"Relief" as funding for motor neurone disease nurse confirmed

Thursday 05 October 2023

Confirmation of permanent funding for a specialist motor neurone disease nurse comes as "a relief", according to the charity who paid for the position when the Health Department stopped funding it last year.

The role – first created by the Health Department in 2020 – became increasingly vital as the number of motor neurone disease (MND) patients in the island increased with the pandemic, from around four patients to a peak of 17.

When the specialist nurse role was introduced, "the care of the people in the island was just transformed," according to Don Connolly, Chair of the Motor Neurone Disease Association (MNDA) Jersey.

But it was briefly unclear whether the role could continue to exist.

At the end of 2022, the Health Department told MNDA Jersey that they would not be funding the specialist nurse anymore, and the charity took over the baton, finding funding until the end of October 2023.

Pictured: The Motor Neurone Disease Association Jersey had to find funding for the specialist nurse role from the end of 2022 until the end of October 2023.

The role has been filled since its conception by Pat MacFarlane, who Don described as having "such compassion towards patients and perfect expertise that we really felt we couldn't lose her".

However, at one point, Pat "was being told week to week whether she was still in the role," said Don.

Having a specialist nurse who can go directly to people's homes is vital and a huge source of comfort to people with the condition, the MNDA Jersey Chair explained.

The charity met with States members twice this year to discuss the future of the role.

This month, MNDA Jersey was told the Health Department would provide long-term funding – but in a Government press release, Chief Officer for Health and Community Services Chris Bown said the service "will be considered as part of the HCS Financial Planning process for 2024".

Pictured: "I am committed to ensuring patients with MND are supported," said Health Minister Karen Wilson.

This was later corrected, with Health Minister Karen Wilson confirming the funding would be permanently awarded. 

“The MND Nurse is a hugely important clinical role and highly valued by patients, families and carers," added Deputy Wilson.

"I am committed to ensuring patients with MND are supported and I hope my statement provides additional reassurance for patients in that regard.”

The Health Department said that the funding, which will begin from 1 November, was drawn from existing funds.

Assistant Health Minister Malcolm Ferey added: “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.”