Acknowledgements

The National Care Framework for HD Development Group

The Scottish Huntington’s Association is enormously grateful to the National Care Framework for HD Development Group for its invaluable expertise and guidance throughout. The membership of the group (listed in alphabetical order, by first name) is as follows:

Alison Campbell, Senior Staff Nurse, Murdostoun Neurodisability Unit, Lanarkshire
Alison Gordon (Dr.), Consultant Psychiatrist & Lead HD Clinician, NHS Lanarkshire
Alison Hamilton, Lead Speech & Language Therapist, NHS Grampian
Alistair Haw, National Care Framework Lead, Scottish Huntington’s Association
Bob Bogle, Adult Non-Clinical Services Manager, Scottish Huntington’s Association
Carolyn Craig, HD family member
Cath Stanley, CEO, Huntington’s Disease Association (England & Wales)
Catherine Martin, HD family member
David Goudie (Dr.), Consultant Geneticist, NHS Tayside
David Thomson, Neurology Nurse, NHS Forth Valley
Debbie Pitcaithly, Clinical Psychologist, NHS Fife
Esther Sammler (Dr.), Consultant Neurologist, NHS Tayside
Fiona Smith, Rehabilitation Manager, NHS Greater Glasgow & Clyde
Gerry Dykes, Self Directed Support Manager, Renfrewshire Health and Social Care Partnership
Jeni Guthrie, Care Manager, Perth & Kinross Council
John Eden, CEO, Scottish Huntington’s Association (CHAIR)
Jillian Foster, Senior HD Specialist, NHS Fife
Karen Sutherland, Operations Manager (Adult Clinical Services), Scottish Huntington’s Association
Katrina Lansdown, Advanced Practitioner Occupational Therapist, NHS Lothian
Linda Lucas, Senior HD Specialist, NHS Lanarkshire
Mandy Graham, Team Lead Physio, NHS Lothian
Marion Ireland, Senior Dietician, NHS Lothian
Neil Sneddon, Manager, Physical Disabilities Social Work, Dundee Health & Social Care Partnership
Mary Porteous (Prof.), Consultant Geneticist, NHS Lothian
Patricia McLaughlin, Senior Specialist Nurse, The Single Gene Complex Needs Service
Paul Baughan (Dr.), GP & Primary Care Clinical Lead, NHS Forth Valley
Paula McFadyen, Senior HD Specialist, NHS Tayside
Sharon Mulhern (Dr.), Consultant Clinical Lead Neuropsychologist, NHS Ayrshire & Arran
Stuart Ritchie (Dr.), Consultant Psychiatrist & Lead HD Clinician, NHS Greater Glasgow & Clyde
Tracey Welbury, Senior Dental Officer, NHS Greater Glasgow & Clyde
Valerie Maxwell, Centre Director, Dee View Court Neurological Centre, Sue Ryder Care, Grampian
Zosia Miedzybrodzka (Prof.), Consultant Geneticist & Lead HD Clinician, NHS Grampian & NHS Highland

Consultation responses

The Scottish Huntington’s Association is also indebted to those who responded to our consultations on previous drafts of the Framework. Their feedback had a major role in developing the launch version. Those responding to our public consultation (listed in alphabetical order, by first name) are as follows:

