Jersey MND patient calls threat of losing nurse 'cruel'

Charlie Tostevin was diagnosed with MND 18 months ago

A man living with Motor Neurone Disease (MND) has branded the threat of losing a nurse who supports islanders living with the condition as "totally cruel".

Charlie Tostevin is among 12 patients in Jersey with the brain and nervous system disease reliant on the specialist MND nurse.

Yet a charity said funding was in jeopardy unless the States stepped in.

Health and Social Services said it was looking for a way forward.

But Mr Tostevin said: "To think how much money our States have wasted over the new hospital and consultants.

"It seems totally cruel to the MND patients that we are having to fight for someone who is important to us and our families.

"They should be ashamed of themselves."

Joan Tostevin said the specialist nurse was a lifeline to patients

The Motor Neurone Disease Association has been covering the costs of the role, since the States pulled the funding last year.

But the charity said it could not continue to provide the £50,000 annual support past October.

Mr Tostevin, who described how he had lost the ability to walk and speak since his diagnosis 18 months ago, now relies on a team of experts including his consultant and physiotherapist.

"But the most important person is our MND nurse," he added.

"She is so kind and caring and nothing is too much trouble.

"If she does not know the answer she knows someone who does.

"We really could not be without her."

'Devastating diagnosis'

His wife Joan said the nurse was a "lifeline" and losing her would be "disastrous."

MND, also known as amyotrophic-lateral sclerosis (ALS), is caused by the death of the nerves that carry messages from the brain to people's muscles.

It affects patients' ability to move, talk and breathe.

Margaret McGovern, from the Motor Neurone Disease Association, said MND was the "most devastating diagnosis".

On the specialist nurse, she added: "She can see the problems before they arise."

Deputy Malcolm Ferey, assistant minister for health and social services, said he appreciated how the specialist role was a "lifeline" for patients.

He said they were in "discussions" with the charity and another meeting was planned for September to look at "resource requirements".

"I'm hoping the Jersey government will step in. the neurology department would still be available to support patients with this terrible disease but not in the same way as receiving an outreach service," he added.

"I'm really positive that we will be able to find a future for the charity," he added, but said they needed to go through the "full process".