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World’s first National Care Framework for Huntington’s disease launched

Cabinet Secretary for Health and Sport announces £60,000 boost for additional year’s work

An event in the Scottish Parliament marking the formal launch of the National Care Framework for Huntington’s Disease (HD) has welcomed a £60,000 boost that allows the project to continue into its next phase of local implementation.

Huntington’s Disease (HD) is a rare, hereditary and life limiting neurodegenerative condition that causes severe motor changes, mental illness and impaired cognition and for which there is currently no cure. The National Care Framework seeks to help ensure families affected by the condition are given the best possible care, information and support regardless of where they live in Scotland.

The Framework – the first of its kind in the world – has been widely welcomed as having the ability to transform care for people with HD. It was developed by a multi-disciplinary expert group led by the Scottish Huntington’s Association, with funding and support provided by the Scottish Government.

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

“In 2015 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 therefore delighted to announce an additional £60,000 allowing the work to move forward.

“From the outset we were hopeful that the HD Framework could have the potential to be used as a template for other neurological and long terms conditions. Widespread feedback from stakeholders representing such conditions appears to have borne this out. We look forward to seeing how this exciting prospect develops, and are pleased to continue working with the Scottish Huntington’s Association and others to make this a reality.”

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

“Our aspiration was to undertake a transformational piece of work that would set out a flexible and accessible model of health and social care for families affected by HD. Given the extremely complex nature of the disease this was a sizeable challenge. However what has and will sustain us is the energetic engagement of hundreds of HD family members and professional staff from every imaginable discipline throughout Scotland and indeed beyond.

“Scottish Huntington’s Association owes an enormous debt of gratitude to everyone who participated in the development of the Framework. Today’s funding boost is a huge vote of confidence in their work. Together we have created a momentum that will carry this project into its most important phase: improving the way services are delivered to families affected by this appalling condition. We are determined to do exactly that.”

The HD Care Framework has been supported by the Scottish Government, all opposition parties, the National Advisory Committee for Neurological Conditions, NHS Boards, HSCPs, health & social care staff, professional bodies, HD family members, academics and national and international third sector partners. It can be viewed here: http://care.hdscotland.org/

Today’s event in the Scottish Parliament was hosted by Scottish Conservative & Unionist MSP for South of Scotland, Brian Whittle. The event comes during HD Awareness Week 2017 (15 – 21 May).

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