New service for Huntington’s Disease sufferers

A new service is being set up to help people in Renfrewshire and across the Clyde Valley, who suffer from Huntington’s disease (HD).

Renfrewshire Council is joining forces with East Renfrewshire Community Health and Social Care Partnership (CHCP), West Dumbarton CHCP, Inverclyde CHCP and East Dunbartonshire Council to fund the service which is being provided by the Scottish Huntington’s Association (SHA). Each body is contributing £8,000.

The SHA already provides a network of specialists throughout Scotland and the new local service will include; carrying out assessments and one to one support in the home, training and help through support groups.

Huntington’s Disease is a progressive illness which damages the brain, leading to a steady deterioration in muscle co-ordination and mental abilities. The damage also causes behavioural and mental health changes. There is presently no cure for HD and those living with the condition will require full-time care in the later stages of the illness.

Councillor Iain McMillan, Convener of Renfrewshire Council’s Social Work, Health and Wellbeing Policy Board, said, “Huntington’s Disease can have a devastating impact on families due to the fact that it is an inherited disease. There are the obvious, debilitating effects for the person with the condition but their children also have to live with the knowledge that they might develop the illness too.

“The new service will help provide people living with HD and their families with the emotional support they need while also making sure they have the information and coping strategies to manage their condition in the long-term.

“By working together, the local authorities of the Clyde Valley are providing an important service for people which taps into the experience and expertise of the Scottish Huntington’s Association.”

SHA is the only charity in Scotland working directly with HD families.

John Eden, Chief Executive of the Scottish Huntington’s Association, said, “Since we started back in 1989 our most important goal has been to establish specialist support services across Scotland. Securing this funding takes us one step closer to achieving this goal.

“Step by step we are steadily rolling out our services to more and more families whose lives have been blighted by HD.

“We will now be able to deliver our lifeline support to around another 240 families living with the condition in Clyde Valley area.”

Huntington’s is hereditary with children having a 50% chance of inheriting the disease. The Clyde Valley has one of the highest populations of people living with Huntington’s disease of any area in Scotland.

The physical symptoms of Huntington’s disease can begin at any age from infancy to old age, but usually start between 33 and 45 years old. The disease may develop earlier in life in each successive generation.

Symptoms vary between individuals, and even among family members, but they usually follow a predictable course. The earliest symptoms are often subtle problems with mood or reasoning.

A general lack of coordination and an unsteady gait often follows. As the disease advances, uncoordinated, jerky body movements become more apparent, along with a decline in mental abilities and growing behavioural and psychiatric problems. Over time coordinated movement becomes increasingly difficult and mental abilities generally decline.

The life expectancy for people with Huntington’s Disease is approximately twenty years after symptoms start to be apparent. There is no cure for Huntington’s and full-time care is required in the later stages of the disease.