Dad, 67, says 'nothing will replace' life he has lost to MND but he has one hope

A man with motor neurone disease has said “nothing will replace” the life he has already lost but pleaded with MPs to give him the choice of an assisted death if his pain becomes unbearable.

Steve Gibson, 67, from south London, said it would be “extremely selfish” for politicians to vote against legalising assisted dying as it is not them who are suffering. The dad-of-five, who was diagnosed with MND in 2023, has good days and bad days, sometimes having to lean on a family member or using a stick when he’s walking.

Steve, who previously worked in transport logistics, teared up as he spoke about how tough it was to think about the future, saying he had already been deteriorating. “I miss my work, my hobbies. I love my motorbikes. All that stops and it literally just does exactly that. It stops,” he said. “So you then try and think of, what else can I do to replace that? And there is nothing, nothing will replace that.”

Steve, who has 11 grandchildren, said he doesn’t want to have to suffer when his illness gets worse, adding: “I don’t want that for any of my family. It’s pretty disgusting what you go through with MND. I don’t want somebody to change my nappy. How degrading is that for the person that’s got to do it, and for me?”

He continued: “I hope that assisted dying will be in place. I really do. Look, no one wants to suffer. You know, you can be the bravest, biggest guy in the world, no one wants to suffer.

“I don't want to suffer any more than I do now some days. But this, whatever happens to me at the moment, will happen multiple times. It will increase. It will multiply hugely as we move forward.”

Asked what he thinks about the possibility of MPs not voting to legalise assisted dying, Steve added: “In a way, I think it's extremely selfish of them. They're not the people that are suffering. Their families aren't the families that are suffering. They’re making choices. They’re elected. Let’s do it right.”

A woman has said it would be “criminal” for MPs to reject a bid to change the law on assisted dying. Liz Poole, 47, from Henley, watched her dad Bob suffer in pain until his death at 82 from lung cancer in 2022.

Former chemistry teacher Bob tried to take his own life by overdosing on painkillers, during which he fell and broke his hip, which caused further pain and suffering.

He had considered going to Switzerland’s assisted dying organisation Dignitas but it was “hideously expensive”, Liz said.

“He eventually became housebound. He was sort of moving around using a trolley," she said. "He actually started drinking quite heavily. I think he was just trying to blot everything out, because he just hated his life so much.

“And then he started telling us all that he just wanted to die, and he hated it, and obviously there was nothing we could do. We had great palliative care but there’s only so much they can do.

“I think just everything got so much for him… He took an overdose of Oramorph, which was the painkiller that he had. We found him on the floor. He’d pulled himself under the bed, trying to hide, just hoping that he'd die before we found him.”

Liz’s mum found him first and when she later arrived she found her dad “screaming” out in pain. Bob survived the overdose and died some time later in an assisted home, where he stopped eating and "wasted away” to five and a half stone.

Liz choked up as she said her dad was on his own when he died. “He just looked horrific all the time. We were not expecting him to go then," she said. “That’s just not how we wanted him to go. All of this could have been his choosing and he could have gone in a way where he would’ve had dignity.

"If (the bill) doesn't go through, it will be devastating for not just people who are ill now, but people who potentially may get ill in the future.”

Liz added that her dad dedicated his life to public service, teaching in Africa where he helped to build a school, and volunteering after his retirement. "He was just a good member of society and it would be really disappointing if we couldn't get this through and honour that," she said.

:: Contact the Samaritans for mental health support on 116 123, email at josamaritans.org or visit samaritans.org to find your nearest branch.