All over the UK, NHS organisations are setting up projects to encourage people to take an active role in maintaining their health and managing their illnesses.
Projects like ‘Keep Well’ in Scotland invite people aged 45-64 who live in deprived areas to a health check. Graduated access projects to encourage people to manage minor illnesses at home include promoting the role of pharmacists, as well as nurse-led services like NHS Direct, NHS 24 and walk-in clinics.
The Expert Patient Programme and other chronic disease self-management projects are designed to help people to manage the symptoms and the effects of chronic illnesses better.
Governments expect that services to support self-care will result not only in improvements in the experience of illness but also in savings. Savings are expected as the burden of managing illness shifts from the NHS to patients, families and the voluntary sector.
The expectations rely on a deficit model that assumes: first, people do not self-care already; second, they are willing and able to do so; and third, families, communities and the informal sector have the capacity to help. But do these assumptions hold up?
The first assumption, that people do not self-care already, does not hold up. Hundreds of studies have shown that people already see themselves as actively caring for their own health. They talk of a range of strategies to manage minor illnesses that include waiting to see what happens, taking more rest and using over-the-counter medications. They ask friends and family for advice and learn what the NHS can and cannot help with from their own and others’ experiences.
When people have long-term conditions, they manage sometimes debilitating symptoms and complex medical regimens in ways that make sense to them. Social roles are important; people sometimes do things that worsen symptoms so they can still do things they have always done, like go to work or help their daughter.
Living with a debilitating and painful condition affects the way that people think of themselves and are thought of by others. Judgements are often made about whether someone is ‘trying their best’ or ‘trying it on’. People often feel they have to demonstrate to other people, including healthcare staff, that they are doing all they can and are not to blame for their illness.
The second assumption, that people are willing and able to self-care, probably holds up. A recent Department of Health survey showed that nine out of 10 people were interested in being more active self-carers and 75% said that, with guidance from a health professional, they would feel more confident about taking care of their health.
On the other hand, we know from studies of the Expert Patient Programme and other research that many people do not take up the offer of self-care advice, preferring to rely on health professionals.
We do not know whether the third assumption, that families, communities and the informal sector have the capacity to help support self-care, holds up. We know that the vast majority of care is already provided by families and that voluntary sector bodies play an enormously important role as advocates and providers of services.
But we don’t know if future families will be able to continue this role or if more people will be willing to work in the voluntary sector.
So, what does this mean to nurses? One thing is sure: a deficit model of self-care is not tenable with the knowledge that people already see themselves as responsible for their own health. A positive model, which recognises that people already self-care but that some might be able to do it better, would mean not trying to get people to self-care more but supporting them to self-care differently if they need to.
For the primary care nurse, it means asking people what they do if they are breathless with their asthma and advising alternative strategies. It means checking how someone manages when they feel weepy and down with arthritis pain, and helping to identify strategies that might work. It means working with people rather working on them. This approach, putting people at the heart of healthcare delivery, is likely to be more effective in the long run.
Sally Wyke, Alliance for Self Care Research, Department of Nursing and Midwifery, University of Stirling
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