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Rutland man who suffers from Motor Neurone Disease launches High Court appeal to legalise assisted dying

Just over five years ago, Phil Newby’s life was turned upside down when he was diagnosed with Motor Neurone Disease.

A fit and healthy man, dad to two daughters and loving husband to Charlotte; at just 43 he was faced with a life-changing illness that sees the muscles of sufferers waste away.

It eventually leads to the sufferer dying and while Phil is adamant he “isn’t going anywhere soon”, the diagnosis started him thinking about his options when the time comes.

Phil Newby
Phil Newby

Through a Crowd Justice fundraising campaign, Phil has been able to submit his legal claim to the High Court to get the law changed on assisted dying for anyone who has a progressive degenerative condition which is life-shortening and which will ultimately lead to death.

He believes this would end a lot of ‘suffering and anguish’ for terminally ill people, like himself.

“I’ve started to think about my future more seriously and the options that may be accessible to me,” Phil told the Mercury on Tuesday.

“I’m not arguing that people should do it [assisted dying] and it’s not a personal crusade to end my life,” said Phil.

“But a lot of people in my position don’t have a voice which is why I got this campaign going.

“We don’t have the right to end our lives in a dignified way.”

Phil’s journey began in 2013 when he started to notice muscle twitching.

“In 2013, I started to notice some muscle twitching which I put down to stress.

“Nine months later, after on and off tests, they diagnosed me with Motor Neurone Disease at Addenbrooke’s Hospital in May 2014.

“We came back from hospital and then an hour later, we had to go and pick up our children from primary school.”

The initial diagnosis was a “body blow” to Phil and his wife Charlotte.

“It was a real bolt from the blue. You just never expect to hear the worst news.”

Although the diagnosis was initially a shock, Phil has continued to live life as normally as possible and “thankfully” the progress has been slow.

“The last five years have been a real mix of ups and downs.

“We’ve done some incredible things and been through some horrible things too,” Phil says.

But as his illness has worsened over the five years since his diagnosis, Phil has been forced to face a bleak future.

He can no longer walk or move his lower arms or hands and is now at an advanced stage of the disease. He suffers from fatigue and regular muscle spasms and other issues associated with the amount of medication he’s on, such as skin problems. He has five health appointments this week alone.

He cannot do ordinary day-t0-day tasks like dressing or cooking.

There is no cure and eventually, Phil will need 24-hour care for everything.

“The indignity of what I’m suffering from has really set in and I am starting to face reality,” Phil says.

“What I want is a choice. The first option is that I let my muscles relentlessly waste away and I would lose all control of my body and eventually die.

“I could also break the law and take my own life but I can’t use my hands so I would need assistance, potentially incriminating a loved one.

“I could also travel to a clinic abroad for a compassionate death but that would mean having to leave my home, my family, my friends, my county and my country.

“I would have to travel when I was fit which would mean I would miss out on so much happening with my family and friends who are very precious to me.”

In England, Wales and Northern Ireland, assisting a suicide is a crime and those convicted could face a jail term of up to 14 years.

Scotland has no specific crime of assisting a suicide but it is possible that helping a person to die could lead to a prosecution for culpable homicide.

A number of states in the USA including Washington, Oregon and California have legislated to allow assisted death as have the likes of Canada and Switzerland.

About 350 Britons have travelled to Switzerland to end their life at the Dignitas clinic near Zurich.

Phil believes that the current law in the UK against assisted dying is infringing his human rights, and in particular, Article Two of the European Convention of Human Rights, which is the right to life.

He believes that by forcing him to travel to a clinic abroad or take his own life, this violates the state’s obligation to protect life.

He admits his High Court action is partly prompted by feeling angry at the outcomes ofNoel Conway, who lost a similar case in the Supreme Court in November; and Geoff Whaley, who petitioned MPs for a change in the law before taking his own life at the Dignitas clinic in Switzerland in February. Both Mr Conway and Mr Whaley suffered from Motor Neurone Disease.

Phil with his wife Charlotte
Phil with his wife Charlotte

“At the moment, the debates on assisted dying are mainly limited to the media - television, the radio and newspapers.

“We want the evidence for and against assisted dying to be heard in the High Court.

“That means witnesses and evidence to be examined and cross-examined. For judges to decide, not politicians.

“I think as a country we should be smarter.

“If there’s a problem with the law, the law should fix it.

“We’ve got one of the most sophisticated legal systems around that is also the envy of the world.

“Surely we can come up with a safe and effective assisted dying law.”

Phil, who is supported by Charlotte in his campaign, has already raised £26,000 of the initial £30,000 target in just five days but further fundraising down the line is likely to be needed. He has been staggered and heartened by the support in equal measure.

Donations have rolled in from as far away as Australia.

“Some of the comments are just heartbreaking,” he said.

“Most of the pledges have come from people giving small donations of £5 or £10 and there have been some bigger ones too.”

That is just the start though.

Ten boxes of evidence were sent to the High Court this week by Phil’s team of lawyers and Phil hopes there will be an oral hearing in the Autumn.

If it progresses, the case will go before High Court judges next year, which Phil said would be “seismic” in British legal history.

Phil, who is half French and originally from Horsham, worked for Thomas Cook in Peterborough and most recently set up Green Ventures, an environmental consultancy.

Along with his wife, Charlotte, 49, from Leicestershire, they lived in Stamford for 10 years but 12 years ago moved to be near Rutland Water.

They also have two teenage daughters, aged 14 and 16.

Phil and Charlotte will also meet Stamford MP Nick Boles, who is also leading a push to change the law on assisted dying, in the coming weeks.

n To donate, to Phil’s campaign, visit www.crowdjustice.com/case/right-to-die-test-case/.

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