Two recent Community Care articles welcomed the
development of the expert patient programme (Perspectives and
“Patient heal thyself”, 15 July). The writers of each article saw
some of the programme’s benefits as encouraging people with
long-term conditions to be healthier, and to have a more positive
outlook on life.
Having managed to contract three conditions in 13 years, namely
bowel cancer, tetraplegia and type II diabetes (lucky me!), I’ve
gradually begun to appreciate the advantages, if not necessities,
of being an expert in my own disabilities and illnesses.
Wheelchair users have a number of occupational hazards that need
monitoring, from the obvious such as pressure sores, through to
progressive lowering of bone density and kidney failure, as well as
the constant risk of urinary tract infections.
People with type II diabetes need to consider early signs of
circulatory problems and glaucoma, among others. Bowel cancer
survivors, like people with diabetes, need to control their diets,
as well as needing to watch for symptoms of possible recurrence.
I decided, from the start, to find out as much about my conditions
as possible, thinking that no one would have my best interests at
heart more than I would. If I learned the warning signs, no one
else would be better placed to notice changes. This has meant that
I’ve been able to spot potential difficulties and deal with them
before they have become serious problems, and catch infections
before they become life-threatening.
As a result, I’ve been much healthier than I would have been (and
saved the health service a fortune in in-patient stays), and much
more confident in dealing with difficulties – with the help of my
carers and the community services. In turn, this has meant that
I’ve been able to be much more active, which has boosted my sense
of well-being and purpose. Staying as healthy as you can has its
I recognise the value of peer-led education, which is the basis of
the expert patient programme: my only problem is that I’m so busy I
haven’t got time to become involved in it!