A lifeline for those lucky enough to have one
Specialist nurses are integral to person-centered care for people with Parkinson’s. Not only do they use their specialist understanding and knowledge of the issues facing people with the condition to provide essential information and advice; they also help establish access to a full spectrum of support for patients – from psychological to physical – and act as a valuable champion for the conditions they manage within the NHS.
There are an estimated 127,000 people in the UK living with the condition, and Parkinson’s UK has long campaigned for every one of these to have access to a dedicated nurse service. By working closely with people affected and the UK Parkinson’s Excellence Network, the charity has developed a strong evidence base to demonstrate the need for specialist nurses, and has successfully built up a network of around 340 Parkinson’s nurses in the UK.
Until July this year, NICE guidelines stated that each nurse should have a maximum caseload of only 300 patients. Using this guidance, figures show a shortfall of 83 nurses, which means 25,000 people with Parkinson’s are still without this vital support.
A service at threat
To make matters worse, two in every five Parkinson’s specialist nurses (40 per cent) are approaching the age of retirement and NHS budget cuts are reducing the possibility of replacement posts, damaging already low workforce numbers. In a reflection of the issues around Parkinson’s nurse recruitment, in July NICE scrapped its guidance around the maximum 300-patient caseload of a Parkinson’s nurse – leaving thousands more patients at risk of losing an essential service, and causing further pressure on existing nurses.
Although some Clinical Commissioning Groups (CCG) are attempting to tackle the squeeze by introducing neurological nurses, this can present problems for people with Parkinson’s. These nurses cover a broader range of conditions – including everything from brain injuries to headaches – meaning that Parkinson’s, and the specialist knowledge required to manage the condition, will only make up part of the demands placed upon them. As they cover so many conditions, their caseload is also likely to be even higher, reducing the amount of care they can provide for each patient.
Lack of nurses has a long-term impact
Although Parkinson’s specialist nurse posts are under threat due to cost saving, research by Parkinson’s UK shows that a lack of specialist nurses will actually increase NHS spending in the long term.
Over the course of a year, a Parkinson’s specialist nurse saves £43,812 in avoided consultant appointments, £80,000 in unplanned admissions to hospital and £147,021 unnecessary days spent in hospital for every CCG.
To prevent further loss of Parkinson’s specialist nurse posts, and to ensure that there is appropriate support for all people affected by the condition, Parkinson’s UK is now working closely in areas where services are under threat, or where there are no services available. Bringing together the expertise of the charity, people affected and the clinical community via the UK Parkinsons Excellence Network we are all campaigning to ensure that everyone living with Parkinson’s has access to a dedicated Parkinson’s nurse service.
The charity asks that people affected by the condition to share their experiences of the nursing service they receive – or don’t receive – to help make sure that more importance is placed on Parkinson’s specialist nurse care. For more information, please contact me at email@example.com.