Adrian Nitu (Dr), Consultant Psychiatrist, NHS Ayrshire & Arran
Alasdair Fitzgerald (Dr.), Consultant in Rehabilitation Medicine & Chair of HD Partnership Group, NHS Lothian
Alexia Pellowe (Dr), General Medical Practitioner/ GP Lead, East Ayrshire HSCP
Ali Shearer, HD Resource Worker, NHS Ayrshire & Arran
Alison Findlay, Senior Manager, East Ayrshire Health and Social Care Partnership
Alison Gordon (Dr), Consultant Psychiatrist & Lead HD Clinician, NHS Lanarkshire
Alison Livingstone (Dr.), Consultant Lead Clinician Clinical Neuropsychologist, NHS Tayside
Alistair Cook (Dr.), Consultant Psychiatrist, NHS Lanarkshire
Allan McGill, Senior HD Specialist, NHS Ayrshire & Arran
Andrew Robinson, Consultant Psychiatrist NHS Grampian & Board member of RCPsych Scotland
Angela Price, General Manager, Falkirk Mental Health Association & Member Falkirk HSCP
Anne Milne, Community Rehabilitation Occupational Therapist, City of Edinburgh Council
Annette Brown, Senior HD Specialist, NHS Lothian
AS, family member
Audrey Matthews (Dr), Lead Clinical Psychologist, NHS Lothian
Bob Bestow, MND Scotland
Brian Smith, Genetic Counsellor, NHS GG&C
BS, family member
Calum Campbell, Chief Executive, NHS Lanarkshire
Carolyn Craig, family member
Catherine Findlay, Occupational Therapy, City of Edinburgh HSCP
Catherine Martin, Vice President, (Global) Huntington’s Youth Organisation
Catherine McWilliam (Dr), Consultant Clinical Genetics, NHS Tayside
Cathie Cowan, Chief Executive, NHS Orkney
Chris Johnstone (Dr), Associate Clinical Director, Renfrewshire HSCP
Christine McNeill, Head of Community Health and Care Services, West Dunbartonshire HSCP
Claire Wood, Associate Director Allied Health Professionals & Chair of Neurology Steering Group, NHS Highland
Corinne Payne, HD Specialist, NHS Lanarkshire
Craig Stewart, Associate Nurse Director / IJB Lead Nurse, East Ayrshire HSCP
Daniela Rae, Senior Specialist Nurse in Genetics, NHS Grampian, Chair of European Huntington’s Disease Network’s Standards of Care Working Group
David Drain, Specialist Youth Advisor (North East Scotland), Scottish Huntington’s Association
David Gillespie (Dr.), Consultant Clinical Neuropsychologist, NHS Lothian
David Williams, Chief Officer, Glasgow City HSCP
DC, family member
Debbie Barrowman, Community Specialist Dietician, NHS Lanarkshire
Dina De Sousa, Board member, European Huntington’s Disease Network
DJ, family member
Dougie Johnstone, HD Specialist, NHS Greater Glasgow & Clyde
Ed Newman (Dr), Consultant Neurologist, NHS GG&C
Elaine Colville, NHS Education for Scotland
Elinor Jayne, Policy and Public Affairs Manager – Scotland, Sue Ryder
Elizabeth Sanchez-Vivar, NHS Education for Scotland
Eoin Hanney, Genetic Counsellor, NHS Tayside
Errol Walsh, Huntington’s Disease Association of Northern Ireland
Fiona Byng, Senior Occupational Therapist & Team Lead Community based Physical Disability Rehabilitation Service, Inverclyde HSCP
Fiona McGinness, Care Home Dietitian, NHS Lanarkshire
Gary Tanner (Dr), Director, Psychological Services , NHS Lanarkshire
Gavin Walker, Specialist Youth Advisor (Central, South & West Scotland), Scottish Huntington’s Association
Gerry Dykes, Self Directed Support Manager and Professional Lead OT, Renfrewshire HSCP
Gillian Clowes, Team Leader, North Ayrshire CMHT
GM, family member
Gordon Bogan, Senior HD Specialist, NHS Highland
Grant Walker, Senior Youth Advisor, Scottish Huntington’s Association
Gus Ironside, Operations Manager, The Brain Tumour Charity
Hazel Gaylor, Community clinical nurse specialist (Neuro), NHS Forth Valley
Hazel Scott (Prof), Royal College of Physicians and Surgeons of Glasgow
Heather Noller, Carers Trust Scotland
Heidi May, Director of Nursing, NHS Highland
Iain Morrison, Chief Executive, Revive MS Support
Iain Thomson, Senior Financial Wellbeing Officer, Scottish Huntington’s Association
Jack Griffin, The Griffin Foundation, USA
Jacqueline Dunlop, Principal Genetic Counsellor, NHS Tayside
Jacqueline K Downs, Neuro Rehabilitation & Managed Clinical Network Manager, NHS Ayrshire & Arran
Jacqui Terrance, Lead Occupational Therapist for Mental Health & Learning Disability, NHS Lanarkshire
Jan Thomson, Service Manager, North Ayrshire HSCP
Jane Andrew , NHS Education for Scotland
Jane Wilson, Committee and Policy Officer, RCGP Scotland
Janette Barrie, National Clinical Lead ACP, Healthcare Improvement Scotland & Nurse Consultant Long Term Conditions, NHS Lanarkshire
JD, family member
Jenny Callaghan, European Huntington’s Disease Network
Jenny Preston (Dr), Consultant OT, Clinical Lead Neurological Rehabilitation, NHS Ayrshire & Arran, Chair, College of Occupational Therapists Specialist Section Neurological Practice
Jim Crombie, CEO, NHS Lothian
Jo Baldock, Financial Wellbeing Officer, East of Scotland, Scottish Huntington’s Association
