The Press and Journal (Aberdeen and Aberdeenshire)
MSPs unite to demand experts in devastating disease across north
Acall to expand Huntington’s disease specialists to Orkney, Shetland and the Western Isles has received record levels of support amid a surge of cases in northern Scotland.
Diagnoses of the neurological condition, which has no cure, have increased by almost 50% over the last 30 years – making the north and north-east a global hotspot.
Research done by Aberdeen University has found the genetic disease is five times more common in the area than the worldwide average.
A motion tabled at Holyrood has seen 99 MSPs agreeing services need to be expanded.
While there are specialists in NHS Grampian and NHS Highland areas, island communities remain without the support despite a Scottish Government commitment.
Huntington’s is incurable and gradually robs patients of their ability to walk, eat, talk and make decisions for themselves while developing involuntary movements.
The combined impact can lead to some being dismissed as being drunk, on drugs or as troublemakers due to their erratic behaviour.
As the condition progresses they become more reliant on care, eventually requiring 24/7 support.
Symptoms usually start between the ages of 30 and 50 but can be earlier or later and it is usually fatal 10 to 20 years after the first signs develop.
Parents have a 50% chance of passing the Huntington’s gene to their children.
The Scottish Huntington’s Association (SHA) has been campaigning for every area in the country to have a specialist.
Without specialist support, children become carers for their parents while knowing they have a chance of inheriting the disease.
A Scottish Governmentbacked framework in 2017 committed to ensuring every NHS board area had dedicated staff.
Four years on, Shetland, Orkney, the Western Isles, Forth Valley and the Borders remain without a dedicated Huntington’s specialist.
Alistair Haw, chief executive of the SHA, 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.
“Huntington’s disease is a hugely complex, widely misunderstood and extremely difficult-tomanage 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.”
Labour deputy leader Jackie Baillie’s motion calling for NHS boards and health and social care partnerships to expand Huntington’s care has been signed by 99 MSPs – 98% of eligible members due to government ministers and
the presiding officer not backing them by convention.
About one in 5,000 people in Scotland have Huntington’s disease with 1,100 Scots diagnosed and a further 4,000 to 6,000 at risk of inheriting it.
Professor Zosia Miedzybrodzka, from Aberdeen University, who is Huntington’s disease clinical lead for the north of Scotland, said: “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.”
Ms Baillie said: “The Scottish Government must
listen to Parliament and ensure that specialist services for families impacted by Huntington’s disease are expanded without delay.”
A Scottish Government spokeswoman said: “Since 2015 we have committed over £500,000 in funding to the Scottish Huntington’s Association towards the development of a national care framework for HD and in funding to support the organisation’s specialist support services and initiatives to raise awareness of the condition.
“The minister for public health recently met with the organisation to discuss the motion and issues regarding HD (Huntington’s disease) care and services in Scotland.”