SENSE

South East Scotland Neurological Services

NHS Scotland

Under construction

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Services for people with Huntington's Disease

 

 

 

 

 

 

 

 

The Lothian Service aims to improve significantly the quality of lives of those affected by Huntington’s Disease (HD) and their families through timely specialist assessment, condition management, information, advice, advocacy and emotional support. The Lothian Service also provides practical help for those affected, carers and family members with benefit maximisation, adaptations, equipment, and access to services. The service works cohesively with the multi disciplinary teams in Health and Social Care across whole of Lothian that support our families by providing specialist information, educational sessions, and case management support.

 

The service has an open referral system; we accept direct referrals from those affected, family or other third party referrals with consent.  

 

We are keen to make sure that we know about everyone with Huntington's in Lothian and encourage people and professionals to refer to contact the service at the earliest opportunity.  

 

Please get in touch by phoning, writing or email to the Lothian Team.

 

The Lothian Team

 

Annette Brown, Senior Huntington's Specialist Nurse

Full time, 8 am till 4 30 pm Monday to Thursday and 12 noon on Friday

Mobile: 07944274521 or email annette.e.brown@nhslothian.scot.nhs.uk

 

Graeme Sutherland- Lockhart, Admin & Resource Worker

Part time; 8 am till 12 noon Monday to Thursday

Office: 0131 537 1058 or email Graeme.Sutherland@nhslothian.scot.nhs.uk

 

Where to find us:

 

David Brock Building

Department of Clinical Genetics

Western General Hospital

Crewe Road

Edinburgh

EH4 2XU

 

The Scottish Huntington's Association Youth Project provides support to young people aged 8-25 whose life is affected by HD by direct support, group support and activities including summer camp to meet others who are experiencing similar situation. Contact SHAYP on  0141 556 2136 for further information or email shayouth@yahoo.co.uk.

 

Our families host a local support group which provides an opportunity to meet with others whose lives are affected by Huntington’s disease. The Family Branch meets informally on the last Wednesday of every month at 7.30pm till 9 30 pm in Duke Street URC, 108A Duke Street, Leith, Edinburgh, EH6 8HL. For further information please contact Margaret McPherson 0131 552 8442.

 

 

 

 

 

 

 

 

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