National Care Framework for Huntington’s Disease

The National Care Framework is funded and supported by the Scottish Government and backed by all parties in the Scottish Parliament.  It was developed by a multi-disciplinary expert group and has been supported and endorsed by 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.

The Framework seeks to ensure that the care and support provided to individuals and their families living with Huntington’s disease takes account of their specific health & social care needs throughout their experience.

It does not advocate a “single pathway” or “one-size-fits-all” approach. Every person’s experience is unique and requires to be treated as such.

Individual care and support packages require to be created in partnership with families. This requires four key elements:

  1. Care coordination should be provided by a single named specialist as determined by each HSCP (ideally an HD Specialist) who has a key role in assisting families to navigate their way through their HD journey
  2. Care should be provided by a clearly defined multi-disciplinary team consisting of core members whose roles are essential in managing health and social care needs
  3. Access is required to a wider and clearly mapped network of services where well-developed referral and liaison arrangements are in place
  4. Specialist staff play a central role in providing training and education to the wider support network. Each HSCP area should have arrangements to deliver training, or work with other HSCPs to deliver training, appropriate to its own workforce

The National Care Framework for HD is a living document, designed to evolve along with changes to health and social care systems, structures and personnel. In addition to periodic review we are indebted to the assistance of users in ensuring that the Framework remains up to date. If you see any errors or omissions please email or call 0141 848 0308 and changes will be made, as required, as soon as possible. To ensure you are viewing the most up to date version of the National Care Framework please view on the Scottish Huntington’s Association website only, via the following link:

Scottish Huntington's Association with support from the Scottish Government