Patients & Visitors

Bath Supraregional Tuberous Sclerosis Complex (TSC) Service for Adults and Children

B11

About the TSC Service

COVID-19

Our service is operating with some changes. Please do not hesitate to contact us in the usual way. We are able to offer video and virtual clinic consultations.

Tuberous Sclerosis Complex (TSC) is a genetic condition that causes mainly non-cancerous (benign) tumours to develop in different parts of the body. It affects one baby in every 6,000 births in the UK. TSC causes a spectrum of disease and the outlook for people with TSC can vary considerably. It is vital that people with TSC are looked after by a specialist team to screen for and manage complications of TSC.

Why choose us?

The Bath TSC Clinic is dedicated to looking after people with TSC in a holistic manner. This means that we are uniquely able to deal with many aspects of care for both children and adults. It is important that patients with TSC are seen regularly by a TSC clinic, to ensure that the highest standard of expert safe and effective care is delivered. As we are a lifespan service, patients will see the same team throughout to provide seamless care.

We accept referrals from across the UK and overseas. We are the oldest and largest TSC clinic in the country. The clinic was originally founded by Professor John Osborne in the early 1990s. We aim to see our patients on an annual basis and seek to work as closely as possible with your local health care team, as well as any other agencies involved in your care.

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Our team has unparalleled expertise and specialist knowledge in looking after children and adults with TSC. We have a strong, proud tradition of research in Bath and many of our patients have been part of pioneering trials for new treatments for TSC.

Uniquely, we are able to offer topical sirolimus ointment to help treat facial angiofibromas (a common facial rash in TSC), which has shown to be a safe and effective treatment.

We are Rare Disease complex care coordinators based on the NHS Rare Disease Implementation Plan 2018. We also serve as advocates and are a source of specialist information for professionals, patients and their families.

Our role is complementary to the patients existing local services. We do not take over any of the patients active management - e.g. epilepsy medication changes, renal monitoring. We would advise if there are better options specific to this disease and any known exacerbating medications. People with rare disease frequently have to meet with multiple organ specialists and their care can be fragmented. We advocate for patients to ensure they do not fall between the gaps of services.

We aim to work closely with the patient’s physician to ensure that each patient gets individually tailored care for all of his or her needs. We channel patients into existing pathways, where one exists, while retaining the overview of the patients TSC manifestation.

We encourage our patients to continue and strengthen their relationships with local specialist and to have surveillance imaging locally. We would take responsibility for any test or imaging requested specifically for TSC monitoring once we are informed of its existence.

To this end, we operate a highly responsive frontline team and aim to see these patients face to face or virtually on a regular basis. We are available by phone or email to patients and professionals on an advisory non-emergency basis Monday to Friday office hours.

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