REINSTATED government funding for a specialist motor neurone disease nurse has come as “a relief” to the charity which previously paid for the role.
The Health Department withdrew funding for a nurse in March this year, with Motor Neurone Disease Association Jersey stepping in.
The position, first created by Health in 2020, has become increasingly vital as the number of MND patients increased with the pandemic, going from around four or five patients in the Island five years ago to a peak of 17.
There are currently 13 Islanders with motor neurone disease – a rapidly progressing, fatal disease that affects nerves to the extent that muscles no longer work. Patients have a failing body but their brain is not affected.
After initially promising funding until the end of the year, the government later made the decision to make financial support permanent.
Health Minister Karen Wilson said: “I can assure patients that funding for the motor neurone disease nurse specialist will be permanently awarded. The MND nurse is a hugely important clinical role and highly valued by patients, families and carers. I am committed to ensuring patients with MND are supported and I hope my statement provides additional reassurance for patients in that regard.”
The future of the role had remained uncertain, with MNDA Jersey meeting with States Members twice this year to discuss the future of the role.
The nurse “was being told week to week whether she was still in the role”, according to Don Connolly, chair of the charity.
The government funding, which starts from November, was drawn from existing budgets, according to the Health Department.
This increase in MND patients since the pandemic reflects UK trends, although experts do not know the cause, according to Mr Connolly.
“It’s such a devastating disease,” Mr Connolly said.
When the specialist MND nurse was introduced, “the care of the people in the Island was just transformed”, he said.
The role has been filled since the start by Pat MacFarlane, who Mr Connolly described as having “such compassion towards patients and perfect expertise … that we really felt we couldn’t lose her”.
Having a specialist nurse who can go directly to people’s homes was vital and a huge source of comfort to people with the condition, Mr Connolly said.
Assistant Health Minister Malcolm Ferey said: “We are delighted to have secured funding to support this incredible service. We realise how vital this support for Islanders with motor neurone disease is, and we are happy that we can continue this great work with the support of the MNDA.”
“Now,” Mr Connolly said, “we can focus as a charity on getting back to people in the Island with the disease.
“Time has been wasted. It’s a relief to be able to put this behind us.”