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The Ethics of Personal Health Budgets in Austerity

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Back in September, Personal Health Budgets attracted some criticism from the British Medical Association and other medical quarters. I was discussing this with a colleague a couple of weeks ago, and we were trying to decide whether the criticism was fair.

 

We weren’t alone. Social media were alive with the debate. It seemed that the BMA criticisms could be read as either:

  • Legitimate concerns about the misuse of public funds (in this case, ‘frittering away’ the NHS budget by paying for activities such as singing lessons).
  • Shockingly ill-informed criticism of one of the key principles of ‘personalisation’, itself a key method of delivering patient choice.

 

What makes this argument interesting is that both perspectives have validity, and (importantly), they are not mutually exclusive. In my view, the debate centres around two more-or-less unassailable ethical positions.

 

  1. Tax payers should have a say about what their money is spent on.
  2. People using an amount of public money to meet their own health needs should be able to spend it on the care and support that works for them.

 

The first position is deeply embedded into our political system. In the last General Election, a vast amount of media coverage was devoted to the NHS, benefits, and the management of the economy. According to IPSOS/MORI, these were the three most important factors in determining voter preferences. No wonder, then, that each political party had its own carefully crafted policy on how it was going to maximise the return that taxpayers would get on their investment.

 

At the same time, healthcare practitioners have been worked on by successive governments to try and make them more accountable for the financial decisions they make. One recent incarnation of this is Clinical Commissioning Groups, which were introduced by the Coalition Government, and which makes small groups of GPs and other practitioners responsible for the entire NHS budget in their areas. To help them, the state produces a vast array of information, with 37 commissioning policies to ensure national consistency and 236 NICE guidelines that recommend treatments for different conditions. In today’s NHS, we expect our clinicians to be careful about how they spend our money.

 

The second position is newer and more complex. There has always been a principle of ‘informed consent’ in medicine, which usually means that the final decision about the treatment rests with the patient. Some groups have always had problems exercising this right. Disabled people have fought a long battle to demonstrate that they could spend the money the state spends on them better than the state could. After the law changed to allow Direct Payments to users of state social care services in 1996, it took another 13 years for the same principle to be applied in the NHS. Personal Health Budgets (PHBs) were pilot tested with people in the ‘continuing care’ needs group, who, as the name suggests, needed long-term care in their own homes (or care homes). The independent evaluation of the pilot programme found that on average PHBs could improve quality of life and wellbeing, but made no difference to the underlying health condition. This third point is crucial. If PHBs made people’s health worse then you could argue they shouldn’t be used. But as they don’t, how can you argue that people shouldn’t have the choice?

 

So, then, what about these singing lessons? Are they a waste of public money or not? I think that if you can occupy both ethical positions – legitimate use of public money, and real choice about support – then they’re not. The question is ‘How do you go about doing so?’.

 

Firstly, the problem of spending public money on something that’s not useful. In the early days of Direct Payments, we worked from the care plan. This was drawn up by the social worker, preferably though not necessarily with the involvement of the service user. If you took an element of the plan, say help from a care assistant to get out of bed and dressed, then the standard approach was to get 3 quotes from 3 different agencies and let the service user choose. Choosing a cheap care service might save enough money to let you choose a better day centre. Some choice then, but hardly the revolutionary change that disability activists were hoping for.

 

In 2008, Direct Payments were reborn as part of what was intended to be a transformation of adult care. In the new incarnation, money was allocated for assessed ‘eligible needs’ in what was often described as ‘points make prizes’ system. The prize was an individual budget that could be spent on a much less restrictive range of supports. These were often framed in terms of meeting people’s life goals, not just their care needs – in other words, real choice. The main rules were that funded supports had to be legal, and should help to achieve one or more of the outcomes agreed with the client. The support plan as a whole had to meet the all the assessed needs, but there was no requirement to spend more or less money on any individual element. The final support plan and final budget still needed to be agreed by social services, which ensured that state expenditure was still being agreed by state employees. This is basically the model that has been adapted for PHBs.

 

I’m going to use the example of driving lessons rather than singing lessons as an illustration. I was told recently of a man who had used his personal budget to pay for driving lessons instead of taxi fares to visit his mother, for whom is also a carer. It costs less, and helps him move towards his goal of independent living. This ticks all the boxes – better life chances for him, maintaining the family structure, more effective use of public funds. It’s just as easy, though, to imagine a situation where driving lessons wouldn’t be a good use of public money. Say where the man lived with his mother, already had a motorcycle for transport, and had the option of using his Direct Payment to pay for a training course that would help him qualify in his chosen career.

 

So, context is everything. Singing lessons might be frittering away public money in one context, but not in another. Is it part of individual healthcare professionals’ responsibility to check that public money is being used to meet the goals for which taxpayers expect it to be used? Yes, absolutely. Is it OK for people to develop innovative and imaginative ways of meeting their own needs that also advance their life goals? Of course. Is it possible to work out whether PHBs are working by cherry-picking some whacky-sounding supports from a Freedom of Information request that looks at supports outside of their original contexts? Probably not, which is probably why the Department of Health has commissioned a second wave of evaluations.

 

So, does this mean all is well in the house of PHBs? I think there are still some important questions to answer, but I’ll leave these for future posts.

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