In defence of personal health budgets

The roll-out of personal health budgets to growing numbers of people has alarmed many campaigners. Here one of their pioneers tells openDemocracy why he’s still a keen advocate.

Simon Duffy
1 April 2016

Offering a defence of Personal Health Budgets (PHBs) is always an interesting challenge for me. Between 2003 and 2009 I ran In Control, which pioneered personal budgets and I was part of early discussions to extend personal budgets to the NHS. However I resigned from In Control after a disagreement with my board (chaired by Jo Williams of CQC fame) which rested, as best I understand it, on my critical attitude towards Government. Since 2010 much of my work has focused on defending the welfare state from our extreme right-wing Government.

So, as you might imagine, my views on the topic of Personal Health Budgets (PHBs) are complex, but to simplify:

Sometimes it is helpful to individualise healthcare funding and give control to the person or their agent. So, as PHBs do provide this option, I support them. As Vidhya Alakeson, one of the most intelligent advocates of PHBs, puts it:

“PHBs shift the conversation from inputs to outcomes. The NHS still operates on the basis of the services it can provide. That is the choice we offer people. PHBs help us start from the other end - by defining how you want to live your life - and then figuring out how to achieve that”

Or, as one of the wonderful peer support group PFG Doncaster put it: “Fund life, not services.”

On the other hand…

Our current Government is wicked. It does not care about rights, social justice, citizenship or community. Future historians will be amazed that the UK, once so proud of its welfare state, has allowed itself to be governed in this way. PHBs in the hands of this Government might easily be very damaging.

But that doesn’t make them wrong. After all, this Government is capable of corrupting almost anything.

openDemocracy asked me to respond to the following specific questions:

1. What’s the difference between personalisation and consumerism? How can advocates of personalisation resist consumerism?

Many policy-makers have treated personal budgets as a kind of neoliberal market reform. But In Control’s experience has been that that people use their budgets to build community - not to shop. This misinterpretation raises interesting questions about our policy-makers, their intellectual assumptions and their limited experience of life.

The real champions of PHBs like Vidhya Alakeson, parent Jo Fitzgerald or service-user and colleague Rob Moriarty, always focus on the importance of networking and peer support. Similarly the peer support group PFG Doncaster, came together to advocate for personal budgets in mental health.

In practice this will be one of the critical battles going forward. Business and bureaucracy will tend to prefer approaches, like the use of vouchers, which limit choice and tend to push resources into more traditional and commercial services. On the other hand people and communities will tend to reject vouchers and seek instead more flexible systems that allow for freedom, creativity and innovation.

As the authors of the main research on PHBs commissioned by the Department of Health put it:

“Generally, a more positive effect on outcome indicators was seen where sites: choose to be explicit in informing the patients about the budget amount; provided a degree of flexibility as to what services could be purchased; and provided greater choice as to how the budget could be managed. Some negative impacts were found for sites using configurations with less flexibility and choice than other sites.”

2. How can advocates of personalisation, stop it being used to justify cuts? Do those advocates accept they have a responsibility to do so?

One of the most depressing things about the last few years is that many advocates of personalisation have tried to avoid upsetting Government and have refused to express any public anger about what the Government has done.

To be fair, this is a much wider problem that is not restricted to personalisation. The current system of advocacy, charities, think tanks and consultants have all been largely silent in the face of the most extreme attack on the welfare state we’ve ever seen. Why? Well, not because of personalisation. The corruption of civil society by government has been a long process. We’ve lost the ability to defend social justice - and this problem is going to get much worse before it gets better.

However I do think advocates of personalisation, like myself, have a special responsibility to think about how these new kinds of socio-economic rights are defined and defended. The case for personalization is largely about increasing the socio-economic power of disadvantaged groups. You cannot simply choose to be an advocate for personal budgets and then ignore cuts to social care or other disability cuts. Personally I do not feel I have always done that effectively and I have apologised for errors in my earlier work.

