Help me fight for dignity in death

by Phil Newby

Help me fight for dignity in death

by Phil Newby
13
days to go
£47,448
pledged of £55,000 stretch target from 994 pledges
Pledge now

This case is raising funds for its stretch target. Your pledge will be collected within the next 24-48 hours (and it only takes two minutes to pledge!)

Latest: Nov. 19, 2019

High Court judgement and next steps

Dear Friends, Family and Supporters,

I am disappointed to have to tell you that our High Court judgement was handed down today – and that we have not been granted permission for our case to be...

Read more

I’m unable to walk, use my hands or lower arms, but my mental capacity is unchanged. I’m staring down the barrel of an undignified, and drawn-out death because of an out of date, cruel law.

I want the right to decide when my life is no longer bearable and to end it with dignity. My options as they stand are to starve, suffocate, or face the trauma of trying to end my own life. These aren’t options at all.

This isn’t just about me; due to the lack of choice under the current law every year in England 300 British people with terminal illnesses prematurely end their own life. 

I’m bringing a legal case, but accessing the law costs money. So I’m asking for help to establish a humane choice for the end of life. Please contribute whatever you can and share this page. 

We all hope for a happy, fulfilling life, that is not cut short and ends peacefully and relatively painlessly, but I have motor neurone disease (MND).

My family and I know that MND will kill me and will rob me of nearly everything. There is a very good chance I will die suffering, with little dignity, having lost all control of my body but not my mind. 

I’m a lover of life and will continue to strive to stay well, despite the relentless decline in my health and quality of life. I remain determined to see my children grow up and will contribute to our family every day that I can. The future however, is a very scary prospect. 

Worst of all I will have very little choice because of an out of date law.

That’s why I’m campaigning to legalise assisted dying for people like me, so we have the freedom to make a choice.

An overwhelming majority of the public think terminally ill people should have the choice of assisted dying. This case gives us the chance to make a real, positive change. Now is the right time – as a nation we are living longer than ever and more of us will face serious and complex conditions. The UK can’t bury its head in the sand on this issue any longer. 

The ultimate aim of this case is to force the government to address the out of date law governing assisted dying, in the same way many other countries already have.

All I’m asking for is the evidence to be re-examined and ultimately for dying people to have a choice over how they end their life.

 You can help by doing three simple things:

  • Contribute what you can now to help us hit our target. 
  • Share this page with your friends, colleagues, family and on social media.
  • Email or WhatsApp 5 friends now with the link and ask them to read and share my page. 

My Story

My name is Phil Newby. I am of English and French heritage and live in the UK.  I live with my wife and 2 daughters. Though born in the UK, my mother is French.  My first job was working as a buyer’s assistant at Les Galeries Lafayette in Paris. The majority of my family live in La Sologne in rural France. In 2018 I wrote  “Innocent Lives”, a novella about my much-loved grandparents and the little-known heroism of the French Resistance in La Sologne during World War II.

Read a translation of Phil’s legal fight here for French audiences

In 2014, at the age of 43, I was told that I had MND. The diagnosis came out of the blue, as I was fit and healthy. The prognosis was that I would become paralysed bit by bit and could only really expect to live for 2 or 3 years. The only available treatment is a drug that extends life by an average of 12 weeks. At the time our children were 9 and 11 years old and we were enjoying a busy family life. The past 5 years have been very difficult. 

Now, I’m unable to walk, use my hands or lower arms. But I can still talk and my mental capacity is unchanged. 

The future is made much bleaker by the law on assisted dying. 

If my health deteriorates, the current choices are truly desperate. 

I could leave everything I love behind to seek a compassionate death in a foreign country – paying £12,000 to join the more than 480 other people from the UK who have travelled to Switzerland for help to die. I could take the law into my hands and try to take my own life – a traumatic option risking a botched job and potentially incriminating my loved ones if they were deemed to have provided ‘assistance’. Or I could reach a stage where life is so awful that I refuse food to starve to death over many days or weeks.

These aren’t real choices. They mean I’d need to take action to shorten my life before I’m ready to die, but while still physically able. I’d miss out on precious time with my wife and children. Or I’d need to endure protracted suffering, with my loved ones unable to ease my pain – and living with that memory forever.

The UK is falling behind

As it stands the law is callous and cruel. It causes suffering by denying us the choice to act with free will. As a result, we are left in a terrible position with no legal way of securing a peaceful death.

The UK is a sophisticated society. Our legal system is one of the most highly regarded in the world. Our country undoubtedly has the expertise to craft a safe and effective assisted dying law . Assisted dying laws of various types already exist in Canada, the state of Victoria in Australia, nine states in the USA, Switzerland, Belgium and The Netherlands.

