Highland Framework launched at Raigmore Hospital

Highland has become the seventh NHS Board area to formally launch a localised version of the National Care Framework for HD. The launch was held in the Centre for Health Science at Raigmore Hospital, Inverness.

Claire Wood, Associate Director, Allied Health Professionals, NHS Highland: “It’s fantastic to see families and staff from all across Highland coming together to shape this excellent tool. Whether you are a Huntington’s disease family member of a member of health and social care staff, you need to know about Huntington’s and its treatment is available within this excellent framework. I would encourage anyone with an interest in Huntington’s disease to make use of this to shape care and support for the better. I am delighted to formally back the framework on behalf of NHS Highland and wish it every success.”

Highlands and Islands MSP Donald Cameron also addressed the launch via video link from the Scottish Parliament. He said: “When I became an MSP the first motion I tabled was welcoming the National Care Framework for Huntington’s Disease and encouraging MSPs from across all parties to get behind it. As a Highlands and Islands MSP I’m particularly pleased that Highland now has its own localised version that’s been developed by local families as well as health and social care staff. I’m encouraged to hear there has been interest amongst the international Huntington’s community, and also here at home in terms of it being a potential model for other neurological conditions. A huge thanks to everyone who has made this a reality, and I wish it every success for the future.”

Professor Zosia Miedzybrodzka, University of Aberdeen Professor of Medical Genetics, Consultant in Clinical Genetics and HD Clinical Lead for NHS Highland, said: “The north of Scotland has amongst the highest recorded prevalence of Huntington’s disease in the world, and was one of the first places to have specialised clinics and healthcare for Huntington’s disease. Having led clinics for families across the north of Scotland for 10 years I am aware of how complex needs of these families are. This framework brings together local information with professional guidance to let health and social care staff know what care is required, and when. The comprehensive and easy-to-use framework will help staff and families throughout Highland and Argyll & Bute to access available services for all the different aspects of Huntington’s disease care. We are delighted that this new tool will be available to help all NHS Highland Huntington’s families to get the best available care and to access world-leading research into the condition.”

The National Framework can be viewed at care.hdscotland.org. The Ayrshire & Arran, Fife, Grampian, Lanarkshire, Lothian, Greater Glasgow & Clyde, Highland, Forth Valley and Tayside frameworks can be viewed within the “Regional Frameworks” section of the site.

Work is ongoing to finalise local Frameworks for Dumfries & Galloway and Scottish Borders.

Published: December 2019