy papers as part of our ‘Beveridge report for the C21st' on the implications of these ways of working for health, for children’s services, for criminal justice, for regeneration and for the tax and benefits systems. More recently we have published an edited collection around 'Debates in Personalisation', bringing together those who agree and disagree with these concepts to debate the issues together. In the process we have worked closely with Simon Duffy, the inventor of the concept of personal budgets, Director of the Centre for Welfare Reform and an honorary member of HSMC staff.
While recent headlines raise potentially legitimate concerns about how we best spend scarce public resource, I’ve never seen personal budgets as anything more complicated than being clear with people from the outset roughly how much money is available to spend on meeting their needs and then enabling them to have a greater say over how this money is spent. At its best, it’s about a genuine partnership between the person (who is an expert in their own life and how this is affected by their care needs), and the professional (who has technical knowledge of the condition and of how the broader system works). It means that decisions which really matter to people are taken as close as possible to the person they affect – ideally by the person themselves (or, if this isn’t feasible, then by someone who knows them well and cares about them). Viewed this way, personal health budgets are little more than sensible delegation, and it’s sometimes hard to see how they attract such concern.
When I was training as a social worker, I worked with someone trying to come out of secure mental health services back into society and back into employment. He wanted to go back to night school to finish his training as an electrician, get fit again (after putting on lots of weight as a side-effect of his medication)and to be in a position to make more friends and potentially meet a partner. While he received lots of money from housing and disability benefits, all this was taken off him to pay for the cost of his care – leaving a personal expenses allowance (or ‘pocket money’ as it was nicknamed) of just under £15 a week. His argument was that he stuck in the mental health system for life as revolving door readmission, not because of his schizophrenia (which was under control at the time) – but because it’s physically impossible to rehabilitate yourself on £15 a week. If he’d been able to pay for an adult education class, go to a gym and get a bus pass, he felt he might have sorted his employment, his health and his relationships, with a genuine shot at rehabilitation and a saving to the system of hundreds of thousands of pounds of future costs. Sadly we didn’t have personal budgets at this time and he remained in the same hostel with his £15. While working with this person in a different way might have been time-consuming for already over-stretched workers and might have raised complex issues of capacity, consent and whose outcome we were prioritising, it might still have delivered a better outcome for everyone – the person, the worker and the health and social care system.
This early experience taught me a lot about the nature of expertise – while this person had experienced various problems in his life, his diagnosis of the failings of the system felt spot on, and his proposed solutions were simple, affordable yet somehow still potentially revolutionary in terms of how we think about health services and spending. Taken out of context, this type of expenditure could be seen as frivolous and as undermining the NHS – but to me it just seemed the right thing to do (and certainly a form of innovation that the NHS would do well to harness in certain circumstances). If we’re clear that the state has a duty to help meet an assessed need and we understand something of the funding we have available to help meet that need, then building on the expertise of the person with the need surely has to be part of the solution?
Jon Glasby Head of School School of Social Policy
A third edition of Jon’s book on Direct payments and personal budgets, co-authored with Rosemary Littlechild, will be published soon by The Policy Press.
For further discussion, see HSMC’s ‘Active patient: the case for self-direction in healthcare’ (published in conjunction with the Centre for Welfare Reform) which explores the merging national and international evidence base, practical implementation issues, and situations in which personal health budgets might and might not work well (http://www.birmingham.ac.uk/Documents/college-social-sciences/social-policy/HSMC/publications/2010/Active-Patient.pdf).