AN Islander living with the devastating impact of motor neurone disease has written a heartbreaking letter to politicians urging them to push forward with assisted dying legislation during next week’s landmark States debate.
Charlie Tostevin – a former civil servant who is well-known in the Island’s sporting community following his 35 years with the Jersey Football Association – can no longer walk or speak following his diagnosis just two years ago.
He now faces losing the use of every muscle in his body except for those in his eyes.
In an email detailing the rapid decline in his health, and the “mentally intolerable” future he faces, the 70-year-old has called for all Members to vote “pour” when they debate the new law.
If they don’t, he has challenged them to try living like an MND patient for a minimum of one-hour – during which they are not allowed to use any part of their body except their eyes.
The States have already approved the principle of introducing assisted dying – becoming the first parliament in the British Isles to do so three years ago – and are now due to debate how the service would work.
The central issue is whether assisted dying legislation should be limited to those with terminal conditions causing “unbearable suffering” or whether individuals with incurable conditions causing “unbearable suffering” could also end their own lives.
If approved, assisted dying in Jersey could be available from the second half of 2027.
Describing his diagnosis, Mr Tostevin said he first noticed a problem when he began tripping over in 2021 after taking up walking.
His worst fears were confirmed early the following year when he was sent to see a neurology consultant at University College London Hospital who specialised in motor neurone disease.
“He gave me a thorough examination and then he sat me and my wife down and broke the news. He said that he could confirm that I had MND and that there was no cure and was therefore terminal,” Mr Tostevin wrote in the email, which he shared with the JEP.
“He also said that if we had any future plans to complete them by the end of the year. A few weeks later, I was invited to spend a week in the hospital in London so they could determine which type of MND I had. It turned out to be the most serious type, PLS.
“Within two years (Feb 24) I had lost the total use of my legs, 90% of my left arm and hand and 70% of my right arm and hand.
“Since then I now have difficulty swallowing and have a smaller choice of food and the most frustrating thing is that I have lost my voice and have to use a computer tablet to converse.
“My future is that I will lose the use of every muscle in my body except for my eyes, leaving me totally incontinent. I will be fed through a tube in my stomach, as I wont be able to swallow and only breathe with the help of oxygen. I think at that stage I will be existing and not living.”
Mr Tostevin, who was a football referee for 25 years, said that he had spoken to his wife, Joan, and son about his desire to end his life “wherever it was allowed”.
In his email, Mr Tostevin said that any Member considering voting against the legislation for assisted dying should try living in his shoes.
He wrote: “Maybe you could give the following a try for a minimum of one hour?
“Please remember at each stage you are not allowed to move any part of your body except for your eyes.
– Sit down in your favourite armchair and rest your hands on your legs.
– Place your chin on your chest and should your mouth open, remember you are not able to shut it without help.
– A fly lands on your nose, but remember you can’t move and it stays there or walks over your face until someone notices and comes to your rescue.
– As above, but this time a spider starts to walk up your body and starts to walk over your face, but, again, there is nothing you can do.
– You have an itch but you can’t scratch it.
– You mess yourself but have to stay like that until help comes.
– This is your life, not just for one hour but for 24 hours a day, 365 days a year.”
Meanwhile, representatives from the Jersey Assisted Dying Action Group and UK pressure group Dignity in Dying are due to gather in the Royal Square on the day of the debate to urge Members to adopt the plans.
Jennifer Bridge, a former States Member who leads the JADAG, said that the “vast majority” of Islanders wanted to see the law changed.
“As States Members head into the debate, they should remember the wishes and stories of residents, many of whom will have seen loved ones suffer under the current law.
“Changing the law would be far safer, kinder and give dying people the choice and compassion they deserve,” she said.
But those who oppose moves towards assisted dying have continued to voice their concerns during the build-up to the debate.
Retired GP Dr John Stewart-Jones said the in-principle vote in 2021 was dependent on sufficient safeguards being in place, and added that he did not believe this area had been covered. This, he explained, meant there was a risk that some Islanders could be at risk of coercion.
