Growing Need for Specialist Huntington’s Disease Services
- Submitted by: Jackie Baillie, Dumbarton, Scottish Labour.
- Date lodged: Thursday, 26 August 2021
- Motion reference: S6M-00923
That the Parliament understands that Huntington’s disease (HD) is a rare, hereditary, extremely difficult to manage and currently incurable, neurological condition that slowly robs patients of their ability to walk, talk, eat, drink, make rational decisions and care for themselves; welcomes the Scottish Government and cross-party backed National Care Framework for Huntington’s Disease that outlines the specialist care and support that NHS boards and health and social care partnerships are expected to deliver for HD families; notes a University of Aberdeen study, published in the Journal of Neurology, highlighting that the number of HD cases in northern Scotland is now five times the global average, having increased by almost 50% over the last 30 years, and understands that similar increases are likely to have been replicated throughout the country; further understands that the Scottish Huntington’s Association has confirmed that HD specialist staff are stretched to the limit and have had to accept rising cases over many years without a commensurate increase in resources, and calls on NHS boards and health and social care partnerships to recognise these developments and expand specialist HD services to meet what it sees as the significantly growing demand, to ensure families impacted by Huntington’s disease receive a service that meets both their individual needs and a growing collective demand throughout the country.
Supported by:
Karen Adam, Clare Adamson, Alasdair Allan, Claire Baker, Jeremy Balfour, Colin Beattie, Neil Bibby, Sarah Boyack, Miles Briggs, Siobhian Brown, Ariane Burgess, Alexander Burnett, Stephanie Callaghan, Donald Cameron, Jackson Carlaw, Finlay Carson, Maggie Chapman, Foysol Choudhury, Katy Clark, Alex Cole-Hamilton, Natalie Don, Bob Doris, James Dornan, Sharon Dowey, Jackie Dunbar, Pam Duncan-Glancy, Annabelle Ewing, Fergus Ewing, Jim Fairlie, Russell Findlay, Joe FitzPatrick, Murdo Fraser, Meghan Gallacher, Kenneth Gibson, Maurice Golden, Pam Gosal, Christine Grahame, Rhoda Grant, Neil Gray, Jamie Greene, Ross Greer, Mark Griffin, Dr. Sandesh Gulhane, Jamie Halcro Johnston, Rachael Hamilton, Emma Harper, Craig Hoy, Fiona Hyslop, Daniel Johnson, Liam Kerr, Stephen Kerr, Bill Kidd, Monica Lennon, Richard Leonard, Dean Lockhart, Douglas Lumsden, Gordon MacDonald, Fulton MacGregor, Gillian Mackay, Rona Mackay, Ruth Maguire, Michael Marra, Gillian Martin, Liam McArthur, Paul McLennan, Stuart McMillan, Marie McNair, Pauline McNeill, Jenni Minto, Carol Mochan, Edward Mountain, Oliver Mundell, Audrey Nicoll, Paul O'Kane, Willie Rennie, Emma Roddick, Douglas Ross, Alex Rowley, Mark Ruskell, Anas Sarwar, Graham Simpson, Liz Smith, Colin Smyth, Collette Stevenson, Alexander Stewart, Kaukab Stewart, Paul Sweeney, Michelle Thomson, David Torrance, Evelyn Tweed, Mercedes Villalba, Sue Webber, Annie Wells, Tess White, Martin Whitfield, Elena Whitham, Brian Whittle, Beatrice Wishart