Scots woman hopes MSP backing leads to more specialist services for incurable disease

A Polmont woman's hopeful after unprecedented support in Holyrood for more specialist services for those with Huntington's Disease.

A motion 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.

Dr Marie Short MBE has been calling for improved services for those living within the NHS Forth Valley for 18 years.

Nine Scottish health boards have community based HD specialists, while NHS Forth Valley currently has a hospital based neurology nurse.

Four other NHS Scotland boards have no HD service.

Earlier this year, a University of Aberdeen study found 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.

"False Economy"

Mum of two Marie, tested positive for the gene that leads to HD when she was 19.

She 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.”

"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.

"I am really worried about HD families who are being left to make relentless and difficult decisions without anyone to discuss them with.

"Then there’s my children, who as teenagers can ask for support from SHA’s Youth Service right now. But what happens in a few years when they are older? I don’t want them having to go through testing without an HD Specialist guiding them.

"For as long as I am able, I’ll continue to demand a better standard of care for every HD family in Forth Valley and across Scotland. As someone who will develop Huntington’s disease, as a mother of two teenage children at risk of the disease, and as a Trustee of Scottish Huntington’s Association, I can do no other."

HD Services aspirations remain "unfulfilled"

CEO of Scottish Huntington’s Association, Alistair Haw tells us why they feel it's vital more specialist services are rolled out.

He 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 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.