Health Secretary Shona Robison launched Scotland’s first local Care Framework for Huntington’s Disease (HD) at Ayrshire Central Hospital today (Monday 23 April).
The launch at the Douglas Grant Rehabilitation Centre saw families affected by HD join 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 seeks to help ensure families affected by the complex neurological condition are given the best possible care, information and support regardless of where they live throughout the country.
Cabinet Secretary for Health and Sport, Shona Robison, said:
“The Scottish 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 the country. The national and international feedback on the work undertaken so far has been extremely positive, and I am delighted to visit the Douglas Grant Rehabilitation Centre today to launch the first localised version of the National Framework.
“Scottish Huntington’s Association, NHS Ayrshire & Arran and local HSCP 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, said:
“Scottish Huntington’s Association owes an enormous debt of gratitude to everyone who participated in the development of the Ayrshire & Arran Framework. Today’s 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.”
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 an extremely comprehensive and easy to use tool 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 Scottish Government, all parties in the Scottish Parliament, 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 care.hdscotland.org . The NHS Ayrshire & Arran Framework can be viewed within the “Regional Frameworks” section of the site.