Assisted dying: Father with MND says ‘antiquated’ law must change

A father living with motor neurone disease (MND) who took his fight for choice at the end of life to the High Court has appealed to MPs to change the “antiquated, out-of-date and frankly cruel” law which currently criminalises assisted dying.

Phil Newby, 54, from Rutland in the East Midlands, said a legal assisted dying service would likely be in place too late for him but, six years on from his efforts to bring change through the courts, told how he would be “delighted” and find it “really satisfying” for Parliament to reform the law.

The former environmental consultant and father-of-two spoke out as a committee of MPs is expected to consider an amendment to the proposed legislation extending eligibility of those seeking help to die.

The suggested change, put forward by committee member and Liberal Democrat MP Tom Gordon, would see people with neurodegenerative illnesses such as MND able to request assisted dying with 12 months left to live.

This would extend the eligibility for this group from the current, six-month, life expectancy under the Terminally Ill Adults (End of Life) Bill.

Mr Gordon has said his proposal “will ensure more people with neurodegenerative conditions will be able to access an assisted death if that is their choice”.

Mr Newby described the proposed change as a “very wise and sensible thing to put into our law”.

In an interview with the PA news agency, he said: “The neurological diseases come with the very high risk of a cognitive decline in the later stages.

“This means that very often, within the last six months of their lives, people with neuro illnesses, with brain illnesses, become ineligible for an assisted death.

“And they are some of the people who need an assisted death perhaps the most, the people who, for decades now, have gone to court begging for help from the system.”

Mr Newby was diagnosed with MND in 2014 and by 2019, when no longer able to walk or use his hands and lower arms, had taken his case for change to the High Court.

He sought to bring legal action against the Government over the law, under which it remains a criminal offence for anyone to help another person end their life.

Refusing permission for his case to go ahead, judges said the court was “not an appropriate forum for the discussion of the sanctity of life”.

Since then, Mr Newby said he has endured a “slow and very relentless deterioration” in his condition, now having “less use of my limbs, problems with breathing and swallowing”.

While living at home with his wife, he spends long periods on a ventilator and is looked after by carers almost 24 hours a day.

While unsure of his own life expectancy currently, he said a palliative care doctor had concluded he might have about 20% of his original health left and is terminally ill.

Mr Newby told PA: “For me, in particular, I’m unlikely to benefit from a change in the law … even if it’s passed through the Houses of Parliament – which I hope it will be, I’ll be delighted if it is – will take two, maybe three years to come into effect.

“And I’m not sure that I’ll have that time.

“I’ll never say never, but the satisfaction of seeing a really antiquated, out-of-date and, frankly, cruel bit of legislation from the past replaced by something much better, would be really satisfying.”

The committee is due to resume its line-by-line scrutiny of the Bill on Tuesday with Mr Gordon’s amendment on eligibility expected to be debated this week.

Campaign group Care Not Killing, which is opposed to a change in the law, has said the amendment to widen eligibility for some “shines a spotlight on the dangers of legalising state-assisted killing, as once politicians say there are some lives not worth living it is only a matter of which conditions and illnesses are included”.

Other amendments, including those proposed by Labour MP Kim Leadbeater to replace High Court approval of each assisted dying application with an expert panel, will be discussed by the 23-member scrutiny committee in the coming weeks.

Opponents have criticised that potential change as a weakening of safeguards, saying the involvement of the High Court in every case had been held up as the reason the Bill was said to be the strictest of any country.

The Bill is expected to return to the House of Commons, most likely towards the end of April, for further debate and a vote by all MPs.

Any change in the law would apply to England and Wales only.

Meanwhile, the Isle of Man’s House of Keys could have its final vote on assisted dying legislation on Tuesday, before the Bill returns to its upper chamber in March, with royal assent possibly following in the months to come.

Campaigners have said that, following that timeline, assisted dying could be available to eligible Manx residents from 2027.

In that case, the Isle of Man could be on course to become the first part of the UK and Crown Dependencies to have a legal assisted dying service in place, with legislation also currently being considered in Scotland and Jersey.