Personal budgets are in the headlines after Pulse published research based on FOI requests to CCGs.  The headline on BBC’s Today programme was “Treats instead of Treatments” and the line promoted by Pulse was that Personal Health Budgets (PHBs) lead to inappropriate ‘non-evidenced based’ spending by the NHS. The examples provided included a summer house, a Wii Fit consul, an iRobot, holidays, horse-riding, music lessons and a sat nav device; or as Pulse put it in their scare headline:

“NHS allows patients to splash cash on holidays, summer houses and Wii Fits.”

Interestingly this shock headline generated the most intense media interest in the idea of a personal budgets in my career. I have been working on these ideas since 1990, and invented the concept of personal budget.  I have seen how powerful it can be for people to have more control, choice and creativity in their lives; although I’m also very aware of how good ideas can come unstuck and be corrupted.

Thomas Edison once said of innovation, “The worst is to come, for it takes about seven years to convert the average man to the acceptance of a solved problem.” However I think that when it comes to the welfare state seven years is something of an under-estimate. Government can both resist and distort innovations, and the normal rules of human behaviour don’t apply when you are dealing with vested interests of the civil servants, politicians and the professional establishment. As Robert Townsend put it:

“It’s a poor bureaucrat who can’t stall a good idea until even its sponsor is relieved to see it dead and officially buried.”

However, once Government does get hold of an idea then everything changes. After the New Labour Government became enthused by these ideas in 2005 I watched them, quite naturally, slip from my control, and that was a humbling experience. So it was interesting for me to find myself defending personal health budgets on the BBC and Sky when they are now being implemented by a Government that I despise.

Looking at the report by Pulse in detail is also interesting, both for what it reveals and for what it hides. It provides a useful indication of the overall level of spending on PHBs, estimated at £123 million per year for 2015-16, which is just over 0.1% of NHS spending. Yet I suspect that the amount spent on things Pulse deems inappropriate must be minuscule, and I could find no relevant data.

Furthermore we learn that the number of people using PHBs is 4,800, which suggests an average package cost for individuals of £25,600. This is a significant sum and it probably reflects the fact that PHBs have been targeted on those people with most significant needs, often people on continuing care packages. However, this fact, and the significant needs of those using PHBs, was not mentioned in the report.

Another interesting point raised by Pulse was the fact that, in a survey of more than 1,500 patients by the Patient Information Forum, more than half of patients with long-term conditions felt they would be ‘unable to make decisions’ on spending a PHB. I must admit to be confused here. Surely this means that a significant number of people do feel ready to make such decisions. That sounds like a great starting point for an emerging innovation like PHBs. There is clearly significant interest and demand already.

The Pulse report also touches on some of the real issues, for example: How do we define who is eligible and what level of funding should be made available? Dr Brian Fisher rightly suggests these issues are critical and that without the necessary controls PHBs could become unaffordable. However I doubt this is the main risk for the current programme. Progress in implantation remains slow and getting a PHB is far from easy. If funding levels are successfully set around current norms then the programme will continue to generate efficiencies – not increased costs. However effective implementation will be vital if efficiency is to be guaranteed.

In contrast to this, Pulse also argues that these individual arrangements may lead to the opposite problem – increased cost-cutting. In the UK’s current context I suspect this is the bigger risk. Monolithic and institutional services are much harder to cut and much easier to defend; and while the 30% cut to social care in England may not have been caused by the use of personal budgets it certainly certainly hasn’t help to defend social care from this assault.

However the one example of cost-cutting provided by Pulse is problematic. Pulse cites a day centre that was forced to close because its funding had been put into personal health budgets. I must say this sounds quite odd to me. NHS money isn’t labelled in advance like this. Surely if the money ear-marked for personal health budgets (0.1% of spend) could not be used to fund the day centre then some of the other (99.9%) NHS spending could have been used? It sounds to me like somebody’s been making up excuses:

“Sorry, we just had to close your day centre so as to fund these wacky personal health budgets.”

