Father's High Court campaign to allow him to die at home with dignity

Phil Newby with wife Charlotte and their teenage daughters.
Phil Newby
Bonnie Christian8 July 2019

Phil Newby has been thinking about how to die. Three of his options are "really bleak" and the fourth - to die on his own terms with dignity - is illegal in the UK.

The father-of-two was diagnosed five years ago with motor neurone disease and now, at 48-years-old, he is unable to walk or use his hands and lower arms.

Unusually for someone who has lived with MND for this long, he still has his speech, and he is using it to challenge the UK's assisted dying laws in front of a High Court judge.

His campaign came about over Christmas after a drop in his health and autonomy prompted him to start seriously mapping out his end of life options.

“There's more than one option and they are all really bleak,” he told the Standard.

Phil Newby was diagnosed with MND five years ago and is now nearly incapacitated while his mind remains fully in tact.
Phil Newby

Mr Newby, who is based in Rutland, East Midlands, can take his own life at home, following the lead of around 300 terminally ill people in the UK who do this every year.

But he would have to consider the trauma for his family, the risk of incriminating them - they can be jailed for up to 14 years if found to have assisted him - the risk of botching it, and having to bring his death forward so he is still well enough to carry out the act.

He could alternatively watch his body deteriorate as his mind stays fully in tact and “wait for nature to take its course”.

Or, he could spend £12,000 and travel far from home to Switzerland where an assisted “compassionate” death is legal.

His fourth option would be to change the laws in England and Wales around assisted dying, which is outlawed by the Suicide Act 1961.

“Our laws are at best antiquated,” Mr Newby said. “They are almost definitely cruel and... if judges keep not looking at this issue with great care I think it will border on being callous.”

Dignitas: the clinic in Switzerland
AFP/Getty Images

Assisted dying laws of varying models already exist in Canada, nine states in the USA, Switzerland, Belgium, The Netherlands and most recently in the Australian state of Victoria.

To change the UK laws Mr Newby hopes to raise at least £20,000 through CrowdJustice to take a unique legal approach that follows a similar one taken in Canada.

Over several days, experts from across the globe would give their opinion in support of assisted dying laws and the government could potentially have experts arguing against them.

Once all views have been represented and tested, a High Court judge can make a decision on whether or not the laws should be changed based on the evidence.

Mr Newby has almost raised his minimum target in just days of launching his campaign and said he has not been surprised at the support he has already received.

The latest research from Populus, who interviewed 5,695 adults during March 2019, found 84 per cent of people were in support of assisted dying.

“I'm not surprised, this issue affects so many people, it affects the families of those that take their life early,” he said.

“Every two weeks, one Briton goes to Switzerland, where we outsource our dying to a foreign country. And it's only the people with the means to be able to do that who can do that.

“This is a really important moral and ethical argument and we shouldn't outsource it to Switzerland, we are a great nation with a great legal system.”

Mr Newby’s daughters were aged 9 and 11 when he was diagnosed and they are now 14 and 16-years-old.

“They’ve watched me deteriorate over five years and they get (what’s happening),” he said when asked about discussions over his end of life options with his family.

“My disease is progressing, thankfully, relatively slowly.

“I'm now incapacitated but it took five years and I'm unusual in that its not absolutely common for people to keep their voice and the ability to swallow.

“What this gives me is a platform. I have the power of speech and I would like to use that power of speech on behalf of people like me.

“Some people with MND might disagree with me and that's fine but all I'm after is a choice.”

Once Mr Newby has raised the amount of money he needs a preliminary hearing can be held in which a High Court date will be set before a judge.

For confidential support, call the Samaritans on 116123, visit a local Samaritans branch or see www.samaritans.org

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