Agencies in Ayrshire have joined together to develop a new approach to support families living with the degenerative brain disorder Huntington’s disease (HD).
Ayrshire currently has 48 families affected by the condition including the majority of the country’s cases of the much rarer form of the disease, Juvenile HD.
Total cases of HD have risen by 13% in the area over the past three years.
As a response to this rise and to deliver a more consistent approach to care, the Scottish Huntington’s Association has teamed up with NHS Ayrshire and Arran, Ayrshire Hospice, North, East and South Ayrshire Councils and the West of Scotland Genetics Service to develop a new ‘Care Pathway’ that will dramatically improve support to HD families.
The launch was attended by more than 40 health care professionals at Ayr Hospital.
“The aim of the Care Pathway programme is to give guidance and advice to the range of healthcare professionals involved in caring for families affected by HD. This will ensure clear guidelines of best practice ensuring everyone can expect the same standard and quality of support while retaining the flexibility to adapt to each family’s individual needs,” said SHA chief executive, John Eden.
HD is a hereditary progressive condition that causes changes to muscle control, thinking processes and may cause long-term mental health issues. The average age of onset is between 33 and 45, there is currently no cure for HD. Those living with the condition will require 24 hour care as it progresses into its later stages and each child of someone diagnosed with HD is at 50% risk of developing the condition themselves.
Symptoms of the juvenile form of HD begins before the age of 20.
Prevalence of Huntington’s disease has increased threefold in the last twenty years. There are estimated to be 1100 people in Scotland living with the condition but as many as 5000 could be potentially at risk.
SHA is the only charity in the country that works with families affected by the disease providing lifeline services, including specialist nurses and the world’s only HD youth support service.
NHS Ayrshire and Arran clinical psychiatrist Dr Tim Johnston was closely involved in the development of the project.
“The impact of HD on the wider family is truly devastating. It is not just the person initially diagnosed that is affected. Within the wider family diagnosis can impact on a whole variety of life choices for those potentially at risk. This Care Pathway is another step towards improving the quality of life for families living with this condition,” he said.