In reality there was clearly not enough support from within the CCG to justify funding the day centre. More importantly, this touches on a profound weakness in the Pulse argument. If personal health budgets are of any value then they must allow people to change how money is currently used. If money is used differently then it cannot be used on the things that it was spent on in the past. Is this really a bad thing? Do services have a divine right to exist? Moreover, while Pulse questions the evidence base of PHBs, what is the evidence base for mental health day centres? People do not use day centres because it is a carefully thought through and personalised solutions to their needs. People use day centres because that is where the system has historically invested money.

The final major criticism mentioned by Pulse (although interestingly not picked up by any of the media I spoke to on the day) was the ideological question: isn’t personalisation just a right-wing neoliberal idea? Now, personally, this is the most puzzling criticism for me. I am still struggling to understand how shifting socio-economic power to disabled people or to people with long-term health conditions is right-wing. I still don’t understand why leaving power with the NHS bureaucracy or medical establishment is left-wing. We’ve got something very muddled here.

Of course I can see that there is a severe danger that the current trend to ‘target’ ‘means-test’ and ‘privatise’ may be used to undermine the principles of the NHS. However I suspect that the real risk comes from the 8-9% of NHS spending that has already been privatised to the likes of Virgin.  It is private companies, not citizens and patients, who will eventually undermine the NHS, if we choose to let them.

Behind the headlines and the arguments what is clear is that many in the medical establishment are not convinced of the benefits of PHBs and are now willing to be much more aggressive in their resistance to their expansion. So, the question we must ask is why? I can see at least two possible hypotheses:

  1. Senior doctors and others are genuinely concerned with the well being of the welfare state. They wish to defend the principles of free and universal services and to reduce inequality and poverty in the UK and they genuinely believe that personal health budgets threaten the welfare state.

OR

  1. Senior doctors don’t want to share power with patients. They are worried they will lose control and that ordinary citizens will have more control individually and may start to ask more challenging questions collectively.

Both these hypotheses would explain the extreme scaremongering that we find in the Pulse report. I hope the first hypothesis is true. For if it is the first hypothesis that is true then, over time, more and more doctors will see the benefit of personal health budgets and will understand that it doesn’t have to threaten the NHS but can be part of extending the principles upon which the NHS was built. Personal and citizen empowerment is what the NHS should be about.

Moreover if these current fears reflect a real commitment to social justice then I expect to see the BMA and other leading professional bodies come into alliance with disabled people, trade unions and with the braver charities, in order to challenge the current Government’s vicious attack on the welfare state. We will see active protests to:

  • The selling off of the NHS
  • Deep cuts to social care and the means-testing of social care
  • Cutting benefits, especially for disabled people and people who are sick

One interesting test is coming up soon, for the UK Government is currently being investigated by the UN for breaching the human rights of disabled people. I look forward to clear and powerful statements by the BMA supporting the rights of disabled people to have the resources that are necessary for them to be full citizens – whether those resources come from the NHS or from elsewhere.

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5 Comments

  1. Richard Grimes says:

    I think, in general, PHBs are a bad idea, for several reasons, as I will explain below.

    The NHS is a planned system, it gets its strength from being a planned system (as we can all agree, unplanned market systems provide poor healthcare). However, the NHS’s biggest weakness is that it is a planned system because this can produce a one-size-fits-all service. The current version of NHS planning is commissioning. Commissioning should provide hight quality, timely, accessible and personalised healthcare. In a system where there are 17 million consultant led episodes of care every year, it is understandable that there will be some failures every year. Understandable, but not acceptable. PHBs are an admission that commissioning has failed. In any other service the admission that the service has failed would involve steps taken to improve the service. But PHBs do not do that, it is effectively the service being allowed to continue to fail and commissioners abrogating their responsibility and handing commissioning over to patients, or worse, to private personal budget management companies. I recognise that with a system as large as the NHS it cannot be successful all the time, but when it fails there should be a process to improve, not to simply tell the user of that service (in this case the patient) that the NHS has given up and now it’s their turn. As far as I am concerned PHBs should be there as a last resort, but when a PHB is awarded commissioners must investigate why the patient was not getting a good service and take steps to improve it. This way, the award of a PHB will benefit not only that *single* patient (as is the case today) but it will result in an improvement for *all* patients.

