If you need a large print, audio, braille, easy-read, age-friendly or translated copy of this page, email the patient information team at uclh.patientinformation@nhs.net. We will do our best to meet your needs.

This page provides information about the multidisciplinary Huntington’s Disease Clinic, which is held twice a month at the NHNN.

This is a specialist clinic for people (and their families or carers) who have or are at risk of having Huntington’s disease. We see people for the following reasons:

  • For genetic counselling and discussions on Prenatal Genetic Testing and PGD
  • For management of neurological and neuropsychiatric symptoms
  • To give information about research and the opportunity to take part in current research projects in Huntington’s disease, if appropriate.
  • To give advice, information, social and emotional support.

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 you or your needs. The team consists of:

  • Consultant neurologists
  • Consultant neuropsychiatrist
  • Consultant clinical geneticist
  • Clinical research fellows
  • Clinical nurse specialist
  • Consultant nurse
  • Huntington’s Disease association specialist care advisers
  • Research coordinators
  • Secretary / clinic coordinator

You may also meet other outpatient staff in the clinic including the clinic nurses, receptionists, patient transport officer, pharmacists and phlebotomist (the person who takes blood).

We want you to get the most out of your appointment in the clinic and this may mean that you see a number of team members. However, we do not want your clinic appointment to be too much for you. If you would rather just see one or two people please let us know.

The amount of time you spend in clinic will depend on who you see and what issues you need to discuss. A new patient appointment with one of the consultant neurologists takes 45-60 minutes.

A new patient appointment with the neuropsychiatrist or consultant geneticist can take one to two hours. You may also need to see one of the Huntington’s Disease association specialist care advisers, the specialist nurse or both.

You will need to bring with you:

  • An up-to-date list of all medicines you are taking including over the counter and complementary medicines
  • Your current contact details – address, telephone number
  • Contact details of your next of kin or anyone else involved in your care such as your GP or carer.

This allows us to keep you informed and ensures that our information is correct.

You are welcome to bring a family member, friend, carer or health or social care professional such as a social worker or community nurse with you to your appointment.

This will depend on you. Some people come back once a year. Others 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.

If you live within the hospital catchment area, there are several other services that you may be referred to. These include speech and language therapy, physiotherapy, occupational therapy, the dietician and psychology.

You can telephone the HD clinical nurse specialist on 02076799549 or you can ask someone to telephone on your behalf.

You can also email: uclh.huntingtonsdiseaseservice@nhs.net. Alternatively, if you are already linked to one of the Huntington’s disease Association Specialist Care Advisers you can speak to them about the clinic.

The NHNN Multidisciplinary Huntington’s Disease Clinic is featured in the Department of Health Good Practice Guide for Care of People with Long-Term Neurological Conditions. You can view this through the Department of Health website.

If you would like further information about any ongoing research opportunities, please visit:

Huntington’s Disease
Service Box 104,
National Hospital for Neurology and Neurosurgery
Queen Square, London
WC1N 3BG

Direct line: 0207 679 9549
HD team secretary: 0207 679 9574
Switchboard: 0845 155 5000/ 0203 456 7890

Services

Printing of this document is only valid on the day printed, please refer to the website for most up to date information:

https://www.uclh.nhs.uk/patients-and-visitors/patient-information-pages/huntingdons-disease-service-mdt-clinic

Service information

Page last updated: 16 May 2024

Review due: 01 August 2025