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Webwatch
October 2008
How one copes with long term chronic illness depends on a lot of factors, one's personality, personal situation, support of family, severity of the illness etc. but a new programme is being wheeled out to help. It originated in the USA at Stanford University, but in the UK it is known as the Expert Patient's Programme (EPP). See www.expertpatients.co.uk.
As their website says "The Expert Patients Programme is a self-management course giving people the confidence, skills and knowledge to manage their condition better and be more in control of their lives." What it is not is a set of people "expert" in specific illness taking the place of properly qualified and experienced doctors. It does not give any advice about the nuts and bolts of the illness, that is the role of medical people, it does focus on coping with life, devising strategies to cope with problems and improving how one feels everyday. Rhonda was invited to become a tutor on the programme, the first stage of which was to attend the course as a fellow sufferer. One thing she learnt, was not to use the term "sufferer"! Having done that, she completed the course to become an EPP tutor and this week has concluded the first of courses to help people.
There are some other websites in a similar vein, e.g "How to Live Successfully with Chronic Illness" at www.streetdirectory.com/travel_guide/26434/medical_conditions/live_successfully_with_chronic_illness.html. This gives advice such as "Refuse to give into bitterness" but the EPP differs in helping people to actually achieve such aims.
An article on the BMJ website (jech.bmj.com/cgi/content/abstract/62/4/361) reports the conclusion that the EPP is "cost effective". This approach is similar to that used by NICE, i.e. the idea of Quality-adjusted life years, QALYs, (en.wikipedia.org/wiki/Quality-adjusted_life_years ) a measure aimed at calculating the benefit of a medical intervention. This approach could be described as a government view, i.e. is the money put in effective? Most patients, especially those with long term illness, are more interested in "does it work" rather than the cost. Judging by the new Thank You card on our mantelpiece, it does. In spades.
The BMA has a discussion paper concerning the EPP at www.bma.org.uk/ap.nsf/content/epp. In their conclusion, they say "The EPP is a key component of the strategy to enable patients to self-manage their conditions. This research highlights the fact that EPP courses have major potential to empower patients and reduce demand on healthcare services. We have also, however, identified areas that we believe require further research and analysis in order for the EPP to deliver results over the next few years." On this webpage, don't miss the links on the left handside.
The BBC had a programme on Radio 4 about the EPP, "Trisha MacNair investigates the new NHS Expert Patient Programme.". On www.bbc.co.uk/radio4/science/expertpatient.shtml there is a link to the full programme transcript.
Happy surfing.
Howard
Footnote:-
Following recent reports of IVIg shortages etc. The National Demand Management
Programme for Immunoglobulin now have full information at www.ivig.nhs.uk