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A National Care Framework for Huntington’s Disease

scottish huntingtons association SHA support from scottish government national care framework

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
PA1 2FB
Tel: 0141 848 0308
Mob: 07736 457247
Email: alistair.haw@hdscotland.org

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.

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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.

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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.

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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.

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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.

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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.

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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).

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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.

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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 http://care.hdscotland.org/.

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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.

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