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In some ways, partial victory I won is hollow
David Hogg OUTSIDE the courtroom Leslie Burke's solicitors were putting a positive spin on yesterday's Appeal Court judgment.
The case would continue to be fought in the Lords, they vowed, and Mr Burke had achieved much of what he asked for anyway, they said.
But inside, after the decision was handed down, the only individual in the court who is ever likely to be affected by its detail was feeling desperately let down by the legal system.
Although he initially tried to put a brave face on things Mr Burke later admitted: "I know I said that it was a partial victory but in some ways that victory is hollow.
"In the end it made no difference. For those people who feel like I do there was no good news at all today."
Mr Burke accepts the judgment but still believes doctors and nurses could remove his food and water once he becomes bed-bound and unable to communicate.
"In theory my wishes will be carried out but we all know what happens in practice," he said. "The NHS is chronically underfunded. The resources are stretched and I worry about the decisions that will have to be made. The difference between theory and reality is vast."
Doctors will continue to be able to remove food and water if they think it is in a patient's best interests thanks to the ruling.
Mr Burke argued: "A doctor is not allowed to refuse me food and water while I remain competent. But what is the definition of competent? When do I become an incompetent person? Is it when I am no longer able to communicate?
"When that happens then the power goes back to the doctors and not the patients.
"I have come to realise that there are quite a few people who feel the same way I do. Not everyone wants to be put down. Not everyone wants their life to be ended prematurely."
The symptoms of Mr Burke's condition first became apparent during early childhood. He could not run along railway lines or climb trees. He developed a "drunken" gait after he left school.
In the early 1980s his condition became problematic. He had worked at the Co-op near the family home in Lancaster.
"My manager used to think that I was on drugs," he recalled.
Mr Burke moved on to Royal Mail but it was not long before he was asked to obtain a diagnosis. And so, with his younger brother Robert, who also suffers from ataxia, he attended a hospital in Preston.
He discovered the National Ataxia Group soon after and it was then he found out how serious his condition was.
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Weather for Yorkshire
Saturday 26 May 2012
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Temperature: 8 C to 21 C
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