Have your say on Huntington’s care

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 to 6000 at risk of inheriting this appalling condition from their parents.

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. 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 healthand and social care providers and staff, and empower patients and carers.

The draft framework — the first of its kind in the world — presents Scotland with a unique opportunity to significantly drive up care and support for HD families.

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 December 9 to help shape this unique opportunity to changes people’s lives for the better.