'Important to have support': Jersey could lose only specialist MND nurse if funding runs out
Phil Wellbrook has been speaking to MND patients in Jersey to find out what it's like to live with the condition.
Jersey is at risk of losing its only nurse specialising in motor neurone disease (MND) if essential funding runs out.
The 17 islanders currently living with the disease are supported by Pat MacFarland, who took up the position in March 2023.
The role is funded by the MND Association rather than the health service, and funding will run out within months unless a solution can be found.
Pat's contract is due to come to an end in October, and the association is calling for the government to take over her payments so she can continue supporting patients.
Steph Harding, 43, was told she had MND last summer and says she only remembers feeling "numb".
The former marathon runner from Jersey worked as a social worker until the debilitating disease began to take over her body and mind.
After losing her speech and mobility, Steph now requires physiotherapy and speech and language therapy and uses a stair lift to move around the house.
Ben and Steph describe how vital the support from Pat has been for them...
Her husband Ben says trying to plan anything is "tough".
"When something like this comes along it’s always difficult to make plans because it all depends on how Steph feels day-to-day,” he said.
Pat looks after Steph in her home and says it's "humbling to see" how she battles with the illness.
She says: “The MND Association allows me to go into homes where equipment is needed immediately and they will give me permission to go and get that piece of equipment.”
Ben says the support that Steph and himself have received is "phenomenal".
“It’s important to keep funding coming in, especially as numbers over here are slowly getting higher," he added.
"It’s important to have support. There are a lot of people that have got family and friends behind them and that must be even harder.
"At least Steph and I have got each other. Thank god we've got each other.”
Rosemary Renouf volunteers for the MND Association as an associate visitor.
She lost her husband to the disease 10 years ago and says it took eight years to get to the point where she wanted to help others.
Her role involves visiting people living with MND, to offer emotional and financial support.
Rosemary supports MND sufferer Charlie Tostevin, who was named the Channel Islands' Sporting Hero in February 2022 for his work with the Jersey FA over the years.
He said: “What’s really frustrating is 18 months ago I was walking, now I can’t get out of my chair.
“My wife is my full-time carer and without her, I wouldn’t be doing half of this. It puts a lot of pressure on her."
Charlie said he is "lucky" to have support from Rosemary and the MND Association, which relies on fundraising and donations to train volunteers and support people living with the disease.
Jersey's Assistant Social Security Minister says the government cannot guarantee the future of the specialist service provided by Pat.
Deputy Malcolm Ferey admits that the government has other priorities for funding allocation in its plan for this year, but is looking at the possibility of funding the service in 2025.
It means that the likelihood of losing the island's only specialist nurse is a real possibility.
The situation is similar across the Channel Islands - there are six known cases of MND in Guernsey and the island only has one specialist nurse.
There is also one known case of the disease in Alderney, and MND charities across the islands have told ITV News that they could also benefit from added recruitment and funding from the islands' respective governments.
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