Membership of National Care Framework Development Group confirmed

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

National Care Framework for Huntington’s Disease Development Group:

(In alphabetical order, by first name)

Alison Campbell, Senior Staff Nurse, Murdostoun Neurodisability Unit, Lanarkshire

Dr. Alison Gordon, Consultant Psychiatrist & Lead Huntington’s Disease Clinician, NHS Lanarkshire

Alison Hamilton, Lead Speech & Language Therapist, NHS Grampian

Alistair Haw, National Care Framework Lead, Scottish Huntington’s Association (CHAIR)

Carolyn Craig, Huntington’s disease family member

Cath Stanley, CEO, Huntington’s Disease Association (England & Wales)

Catherine Martin, Huntington’s disease 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, Chief Executive Officer, 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 will work up a draft National Care Framework for Huntington’s Disease that helps ensure families impacted by the condition are given the best possible care, information and support regardless of where they live in Scotland.

The draft framework will go out to wider consultation amongst all parties with 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 has 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.

Published: May 2016