The Multidisciplinary Huntingon's Disease Clinic
Clinic overview
What is the Multidisciplinary Huntington’s Disease Clinic?
It is a specialist clinic for people who either have, or are at risk of developing, Huntington’s disease, and their families/carers.
We see people for the following reasons:
- For genetic counselling and testing
- For prenatal genetic genetic counselling and testing
- For management of symptoms
- To give advice, information, social and emotional support
- To give information about research and the opportunity to take part in current research projects in Huntington’s disease, if appropriate
How can I be referred to the clinic?
We can accept refferals from General Pactitioners (GPs) and hospital based specialists including neurologists, psychiatrists or clinical geneticists.
GPs should refer via the Electronic Referral Sysyem (ERS) - the service details on ERS are: Huntington’s Disease Multidisciplinary Clinic - Department of Neurogenetics - NHNN - UCLH - RRV
Other specialists should address referrals to :
Professor Sarah Tabrizi (Professor of Clinical Neurology)
Huntington’s Disease Multidisciplinary Clinic,
Box 104
The National Hospital for Neurology and Neurosurgery
Queen Square
London WC1N 3BG
Please note - we are not able to accept self referrals or see people outside the NHS
Who will I see in clinic?
There is a whole team of people who work as part of the clinic. You may see one or more of them at your appointment, depending on what your needs are, what the needs of your family/carers are and what the person who originally referred you said in their referring letter.
| Consultant Neurologists | Professor Sarah Tabrizi (Lead Clinician), Professor Edward Wild, Dr Thomasin Andrews, Professor Thomas Warner, Dr Michael Flower, Dr Davina Hensman |
| Consultant Neuropsychiatrists | Dr Nadeen Mazi Kotwai, Dr Stefania Bruno |
| Consultant Clinical Geneticist | Dr Shereen Tadros |
| Clinical Nurse Consultant | Rachel Taylor |
| Clinical Nurse Specialist | Desiree Salanio |
| Clinical Research Fellows | Dr Lisa Franke, Dr Harry Knights, Dr Michael Murphy, Dr Sangeeth Rajagopal, Dr Henrique da Silva Ferrao Nascimento |
| Huntington’s Disease Association Advisors: | Rachel Boothman, Tracey Hole, Anna Holmes, Dawn Stilwell |
| Research Co-ordinators: | Kate Fayer, Olivia Thackeray |
| Administrator: | Denzil D’Souza |
We offer different types of clinic appointment including face to face (where people attend the hospital outpatient department), remote video appointments (where you see the clinician via MS Teams video link) and telephone. The type of appointment you are offered will depend on a number of different factors including whether we have seen you before, what your needs are and how difficult it is for you to travel to clinic.
How long will my appointment take?
The amount of time you spend in clinic will depend on who you see and what issues you need to discuss.
Who can come with me to my appointment?
This depends on you. You may choose to come with a family member, friend, carer, or health/social care professional such as a social worker or community nurse.
How often will I need to come back to clinic?
Again, this very much depends on you. Some people come back once a year, some people come more often. If you are started on a new medication in clinic, we may need to see you again fairly soon in order to see how the medication is working and check that it suits you. Also, if you are having difficulties, you may need to come back to clinic more frequently.
Will I be referred to anyone else in the hospital?
There are a number of other services both within this hospital and externally that you may be referred to. These include local Mental Health Services, Speech and Language Therapy, Physiotherapy, Occupational Therapy, the Dietitian and Psychology.
As we are a tertiary service we are not able to provide day to day management or urgent/crisis support and so patients/carers should always contact their own GP, NHS 111 or 999 in an emergency situation. However we are always happy to provide advice and guidance to local health and social care professionals.
What if I have more questions before I come to clinic?
The team can be contacted at: uclh.huntingtonsdiseaseservice@nhs.net