Patients & Visitors

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

B11

News

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

June 2019 : Dr Farzana Hakim, leaves TSC service

Farzana leaves TSC

Having been part of the service since October 2016, Farzana is stepping down from her role as the TSC Specialty Doctor on 21st June 2019, to focus on her career in General Practice and her personal life. We wish her well in her forthcoming ventures. Farzana's successor will be Dr Andrew Havers, who is also a GP and will be joining the service in July.

"Being part of the Bath TSC service has been a really fabulous, interesting journey and I am sad to leave such a fantastic team. It's been wonderful to build relationships with our wonderful patients, their families and carers over the last three years. I feel that I have worked hard to help develop the service, with ventures including our Cornwall Outreach Clinic, this website and helping to coordinate Everolimus prescribing and care, along with Kirsten. I wish Andrew the very best in his new role. Thank you all and farewell."
Farzana.

June 2019 : Cornwall TSC Outreach Clinic 2019

On 14th June 2019, Dr Ron Loh, Dr Farzana Hakim and Kirsten Slaney, TSC Specialist Nurse and Amanda Blyth (Team Administrator), made their way to Cornwall for the third annual TSC Cornwall Outreach Clinic. Following the success of the inaugural clinic in 2017 and in the light of extremely positive feedback from patients and carers (see below), our outreach clinic has continued to be a success.

We hope to return next year and thank the Cornwall Community Learning Disabilities Teams for continuing to host us at Chy Govnek in Truro.

RUH TSC Team at Cornwall Clinic

Truro Outreach Clinic June 2019
(L-R Dr Farzana Hakim, Amanda Blyth, Kirsten Slaney, Dr Ron Loh)

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.

June 2018: Cornwall TSC Outreach Clinic 2018

On 22nd June 2018, Dr Ron Loh, Dr Farzana Hakim and Kirsten Slaney, TSC Specialist Nurse made their way to Cornwall for the second TSC Cornwall Outreach Clinic. Following the success of the inaugural clinic in 2017 and in the light of extremely positive feedback from patients and carers (see below), our outreach clinic has grown further. This year, we were able to meet with 11 patients with TSC, along with their carers and families.

We hope to return next year and thank the Cornwall Community Learning Disabilities Teams for continuing to host us at Chy Govnek in Truro.

Outreach Clinic 2018

Cornwall Outreach Clinic June 2018 (L-R Dr Ron Loh, Dr Farzana Hakim, Kirsten Slaney)

Feedback from Inaugural Cornwall Clinic 2017

"It was a wonderful opportunity to ask questions to people with specialist knowledge."

"The staff and consultants were caring, friendly and informative."

"The TS Clinic discusses and puts forwards suggestions to manage ' whole TSC' issues."

"The doctor provided comprehensive information and answered any/all of questions we had."

Cornwall Outreach Clinic 2018

Cornwall Outreach Clinic July 2017
Clockwise from back L-R, Dr David Cox (Consultant LD Psychiatrist, Truro), Caryn Jory (LD team Epilepsy Specialist Nurse, Truro), Kirsten Slaney (TSC Specialist Nurse, Bath), Dr Ron Loh (Joint Head of TSC Service, Bath), Dr Farzana Hakim (Specialty Doctor in TSC/GP, Bath), Meghann Harmer (patient with TSC), Mr Andrew Harmer (Meghann's Father).

June 2018: "Joining the Dots" in TSC Conference, London

Conference PosterOur team attended the annual Novartis run, "Joining the Dots in TSC" Study Day at the Royal College of Physicians in London, on 6th June 2018. Both Professor O'Callaghan and Kirsten Slaney, TSC Specialist Nurse were invited to speak to an audience of medical professionals who have an interest in TSC.

  • Professor O'Callaghan spoke on "EXIST-3 Study and TSC-associated refractory seizures"
  • Kirsten Slaney's talk was entitled "Joining the dots to provide holistic patient care: Role of the TSC Nurse"
    Kirsten presentation


    RCP


March 2018: MiTS (Metformin in TS) Trial, Study Abstract

The abstract from Dr Sam Amin's 'Metformin in TS' trial, which over 50 of our patients were enrolled in, has been published with promising results.

Dr Sam Amin "Metformin is safe and well tolerated in children and adults with TSC. Patients on metformin had a significant reduction in SEGA (Subependymal Giant Cell Astrocytoma) volume compared with placebo. Metformin did not reduce AML (Angiomyolipoma) size but growth appeared slower than in the placebo group, although this difference was not statistically significant. There may be a role for metformin in slowing or reversing the growth of life-threatening hamartomas in TSC. Further study is justified."

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