I’m fighting this case for everyone who believes in the right to have a dignified and civilised ending for people who are incurably ill and approaching the end of life. Securing the right to be helped to die with medical supervision as I near the end of life will provide great comfort. Rather than shortening my life, I believe that it will help me live the time that remains to the full. 

If you feel the same way, please help change the law.


Legal Background 

What will raising funds help me to achieve?

The case will be run along the lines of the Carter v (Attorney General) Canada case. Over several days, experts from across the globe hope to give  their opinion in support of assisted dying laws.  I hope the government will also have experts arguing against ours. With all views represented and tested, this can demonstrate that it is right to change the law, so that the people who are approaching the end of life have choice and control over how and when they die.

Challenging the law on assisted suicide in this way is expensive and very complicated. If we are going to succeed this time, we need your help.

I have the best legal team that I could possibly have. My lawyers worked for Debbie Purdy, Tony Nicklinson/ Paul Lamb – all up to Supreme Court level and then Omid T – who decided to end his life before his case could go forward. My team consists of Saimo Chahal QC (Hon), Partner at Bindmans LLP. My barristers are Paul Bowen QC of Brick Court Chambers; Adam Wagner of Doughty Street Chambers; and Jenny Macleod of Brick Court Chambers.

We know from experience that the establishment will do all it can to avoid this issue. But that’s no excuse to deny thousands of people choice.


Why do we need another case? 

The debate on this issue keeps being stifled - currently, our laws only represent one view. Noel Conway‘s case was denied a full hearing at the Supreme Court in November 2018. Whilst the decision acknowledged that assisted dying is an ‘issue of transcendent public importance’ the Supreme Court said he could withdraw his ventilator in order to die. Noel commented in response that “…to remove my ventilator and effectively suffocate to death under sedation… to me is not acceptable, and for many other dying people this choice is not available at all.”

Omid T died just before an unfavourable judgment refusing him permission to cross-examine the Government’s witnesses.


What am I arguing for? 

I am arguing for a  law change, for anyone who has a progressive degenerative condition which is life-shortening and which will ultimately lead to death but not without years of pain and suffering. They might have 6 months or less to live or years ahead of them like me with a progressive terminal illness.

I am not on a ventilator and so the only other option for me is to stop eating and drinking - starvation would be a long protracted and ugly death. I don’t want my family to witness this.

My legal team’s strategy is also different, based on years of experience. The government’s argument is that a change in the law would put weak and vulnerable people at risk and or it will lead to the slippery slope. The evidence behind this stance has never been tested. We want to force the Courts to address the ‘proportionality’ argument head-on. We have a fight on our hands and I know it won’t be easy.

Next Steps

There will be several stages involved in this case. The first stage is to prepare the evidence and get a letter out to the government to set out the legal arguments. This will involve the following:

  • Gathering evidence from doctors and international experts about what happens in other countries where some form of assisted dying is legal;
  • Evidence about how to avoid any harm to potentially vulnerable people and how safeguards would operate;
  • Providing the articles of claim setting out the legal case;
  • Considering the reply from the Government
  • Preparing the documents to issue the proceedings;
  • Getting an order so that no one can contact or reveal my children’s identity 
  • In doing all of this we will build on the case already developed for Omid T and confront the legal obstacles set in his path.
  • Then we need to issue the judicial review claim, getting all signed statements and experts reports in, preparing volumes of bundles and legal documents as well as legal authorities.

The letter before claim my lawyers have sent to the government is here.  I will post more legal documents here as the case goes and I will keep you updated. I am determined this time to make it happen with your help!

Recent contributions

Be a promoter

Your share on Facebook could raise £26 for the case

I'll share on Facebook
Update 4

Phil Newby

Nov. 19, 2019

High Court judgement and next steps

Dear Friends, Family and Supporters,

I am disappointed to have to tell you that our High Court judgement was handed down today – and that we have not been granted permission for our case to be heard at court.  This is not the result that I had hoped for, but it is the result that we had been preparing for. We will be fighting on!

I’m told that High Court judges are always reluctant to deal with legal cases that have an ethical dimension and that our legal system is never eager to try new legal approaches. In broad-brush terms this is why the High Court does not wish to consider the evidence for-and-against Assisted Dying.

Last year, when Noel Conway, (a man with Motor Neurone Disease), brought forward his case – he had to take it up to the Court of Appeal, just to get it heard. It looks like we’re going to have to travel the same long road. The higher courts, (Appeal and Supreme), are more likely to see things our way, because they are more strategic in nature and potentially because, whilst in refusing an assisted dying case in 2014, the majority of the 9 Supreme Court judges expressed their dissatisfaction at not having the overall evidence on assisted dying to draw on. In refusing Noel Conway’s case last November, the Supreme Court also restated its position, that it can rule in this area if necessary.

