Large areas of Scotland are missing out on adequate services for Huntington’s disease, a degenerative brain disorder which can cause a form of early onset dementia as well as loss of muscle control and involuntary movements.
The Scottish Huntington’s Association (SHA) said only 58 per cent of people living with the disease were properly supported, as areas such as Forth Valley, the Borders and Dumfries and Galloway lacked access to specialist care.
John Eden, SHA chief executive, said: “For those living with Huntington’s disease, the level of care they can expect is a bit of a postcode lottery.
“Despite really good working relationships we’ve built up with the Scottish Government and local health and social care partnerships, there is still some way to go before everyone living with Huntington’s diseases in Scotland has access to the same standard of care.”
Many people will need round-the-clock care as the hereditary condition progresses and their families may need genetic testing as around half of children will be at risk of developing the disease.
There are about 1,100 people living with Huntington’s disease in Scotland and more than 5,000 people could be at risk of developing the disease.
Work is under way on a new framework to address inconsistencies in service provision but the campaigners believe more needs to be done to prevent the postcode lottery patients still face.
Eden said: “This new framework will go some way to address this, but political will needs to be strengthened if we are to see improvements across all areas.
“People diagnosed with Huntington’s disease should have the right to decent quality care and support wherever they live.”
Margaret Moncrieff, 71, knows only too well how important specialist care can be. Her younger sister Marion had been struggling to climb the stairs for her work as a supply teacher but the family were stunned when doctors diagnosed her with Huntington’s disease 11 years ago when she was 58.
No one in their family had been diagnosed with the condition before but they now believe that their mother may have had the gene.
After retiring on health grounds, the mother of two was introduced to a SHA adviser who helped her to access the treatment she needs.
Moncrieff, of Houston, Renfrewshire, said: “From the beginning she had this adviser who understood the awful shock of the diagnosis on everyone in the family and how to live with it.
“If you don’t have people who understand this condition then it can be really difficult.”
A Scottish Government spokesperson welcomed the report, saying it had provided £120,000 towards developing better care and research for the disease and other neurological conditions.