We provide a specialist clinic for people who either have, or are at risk of developing Huntington’s Disease (HD), and their families and carers.
We see people for the following reasons:
- To give expert advice, information, and medication management for neurological symptoms
- To provide comprehensive assessment, expert advice and management strategies (including medication) for the cognitive and neuropsychiatric disorder in HD
- For genetic counselling (people at risk of HD) and discussions on Prenatal Genetic Testing and PGD
- To provide advice on social and emotional needs, and signpost to appropriate services
- To support community services, GP and other healthcare teams involved in your care
- To give information about research and the opportunity to take part in current research projects in Huntington’s disease, if appropriate
- 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 to patients and families who would like to talk and write about what is important to you in your future care, and what you would want if you became unable to make decisions for yourself
- To provide expert support for patients with Juvenile HD, and their managing local teams
Your appointments may be face to face, via video or by telephone depending on your needs and the clinician’s advice.
Our service is primarily an advisory service. We can provide support and advice to services you will be primarily cared by. For example, your GP, community therapy services, mental health services and care homes. As we do not have any inpatient facility, all urgent enquiry’s will be managed through your GP. 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 advisor, or for more information on support available, please visit the Huntington’s Disease Association website: https:/
/ www. hda.org.uk/ - European Huntington’s Disease Network http:/
/ www. ehdn.org/
General enquiries
Service management
Daniela Rae
Address
PO Box104
Huntington’s Disease Multidisciplinary Clinic
National Hospital for Neurology and Neurosurgery
Queen Square
London
WC1N 3BG
Other referral information
Referrals should be made via the NHS Electronic Referral Service.
