The Scottish Huntington’s Association (SHA) is backing a new campaign to improve care standards for people living with neurological conditions.
The campaign has been launched by the Sue Ryder charity on the back of research that found that 63 people under 65 were being cared for by local authorities in old people’s homes.
But with only a third of councils responding, they estimate up to a 1000 people with neurological conditions could be being cared for without specialist support and rehabilitation.
The SHA is the only charity supports families living with the degenerative brain disorder Huntington’s disease.
“These figures prove conclusively for the first time that the quality of care for conditions like HD differs wildly across the country. We are currently working on national framework to try and improve consistency, but the more evidence we have to highlight that the needs of people living with conditions like HD are being overlooked the stronger our case becomes,” said SHA’s chief executive, John Eden.
HD is a progressive condition that causes changes to muscle control, thinking processes and causes long-term mental health issues. The average age of onset is between 33 and 45 and those living with the condition will require 24 hour care as it progresses into its later stages. Each child of someone diagnosed with HD is at 50% risk of developing the condition themselves. There is currently no cure.
It is estimated that there are around 1100 people living with the condition in the country with another 5000 potentially at risk.
Pamela Mackenzie, Sue Ryder’s Scottish assistant director, said:
“Now the true state of neurological health and social care services in Scotland has been revealed, we urge the Scottish government to take immediate action to address these inequalities so people with neurological conditions get the chance of a better quality of life.”
As well as HD other neurological conditions include Parkinson’s disease, multiple sclerosis and motor neurone disease.
“We are fully supportive of Sue Ryder in their calls to the government to address the care standards that families with HD and other similar conditions are forced to live with,” added John.