MGA News Winter 2005

I am now an ‘Expert Patient’ and before doctors up and down the land groan, or even worse, it doesn’t mean quite what it sounds it might. I have not been turned into that monster that knows better than the doctors, rather the reverse. I have learned what I can do to make their job easier and my life better. I think that the name of the scheme is unfortunate, but I am at a loss to think of an alternative.

The Expert Patient Programme is a Government initiative, run by local Primary Health Care Trusts and aimed at the 17 million people in the UK living with chronic conditions. It takes the form of a course consisting of six, two and a half hour sessions. Designed to help patients live with chronic conditions, it is claimed that amongst patients who have been on the programme, there has been a 10% reduction in calls on GPs and other NHS services. Amongst my fellow ‘Experts’ were folk with MS, ME, Diabetes, Asthma and Heart conditions. There was also another myasthenic, which must be a record for such a small gathering. It is amazing how many things we all have in common.

On the day of the first session Mrs Gravis took me to our local big town and dropped me off at the health centre which was accommodating the course. It was a bit like being taken to school for the first time, in I went clutching my satchel, well brief case actually. Sally, our course leader, welcomed me warmly and everyone else looked just as apprehensive as I felt. We needn’t have worried, the course has been well thought out and Sally and her assistant had been well trained to deal with the likes of Gravis. After introducing ourselves and our conditions, we were given a very useful book, ‘Self-Management of Health Conditions’. A title which, whilst a bit dry, does describe what the programme is all about.

We were all encouraged to take from the course those things that we could use. Each week we set ourselves a goal, these had to be realistic and achievable. Two of my fellow ‘experts’ with heart conditions, who needed regular gentle exercise, set out to walk a minimum distance each day. I on the other hand, restricted in my capacity to walk far, set myself tasks such as clearing the four hundred odd messages from my Email in-box, which will explain why friends suddenly heard from me after so long.

The sessions were not morbid exchanges of miseries, we all had problems, but one of us always seemed to have an answer. Our mentors helped us to turn our experiences into ways of taking control and overcoming a problem.

What did I get out of the programme? I have learned to try and make a realistic plan for the week and to accept that someone or something will inevitably blow me off course; but that I can always find an alternative. I hope that I am better at communicating with all the health professionals that care for me and hence save them time. I learned relaxation techniques; these are eyed with suspicion by Mrs Gravis who considers that I am already too relaxed at the best of times.

All the aspects covered by the course are plain common sense of the, “Oh why didn’t I think of that” kind . I was pleased to find that many of the ideas have featured in my chronicles, but oh how useful they would have been if I had known them when I was first diagnosed and coming to terms with MG. Whilst the course was of great benefit to an old lag like me, it really should be top of the list for someone newly diagnosed. It will save them hours of depression and ‘reinventing the wheel’.

Note:
Courses are run by Primary Care Trusts (PCT) and information can be obtained from them. The telephone number of your local PCT will be in the phone book. You should also be able get information from your GP’s surgery.

Patients with chronic conditions, of which MG is one, may apply directly for a place on the programme, no GP referral is required.

MGA NEWS Winter 2005

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