Expert Patient Programme

Nearly two years ago I wrote to the Secretary of State for Health asking why diverticular disease (DD) was not included with all the other diseases in the National Service Framework (NSF) for long term conditions or the NSF for older people or the ‘Expert Patient’ initiative. The government thought that both NSFs should ensure that all older people receive improved services based around their own individual needs, and in this way DD may well be covered but not specifically. 

The Expert Patient initiative is a new approach to the management of chronic diseases. The Minister of State seemed quite sure that people with DD would benefit from this programme. When an opportunity arose at the end of last year, I joined an Expert Patient Programme course which was a pilot for my local NHS Trust.

The course was run by trained volunteers who had long term conditions themselves so that everybody participated in a learning ethos. Many different health conditions were represented with an age range favouring the retired and of course, those people available in the afternoons. Long term diseases produce a cycle of health problems called the Symptom-Pain cycle which was emphasised in the 6 sessions of two and a half hours each. The course gave an awareness of where on the cycle you could find yourself and the techniques used to break it to benefit your own physical and mental wellbeing.  

The methods taught to help these health problems included:- relaxation methods, pain distraction techniques, problem solving, types of exercise, improved breathing, nutrition, communications, treatment decisions, effective use of information sources and the health care system.

In every session we were asked to make an action plan and a week later discuss with the group if we had achieved our plan. Over the programme we changed in attitude from “I don’t think I can” to “I will try because I’m sure I can” We noticed a difference in each other in confidence and positive attitude which was also noted by friends and family.

People with DD are often told that nothing can be done for them, they must learn to live with it, or it is all in the mind. This course shows that something can be done to help you live with DD. It accepts that pain and other debilitating symptoms are very real, and shows how physical and mental techniques might be used to reduce the burden of the disease. For more information on the Expert Patient Programme ask your GP.

Note This article appeared in “Diverticular Digest”Issue 2, Summer 2004, from the charity Incontact.

© 2004 M Griffiths

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