Motion ref. S5M-00510
A National Care Framework for Huntington’s Disease
Submitted by: Donald Cameron, Highlands and Islands, Scottish Conservative and Unionist Party.
Date lodged: Friday, June 17, 2016
Supported by: Clare Adamson, Jackie Baillie, Claire Baker, Jeremy Balfour, Colin Beattie, Miles Briggs, Alexander Burnett, Jackson Carlaw, Finlay Carson, Peter Chapman, Alex Cole-Hamilton, Bruce Crawford, Ruth Davidson, Graeme Dey, Bob Doris, James Dornan, Kezia Dugdale, Neil Findlay, John Finnie, Murdo Fraser, Kenneth Gibson, Maurice Golden, Rhoda Grant, Iain Gray, Rachael Hamilton, Emma Harper, Alison Harris, Patrick Harvie, Clare Haughey, Daniel Johnson, Alison Johnstone, James Kelly, Liam Kerr, Bill Kidd, John Lamont, Monica Lennon, Richard Leonard, Gordon Lindhurst, Richard Lochhead, Richard Lyle, Lewis Macdonald, Fulton MacGregor, John Mason, Joan McAlpine, Liam McArthur, Ivan McKee, Stuart McMillan, Margaret Mitchell, Edward Mountain, Oliver Mundell, Gil Paterson, Willie Rennie, Douglas Ross, Alex Rowley, Mark Ruskell, Michael Russell, Anas Sarwar, John Scott, Elaine Smith, Liz Smith, Colin Smyth, David Stewart, Ross Thomson, Annie Wells, Brian Whittle, Andy Wightman
That the Parliament understands that Huntington’s Disease (HD) is a rare, hereditary, degenerative, incurable and ultimately fatal condition that attacks the brain and central nervous system and that the disease affects an estimated 1,100 people in Scotland, with a further 4,000-6,000 at risk of inheriting it; welcomes the Scottish Government’s decision to commission the Scottish Huntington’s Association (SHA) to lead on the development of a national care framework for HD to help drive up standards of care and support; further welcomes SHA’s announcement of a multidisciplinary expert group to lead on the development of the framework; wishes the SHA, the development group and the wider HD community every success in their work, and calls on health and social care providers throughout Scotland to get behind the growing movement to raise both awareness of HD and the standards of care and support provided to generations of families who have had its devastating impact visited on them.