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Charity highlights need for specialist Parkinosn's nurses in the Highlands

By Gregor White

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More nurses are needed to help those with Parkinson’s.
More nurses are needed to help those with Parkinson’s.

A charity is calling for more specialist nurses in the north of Scotland to help sufferers of Parkinson’s.

In a new report published this week Parkinson’s UK Scotland highlights figures showing there are not enough nurses to meet the needs of the estimated 13,000 people living with the complex brain condition in Scotland.

It says the problem is particularly acute in the north and in Scotland’s remote and island communities.

Parkinson’s UK recommends a maximum caseload of 300 people with Parkinson’s for each full-time specialist nurse, with fewer in remote areas.

People with Parkinson’s are over-represented in remote communities – about 12 per cent of people with Parkinson’s in Scotland live in remote areas, compared with eight per cent of the general population.

The charity calculates that the 1.5 full-time nurses covering NHS Highland have a caseload of 620. Meanwhile, in Shetland, the clinical nurse specialist supports around 250 people, with 2.5 hours a week allocated to the estimated 60 individuals who have Parkinson’s. The nurse also covers multiple sclerosis, stroke and motor neurone disease.

And the number of people with Parkinson’s is increasing while more than half of Parkinson’s nurses working in Scotland right now are due to retire before 2030.

There are also shortages of other essential members of Parkinson’s teams, including doctors and other professionals like physiotherapists, speech therapists and occupational therapists.

Tanith Muller, parliamentary and campaigns manager for Parkinson’s UK in Scotland, said: “People with Parkinson’s tell us that the most important person helping them to live with their condition is their Parkinson’s nurse. We are really concerned that people are struggling to get the support they need from their nurse right now. And these pressures will only get worse as the number of people living with Parkinson’s in Scotland continues to grow.

“Where people have insufficient support from a Parkinson’s nurse, they are less likely to be confident about self-managing their condition. They are also less likely to be referred to essential professionals, such as speech therapy, physiotherapy and occupational therapy. This has consequences: lost independence, increasing care needs and more crisis hospital and care home admissions.”

“The big risk with not having enough nurses is that timely contact can’t be made with people with Parkinson’s. If contact can’t be made in a timely way, then there is a risk they will deteriorate further and perhaps end up in hospital. It also means their condition is less likely to be controlled well, so there could be an increase in disability and then need for other services to get involved if the person is less functionally able than they should be because the right expert input has not been available,” said Dr Zoe Muir, consultant in geriatric medicine based at Aberdeen Royal Infirmary.

Dr Julie Jones, physiotherapist and associate dean at Robert Gordon University, said: “The specialist nurse role is even more important in rural areas, where patients tend to be further away from consultants and maybe only see them remotely. The challenge is to make sure there are enough nurses to cover remote and rural areas, where there might be fewer patients making up the caseload, compared to Glasgow or Edinburgh, but the geographical area is perhaps five times as large.

“In these areas, seeing patients regularly and intensively can be a challenge.”

People who live with Parkinson’s consistently speak highly of the support they receive from their specialist nurses.

Andrew Grant, from Inverness, said his Parkinson’s nurse has been a “consistent link” to support ever since his diagnosis in 2018.

“She has been there the whole time, advising on what to do and what is available in terms of support for people living with Parkinson’s,” he said.

“We meet on a regular basis, generally around every six months. Each time, the nurse checks my condition to see if there has been any deterioration since we last met. She asks about my gait, walking, sleep, whether there are any issues with swallowing or my voice, among many other things, covering the range of symptoms associated with Parkinson’s.

Andrew sees the nurse as an important link to other health professionals, referring onwards when issues arise, as well as a central person who acts to connect people with Parkinson’s.

“Parkinson’s nurses provide a consistent link after diagnosis. “When you get diagnosed, the level of follow-on support varies depending on who diagnoses you and where you are referred.

“However, once you come into contact with the Parkinson’s nurse there is consistency, a central point you can go to for help and advice.”

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