The Scottish region of Fife has launched one of the world’s first local care frameworks for Huntington’s disease, putting local staff and families at the forefront of work to help those with this neurodegenerative disease.
The launch, at Victoria Hospital, saw families affected by Huntington’s join health and social care staff to welcome the region into becoming one of the first areas in the country to roll out its own localized version of the internationally recognized Scottish National Care Framework for Huntington’s.
The Fife Care Framework is designed to help families affected by Huntington’s receive comprehensive care, including information and support, regardless of their location in the country.
Specifically, the Care Framework offers information to help patients decide whether to have a genetic test; guidelines for symptoms and associated difficulties; information and advice about obtaining support, employment and financial assistance; advice about having a family; and support for younger patients, parents, and caregivers.
“The Framework is designed to guide health and social care staff and empower families. It is an extremely comprehensive and easy to use tool that I am confident will help to further improve care and support provided to HD families over time,” Michael Armanyous, consultant psychiatrist and Huntington’s disease lead clinician for National Health Service (NHS) Fife, said in a news release.
“In Fife we are very fortunate to have a Lead Clinician for HD, dedicated HD Specialists, HD Youth Workers and Specialist Financial Advisers plus a whole team working round about them to deliver the care and support that people with Huntington’s disease and their families require. In launching the Framework we hope to kick start further improvements to our services and lead the way for providers throughout Scotland to follow,” added Nicky Connor, associate director of nursing for Fife Health and Social Care Partnership.
According to Shona Robinson, Member of the Scottish Parliament and cabinet secretary for health and sport, this framework has the potential to transform care for people with Huntington’s disease.
Several institutions and governmental actors were involved in the development of the Care Framework, including the Scottish government and the Scottish Huntington’s Association.