John Blair, Senior Dental Officer, NHS Ayrshire & Arran
John Paul Leach (Dr), Consultant Neurologist NHD GG&C and Chair of the National Advisory for Neurological Conditions
John Taylor (Dr), Consultant Psychiatrist NHS Ayrshire & Arran & vice chair RCPsych in Scotland
Julia Clark (Dr.), Freelance Consultant Neuropsychologist
Julie King, Occupational Therapist, City of Edinburgh Council
Julie Wilson, Postural Management Occupational Therapist, Fife Council
Kathy Hall, Old Age Nurse, South Australia
Katie Hamilton, Senior Practitioner Occupational Therapist, East Lothian Council
Katrina Lansdown, Occupational Therapist (Advanced Practitioner), NHS Lothian
Katrina Lovie, Financial Wellbeing Officer, North of Scotland, Scottish Huntington’s Association
Khyber Alam (Dr), Associate Medical Director, NHS24
Killian Welch (Dr), Consultant Neuropsychiatrist, NHS Lothian
Kirsten Walker, Senior Specialist Youth Advisor (South West Scotland), Scottish Huntington’s Association
Kirsty Forsyth, Project Coordinator, National Advisory Committee for Neurological Conditions
Laura Lawrie, Social Work, West Lothian Council
LD, family member
Leigh Thomson, Social Work, Midlothian Council
Lesley Broadley, Service Development Officer, West Lothian Council
Lesley Lockhart, Royal College of Physicians of Edinburgh
Linda Findlay, Consultant Psychiatrist & Associate Medical Director, South Lanarkshire HSCP
Liz Ferries, Team Leader, South Ayrshire CMHT
Liz Fraser, Senior HD Specialist, NHS Grampian
Liz McConnell, Assistant Operations Manager (Adult Clinical Services), Scottish Huntington’s Association
Lizzie Finlayson (Dr), Lead Clinician, Aberdeenshire HSCP
Lorna Laidlaw, Specialist in Special Care Dentistry, NHS Ayrshire & Arran
Louise Blackmore (Dr), Consultant Clinical Neuropsychologist, NHS Highland
Louise McCabe (Dr) , Senior Lecturer in Dementia Studies, University of Stirling
Louise Watson, OT Professional Lead (acute)/ Chief AHP Clyde Sector, NHS GG&C
Margaret Clark, Social Worker, Highland HSCP
Mark Hazelwood, CEO, Scottish Partnership for Palliative Care
Martin Bird, Mental Health Planning Office, Health & Social Care Midlothian
Mary Elmer, Parkinson’s UK
MM, family member
Natalie Frankish, Genetic Alliance UK
Neil Freshwater, Policy Officer, British Dietetic Association
Nicola Gillespie, Chartered Clinical Psychologist, Dept. of Neuropsychology, NHS Lothian
Nicola Johns, HD Specialist, NHS Fife
Nikki Thomson (Dr.), Consultant Psychiatrist & Clinical Director for Mental Health, NHS Highland
Pamela Caskie, Occupational Therapist, NHS Lanarkshire
Patricia McLaughlin, Snr Clinical Nurse Specialist, NHS Lothian
Paul Baughan (Dr), GP & Forth Valley Primary Care Clinical Lead
Paul Cameron (Dr), National Lead Clinician (Chronic Pain) and Lead Physiotherapist NHS Fife
Paul Kerr (Dr), Clinical Director, North Ayrshire HSCP
Paula Aldin-Scott, Health & Social Care Alliance (The Alliance)
Peter Carruthers, Specialist Youth Advisor (Fife & Lothian), Scottish Huntington’s Association
PM, family member
Rachel Hynds, The Care Inspectorate
Rebecca Duff, Head of Policy and Communications , MS Society Scotland & Chair Neurological Alliance of Scotland
Richard Davenport (Dr), Consultant Neurologist, NHS Lothian & Chair of the National Advisory Committee for Neurological Conditions (NACNC)
Richard Meade, Head of Policy and Public Affairs, Scotland Marie Curie
Richard Simpson (Dr), former MSP & Shadow Health Minister, Fellow RCPsych & RCGPs
Roger Cable (Dr.), Consultant Psychiatrist, NHS Dumfries & Galloway
Sally Woolvine, Senior HD Specialist, NHS Greater Glasgow & Clyde
Seonaid McCallum (Dr), Consultant Psychiatrist, NHS Fife
Sharon Mulhern (Dr), Consultant Clinical Lead Neuropsychology, NHS Ayrshire & Arran and Honorary Research Fellow University of Glasgow
Sharon Sansome, Team Leader, CPNE Service, NHS Lothian
Sheila Steel, Associate Improvement Advisor (ACP), Healthcare Improvement Scotland
Shiona Strachan, Chief Officer, Stirling & Clackmannanshire HSCP
SM, family member
SM, family member
Stewart M Donald (Dr), Consultant in Rehabilitation Medicine Systemic Practitioner, NHS Lothian
Stuart Gaw, Senior Manager, North Ayrshire HSCP
Stuart Ritchie (Dr), Consultant Psychiatrist, National TPD for Old Age Psychiatry, NHS Greater Glasgow & Clyde (HD Clinical Lead 2006 – 2016)
Susan Dalgliesh, City of Edinburgh HSCP
Suzanne Crichton, Team Lead Occupational Therapist, NHS Lothian
Tanith Muller, Parkinson’s UK
Tim Johnstone (Dr), Consultant Psychiatrist & HD Clinical Lead, NHS Ayrshire & Arran
TL, family member
Tracey McKee, Subject Specialist Librarian, NHS GG&C
Trevor Law, HD Specialist, NHS Lothian
Uwe Spelmeyer (Dr), Consultant Neurologist, NHS Fife
VB, family member
YG, family member

