Have we got the nerve?

John reflects on the development of a National Action Plan for neurology.

Last year, a call came out through the Neurological Alliance of Scotland for members to take part in a working group whose task was to understand the lived experience of people with a neurological condition. I was immediately interested for two reasons: my charity, Scottish Huntington’s Association had just completed a big piece of work in which we had identified seventeen core themes that people with Huntington’s disease had told us mattered most to them (http://care.hdscotland.org/ this link will take you away from our website), secondly I have long been fascinated by the challenge of planning services for people with the diverse range of neurological conditions. How do you develop a national strategy for people living with thunderclap headache that also meets the needs of people with Huntington’s disease? It’s a topical question as Scottish Government is, right now, trying to write a national action plan for neurology and I think the diversity and complexity of neurological conditions has previously been a significant barrier.

I loved my time as part of the working group; it is always energising to be part of a team who share the same values and passion to ensure the voice of people who have a neurological condition, their carers and families, is heard. In a remarkably short span of time we collected a large amount of data from existing reports, focus groups and a large national survey which gathered over five hundred responses. The themes that emerged were identical to the ones people with Huntington’s disease articulated: getting a timely diagnosis, accessing support for symptoms and the wider difficulties a condition causes, access to specialist advice and information, having someone to coordinate care across the health and social care system and over the duration of the condition, access to supported self-management, isolation. I cannot do justice here, to all the issues that emerged, but there were many occasions when reading about someone with ME, MND or MS when their experience of getting support was uncannily similar to people with HD.

My experience crystallised my belief the neurological community needs to map out the needs of people with different neurological conditions and better understand the similarities and differences between them and I am pleased that the Scottish Government has supported this idea and over the next year we want to work with neurological community, using the framework developed for Huntington’s disease to engage in an exercise of ‘neurological cartography’. If successful we will have a resource that can be used by Scottish Government, NHS, Health and Social Care Partnerships, Third Sector and funding organisations to better plan services and direct resources to where they are most needed. Perhaps most importantly of all, and like any map, it can stimulate debate on the best way to get to the destination of a robust neurological action plan for Scotland.

I already have some ideas about what we might learn on this journey. There is great inequity in access to resources and support for different neurological conditions and perhaps inevitably, rarer neurological conditions generally face the greatest barriers; that really needs to change. There isn’t enough cross condition planning and there seems to me far greater scope for neurological charities and statutory organisations, supporting people with different conditions to collaborate. We need to accept, while some conditions have much in common, others do not and a single neurological action plan that tries to address the entire range of conditions isn’t an achievable goal. Instead we need to use our mapping process to group conditions where there is a genuine benefit to doing so and ensure each ‘cluster’ of conditions has its own plan or at least its own subsection within the overall action plan for neurology. In my view, this would take us much closer to a meaningful and achievable plan that can really make a difference.

My thanks goes to my fellow working group members for making the experience so enjoyable and particularly to Audrey Birt who led the group so effectively and Gregory Hill O’Connor for pulling together all the information into a well written report.

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