Charlie Tostevin has sent an open letter to States Members, pleading they vote in favour of the service when the assisted dying debate starts tomorrow (21 May).

The ex-referee has detailed his experience living with a terminal illness and how it is affecting his life, physically and mentally.

Mr Tostevn was diagnosed with motor neuron disease in February 2022, after months of tests, and over those 24 months has lost the ability to speak and walk.

The disease has left Charlie with slight use of his arms and hands and he says he now has difficulty swallowing:

"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 won't be able to swallow and only breathe with the help of oxygen.

"I think, at that stage, I will be existing and not living."

Charlie starts his letter by describing how, during the pandemic, he and his wife began walking, much like everyone else.

When the lockdown was lifted, he continued to go on walks, although in 2021 Charlie started to trip over more often, a few of which left him seeking help in A&E.

After the falls, the ex-referee's GP suggested they investigate what was causing him to trip.

Charlie Tostevin says he was sent to see a Neurology Consultant in Jersey who did tests including bloods, MRI, Epidural injection and finally a brain scan in Southampton.

"In February 2022 he sent me to the University College London Hospital to see their senior Neurology Consultant, who specialises in Motor Neuron Disease (MND).

"He gave me a thorough examination and then he sat me and the wife down and broke the news."

The couple were told Charlie has motor neuron disease and that there is no cure.

The consultant continued, telling them they had until the end of 2022 to complete any future plans together.

He says he was then invited to spend a week at the hospital for further investigations:

"It turned out to be the  most serious type [of motor neuron disease], PLS."

Primary lateral sclerosis, known as PLS, affects the nerve cells in the brain that control movement, causing the breakdown of nerve cells.

It leads to weakness in the muscles that control the legs, arms and tongue.

Charlie Tostevin spoke with his wife and son about his diagnosis and, as a family, they discussed assisted dying.

He says it was agreed that when he reached the final stages of the disease, he would wish to use the service wherever it is allowed, and says to politicians:

"I hope the above has helped you understand my situation and you will vote “pour” when debating the subject."

The ex-referee would like people to try the following for, at least, an hour to understand what someone with a terminal illness has to deal:

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 that you 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,

Charlie says:

"This is your life, not just for one hour but for 24 hours a day, 365 days a year.

"I could go on but I am sure you get the picture.

"There are many sorts of pain both physical and mental and each situation should be assessed that way because I suffer from claustrophobia and have a great fear of being shut into a small space or buried alive and for me, the situation above would be mentally intolerable."