‘It shames us that as a country we can’t sort it out’
TERMINALLY ill and disabled people must be put at the heart of the debate on assisted dying, a campaigner has said.
Father-of-two Phil Newby was diagnosed with motor neurone disease eight years ago and wants to be in control of his final days and hours.
But after years of fighting for law change he fears the debate has become too polarised, leading to “an increasingly fruitless battle” that is making little progress.
Phil, 52, is disappointed the militant “10 per cent of the entire discussion…is making most of the noise”.
He said more moderate voices – including both terminally ill people who want the right to die on their own terms and disabled people concerned about how a law change might affect them – are being drowned out.
Phil was diagnosed aged 43 after experiencing muscle cramps. He now uses a powered wheelchair and spends around 10 hours a day on a ventilator to aid his breathing.
He is suffering from respiratory failure and his prognosis is uncertain – medical interventions may keep him alive for some time or a sudden chest infection could spell disaster.
Speaking in the garden at his home in Rutland, he recalled a turning point during winter 2018. He said: “I began to realise that if I wanted a way out, this was probably the last winter I could do it on my own.
“But that would have meant finishing life early, still at that stage of breathing OK and compos mentis. I thought: This is just not right. There are no good options.”
Phil requested a judicial review in 2019 to determine whether the blanket ban on assisted dying was compatible with his human rights. But his case was rejected by the High Court and Court of Appeal.
The Daily Express Give Us Our Last Rights crusade calls for a change in the law to allow people who are of sound mind and terminally ill with less than six months to live the option of an assisted death.
Phil does not know if he would ultimately choose to end his life if assisted dying were legal. He said: “I would hope not to use it. It’s like the insurance policy against a hideous period at the end of your life and dying in suffering and anguish.”
His wife Charlotte knows she may be forced to watch him suffer as she cannot assist him without facing criminal charges.
The uncertainty is one of the hardest things for the couple and their daughters Sasha, 19, and Jess, 17.
Charlotte said: “Phil is somebody who has taken control of his life until now. Seeing him not in control is awful because that’s not his way. I’m strongly behind him on all of this.”
A podcast Phil started with friend Nyree Ambarchian, called Kill Phil, has featured interviews with people from across the debate.
Phil believes assisted dying should be introduced as part of a broader package of measures to improve endof-life care. But he said politicians were reluctant to grasp the nettle.
He added: “I’m embarrassed that this country – the home of a great democracy, medical service and a world-leading legal system – can’t sort this out. It shames us.”