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Last Updated: Monday, 23 February, 2004, 17:51 GMT
'Why I fear for my future'
By Paul Burnell
BBC News Online Manchester

Les Burke
Les Burke knows one day he will lose the power of speech and limbs
Les Burke, 44, from Lancaster who has a degenerative brain condition is fighting guidelines to withdraw food and fluid should he deteriorate.

Former postman Mr Burke, who was diagnosed in 1984, knows one day he will lose the power of speech and control of his limbs.

He believes General Medical Council guidelines could see him starve while his mind was still intact.

A disability rights adviser, he is seeking a High Court judicial review.

Quite often because I use a wheelchair I have been spoken over, spoken at and spoken about as if I was not in the room.

There have been many occasions people have done what they thought was in my best interests but have not asked me.

You have two to three weeks if food or hydration is withdrawn. For those two to three weeks my mind will know what is going on.
Les Burke
Doctors believe it would be in my best interests if they withdrew food and fluid when my condition cerebella ataxia deteriorates.

The best way of describing it is that it is similar to multiple sclerosis. Your mind remains but you have no control over your body or speech. Only those who know me very well will be able to understand me.

I have the genetic version and my younger brother Robert who is 43 also has the condition. He was diagnosed at the same time as me in 1984.

There is no cure. There are certain things that can slow it down.

Les Burke at DISC
Les is a founder member of a disability advice centre

The GMC's guidelines seem to encompass everybody saying artificial food and fluid is treatment. If a doctor does not believe I have a good quality of life he could withdraw my treatment (food and hydration.)

It is not treatment - it is a matter of human dignity. We need food and drink.

That is what scares me. It really does scare me. You have two to three weeks if food or hydration is withdrawn. For those two to three weeks my mind will know what is going on.

| enjoy my life. I feel so positive about life at the moment. I want to see my goddaughter grow up.

In 1986 my social worker got six or seven of us together to help other disabled people. The information for people was not in one place.

'Informed consent'

That is how the Disablement Information Support Centre came to be formed in Lancaster.

We give information and advice to other disabled people and those who are associated with them.

I hope the judge is going to decide that the doctors cannot act unless given informed consent.

I am not against doctors or any medical person. At the moment if a person cannot give consent the doctors can withdraw hydration and nutrition anyway.

For me consent is of the utmost importance.





SEE ALSO:
Patient fights for food and fluid
23 Feb 04 |  Lancashire
BMA guidance: The main points
23 Jun 99 |  Health


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