We are further indebted to Alzheimer Scotland, MND Scotland, Parkinson’s UK and the Scottish Pathways Association for early meetings to share their experiences of Care Frameworks.

Government & political backing

The work to develop a National Care Framework to HD was made possible thanks to funding and support from the Scottish Government.

In addition to backing from the Scottish Government the Care Framework has been backed by all parties represented in the Scottish Parliament. The following parliamentary motion, tabled by Shadow Health Secretary Donald Cameron MSP, was backed by SNP, Conservative, Labour, Green & Lib Dem MSPs, including the leaders of all opposition parties (Ruth Davidson, Kezia Dugdale, Patrick Harvie & Willie Rennie), all opposition lead health spokespeople (Donald Cameron, Anas Sarwar, Alex Cole-Hamilton and Alison Johnstone) and the convener and deputy convener of the Health & Sport Committee (Neil Findlay & Clare Haughey).

Motion S5M-00510: Donald Cameron, Highlands and Islands, Scottish Conservative and Unionist Party, Date Lodged: 17/06/2016

A National Care Framework for Huntington’s Disease: 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.

Supported by: Ross Thomson, Alexander Burnett, Alison Harris, John Mason, Murdo Fraser, John Lamont, Alison Johnstone, John Finnie, James Dornan, Oliver Mundell, Liam McArthur, Iain Gray, Peter Chapman, Douglas Ross, Kenneth Gibson, Miles Briggs, Jeremy Balfour, Liz Smith, Liam Kerr, Anas Sarwar, Jackson Carlaw, Gordon Lindhurst, Rachael Hamilton, Jackie Baillie, Maurice Golden, Monica Lennon, Richard Leonard, Brian Whittle, Margaret Mitchell, Clare Adamson, Emma Harper, Neil Findlay, Richard Lyle, Clare Haughey, Alex Cole-Hamilton, Ivan McKee, Fulton MacGregor, Edward Mountain, Daniel Johnson, Colin Beattie, Graeme Dey, Joan McAlpine, Claire Baker, Bruce Crawford, Stuart McMillan, Rhoda Grant, David Stewart, Lewis Macdonald, Ruth Davidson, Elaine Smith, Richard Lochhead, Alex Rowley, Michael Russell, Bob Doris, Andy Wightman, Bill Kidd, Willie Rennie, Gil Paterson, Mark Ruskell, Kezia Dugdale, James Kelly, John Scott, Patrick Harvie, Annie Wells, Finlay Carson, Colin Smyth

The National Care Framework for HD therefore has the backing of the Scottish Government, all parties represented in the Scottish Parliament and a majority of MSPs. This support is greatly appreciated.

Website Development

We are enormously indebted to Daniel Knox & Scott Richmond at Adworks for devising the format of this website, and for the flexible and highly responsive manner in which they worked with us to populate it.

We are also hugely grateful to Craig Kennedy, a volunteer at the Scottish Huntington’s Association, for updating the online Framework in line with consultation feedback throughout this process.

National Care Framework for Huntington's Disease