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 I’m staring down the barrel of an undignified, and drawn-out death because of an out of date, cruel law.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Worst of all I will have very little choice because of an out of date law.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The ultimate aim of this case is to force the government to address the out of date law governing assisted dying, in the same way many other countries already have.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!