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Providing information, education, and training to build knowledge, develop skills, and change attitudes that will lead to increased independence, productivity, self determination, integration and inclusion (IPSII) for people with developmental disabilities and their families.

Man Fights Medical Guidelines For His Life
February 23, 2004

LANCASTER, ENGLAND--Les Burke is fighting for his very existence.

Burke, 44, has cerebellar ataxia, a condition that doctors say will get worse as he ages. At some point, he will not be able to talk or move, but he will still be able to see, hear, and understand everything that is going on around him.

It's not his medical or physical condition that he fears most, however.

Burke is afraid that he won't be able to tell doctors he wants to live.

"That's what scares me, it really does scare me," Burke told BBC News Online.

The guidelines passed in 2002 by the General Medical Council allow doctors to pull feeding tubes from patients whose treatment is considered "too burdensome."

Burke, a disability rights advocate who co-founded the Lancaster Disablement Information Support Center, is seeking a judicial review of those guidelines in the High Court this Thursday.

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

"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."

"For me patient consent is of the utmost importance."

"Patient fights for food and fluid" (BBC News Online)
"Why I fear for my future" (BBC News Online)
Disablement Information Support Centre


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