Scottish Parliament Supports Motion for Expanded Specialist Services

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by Mary Chapman |

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A motion to expand specialist services for families in Scotland affected by Huntington’s disease (HD) received what’s being hailed as a historic level of cross-party support in the Scottish Parliament.

Backed by 98% of members of the Scottish Parliament (MSPs), the call to action is said to be the most supported in the country’s parliamentary history, according to a press release by the University of Aberdeen.

The motion followed a recent study by the university that found that Huntington’s cases in northern Scotland increased by nearly 50% over the last 30 years. Across the region, 14.6 of every 100,000 individuals have been diagnosed with Huntington’s and are noticeably symptomatic, according to the study, which was published in the Journal of Neurology. By contrast, that figure 36 years ago was 9.94 per 100,000.

Current rates are among the world’s highest, the University of Aberdeen said in its study announcement.

“Huntington’s disease is diagnosed much more than it was in the 1980s, but services have not increased in proportion,” said Zosia Miedzybrodzka, PhD, a professor at the university and the HD clinical lead for the North of Scotland. “The condition is complex and the need is high. It is good to see such parliamentary recognition of the need to invest in services for this devastating chronic condition with lifelong impact.”

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MSP Jackie Baillie, who introduced the motion, said she was “delighted” with the level of cross-party support for the call for more healthcare providers who specialize in treating the rare neurodegenerative condition. HD is characterized by uncontrolled movements, loss of cognitive ability, and psychiatric problems.

However, more work needs to be done to raise awareness and knowledge of the disorder, she and other backers say.

Largely due to the disorder’s complex nature, Huntington’s is often misdiagnosed or misunderstood. In areas of Scotland where no specialist support is available, families are “hidden and abandoned,” the press release states.

“The Scottish government must listen to parliament and ensure that specialist services for families impacted by Huntington’s disease are expanded without delay,” said Baillie, calling the disorder “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,” Baillie said. “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.”

Alistair Haw, CEO of the Scottish Huntington’s Association, said Scotland’s National Care Framework for Huntington’s Disease — published in 2017 and backed by the government — sets forth guidance that still has not been met.

That framework “makes very clear that every NHS [National Health Service] Board area should have an HD clinical lead and an HD specialist. To this day, this aspiration remains unfilled,” Haw said. “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.”

Miedzybrodzka said the current variation in the prevalence of the disease could have major treatment cost and service implications. Work needs to be done to gather accurate population-based data, she said. Haw, for his part, wants action.

“Specialist services are not some nice-to-have optional extra, but an absolute necessity,” Haw said. “Given the rise in cases over the 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.”