A call to expand specialist services for families impacted by Huntington's disease (HD) has received unprecedented cross-party support from Scotland's parliamentarians.
A motion, which followed a University of Aberdeen study, calling for more HD specialist services - tabled by Labour Deputy Leader and Shadow Health Secretary Jackie Baillie MSP - is the most supported call to action in the history of the Scottish Parliament, having secured the backing of 98% of MSPs.
The University of Aberdeen study highlighted that the number of HD cases in northern Scotland has increased by almost 50% over the last 30 years, a trend which is understood to have been broadly replicated throughout the country.
Support came from across SNP, Conservative, Labour, Green and Lib Dem parties, and included every member of the Scottish Parliament’s cross-party Health & Sport Committee. Influential supporters include Conservative leader Douglas Ross, Labour Leader Anas Sarwar, Lib Dem Leader Alex Cole-Hamilton, SNP Deputy Presiding Officer Annabelle Ewing and Green Health Spokesperson Gillian Mackay.
Huntington’s disease is a rare, hereditary, extremely difficult to manage and currently incurable neurological condition that slowly robs patients of their ability to walk, talk, eat, drink, make rational decisions and care for themselves. The combined physical, mental health and cognitive impact of the condition often results in people with the illness being dismissed as being drunk, on drugs or as general troublemakers as a result of their erratic behaviours. This can then contribute to them being overlooked for the care and support they require from people who don’t understand the condition.
To make matters worse people with the illness often have no insight into their condition, and therefore do not request help or are difficult to engage when proactively contacted with support. In areas where no specialist support is available families remain hidden and abandoned. Children become carers for their parents, all the while knowing that they have a 50% chance of inheriting the very condition they see unfolding in front of their eyes.
Professor Zosia Miedzybrodzka from the University of Aberdeen is Huntington’s Disease Clinical Lead for the North of Scotland. She said: “Huntington’s disease is diagnosed much more than it was in the 1980s, but services have not increased in proportion. The condition is complex and need is high. It is good to see such parliamentary recognition of the need to invest in services for this devastating, chronic condition with life-long impact.”
CEO of Scottish Huntington’s Association, Alistair Haw, said: “The Scottish Government backed National Care Framework for Huntington’s Disease, published in 2017, makes clear that every NHS Board area should have an HD Clinical Lead and an HD Specialist. To this day this aspiration remains unfulfilled. Where services are in place the growing demand resulting from rising cases has not been matched by an increase in resources, leaving staff at breaking point and families abandoned to fend for themselves in a system that doesn’t understand their needs.
“Huntington’s disease is a hugely complex, widely misunderstood and extremely difficult to manage condition. Specialist services are not some nice to have optional extra but an absolute necessity. Given the rise in cases over recent years a commensurate rise in specialist services is now required. The Scottish Parliament could barely have backed this proposition more resoundingly than it has. The time has come for Scotland’s health and social care providers to take heed, and act.”
Mum of two teenage children, Dr Marie Short MBE, tested positive for the gene that leads to HD when she was 19. She lives in Forth Valley, one of only two mainland NHS Board areas to have no community based HD Specialist Service. Marie wrote to local health bosses about the lack of such a service days after she first moved to Forth Valley 18 years ago. Marie, her family and other families in Forth Valley are still waiting. (Full case study in notes to editors).
Marie said: “My family members in Fife have a dedicated, community-based HD Specialist who knows them all very well and understands what is needed and when. She is proactive, providing the early interventions required to prevent crisis situations from materialising.
“I can’t understand why there has been so little progress in Forth Valley over the past 18 years compared with other parts of Scotland, especially when it makes sense to help people to live at home for as long as possible and reduce the risk of crisis situations and acute hospital admissions. Failing to provide an HD Specialist Service is a classic example of a false economy.
“I know my mental and physical health will deteriorate and my family will need support, and I know there are other families in Forth Valley right now who have struggled for years without specialist services. For as long as I’m able, I’ll continue to demand a better standard of care for every HD family.”
Jackie Baillie MSP, who tabled the motion, said: “I am delighted that this motion has achieved a historic level of cross party support. The Scottish Government must listen to parliament and ensure that specialist services for families impacted by Huntington’s disease are expanded without delay.
“Huntington’s disease is a rare and extremely difficult to manage condition. It has a huge impact on both the mental and physical health of those who have it, and the loved ones who care for them. Work by Scottish Huntington’s Association to fight for greater support for those impacted by HD is truly life changing. They deserve the full backing of government.”