Whose care is it anyway?
Long before the current financial crisis hit the NHS, Derek Wanless in his ground breaking, and still highly relevant, reports on the future funding of health and social care articulated the impact of public engagement with health and treatment on the likely size of future healthcare costs. Back in 2002 he estimated that between 2002/3 and 2022/3 the gap between a “fully engaged “and a “slow uptake” scenario for the development of the NHS would amount to £30 billion or 16% difference in the funding requirements for the formal system of care. Even in times of relative plenty Wanless argued that a very different approach to delivering health care was essential if we were continue to be able to afford a high quality health service in this country. How much more so in times of austerity when it appears unlikely that we can afford even the most optimistic requirements which Wanless put forward for future funding.
At the heart of public engagement must be a genuine commitment to empower the public to look after their own health and to treat those who become “patients” in the formal care system as genuine partners in and co-producers of their care. In doing so we should aim at a goal of increasing “health literacy” so as to enhance the knowledge and motivation which people have to look after their own health and to maximise the benefits of any treatment they receive.
Just before Easter I was lucky to join a conference organised by Oxford University’s Health Experience Institute considering health literacy. It made me think hard again about this question which has been relevant to many of things I have done in my career, most notably in the time I spent at NHS Direct. It should be an issue at the very top of debate about health policy making and delivery but in reality, but despite lots of small scale good practice, it has received spasmodic attention and follow through.
There are lots of reasons why this is the case but the most fundamental one, I believe, is a question of structure and beliefs. We call our system the National Health Service but we organise and deliver it as the National Illness Service. We can talk about self-care but we rarely organise ourselves to support it in any meaningful manner.
If we are to take the issue of health literacy seriously I think there are a number of things we need to do.
First we need to reprioritise spending on public health and self-care. I for one supported the idea of separating public health from the NHS, integrating it in local Government with control of some of the wider determinants of health and making a long term commitment to improving health and health literacy which was separate from the arguments about NHS funding. It has been sad to see this vision undermined by the level of reductions in public health budgets which I fear will have long term consequences for health outcomes and increased pressure on the NHS.
There is also an argument for investment in the very best of health information and advice, recognising that self-care and self-management need to be supported. Yet, despite the rhetoric, it is always these resources which are the first to be cut when budgets are squeezed. NHS Direct was much more than a means of managing demand for urgent care and represented a world class resource for supporting self-care. It was a retrograde step when it was closed.
Second we need to move away from the puritan and judgemental rhetoric which has characterised too much of our health promotion activity and shift to a greater focus on individual wellbeing and motivation. Individuals rarely see health as an abstract concept unconnected with the wider circumstances of their lives. As we know very clearly in mental health, jobs, housing and relationships matter as much as do formal health care interventions in improving health and wellbeing. The crucial ingredient in successful health promotion is individual agency. If we just lecture people about their lifestyles we will be doomed to failure. However if we work with people in ways which build trust and tap into their own motivations to change then we have a chance. From my experience I believe that voluntary sector and peer organisations, with their traditions around more holistic and creative models of working, have much to offer. I loved hearing about the dance class at risk for older people which aims both to boost wellbeing and reduce the risk of falls.
The third thing is to restructure professional education to put a much greater emphasis on the skills and shared decision making and co-production. There is clear evidence that shared decision making can improve concordance with treatment (it remains staggering that between 30-50% of prescribed medicines are not taken), improve health outcomes and many cases can lead to the choice of less expensive interventions. The skills of shared decision making are not necessarily the traditional skills of clinical consultation. It has been exciting working with the Dartmouth Center for Health Care Delivery Science on the use of measurement and delivery tools to support shared decision making in CAMHS services. Amongst other things, Dartmouth’s evidence suggests a marked difference between the views of patients in whether they have been involved in decisions about their care from those of the clinicians treating them.
The final thing is to think through how we structure the delivery of care in ways which put patients and not the system at the centre. The ever increasingly transactional nature of services and greater fragmentation of care works against this. We need, alongside patients and families, to think through pathways and to understand how we can support patient engagement and health literacy at each stage, not just in the consulting room, but through all of our interactions and communications. A key point would be the effort, both practical and psychological, we invest at the point of diagnosis. Given that long term conditions will be at the centre of the demand for healthcare this could be time well spent if our objective is to help patients manage with confidence and skill their own conditions and reduce demand on formal services.
This is an urgent agenda. We are a long away from Derek Wanless’ “full engaged” scenario and the gap between what we need to be and where we are is getting wider. This theme is not lacking from the Five Year Forward View but needs rapidly to come much closer to the fore. If it does n’t our chances, as his report 14 years ago highlighted, of delivering a sustainable NHS will be that much harder.