12 Mar 2012

Locked-in syndrome: being alive is ‘not enough’

As a judge rules that Tony Nicklinson can pursue his case for the right to die in the legal system, his wife tells of how their life together has been “destroyed”.

Mr Nicklinson, who wants a doctor to “lawfully” be able to end his life, will be able to purse his case through the courts following a decision at the high court in London.

The 57-year-old father of two from Wiltshire has been paralysed with locked-in syndrome since suffering a stroke in 2005.

The Ministry of Justice argues that agreeing on such a ruling would mark a fundamental change in the law.

All these people who say, he’s alive and that should be enough – it’s not. I think a lot of these people, if they could live Tony’s life for a couple of weeks, a lot of them would change their mind. Jane Nicklinson

But Mr Justice Charles ruled that Mr Nicklinson can pursue his case through the courts, and it will now be heard at a full hearing where evidence will be presented.

Mr Nicklinson’s wife Jane, said that since her husband’s strike, their life “was destroyed”.

“We had a lovely life – lots of friends, good social life, Tony enjoyed his work – and we had to leave it all behind,” she said. “It’s like a cloud hanging over you all the time.”

The ‘right to die’

Speaking after the verdict, Mr Nicklinson said he “resented” those people who say he should not have the right to die.

“All these people who say, he’s alive and that should be enough – it’s not,” said Mrs Nicklinson.

“I think a lot of these people, if they could live Tony’s life for a couple of weeks, a lot of them would change their mind.

“I’ve gone from being his wife really, to being his carer. I have to do everything for him. It’s a completely different role. It’s not like having a progressive illness, it all changed overnight.”

Mr Nicklinson described his situation as being “resigned to a miserable existence”.

“Now my wife and I live on benefits. I am totally dependent on others for everything,” he said. “I go out once a year to the dentist and I don’t see people who come to see us. This is because I can’t speak and I get more upset just sitting there unable to contribute to the conversation.”

‘Delighted’ by verdict

However he said he was “delighted” that issues surrounding assisted dying will be presented in court.

“It’s no longer acceptable for 21st century medicine to be governed by 20th century attitudes to death,” he said.

“Politicians and others can hardly complain with the courts providing the forum for debate if the politicians continue to ignore one of the most important topics facing our society today.”