Further to a period of consultation with key stakeholders The Scottish Huntington’s Association (SHA) is delighted to announce the membership of the National Care Framework Development Group.

HD National Care Framework Development Group
(In alphabetical order, by first name)

Alison Campbell, Senior Staff Nurse, Murdostoun Neurodisability Unit, Lanarkshire
Dr. Alison Gordon, 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 (CHAIR)
Carolyn Craig, HD family member
Cath Stanley, CEO, Huntington’s Disease Association (England & Wales)
Catherine Martin, HD family member
Dr. David Goudie, Consultant Geneticist, NHS Tayside
David Thomson, Neurology Nurse, NHS Forth Valley
Debbie Pitcaithly, Clinical Psychologist, NHS Fife
Dr. Esther Sammler, 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
Jillian Foster, Senior HD Specialist, NHS Fife
Karen Sutherland, Adult Clinical Services Manager, 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
Prof. Mary Porteous, Consultant Geneticist, NHS Lothian
Patricia McLaughlin, Senior Specialist Nurse, The Single Gene Complex Needs Service
Dr. Paul Baughan, GP & Primary Care Clinical Lead, NHS Forth Valley
Paula McFadyen, Senior HD Specialist, NHS Tayside
Dr. Sharon Mulhern, Consultant Clinical Lead Neuropsychologist, NHS Ayrshire & Arran
Dr. Stuart Ritchie, 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
Prof. Zosia Miedzybrodzka, Consultant Geneticist & Lead HD Clinician, NHS Grampian & NHS Highland

The group has been pulled together to work up a draft National Care Framework for HD that helps ensure families affected by the condition are given the best possible care, information and support regardless of where they live in Scotland.

The draft framework produced by the group will go out to wider consultation amongst all parties who have an interest in making the document as comprehensive and successful as possible.

The charity is extremely grateful to everyone who has agreed to join the group, which boasts an enormous wealth of knowledge and experience of caring for HD families from a wide range of perspectives. All of these perspectives are invaluable if we are to deliver the best possible outcomes for service users.

Meetings of the group are scheduled to take place in May, June and August, with a draft framework going out to wider consultation shortly thereafter.