The Grampian Care Framework for Huntington’s Disease has been recognised at a formal launch event in Aberdeen.

The launch in Aberdeen University’s Suttie Centre saw families affected by HD join health and social care staff to welcome Grampian rolling out its own localised version of the Scottish National Care Framework for HD. Families and staff from Moray, Aberdeenshire & Aberdeen City were present at the launch.

Consultant Clinical Geneticist and Huntington’s Disease Lead Clinician for NHS Grampian, Prof. Zosia Miedzybrodzka of University of Aberdeen, was a key member of the advisory groups that developed the Scottish National and Grampian Frameworks. Speaking at the launch Prof. Miedzybrodzka said:

“It is a great pleasure to be part of the team developing this ground breaking Framework. It is designed to guide health and social care staff and empower families impacted by this uncommon, complex condition. The comprehensive and easy to use framework will help staff and families throughout Moray, Aberdeenshire & Aberdeen City to access available services for all the different aspects of HD care. The North of Scotland has amongst the highest recorded prevalence of HD in the world, and was one of the first places to have specialised clinics and healthcare for HD. We are delighted that this new tool will be available to help all NHS Grampian HD families to get the best available care and to access world-leading research into the condition.”

Lewis Macdonald, MSP for North East Scotland, Convener of the Scottish Parliament’s Health & Sport Committee and a former Minister for Health said:

“It was a pleasure to have been involved in the launch of the NHS Grampian Care Framework for Huntington’s Disease today. The National Framework has secured widespread support throughout Scotland and it’s great to see Grampian being one of the first to develop its own localised version. I look forward to working with the Scottish Huntington’s Association and local HD staff to help raise awareness of this terrible condition and improve support for those impacted by it through the use of this ground breaking Framework. I would strongly encourage families and staff to make use of this Framework to help drive up standards of care and support.”

Cllr Louise Laing, councillor for Speyside Glenlivet and member of the Moray Integration Joint Board, is a member of a Huntington’s disease family. Speaking at the launch she said:

“I’m delighted to see the roll out of the Framework here in Grampian. Huntington’s disease is such a complex disorder, and terrifying for families affected.  The National Care Framework is designed to offer much needed support not only to families but to health and social care staff too. I look forward to using it and working with the recently launched Moray Huntington’s Disease Support Group and all interested parties throughout the area to help drive up care and support for families.”

The National Framework can be viewed at care.hdscotland.org  . The Grampian, Fife and Ayrshire & Arran Frameworks can be viewed within the “Regional Frameworks” section of the site.

Frameworks for Lanarkshire, Lothian and Greater Glasgow & Clyde will go online shortly.

Work is underway to develop Frameworks for Highland, Forth Valley and Dumfries & Galloway.