Debbie Purdy: A true fighter to the end

FOR Debbie Purdy, it had been a long time coming.

For three long years she had battled her way through the courts and campaigned tirelessly in the media to win what she felt passionately to be one of her most basic human rights – the right to a dignified death.

Finally, in what was seen as a watershed moment for UK law, Britain’s chief prosecutor Keir Starmer sat down at a Press conference in February 2010 to set out the circumstances in which people can help a loved one to die without facing jail.

The fact he had been forced to do so was largely owing to the efforts of Ms Purdy, who despite suffering from increasingly debilitating Multiple Sclerosis (MS), took her demand for clarity in the law to the very highest court in the land, the House of Lords, in 2009 and won.

But talking to The Yorkshire Post before that key announcement, sitting in the smart terraced house in Bradford she shared with her husband, the talented Cuban violinist and jazz musician Omar Puente, it quickly became clear that it was not just the right to die for which she was fighting. Ms Purdy was also fighting for her life.

“If we change the law to allow assisted dying, I can live longer, ” she had said. “I don’t want to die – I enjoy my life. I don’t want to go to the Dignitas clinic or wherever in Switzerland and die.

“Changing the law is like having a safety net. If life became so painful and so unbearable, it would mean that I could do something about it... and that I could go past the point when I was able to do it myself.”

Though MS is always incurable and always degenerative, the speed and scale of deterioration can vary dramatically.

Ms Purdy was diagnosed in 1995 – just weeks after meeting her future husband – after finding her feet felt strangely heavy when she was out dancing.

Eventually, by 2001, she had to use a wheelchair and later needed a motorised chair owing to the weakness of her arms. Her eyesight, too, began to deteriorate.

None of this prevented her being utterly engaging company. She was warm and opinionated, blessed with a wicked sense of humour and an astonishing refusal to be cowed or demoralised by her illness.

Of her disease, she said: “The only thing doctors can tell you about MS is that it’s for life – it’s like a puppy! You’re not going to get rid of it.

“But no-one can tell you how it’s going to develop.

“So at the moment I enjoy my life, but I don’t know at what point the pain or the suffering will be too much.

“I don’t have any choice with MS. If I could choose not to have MS, believe me I would – but I’ve got it. So it’s not heroism to deal with it. And it’s not bravery to go to court. I want to live, therefore I need to have the clarity.”

The announcement from the Crown prosecutors followed a string of high-profile cases which had put assisted suicide firmly in the public consciousness, including that of Paul Lamb, from Leeds, who was left paralysed after a 1990 road accident.

Ms Purdy believed the ongoing public debate surrounding such cases had been a positive thing.

“We don’t talk about death in this country, and yet it’s a part of living,” she said.

“In some ways it’s the last great taboo. There’s this idea we don’t discuss things like that.”

Concerned about the consequences for her husband if he helped her travel to Switzerland to end her life, she mounted a campaign to force prosecutors to clarify how they intend to deal with such cases.

“If I lose the ability to do these things myself, somebody has to help me,” she said.

“I couldn’t have it be him. I would rather die early than have him face the possibility of going to jail.”

With the support of her husband, she began her campaign in 2008, launching a High Court bid to force the Crown Prosecution Service to clarify exactly what actions would lead to a friend or relative being charged under the 1961 Suicide Act.

Despite losing this and a subsequent Court of Appeal case, she achieved a legal victory in 2009 when she forced the Department for Public Prosecutions to clarify assisted suicide circumstances, although the law remained unchanged.

The following year, Director for Public Prosecutions Keir Starmer outlined 16 factors which would tend to lead to prosecution of those who helped with a suicide.

Public opinion appeared to be on her side – polls showed overwhelming support for allowing certain forms of assisted suicide.

But despite securing such an important breakthrough, Ms Purdy was determined that her fight would go on. “We need a proper law for people in this country,” she said. “Keir can’t change the law, and neither should he try to – he’s an unelected official. It should only be changed as a result of our elected leadership.”

She was adamant that a new law would allow proper safeguards to be put in place, while finally putting to bed what she said at the time was her biggest fear.

“I’m terrified the Swiss will close the door on foreigners,” she admitted.

“That would be...” – for the first time her voice had cracked. “There are so many cases where people have attempted suicide (alone) and failed, and ended up in a worse state after. So I don’t know exactly what I would do, but my life would probably be foreshortened.

“If they ever announced they were going to do that, I think I’d probably just go to Switzerland.”

Even if that meant going when she still might have a reasonable life ahead of her?

She had nodded, admitting the thought filled her with fear.

“I’m not ready to die. You know, Omar had his first CD come out last year, and he’s touring with (jazz star) Courtney Pine and other people I’ve been in awe of for 20-odd years.

“But I’m more frightened of not having the safety net there of the Swiss allowing us to use their country. And the thing is, it wouldn’t matter if only we changed the law in this country. So I’ve got to get it changed.”

The following April saw the publication of her book, It’s Not Because I Want to Die, telling the story of her life with Mr Puente and MS, and her long battle through the courts.

Writing it, she said, had been a “cathartic” process.

“It helps you order your thoughts and feel more positive about things. The things that frighten you when you are diagnosed tend to be things like continence, pain, sex, mobility – the big four.

“A lot of having MS is fear, and these are difficult things to admit. But actually that’s what’s cathartic about it. It pushes you to think about things. It helps you understand what you are.”