Neuro Hebrides are campaigning for improved essential care for Neurological Patients
For quite some time there has been a noticeable reduction is service provision for Neurological Patients in the Western Isles, and proposed changes to the Neurological care provision model by the NHS Western Isles Health board has raised great concerns. Not only with individuals themselves suffering a Neurological condition, but amongst third sector organisations and charities including Neuro Hebrides, MS Society Scotland, Parkinsons Scotland and Epilepsy Scotland.
The issue was covered in the Stornoway Gazette on the 26th May 2022. Nursing changes ‘will put people at risk’ | Stornoway Gazette
There are proposed changes being implemented by NHS WI Health board that could have serious implications for the care and support of neurological patients in the Western Isles. In the past, there was 1 full time MS nurse, 0.5FTE epilepsy nurse and a 0.8FTE Parkinson’s nurse. A total of 2.3 posts. After the changes proposed by the Health board there will be 1.2FTE Advanced Neurology nursing posts and 0.8FTE Parkinson’s post. A total of 2 posts. 2.3 to 2 is a reduction of service, and significantly there is not an MS Specialist nurse in the new model.
There are currently 1171 patients in the Western Isles with a neurological condition, and this number is likely to rise as more people are diagnosed. This will mean a significant increase in demands from existing and new patients that the neurology nurses will have to cover.
2.3 specialist nurses were already stretched with less patients, it’s not feasible to expect 2 nurses to cope with even more patients and diverse conditions/needs.
The reduction in service provision will put people at risk. There are a number of treatment options for conditions such as Epilepsy, MS and Parkinson’s. 17 for MS alone. All of these treatments come with their own risk profiles and monitoring requirements. This requires detailed understanding on the part of the nurse to offer support in choosing the right treatment option and to monitor the progress of the treatment effectively to prevent an adverse reaction occurring. Moving away from specialist nurse provision dilutes specialist knowledge across a range of very different conditions and medications. As noted Greater Glasgow Health Board have confirmed there is to be no change in the level of support they provide to compensate for the reduction of this service and specialism.
It is also a belief that the proposed service reduction is not in line with the Neurological Framework. The “pyramid of support” differentiates between generic neurological health and social care support and specialist and condition specific support. It makes clear that there is a place for both types of support, and that many people will need to access both types of support. This would seem particularly appropriate for people with complex conditions such as epilepsy, MS and Parkinson’s. By their nature these conditions are fluctuating and level of care and support may help people to avoid hospitalisation and care home admission.
There was noticeably a lack of engagement and lack of communication regarding local concerns.
Neuro Hebrides was told that these changes were happening. The charity on behalf of neurological patients, was not offered any input into the decision. Neuro Hebrides only found out from a health board press release following weeks of negative stories about the changes, all of the conditions that the new advanced neurology nurse will be expected to cover.
No specialist neurology teams exist on the islands and there is not an MRI scan. People have to travel to Glasgow to see a neurologist, so specialist nurses are even more important than they are elsewhere in this rural Island setting to ensure patients receive the correct care.
On the 28th of April, after the MS Society Scotlands prompting, Donald Cameron MSP asked the Cabinet Secretary for Health during general questions, about the reduction of specialist nursing support on the Islands. In response the Health Secretary said that he welcomed the question, sought to assure Donald with the health board line that there would be no reduction in service and offered to meet anyone who still had concerns.
Humza Yousaf Cabinet secretary for Health
On the 5th July, representatives of Neuro Hebrides, MS Scotland, Parkinsons Scotland and Epilepsy Scotland, met with Humza Yousaf, Cabinet Secretary for health. The objective was to discuss the concerns about the reduction in service provision for Neurological patients, the safety implications these changes will have, and the concern regarding the lack of consultation about the changes.
The meeting was constructive and positive. Third sector representatives put across their concerns about the reduction in service, safety implications and lack of service. Individuals representing Parkinsons Scotland and Neuro Hebrides, who themselves suffer from Neurological conditions, then spoke about the detrimental affect the changes will have on their lives. These real life situations is what puts the gravity of these changes in to perspective and made such an impact.
Humza Yousaf was very appreciative of bringing the situation to his attention and stated he was not happy about the lack of consultation by the Health Board and also stated that although the initial proposal had seemed a good way forward, he heard what we were saying about the value of the specialist MS nurse and acknowledged the move represented a cut in service.
He is investigating this issue further and he will be following up the meeting with outcomes in the near future.
Neuro Hebrides will continue to campaign on this issue on behalf of all neurological patients in the Western Isles, and we will communicate any developments and news as and when we receive it.