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  • Writer's pictureKenneth Gibson MSP

NHS Ayrshire & Arran Leads Ground Breaking Initiative in Huntington's Disease

Health Secretary Shona Robison has launched Scotland’s first local Care Framework for Huntington’s Disease (HD) at the Douglas Grant Rehabilitation Centre.

Families affected by HD joined health and social care staff to welcome NHS Ayrshire & Arran becoming the first board in Scotland to roll out its own localised version of the internationally acclaimed Framework.

The Framework helps ensure families affected by the complex neurological condition are given the best possible care, information and support regardless of where they live.

Cabinet Secretary for Health and Sport, Shona Robison MSP said:

The SNP Government provided the Scottish Huntington’s Association with funding and support to develop a National Care Framework for HD and begin the process of rolling it out across Scotland.

National and international feedback on the work undertaken so far has been very positive.

Scottish Huntington’s Association, NHS Ayrshire & Arran and local staff have embraced this opportunity and worked hard to drive improvements in standards of care and support for individuals and their families affected by this disease.”

Chief Executive of the Scottish Huntington’s Association, John Eden, added:

Scottish Huntington’s Association owes an enormous debt of gratitude to everyone who participated in the development of the Ayrshire & Arran Framework.

This launch is a huge vote of confidence in their work. Together they have added to a momentum that will lead this project to success the length and breadth of Scotland and, hopefully, beyond.”

Kenneth Gibson MSP commented:

I am delighted to see NHS Ayrshire & Arran lead the way on delivering an initiative that will greatly improve the quality of life of families impacted by HD and look forward to it being rolled out across Scotland and beyond.

Consultant Psychiatrist and Huntington’s Disease Lead Clinician for NHS Ayrshire & Arran, Dr Tim Johnston, said:

It has been a great pleasure to work with local health and social care staff and families to develop Scotland’s first local Care Framework for HD.

The Framework is designed to guide health and social care staff and empower families. It is comprehensive and easy to use that I am confident will help to further improve care and support provided to HD families over time.”

Non-Executive Director of NHS Ayrshire & Arran, Bob Martin, said:

This is an excellent example of how working together in partnership can ensure that people receive the specialised care and support they need. We are proud to lead the way for other Boards in Scotland by launching a local Care Framework for Huntington’s Disease.”

The HD Care Framework has been supported by the SNP Government, the National Advisory Committee for Neurological Conditions, NHS Boards, Health & Social Care Partnerships, health & social care staff, professional bodies, HD family members, academics and national and international third sector partners.

The National Framework can be viewed at

The NHS Ayrshire & Arran Framework can be viewed within the “Regional Frameworks” section of the site.



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