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Exclusive: Fight to save Parkinson's specialist nurse posts from axe

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A charity is fighting to save seven Parkinson’s nurse specialist posts across England from potentially being axed, Nursing Times has learnt. 

Katherine French, who leads on nurse development work at Parkinson’s UK, said the charity was in talks with commissioners to try and stop the positions from being lost but was prepared to take stronger action if agreements could not be met. 

“We get situations where some of our nurses are being almost audited and evaluated to the nth degree”

Katherine French

A break-down in discussions with West London NHS Clinical Commissioning Group led to a demonstration last month.

The charity claims more than 300 Parkinson’s patients across Kensington, Chelsea and parts of Westminster have been without a nurse specialist for more than a year.

It gave £128,000 to cover the costs of the nurse for the first two years from 2015 as part of its campaign to improve access to this expert support. 

The CCG agreed to fund the service permanently in 2017 but the post has been vacant since December of that year when the previous nurse left and was not replaced, the charity said.

Charlotte Johnson Wahl, who has lived with Parkinson’s for more than 20 years and is mother to politician Boris Johnson, was among those who took to the picket line outside the CCG meeting on 22 January to demand for a nurse to be reinstated.

katherine french

katherine french

Source: Parkinson’s UK

Katherine French

Ms French, who is also the charity’s service improvement programme, told Nursing Times there were another six CCG areas across England where a Parkinson’s nurse post had been vacant for more than six months and was not actively being recruited to.

She said: “At the moment we are trying to have discussions with the CCGs, but we are potentially at the stage where we are going to have to go and actually physically campaign.”

The charity collects data on threats to UK specialist nursing services and Ms French said latest figures showed there were currently 41 “active issues”, which could include nurses being on sickness or maternity leave and not being covered, or nurses managing excessively high caseloads or long hours.

Ms French said she was aware of nurses struggling with caseloads of up to 1,000 patients – far higher than the recommended 300. 

“We started over 12 months ago to track this information about threats to nurse services because we were really concerned that we were seeing more and more of this and whilst we are seeing some resolutions to some of them, that number is not going down,” Ms French told Nursing Times.

“We are constantly every month around that 40 figure so even though some of those threats are resolving themselves more are appearing,” she added. 

Ms French said specialist Parkinson’s nursing services were often under close scrutiny because the nurses staffing them were usually band 7 so would be a relatively high cost.

“We get situations where some of our nurses are being almost audited and evaluated to the nth degree where they are constantly having to justify their existence,” Ms French told Nursing Times.

She said patients told the charity that their specialist nurse was their “lifeline” and added that GPs were ”heavily reliant” on them. 

“We recognise the role specialist nurses play in managing long term conditions”

West London CCG 

Highlighting the negative impact of a nursing service being cut, Ms French said: “Basically these patients then…become reliant on their GPs.

“So they tend to go and see their GP more often, but that then results in an increase in consultant appointments and an increase in waiting times for consultants, because a lot of the time the GPs are sending them back to their consultants because they are not sure how to manage them, or they don’t have that person to give them the advice, support and expertise,” she said.

Areas without access to a specialist Parkinson’s nurse also saw increased hospitals admissions for issues that were largely preventable, Ms French said.

She noted that people with Parkinson’s disease typically stayed in hospital for seven to 10 days, even if it was for something as simple as a urinary tract infection.

Around 75% of the 380-400 Parkinson’s nurses currently employed across the UK were based in the community but they also worked in hospitals, Ms French said.

She highlighted that they were equipped to provide a truly “holistic” service and could save the NHS considerable money through reduced hospital admissions and GP and consultant appointments.

“We are potentially at the stage where we are going to have to go and actually physically campaign”

Katherine French

At band 7, most of the specialist nurses were also prescribers, so could help patients keep on top of what was usually an intensive and complicated medication regime, said Ms French.

“It’s for the CCGs and the health service to realise the importance of Parkinson’s nurses, that actually they are really crucial at supporting people around their condition and particularly around the complex medication regimes and also around symptom managements,” she added.

“This is a progressive condition so people won’t get better but [the nursing service] will allow them to live longer independent and to manage those symptoms better, so to stay well for longer,” Ms French said. 

“I think it’s really for them to look at actually the bigger picture – how much money they can save the NHS in things such as reducing hospital admissions and also consultant appointments,” she told Nursing Times

A spokeswoman for West London CCG said it was currently working alongside health professionals to “review and improve” elements of its neurology services, including Parkinson’s care.

She added that all patients with Parkinson’s were aligned with a specialist hospital consultant or doctor who was responsible for ensuring they received appropriate care.

“We recognise the role specialist nurses play in managing long term conditions, we’ve contacted Parkinson’s UK about their concerns and are discussing this matter further with them,” she said.

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Readers' comments (5)

  • Wonder what is happening to the other specialist nurse posts in that CCG?

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  • karen Webb

    This is terrible! So many of the patients funded by NHS continuing healthcare live with Parkinson’s Disease! We very much need specialist nurses for this group (and also PSP) and value the expertise they can bring to patients and nursing staff. We should have MORE, not fewer specialist nurses - experts in their area of nursing practice

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  • I am not shocked. These parkinsons patients have the rest of their lives to live and need help and support to do so.
    If you are dying you have access to help more easily, not quite sure if thats fair. Sorry to be controversial...

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  • My husband was diagnosed with Parkinson’s almost 4 years ago now, at the age of 35, and I can honestly say that the specialist nurses we have in our area are absolutely wonderful! They have been a huge support to my husband and myself through some really confusing times.

    As a student nurse with a keen personal and professional interest in Parkinson’s I cannot stress enough how important these specialist nurses are!

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  • Parkinson's nurses are especially valuable when looking at the medications people are taking and ensuring their are no new additions that can interact and cause problems. I see problems with patients getting their medications late or staff not understanding why it is so important they are given a max of 30 mins late (per Nice guidelines). Despite my best efforts most RN's don't listen to us student nurses, but they do listen to a nurse specialist. I have heard only good things about my local PD NS from patients and how they appreciate being able to have someone to call who will go through things with them. What price piece of mind and allowing people to be informed and proactive in the management of their own conditions?

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