Health campaigners in Moray are celebrating a breakthrough in the support for Huntington’s Disease in the region.
A specialist nurse has been recruited by Health and Social Care Moray to help patients with the genetic condition.
Affected people previously had to travel to Aberdeen to receive advice from professionals about how to manage the effects of the incurable disease, which causes uncontrolled movements and emotional problems.
Families from across Moray banded together a year ago to form a support group to drive forward improvements in their care.
John Savage, from Lhanbryde, whose wife Margaret has been battling Huntington’s symptoms for 30 years, said: “Getting this type of change shows that we are definitely making a difference.
“It’s such a complex disease, no two people are affected by it the same way so it really needs that one-to-one support and relationship to get the best results.
“It is a step in the right direction. We could still probably do with more though, with all the demand.”
Since forming, the Huntington’s Disease group in Moray has grown to become one of the most active of its kind in Scotland with more than 20 patients and families regularly attending to share experiences.
The north-east has become known as a “hot spot” for the incurable illness, which gives sufferers a 50% chance of passing it on to their children.
It is understood the new nurse for the region, who will also work with Parkinson’s cases, will spend one day a week working with patients as part of a trial period, which will be reviewed after 12 months.
John Eden, chief executive of the Scottish Huntington’s Association, praised the work done by families in Moray to drive improvements for patients.
He said; “I’m delighted for them that such positive progress is being made to improve the support available to them.
“I’m very proud of the local families who have been wonderful advocates and worked very hard to engage with the health and social care partnership in Moray to achieve this outcome.
“I’m also encourage by the constructive working relationship we have developed with the senior officers of the partnership with whom we continue to work to achieve the best outcome.”
