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: