Two women sitting in the Anne Rowling Clinic looking at a leaflet together.

Huntington's disease clinic

Huntington's disease clinic

Huntington's disease clinics are facilitated bi-monthly.

If you have been diagnosed with Huntington's Disease (HD) and live in Edinburgh or the Lothians, it is likely you will be referred to see a specialist at an HD management clinic. Some people with a positive test who do not have a firm diagnosis of HD may also be referred.

Huntington's disease clinics are held three times a month and are led by Dr Peter Foley, Neurology Consultant together with two Huntington's Disease Specialists from the Scottish Huntington's Association (SHA).

The clinics are held at the Anne Rowling Clinic as well as at the Western General Hospital, and in exceptional circumstances, by video call or by telephone. You are very welcome to bring your spouse, partner, carer, or friend to the clinic with you.

During your appointment, the neurologist and Huntington's Disease Specialist will review your clinical symptoms and speak to you about living with HD. Following your initial clinic appointment, we aim to invite you back for a review appointment at least once a year. Usually, you will have ongoing support from an allocated HD specialist, who is available to be contacted if needed and may arrange further review appointments as required.

In addition to a Consultant Neurologist and HD Specialist, the Scottish Huntington's team also has a Financial Wellbeing Officer and Specialist Youth Adviser, who are able to offer tailored support and guidance to families affected by HD. You will be told more about them at your first appointment.

The Huntington's disease management clinic also works closely with many other teams in NHS Lothian in order to support each person's unique needs most appropriately.

Research opportunities

As a research-care facility, you will be given the opportunity to take part in any relevant research projects. You can register your interest in research by signing up to Rowling CARE. Participation in research is completely voluntary and will not affect patient care. Patients will also be invited to take part in the Huntington's Disease Register. The purpose of the Register is to develop better insights and understanding about disease progression and to facilitate interventional clinical trials. Any research opportunities will be discussed at your clinic review appointments.

Personnel

Dr Peter Foley, Consultant Neurologist

For more information

To speak to an HD Specialist for more information, get in touch by phone on:

Trevor Law, Senior HD Specialist (07957 374417)

Julie Wilson, HD Specialist (07474 859304)

 

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