    Then there is the issue of personalisation. It really saddens me that the advocates of this policy that commissioners abrogate their duty to patients have taken over the word “personalisation”. The NHS planned system can provide personalisation, it does not require that commissioners throw up their hands in despair and make patients do their job. PHBs are just one way to do personalisation, and in my opinion, they should be used sparingly because personalisation should be built into all commissioned services. The appalling thing about “personalisation” being taken over by the PHB programme is that commissioners now think that the only way to achieve a personalised service is through PHBs which means that the majority of patients will not get a personalised service. (Want to know how to get a personalised service? Easy. Involve the actual patients who use the service. talk to them, and most importantly, listen to them. Vast improvements can be achieved this way.) In my opinion, the PHB programme should be halted and replaced by a “Personalisation” programme where PHBs are just one of several options.

    I would recommend readers to read through the Forder report on PHBs. This is the report commissioned by the DH to justify the policy. Throughout the report it says that conclusions were difficult to achieve because the study sizes were too small, which makes you wonder why the government mandates PHBs (it is government policy and in the NHS Mandate) when their most significant study says that the policy is inconclusive.

    The government likes to misquote the Forder paper and frequently say that PHBs improve people’s health. The study *does not* say that. Here are quotes from the summary, but I invite readers to read the paper to see that I have taken a balanced approach to selecting quotes.

    – Personal health budgets did not appear to have an impact on health status per se over the 12 month follow-up period.
    – No significant effects were found with regard to two clinical measures (HbA1C and lung-function tests, used where relevant)
    – there was no significant difference in mortality rates between the groups [PHBs and control group].
    – Separating personal health budgets into high-value (i.e. a budget of more than £1,000 per year) and low-value, it was the former that showed a significant positive impact on care-related quality of life (ASCOT) and psychological well-being (GHQ-12).
    – The difference in direct and indirect total costs between personal health budget and control groups after accounting for baseline differences were not statistically significant.
    – Using care-related quality of life (ASCOT) measured net benefits, personal health budgets were cost-effective relative to conventional service delivery (at the 90% confidence level).
    – There was no significant difference in the net benefit between the groups using health-related quality of life (EQ-5D) measured benefits.

    This says that there are no improvements in health or mortality of people on PHBs and there is no cost difference between PHBs and commissioned services. PHBs don’t improve your health, do not make you live longer and do not save money (or cost more). The study does report improvement in wellbeing (care-related quality of life and psychological well-being). However, to get this result the study had to split the patients into two groups where one had large budgets and the other had small budgets, it was only the former that showed improvements. To be frank, when you need to split a small group into two smaller groups to get a positive result, it shows that there is a problem with the policy.

  2. Richard Grimes says:

    One other point about PHBs being used to make cuts. I recommend that you have a look at Favell House in Northampton. This is a respite centre for people with neurological conditions. The centre has consistently provided high quality care and patients clinicians and commissioners rate it highly. However, the local CCG had to make cuts to its budget and identified this as a high cost service (of course it is, look at the patients using the service). The CCG cut the service and handed the patients a PHB, effectively saying that the availability of PHBs justified closing this service. (To be fair to the CCG, they did admit that there wasn’t a “market” for those services, but it still did not stop them handing patients PHBs and closing the service they relied upon.)

  3. Personal health budgets are about the daftest system imaginable, the real reason they would be implemented is to make cuts, why would I need a budget, I use the NHS when I need medical attention not until and when I need it.

    Budgets are about restricting delivery nothing else.

  4. Irwin says:

    This is a big debate that SHA needs to have.
    We cannot separate the deabte just to health; we have to look also at social care and potentially other public services.
    There is a difference between personalisation – which in general is a good thing and PHB’s where actual money is used to buy services through some kind of market which on balance is a bad thing. You could have forms of personalisation (Whole Person Care) – within a fully (or predominantly) public NHS. Anything can be potrayed as part of a plot to privatise or otherwise seak to destroy our NHS but there just might be other explanations.

    I still think most resistance to personalisation is from professionals who resist allowing patients control of any kind over their care.
    But good matter for informed discussion within SHA.

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