But to put the boot on the other foot. Just because a socio-economic right to a budget is harder to defend than a care home placement doesn’t mean we should prefer care homes. On that basis every institution that has ever been subsidised by the state, should be defended. On that basis workhouses are better than pensions.

3. If centralised provision is cut because some people successfully use personal budgets to go elsewhere, what happens to those less able to use personal budgets?

This is a real issue. In Control has found that many people who begin to control their budget make clear that they do not want care homes or day centres and this has consequences. But it is a strange kind of argument to assume that people should put up with inadequate services, especially when that have shown that they develop better alternatives with the same money.

For example, the authors of the first In Control report observed that:

“In the space of less than a year, there were some significant changes in where people lived. For example, all those people living in residential care – 10 people – had moved to other kinds of accommodation.

People shared their homes with fewer others – down from an average of 6.2 other people to an average of 3.6. Four people lived alone at the time of the second interview.”

However there are certainly some people who want to maintain a service that others don’t want. Some people do like their day centre or their care home and are disappointed when others don’t and choose to leave. However, there is no reason in principle why people cannot pool resources and continue to buy into shared resources.

This is ultimately a matter of whether we take human rights seriously or not. If I want to choose something better – like a home of my own or a job that I prefer – then should I be stopped because this might disadvantage someone else? This is certainly not something we stop ordinary citizens from doing – so why do we think it’s reasonable to place such restrictions on people with disabilities, mental health problems or complex health conditions.

A decent welfare state is not about putting up with whatever we inherit – it’s about making it better.

4. If personal budgets are administered by bureaucrats in charities, how is this better than when they were administered by public servants (who are at least theoretically accountable)?

Interestingly one of the questions I keep asking is why statutory organisations themselves do not use personal budgets. For example, mental health services are usually very inflexible and institutional. It would be quite possible for the NHS to develop a system of personal budgets. However it is indicative of our current problems that the NHS focuses on outsourcing instead.

People should be free to decide who they want to manage their budgets and free to change their mind if they are not happy. We need to open up a range of options for management - including statutory services themselves.

Three final thoughts

Elsewhere on this site, questions have been raised as to whether PHBs are relevant to diabetes services. Recently there have also been questions about whether ‘birth budgets’ are possible in maternity services. These are reasonable questions; PHBs are not a panacea and are not appropriate in every situation. But I do think that there are plenty of cases where it is possible to see that they could be very useful indeed:

•   In mental health services they help people develop positive community solutions like peer support networks

•   At the end of life they could help people who want to die at home

•   For people with complex health needs, they will help people maintain a life of full citizenship

Of course it could be argued that you don’t strictly need PHBs in all these circumstances. But in practice it simply is very useful to have a flexible budget that you can control. How else are you going to enable citizens themselves to make decisions for themselves unless budgets are individualised and controlled by or close to the person?

I developed the original concept of a personal budget to help people with learning difficulties escape institutional living. If we seriously want to help the 3,500 people with learning disabilities who are still stuck in services that are run or funded by the NHS (and which are sometimes abusive) then PHBs will be part of the solution.

None of this means we should be naive. Government has certainly used personal budgets to thoughtlessly transfer risks and burdens to people and families, without the right kind of support. As my colleague Rob Moriarty, who uses a Personal Health Budget says:

“Personalisation is a term too liberally used. Yes the service user should always be at the heart of the planning process, but they shouldn't be left high and dry with responsibilities they can't handle, if they don't have the capacity to do so for the long haul. Even someone as articulate and educated as myself makes mistakes and gets tired with it.”

So there is much work to do to reform and improve these systems, and when we are having to cope with a Government like this then we must expect poor policy-making. But PHBs were not created by government, but by people like Jo and her son Mitchell, who simply wanted to live a life of dignity.

We must defend the welfare state. But we should defend the best possible version of the welfare state. If you treat PHBs as the work of the devil you will simply divide the forces of those fighting for social justice.

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