No evidence for personal budgets?

The National Audit Office (has published a fairly scathing report on what it sees as the lack of evidence being gathered on the impact of implementing personal budgets. It recognises that personal budgets have wide support and that most people (but not all) benefit from the policy, and it notes the number of anecdotes of positive experience, but it does not accept that the national surveys of outcomes associated with personal budget use are robust enough as a national evidence base, because they rely on councils choosing to take part.

The NAO is right to suggest that with £6.3bn spent on long term community care and 88% of it spent via personal budgets in 2014-15 (after which personal budgets in theory became the only way it was spent), the Department of Health (DH) and councils have a responsibility to develop an evidence base on how the policy is implemented. The NAO was surprised to find that policy makers were still relying on research done in 2007, pre-crash, but it could have said much more about the worrying lack of evidence when it comes to the impact of cuts on people taking personal budgets. It highlights an obvious but unexplained discrepancy between individual level studies showing personalisation benefitting people which is not reflected in area level data. It also highlights the discrepancy between the DH’s expectation of making no savings through personalisation and the large proportion of council bosses who see increasing personalisation as a key source of savings. When changes labelled ‘personalisation’ are seen as a route to savings, they rarely feel very personalised to the individuals involved.

The variation from council to council in whether personal budgets were being offered (as low as 10% of people in some areas) is shocking, as is the variation in the proportion of people taking their personal budget as a cash Direct Payment, which the In Control POET survey has consistently associated with better experiences and outcomes: from only 5% to 57% (average 22%). There is no good reason why people in some areas have ten times the likelihood of taking full control of their personal budget compared to others.

The report is a useful challenge to lazy thinking about personal budgets and personalisation, which is complex and has suffered from over-simplification both from some of its advocates who sold it as the solution to every social care problem and budget challenge, and from detractors who talk as if it ended a golden age in which enlightened professionals knew best and always ensured disabled and older people lived great lives (with one or two commentators jumping between one extreme and the other).

But the report relies itself on a number of assumptions which need to be challenged. The complexity and whole-system nature of personalisation (a shift towards choice, control, inclusion and community development of which personal budgets or Direct Payments can only ever be one part) means that it is not feasible to apply medical research standards to the evidence of whether it works or not. There is no single area which has yet made the complete shift to a personalised system, nor any area which has made no part of that shift, so there is no area where you can either see what happens in a fully personalised system, nor a control group who have experienced no part of personalisation.

Personalisation is as much a civil rights movement as a practice change and again, it makes no sense to attempt a randomised control trial (RCT) approach to evaluating the impact of a rights movement. To some extent, whether a change ‘works’ or not, particularly whether it works for a government budget holder, is irrelevant to whether we should pursue a rights agenda. One of the key victories for disabled adults in particular within the personalisation movement is to establish as legitimate the idea that social care does not belong to professionals or councils, any more than people’s lives belong to the state as soon as they require long term care. The reality of the choice, control and independence which should follow that change of thinking is of course highly variable: our sector’s power bases and bureaucracies have proved resilient and expert at subverting the ideas and language of personalisation to the ends of maintaining the status quo. This is why some councils can regard mass cuts programmes as ‘personalisation’, when in reality they mean they are, as the report points out, failing to address the discrepancy between an individual purchaser’s buying power and the council’s bulk buying power; cutting personal budget amounts across the board; and cutting the price paid to providers, regardless of the impact of that on the choice of providers in the market and the outcomes those providers can realistically achieve.

That same bureaucratic mindset permeates and undermines the NAO’s report. It glosses over the vast benefits and status change for 120,000 Direct Payment holders who now hire, fire and manage their own support staff (PAs), preferring instead in to dwell only on the (undoubtedly real) risks and problems faced by people who struggle to manage that aspect of their care. It appears to conflate personal budgets, personalisation and ‘personalised commissioning’. ‘Personalised commissioning’ is a misnomer: a key lacuna in the report is that at present, save for a few areas, personal budget and Direct Payment holders (and self-funders spending their own cash) have no opportunity to take on commissioning power: all they can do is purchase. Commissioning is when purchasers are able to shape the market they buy from and to do that, they need to be able to act collectively. Depressingly but unsurprisingly, the report finds that where individual consumers are not able to use their limited resources to buy adequate care, some areas are taking that money and purchasing activity back in-house. The NAO’s financial analysts could have recommended another solution to this: help personal budget and Direct Payment holders to group together around shared needs, goals or capabilities to exercise collective purchasing power. This can be seen in the development of hundreds micro and community enterprises which include some of the most innovative and cost-effective uses of Direct Payments to achieve great outcomes for people, through activities and support which often looks nothing like social care, or any kind of public service, but feels a lot like a good life.

Debates around personalisation often boil down to a choice between arguments for the primacy of the rights of individuals, versus arguments for the primacy of the capacity and responsibilities of the state. The real goal should be to maximise the rights, capacity and responsibilities of individuals and doing this always starts with helping people who use support and their families to come together. Families and communities are the only sustainable infrastructure we have: we need to invest in them.