We provide a specialist clinic for people who either have, or who are at risk of developing Huntington’s disease (HD), and their families and carers.
We see people for the following reasons:
- To provide comprehensive assessment of symptoms and to give expert advice, information, and where appropriate, medication management
- To provide genetic counselling and testing (for people at risk of HD and/or with possible clinical signs and symptoms of HD) and information around family planning choices (prenatal genetic testing and preimplantation genetic testing)
- To provide advice on social and emotional needs, and signposting to appropriate services
- To work in partnership with and act as an advisory resource for other health and social care colleagues and services involved in a patient’s care
- To give information about research and, where appropriate, discuss opportunities to take part in current research projects
- To provide outreach video appointments to nursing/ care homes, and patients who are unable to physically attend hospital routinely due to advanced illness or disability
- To provide advance care planning (ACP) sessions, as appropriate, to patients and their families/representatives to ensure they have the opportunity to discuss and record what is important to them and what they would want in the future
- To provide expert support for children and young people with Juvenile HD, and their managing local teams
Appointments may be face to face, via video or by telephone depending on patient needs and the clinician’s advice.
Our service is primarily an advisory service. We can provide support and advice to services people are primarily cared by, for example, GP, community therapy services, mental health services and care homes. As we do not have any inpatient facility, all urgent enquiries should be managed through local primary, secondary or emergency care.
Further information on how to access NHS services in urgent situations can be found on the NHS website.
- For up-to-date information on research: https://
en.hdbuzz.net - To find your local Huntington’s Disease Association Advisor, or for more information on support available, please visit the Huntington’s Disease Association website
- European Huntington’s Disease Network
General enquiries
Address
Huntington’s Disease Multidisciplinary Clinic
National Hospital for Neurology and Neurosurgery
PO Box 104
Queen Square
London
WC1N 3BG
Other referral information
Referrals should be made via the NHS Electronic Referral Service.
