It’s rare to find a health or care planner who doesn’t talk warmly about the importance of involving people in decision making. But do they really mean it?
A good way of testing this question lies in the extent to which decisionmakers are willing to share the things that really matter to them: power and their money. For almost 20 years now, citizens have been able to demand a small share of the power and the money in social care, through exercising their right to a direct payment. Now the NHS, long seen as addicted to command and control, has made a public commitment to a more collaborative model of healthcare, including through individualised personal commissioning (IPC), which builds on the personal health budgets programme that has been helping people with long-term conditions to take charge of the resources supporting their health.
Transforming the culture of healthcare from clinician-led to collaborative is likely to be a long haul. Even in social care, with a stronger history of holistic and community social work, some people have been offered changes labelled “personalisation” that have left them with more responsibility, fewer resources and less back-up in a crisis.
Personalising healthcare is, however, the right thing to do. National research, including the recent annual Poet survey of the outcomes of personal budgets, has consistently shown that most people who experience genuine choice and control are happier and have better outcomes. Some people have been able to construct complex support packages that fit around and facilitate ordinary living: in other words, integrating where service planners have not been able to.
So what can the NHS learn from the social care experience?
First, personal budget control can help people make different demands, but it’s meaningless unless supply is also reformed in anticipation. In some areas, council procurement and commissioning practices have continued as usual, while personal budgets are introduced in an entirely separate workstream. This is not a real transfer of power and money. It may offer new rights and create more informed healthcare consumers, but wellbeing is not something we can have a right to, nor consume. It is something we can try to achieve, in collaboration with healthcare professionals and those around us. The promise and challenge of personalisation is not to create new rights but real and meaningful ways to share responsibility.
That culture of collaboration does not automatically follow personal budget reforms. Social care is still only patchily embedding collaboration across the system, particularly into commissioning, 20 years after direct payments legislation. Some areas such as Leeds are, however, helping people to pool their resources – not just the state’s money or their own, but also their own creativity and the contributions which could be made by communities – so that citizens may act as commissioners, not consumers.
If healthcare manages to achieve these challenging changes, this will still be only one part of achieving wellbeing for people with long-term support needs. The ultimate goal is to help people to live good lives in good places. That goal – effectively expressed in the wellbeing duty of the Care Act – needs embedding throughout the system; in traditional services as well as newly-created ones. This means the values of IPC must permeate the whole system, with, for instance, every healthcare intervention expected to help people to connect with those around them, to take charge of their support and ultimately their lives. The new NHS plan suggests that vision is shared by NHS England. People who have successfully developed personalisation in social care will have much to offer in making that vision a reality.
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