UCL HUNTINGTON’S DISEASE RESEARCH

INFORMATION FOR SCIENTISTS, CLINICIANS, PATIENTS, RELATIVES AND CARERS

UCL HUNTINGTON’S DISEASE RESEARCH

HD MULTIDISCIPLINARY CLINIC

The HD multidisciplinary Clinic team

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.

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 and carers.

We see people for the following reasons:

How can I be referred to the clinic?

You cannot refer yourself to the HD clinic. We can accept referrals from General Practitioners and hospital specialists (usually neurologists, psychiatrists or clinical geneticists). The quickest way to be referred to the clinic is usually to see your GP.

Referrals should be addressed to:

Professor Sarah Tabrizi (Professor of Clinical Neurology)
Huntington’s Disease Multidisciplinary Clinic,
National Hospital for Neurology and Neurosurgery,
Queen Square,
London WC1N 3BG.

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 or carers are and what the person who originally referred you said in their referring letter.

Consultant Neurologists Professor Sarah Tabrizi (Lead Clinician), Dr Thomasin Andrews & Professor Tom Warner, Dr Edward Wild
Consultant Neuropsychiatrist Dr Elvina Chu
Consultant Clinical Geneticist Dr Elisabeth Rosser
Nurse Consultant
Rachel Taylor
Nurse Specialist
Desiree Salanio
Clinical Research Fellows Dr Davina Hensman, Dr Rhia Ghosh, Dr Mike Flower, Dr Carolin Koriath,
Huntington’s Disease Association
Regional Care Advisors
Helen Santini, Mandy Ledbury & Anna Gardner
HD Research team Nicola Robertson & Lauren Byrne

Two other important members of our team, whom you won’t meet in clinic but you may speak with on the telephone are:

Secretary to Professor Sarah Tabrizi Karen Traynor
PREDICT-HD Coordinator Maggie Burrows

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 samples).

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 don’t want your clinic appointment to be too much for you, and so if you would rather just see one or two people, that’s fine.

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. A new patient appointment with one of the Consultant Neurologists takes 45-60 minutes and a new patient appointment with the Neuropsychiatrist or Consultant Geneticist can take 1 to 2 hours. You then may need to see one of the Huntington’s Disease Association Care Advisors and/or the Genetic Nurse.

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 whether 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 within this hospital that you may be referred to. These include Speech and Language Therapy, Physiotherapy, Occupational Therapy and the Dietician.

What if I have more questions before I come to clinic?

You can telephone Rachel, the HD Nurse consultant on 020 3448 3420 or you can ask someone to telephone on your behalf. Alternatively, if you are already linked to one of the Huntington’s Disease Association Regional Care Advisors you can speak to them about the clinic.

You can download a copy of this information by clicking here.

Updated February 14, 2013