I was at the Kings Fund Annual Conference the other week and I was struck by how seriously most health contributors were taking patient involvement, patient feedback and the quality of the patient experience. There were plenty of examples – including those proposed by the Health Minister – that would strengthen the role and voice of the patient in the diagnosis, commissioning and delivery of health care. All of this felt to be appropriate and encouraging albeit a little familiar and repetitious. We have after all been saying this kind of thing for years.
However, as the conference went on the more I became uneasy about the nature of what was being proposed and the tone of the policy debate surrounding the issues. Despite the helpful and clear contributions from the Patients Association and the nascent HealthWatch the debate was essentially an internal one. How can we (Health Service Managers, Clinicians and Policy makers) design and provide structures and processes that engage the patient and public into what we do?
I came to realise that the debate was symptomatic of the gift relationship that exists between us professionals and the undifferentiated mass of others who are the (mostly) grateful recipients.
In other words “how can we help people share in the delivery of health services productively?” is the wrong question and one that is likely to be ultimately incapable of providing a sustainable or convincing answer.
The real question we need to ask is “How do citizens with health care needs want the NHS to involve itself supportively and helpfully in their ordinary lives?”
So, with this in mind can we answer to the question “Are Personalised Health Budgets a Good Idea?” I think there are three reasons for thinking that they are.
Firstly the research thus far says so unequivocally:
“… the majority of budget‐holders and carers reported positive impacts of the personal health budget – on their health and well‐being, health care and other support arrangements and for other family members. Effect on their use of health services or changes in relationships with health professionals were less likely to be reported. Most interviewees appreciated the increased choice, control and flexibility of the personal health budget.”
(http://www.thinklocalactpersonal.org.uk/News/PersonalisationNewsItem/?cid=9406)
Secondly the experience in Social Care where personal budgets are well established and growing strongly is that they change the relationships between people who need support and service providers in really fundamental ways. Rather than being a gift from the powerful to the powerless, services can be shaped and delivered in ways that support people to live ordinary lives. Personal budget holders have developed a strong, clear and challenging voice and the means to empower themselves. This has pushed professionals and services to engage in a different way and on different terms.
Thirdly and perhaps most importantly they change the terms of the user involvement debate onto ground where what patients and citizens think and need are the determining factors.
Therefore it is not essentially a question about efficacy and efficiency but one of rights and citizenship. It cannot be answered by staying within the comforting embrace of the NHS but needs us to travel onto patients and carers territory to see what the question looks like from the other side. To answer such a question will need a much more equal dialogue between professionals and the people they serve and a broader understanding about who actually owns the NHS budget in the first place.
Brian Cox 