John Eden of the Scottish Huntington's Association on the need for specialist nurses.
I have followed, with great admiration, Gordon Aikman’s campaign to increase the number of specialist nurses for people affected by motor neurone disease (MND), in Scotland.
Rarely, in the world of neurology, has one individual had such a profound impact on the way that health services are provided.
Gordon’s campaign levered £700,000 of funding from a pot of £2.5 million ring-fenced for specialist nurses. He was focussed, had experienced first-hand how profoundly important this vital group of staff is, and his campaign had the authority that only comes with a personal experience of living with a neurological illness. That’s when you know what really makes a difference.
My interest in neurology has been professional rather than personal, but, over the last 25 years, I have worked in a number of specialist roles as both a nurse and a social worker.
I care deeply about people living with Huntington’s disease (HD). I could use many superlatives to describe the condition; cruel, devastating, dehumanising.
specialist health and social care staff are the most important element in providing good support
John Eden
Until you have to face the enormity of losing your muscle functions (speech and swallowing), your cognitive abilities (capacity to make decisions, solve problems) and very likely experience significant psychiatric illness, it’s hard to even begin to imagine.
Huntington’s disease is a genetic condition with a 50% chance of inheritance and what arguably makes it the worst of the neurological conditions is its power to tear through one generation of a family after another.
All of the neuro-progressive conditions - multiple sclerosis, Parkinson’s disease, MND - impact on every aspect of a person’s life and they are all devastating.
So while the Scottish Government is making big strides in improving some areas of care, their response this week to Sue Ryder research highlighting the gross inequalities in specialist care nurses for this group, shows much more still to be done.
My charity has very consciously engaged with families living with HD to find out what matters most to them about the support and services they need and want. It is inescapable that people living with the condition identify their specialist health and social care practitioner (we don’t just have nurses working in this role) as their lifeline. Why do they identify specialist staff as so important?
Why does Gordon place such a high value on this type of support, and why do those living with every other neurological condition echo that view?
I have learned from people living with neurological conditions that there are three key reasons.
The first is the incredible confidence that it gives to know that the person who is supporting you really understands your condition. Neurological conditions are complex and it takes those working in the field years to gain the necessary experience to be effective practitioners; it is impossible for general health or social care staff to have a good enough level of knowledge to provide effective support.
The second reason is about relationships. Many neurological conditions are long-term in nature or, like MND, require intensive support over a number of years. That requires a huge degree of trust and consistency. We must also never forget that for family members in a caring role, the relationship with a specialist can make a significant difference to their ability to cope.
The third reason is about flexibility. Our health system is very process and task driven and that works very well for many conditions, but in neurology often the biggest challenges are about the quality of life of people living with them and it requires imagination, commitment and hard work to make a difference.
Specialist health and social care staff are passionate about what they do and will go the extra mile to make sure that the people they support get what they need.
Having been around for 25 years in this field of work, I have been part of the discussion about specialist staff for a long time – too long it feels. It is long past time that we listen to the voices of people living with neurological conditions; as a chorus they are clearly telling us that specialist health and social care staff are the most important element in providing good support.
It is a cause for celebration that Gordon Aikman’s campaign has secured better support for people living with MND, but it is only fair that people living with other neurological conditions enjoy the same quality of care.
John Eden is chief executive of the Scottish Huntington’s Association.
