Call to expand specialist services for Huntington's disease welcomed by Falkirk campaigner

Dr Marie Short MBE, who tested positive for the gene which causes HD when she was 19, originally wrote to local health bosses about the lack of a community based HD specialist service in Forth Valley 18 years ago, days after she moved here.

However, her family and other families in the region are still waiting.

Last week a motion calling for more HD specialist services secured the backing of 98 per cent of MSPs – becoming the most supported call to action in the history of the Scottish Parliament.

Despite this political support, Dr Short has said she will continue to campaign for improved services for families.

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.”

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.

In areas where no specialist support is available families remain hidden and abandoned with children becoming carers for their parents, knowing they have a 50 per cent chance of inheriting the condition they see unfolding in front of their eyes.

The motion – tabled by Jackie Baillie MSP – followed the publication of a University of Aberdeen study highlighting that the number of HD cases in northern Scotland has increased by almost 50 per cent over the last 30 years, a trend which is understood to have been broadly replicated throughout the country.

Alistair Haw, CEO of Scottish Huntington’s Association, 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.

"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.”

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