However help is on its way. With funding and support from the Scottish Government, the Scottish Huntington’s Association has led on the development of a draft National Care Framework for HD to help guide health & social care providers and staff, and empower patients and carers.
The draft framework – the first of its kind in the world -
What’s more it is our hope that the framework will be of wider benefit by acting as a model of support for people affected by other conditions to in due course follow, throughout Scotland and internationally.
We are absolutely determined to make a success of this opportunity, but need the help of your readers. If you are a health and social care professional or provider, or a member or carer of an HD family, your views on the draft framework would be absolutely invaluable.
Please visit http://hdscotland.org/careframework or call 0141 848 0308 prior to 9 December to help shape this unique opportunity to changes people’s lives for the better.
John Eden
Chief Executive
The Scottish Huntington’s Association
Business First
Linwood Point
Paisley
Sir,
Huntington’s Disease (HD) is a rare, hereditary, incurable and ultimately fatal condition
that affects the brain and central nervous system. The disease slowly robs a person
of their ability to walk, talk, eat, drink, understand and care for themselves. 1100
people have been diagnosed with HD in Scotland, with a further 4000-
Due to the rarity and complexity of HD, health and social care providers are all too often at a loss about how to properly assist families with the condition.
Letter: Developing a national care framework for Huntington’s Disease
22 November 2016