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A National Care Framework for Huntington’s Disease

scottish huntingtons association SHA support from scottish government

The Scottish Government provided the Scottish Huntington’s Association (SHA) with funding and support to lead on the development of a National Care Framework for HD 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 is designed to evolve over time as and when evidence and/or health and social care personnel, services and structures change, to prevent it from becoming obsolete. The current version can be viewed HERE.

The Framework was pulled together by a development group representing all parties who have an interest in making the document as comprehensive and successful as possible. The group includes representatives of HD families and carers, psychiatry, psychology, neurology, neuropsychology, genetics, rehabilitation, dentistry, GPs, speech and language therapy, dietetics, physiotherapy, occupational therapy, care homes, palliative care, social work and academic and research institutions.

Further to the publication of the National Care Framework at the beginning of 2017 our aim is to develop more detailed localised frameworks for each health board area thereafter. We expect these to be in place by early 2019.

The development of this Framework – the first of its kind in the world – presents Scotland with a unique opportunity to significantly drive up health and social aspects of care and support provided to HD families throughout the country. The Scottish Huntington’s Association is absolutely determined to make a success of this opportunity on behalf of the hundreds of families who have had this appalling disease visited upon them.

For further details on this work please contact:

Alistair Haw
National Care Framework Lead
Scottish Huntington’s Association
Business First
Linwood Point
Tel: 0141 848 0308
Mob: 07736 457247

Timeline of key developments

October 2015 – Scottish Government teams up with SHA
The Scottish Government has awarded a £120,000 grant to the Scottish Huntington’s Association (SHA) to develop a new national care framework for people with Huntington’s Disease (HD).
Read more.

January 2016 – National Care Framework Lead appointed
The Scottish Huntington’s Association has appointed a National Care Framework Lead. Alistair Haw joins SHA from Prostate Cancer UK, where he led the charity’s award winning communications and public affairs work in Scotland.
Read more.

May 2016 – Membership of National Care Framework Development Group confirmed
Further to a period of consultation with key stakeholders The Scottish Huntington’s Association (SHA) is delighted to announce the membership of the National Care Framework Development Group.
Read more.

June 2016 – Parliament unites behind HD National Care Framework
MSPs from across the political divide have united behind the Scottish Huntington’s Association’s work to deliver a National Care Framework for HD families.
Read more.

September 2016 – Development Group agrees draft text of Care Framework
The HD National Care Framework Development Group has agreed on a draft document to go out to the first phase of consultation.
Read more.

October 2016 – National Care Framework consultation opens
The consultation on the draft National Care Framework for HD is now open.
The Framework can be viewed in two formats: 1) Text only version and 2) Interactive online version.
Read more.

November 2016 – Minister urges involvement in Care Framework consultation
Scottish Government Minister for Public Health & Sport, Aileen Campbell MSP, has called on health & social care professionals, NHS Boards and social care providers throughout the country to get involved in the consultation on the National Care Framework for Huntington’s Disease.
Read more.

December 2016 (1) – National media coverage promotes Care Framework consultation
We are grateful to The Herald for covering an article highlighting the draft National Care Framework for HD and encouraging readers to get involved in the consultation prior to 9 December.
Read more.

December 2016 (2) – Consultation receives strong and positive response
The Scottish Huntington’s Association was extremely grateful to receive around 120 responses from HD family members, NHS Boards, Health & Social Care Partnerships, Integration Joint Boards, Royal Colleges, health & social care professionals, academics and third sector organisations (from Scotland and indeed beyond).
Read more.

February 2017 – Development Group approves launch version of Framework
The Development Group has signed off a launch version of the National Care Framework further to changes made following the extensive public consultation.
Read more.

March 2017 – National Care Framework goes live!
The National Care Framework for HD has been published, and can be viewed and used to improve care and support for HD families at
Read more.

May 2017 – National Care Framework formally launched at Holyrood reception
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.
Read more.

January 2018 – First three regional Frameworks go live!
Phase 1 of the Care Framework localisation process is now complete. Localised Care Frameworks are now in place for Ayrshire & Arran, Fife and Grampian. These can be accessed via the “Regional Frameworks” section of the site.
Read more.

April 2018 – Health Secretary formally launches Care Framework for Ayrshire & Arran
The launch at Ayrshire Central Hospital’s Douglas Grant Rehabilitation Centre saw families affected by HD join health and social care staff to welcome Ayrshire & Arran becoming the first area in Scotland to roll out its own localised version of the internationally acclaimed Framework.
Read more.

June 2018 – Fife Care Framework formally launched
The event saw families affected by HD join health and social care staff come together to welcome Fife becoming one of the first areas in the country to roll out its own localised version of the internationally acclaimed Scottish National Care Framework for HD.
Read more

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