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Despite the bad publicity our health services have attracted in recent times, I can say with certainty that, faced with life-threatening illnesses, my hospital care was professional and assured. As I had to spend many months in rehabilitation units, staffed by people with a wealth of experience, the prospect of trying to survive with my subsequent disability without this support was extremely frightening.

I was lucky; part of my rehabilitation was a course in managing my own condition – skin and bladder care, bowel management, exercise regimes… a fellow patient, alarmed by the list of things that he would have to monitor, joked that his best option was to stay in hospital for the rest of his life. Living without daily nursing care and regular input from therapists, was still truly scary.

This course taught me that I had to take responsibility for my own health. I had to negotiate for overstretched community resources, district nurses, therapists and GPs. I realised that if they had confidence in my judgment as  to when I needed their help, I was more likely to get a quick, appropriate response. And that would mean that I would stay as healthy as possible, for as long as possible. I became an expert in my own condition, an active member of my care team.

Realising that huge resources are devoted to long-term conditions and chronic diseases, which often follow people from their middle years into old age, there is a movement within the NHS to empower more patients, recognising that they and professionals have their own areas of expertise, and that they need to work together. If it works, this will enable more people to stay healthier, which will in turn, reduce hospital admissions and reduce the strain on community services.


The Expert Patients Programme is bringing this approach to many people who live with one or more long-term conditions, from cancer and diabetes through to multiple sclerosis and ME.

Next week, I will talk about the people I’ve met who use the Expert Patients Programme, and what they feel they have gained from it.