* Don’t tell me how I should die But, training for a half marathon at the time, he was getting agonising and unexplained cramps at around the eight or nine-mile mark. He underwent some tests, visiting first a GP and then, at his own suggestion, a neurologist. “All the tests came back negative, and we took that as a good thing,” says Charlotte. “It later dawned on us they were ruling out other things, and the fact they hadn’t found anything was a bad thing. Then his weakness got worse, and in June 2014, he got the diagnosis.” The cause of Phil’s symptoms was motor neurone disease, the fatal degenerative illness which attacks the nerves that control muscle movement. The news was like a thunderbolt.
They were only 43-years-old, yet Phil was told he had “either a period of months, or a short number of years to live”.
They were advised to go home and make arrangements. “It was like being hit by a bus,” says Charlotte. “We walked away, and I thought, ‘That’s the end of the world then’, because you don’t know what now. We came home and sobbed in the driveway.
Then we had to get on and pick up the children from school.” Sitting in a living room bathed in summer sunshine, the couple recall how they digested the news and the difficulty of explaining such a cruel new reality to their daughters, then just 11 and 9. Phil Newby/CROWDJUSTICE ‘It was like being hit by a bus,’ says Charlotte Newby, when they learned Phil didn’t have long to live.
“We didn’t tell them immediately,” says Charlotte, now 49. “We let it sink in for a couple of weeks because they were quite small and Phil was seemingly quite well then.” But they couldn’t hide the truth for long. “We’d started to tell friends and close family and thought it should come from us first,” says Charlotte. “So we explained that Phil had an illness.
” Phil, a warm and lively presence, who, according to his wife of 18 years, remains “mentally sharper than all the rest of us”, adds: “We told them a white lie, which was I was sick and going to get sicker, no one could do anything about it, but the heartbreaking thing was to tell them I was going to be around, not knowing if that was going to be the case.” So far, they have been proved right, although Phil has become wholly dependent on his wife, who is his full-time carer. He can move himself around within the house with the aid of a walker, but outside he requires a wheelchair or powered scooter, and has lost his fine motor skills and ability to complete many everyday actions unaided. “The disease is progressing relentlessly but slowly,” he says. “You don’t know what’s going to happen, that’s the thing.
You don’t know if your body is going to continue on the same path or suddenly drop off a cliff.” Such desperate uncertainty has cast a shadow over what was once a happy life. Eventually, the illness will likely claim all of Phil’s physical abilities, leaving only his mind intact. And the prospect of him ending up locked into his body, able to move only his eyes, fills him and his wife with dread. But it has spurred them into action. Phil is campaigning to legalise assisted dying for people in such circumstances as he faces, bringing a case in the High Court for the evidence to be re-examined. Last week, the couple launched a crowdfunding campaign to help cover the costs, raising more than £18,500 ($35k) in the first four days from friends and strangers, some of whom have their own painful stories of the illness.
Phil says they will need up to £50,000 as they fight for the reconsideration of the UK’s legal position on assisted dying, currently outlawed by the 1961 Suicide Act. His decision to take legal action over whether the law contravenes human rights – an argument successfully made in a landmark Canadian court case in 2015 – came earlier this year. “I was losing all autonomy, all ability to walk, and my choices were appalling,” he says.
They amounted to travelling to Switzerland to end his life while he still could, letting the disease take its natural, debilitating course – or “a sort of DIY suicide at home, with all the trauma that would bring for the family, and the legal risk.
That would [also] be bringing my death forward, because I’d have to do it while I was well enough to without any assistance.” Charlotte, equally dismayed by his options, would also like her husband to be able to receive assistance in one day ending his life – at the right time, not while he remains able to enjoy it. “It is difficult now, but we still have a good life – [but] I could see a point in the future where life for Phil could become completely intolerable and painful and full of fear, and that’s a dreadful thing to see and to know someone is going through,” she says. “I would rather him have a life now, knowing there’s choice at a point when he could not bear to go on.
We’ve talked with our girls about it and been very open with them about how this might go.” All of the family and their friends are behind them. In the meantime, they have been trying to cram in as many trips, outings and experiences as they can before it is no longer possible for Phil. Such a day could be just around the corner, or still many years away. “Emotionally, I think I sometimes just put it right to the back [of my mind] because we have to get on with real life,” says Charlotte.
“But it’s heartbreaking to see this happen to somebody who was – is – so vital and energetic. [For him] to be robbed of those physical things, that’s the hardest aspect. Sometimes I step in to do things Phil would do – doing some running with the girls or going out on kayaks with them..
. but I feel sad and often find myself [thinking] he should be here doing it.” Having daughters, Sasha, now 16, and Jessica, 14, to look after has helped keep her from falling apart. She is hopeful Phil’s legal fight will not be in vain. “I’d like to think if anyone can do it, Phil can,” she says. “When he says he’s going to do something, he does it.” Phil’s irrepressibility shines through his every utterance, but he has a greater priority than the court case. “It’s second on my list,” he says. “First is surviving this disease.
” To donate to Phil Newby’s appeal, visit crowdjustice.com/case/right-to-die-test-case/ The Telegraph, London.