Patients & Visitors

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

B11

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Follow what the Bath TSC team have been doing, including news of our outreach clinics, research and presentations.

Patients rate Tuberous Sclerosis Complex Service as excellent

Patients using the specialist Supraregional Tuberous Sclerosis Complex (TSC) service (at the Royal United Hospitals Bath NHS Foundation Trust) have rated it as excellent in a survey carried out earlier this year.

In the Patient Experience questionnaire, 94.8 per cent said the service was excellent and 5.2 per cent said it was good.

Tuberous Sclerosis Complex (TSC) is a genetic condition that causes mainly non-cancerous (benign) tumours to develop in different parts of the body, causing a spectrum of disease. It affects one baby in every 6,000 births in the UK. The Bath Supraregional TSC Service accepts referrals from across the UK and overseas, providing a specialist and expert service. It is one of the largest and the most established TSC clinic in the country.

The survey asked patients a variety of questions about the care they received, the facilities provided, the information they received from their clinician and their general experience of the service.

Comments from patients and carers included:

  • "The team are welcoming and always have time to talk about any queries, you don't feel rushed. I've been coming to the clinic for 10–20 years now and have always found them really supportive"
  • "You are patient, take time and there's no feeling of being rushed or that our questions are too simple/brushed aside
  • "Contact and support is excellent, as well as provision of the service and assistance in getting the treatments necessary to my child's wellbeing"
  • "Attentive and personalised service from all your team. Dr … had a brilliant manner with our son, he was patient, understanding and extremely knowledgeable and answered all our son's questions. As we left the hospital our son said "I always want to see that Doctor please" so thank you"

Dr Ron Loh, TSC Joint Head, said: "The results of the survey are very pleasing, but there's always room to further improve the service we offer. We have listened to what our patients have told us and acted on their suggestions. For example, we have worked on admin processes, creating a service leaflet for new patients, providing patients with an approximate duration of their appointments, clearer instructions on how to find us and invested in a camera for Skype Consultations when appropriate. These are all simple but important steps that make a difference to our patients' overall experience."

The questionnaire was carried out with assistance from the Trust's Patient Experience team, which gives practical advice on collecting, understanding and using patient, carer and public experience, and who also helped to collate the data.

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