From today we have seven days to consider the judgement, develop our grounds for appeal and to make the submission. I have to protect myself from the government lawyers court costs (which have been capped at £5,000) and raise additional funds to cover the appeal. So far, we have raised a very impressive £43,000, The fundraising target of £55,000 has now become a very serious goal, so that we can cover the costs of the appeal and future adverse costs for me. I wonder if you could please give this some thought and see if there are like-minded people such as you who might help with this case, or if you can pass it out to wider groups in your own networks? The current law is widely seen as bad. Changing it has the support of 90% of the public, so you are on firm ground when asking others. And if this case fails, there are next to no serious avenues left other than waiting for Parliament. A Parliamentary grandee recently gave me his view that Parliament are unlikely to get around to this for up to a decade.

Despite losing this legal battle, we have not lost the war. Meanwhile, the context around assisted dying is moving fast. In September, the collapse of 81 year old Mavis Ecclestone’s murder trial, (after an 18 month investigation), following a failed suicide pact with her husband of 60 years enraged in the nation. In October, 17 Police & Crime Commissioners wrote to the Government saying that the Current Suicide Act is not working and this month the Royal College of GPs is balloting its members about changing their long-held opposition to a neutral position – which would bring them in line with the Royal College of Nursing and Royal College of Physicians. Elsewhere, the New Zealand Parliament has just agreed an assisted dying law that will go to a confirmatory referendum next year. The tide is with us, but getting our case to court is the essential next step.

Many thanks for all of your efforts so far and your offers of ongoing support.

With Best Wishes to All.

Phil



Update 3

Phil Newby

July 15, 2019

Huge amounts of evidence and our next target

After a tremendous amount of work by our lawyers, we have now issued the claim and served it on the Ministry of Justice! There are 9 lever arch files setting out the case, containing evidence from over 20 witnesses.  Now it's a waiting game to see how the court will deal with the claim.

Thanks for getting me this far and for all the fantastic support that you have given. This could not have happened without you. After this milestone in the legal work we have increased our stretch target to £45,000 so that we can continue to fight our case with ongoing case preparation. I'll keep you up to speed and please stay with me as we go to the next stage.

Update 2

Phil Newby

July 10, 2019

Full legal claim issued

With your help we have been able to issue our full legal claim today. See the press release below and please do keep on sharing the page as much as possible. 

Thanks so much for your continued support, 

Phil


Phil Newby issues full claim in assisted dying case 

Phil Newby, a 48-year-old father of two with motor neurone disease (MND) has today issued his full claim to the High Court to review the law on assisted dying after a crowdsourcing appeal to raise legal funds took just 5 days to hit an initial £20,000 target.

The legal challenge differs from the cases that have gone before by asking the High Court Judges to review and balance expert evidence for-and-against assisted dying in much greater depth than the English courts have ever considered previously.

Phil Newby said: 

“Today I am launching my legal challenge to the current law with its cruel blanket ban on assisted dying. By bringing this case I’m laying down the gauntlet, asking our most senior judges to examine the evidence on assisted dying in detail. 

“I am hugely thankful to everyone who has helped me get this far. I need your help to keep going to the next stage, which is likely to be an oral hearing for permission.  Many of those who have donated to support the case have direct experience of our outdated and cruel law. Reading the comments of supporters on Crowd Justice is both heart-breaking and stirring. Like me, some are staring into a bleak future where no choice exists for a dignified death. Others are the traumatised loved ones of terminally ill people who felt they had no option but to end their own lives.”

“I sincerely hope that I can have a full and proper hearing to consider all the issues and that this will be another important step towards changing the law.” 

The proposed court case follows a similar approach to that used in the case of Carter v Canada, where the judge examined evidence, called and cross-examined expert witnesses. This case directly lead to Canada legalising medical assistance in dying in 2016. 

Financial support from the public is vital to cover legal costs and court fees. Phil Newby is raising funds for his legal challenge on the CrowdJustice platform, the link to which can be found here. 

Phil is represented by Saimo Chahal QC (Hon), Partner, Bindmans LLP, and counsel  Paul Bowen QC of Brick Court Chambers with Jennifer Macleod and Adam Wagner of Doughty Street Chambers.

Update 1

Phil Newby

July 5, 2019

We are close our initial but a long way to go to reach out final target

Thanks to your incredible support we're close to hitting our initial target. But we need to maintain momentum so please keep sharing the page so we can reach our stretch target of £30,000.

    There are no public comments on this case page.