Project Name: The Tuberous Sclerosis Complex Service Development Joint Working Project (“JWP”)

Joint Working Project Summary: 


St George’s Hospital is a Tuberous Sclerosis Complex (“TSC”) specialist centre in South West London and is part of the St George’s University Hospitals NHS Foundation Trust (the “Trust”). TSC patients may require regular, urgent and / or extended visits to St George’s Hospital for interventions, including ongoing surveillance imaging, surgery, genetic analysis / counselling and pharmacological treatment. The TSC care at St George’s Hospital is currently delivered by three Consultants and a genetic counsellor (“the NHS team”) covering clinical genetics, nephrology and acute medicine. The NHS team are also supported by a multi-disciplinary team of other healthcare professionals (“HCPs”) who may become involved in care subject to the specialist needs of the TSC patient. The NHS team has seen in the last couple of years a growing demand on the TSC service due to an increase in the number of TSC patients under active surveillance and the availability of new oral treatments for a form of TSC-related renal lesions. Consequently, the NHS team is struggling to coordinate the TSC patient pathway and maintain the TSC service in line with the standards defined in the UK Guidelines for the Management and Surveillance of TSC (“UKGMST”).


Novartis and the NHS team will combine resources and work together on a JWP that aims to improve the TSC patient service and increase patient satisfaction at St George’s Hospital. This will be achieved through the recruitment of a TSC Clinical Nurse Specialist (“CNS”) who will implement and run a new weekly “virtual” clinic (video-conferencing / skype / telephone) service. Prior to the virtual clinics, the CNS will liaise with the Consultants / other HCP specialists / Trust Information technology department to make sure: (i) the correct technological platform is available for the virtual clinic consultations; (ii) the right HCP specialists participate in the virtual clinic or; (iii) the CNS can provide care and advice. The CNS will also support Consultant led clinics and formal TSC pathway coordination by organising regular patient / families / carers access to the various service elements.

Patient benefit

TSC patients / families / carers will benefit from the virtual clinics by reducing the number of visits to the hospital. The CNS will also facilitate ongoing education and advice for when the patient is away from the hospital. Formal pathway coordination will provide regular access to the various service elements, such follow-up blood tests, scans, genetic tests and referral to other specialists.

NHS Benefit

The NHS team will benefit from the weekly virtual clinic service, a CNS to support Consultant led clinics and a formally coordinated TSC service. This will increase the overall number of clinic consultations and help the NHS team maintain the TSC service in line with the UKGMST.

Novartis Benefit

Novartis will benefit through developing a stronger partnership with the NHS team and gain a richer understanding of the TSC service standards defined in the UKGMT. This will be within the context of how the NHS team plans the implementation of the virtual clinics and coordinates the TSC patient pathway. This will enable Novartis to have collaborative conversations with other NHS teams.


Novartis and the Trust will combine financial resources to jointly fund the new TSC CNS. The NHS will provide clinical oversight and training for the new role along with the generation of the service protocol and patient satisfaction questionnaire. Novartis will provide project management and JWP documentation support. A project steering group will regularly review and track the progress and impact of this JWP via the generation of aggregated service level reports.

Expected Patient Outcomes for this Project: 

  • Access to and consultations with a dedicated CNS and specialist HCPs via virtual clinics, subject to clinical need, and a reduced need to travel to the hospital for a consultation.

  • Improved quality of TSC patient care in terms of TSC patients / families / carers regular access to specialist service options and self-management support.

  • Six monthly educational events for patients / families / carers, led by the CNS, to support disease understanding and facilitate communication with the NHS team.

  • Six monthly TSC news updates via the Trust website to facilitate awareness of service options for patients / families / carers.

  • Improved patient satisfaction of the TSC service in terms of the following elements:

    • reduced time waiting in clinic;

    • tailored patient consultation, advice, support, materials and treatment plans;

    • regular clinical assessments, blood tests, scans and genetic tests;

    • access  to Health Needs Assessments for patients or sign posting to psychological support;

    • reduction in unplanned contact with the NHS team.

Start Date and Duration: November 2019 to May 2021

UK | November 2019 | ONC19-C104 

Project Name: The Tuberous Sclerosis Complex Service Development Joint Working Project

Completion Date: 22nd July 2021

Outcome Summary:
Tuberous Scelrosis (TSC) is a multi-system genetic disease which causes benign tumours to grown in the brain and other organs. In addition, it also can cause developmental abnormalities in the brain which can result in a range of associated complications. As a multi-system disorder, TSC patients can be complex to treat with often multiple touchpoints across the health system. The project aimed to improve coordination of care for TSC patients by appointing and training a Clinical Nurse Specialist (CNS).

Key Project Outcomes Data:
Total TSC-Genetics clinic attendance increased by 11% across the time period with the mean number of patient attendences per month increasing from 15.5 (2019) to 19.4 (2021). Mean DNA rate went down from 3.5 to 1.4. A evolution of a mix of video – telephone (as well as f2f consultations) introduced, increasing from 0% to 13% and 21% respectively.

The CNS supported the twice-monthly consultant-led outpatient clinics for patients as well as establishing a CNS-led telephone clinic. The CNS also organized six-month Pan-Thames TSC MDTs to coordinate services.

The CNS led a number of patient and professional engagement activities including patient education sessions.

In addition, outcomes included:

Service capacity/ efficiency increase

Clinic Patient Attendances

Facilitated further patient access to service

Distance Travelled Clinic Graph

Holistic/ coordinated care improved 

Patient Survey Data

 Evolution towards mixed face-to-face and virtual clinical appointments

Patient Survey Data VI

An increased number of unplanned contacts

Unplanned Contacts Chart


Quote from Partner: 
“The service has been acknowledged nationally to be a leader in the care of individuals living with TSC”

“The outcomes speak for themselves, and we look forward to a sustainable future for the service and the patients it serves.”


The arrival of our TSC CNS on 16/12/2019, signaling the beginning of the Novartis-SGUHNFT TSC JWP, and despite the COVID-19 pandemic and lockdown from 23/3/2020, has been associated with:

  • An increase in patients seen in both TSC-Genetics and TSC-Renal clinics

  • A decrease in patient DNA/cancellation rate in both TSC-Genetics and TSC-Renal clinics

  • An evolution toward mixed face-to-face and virtual clinic appointments

  • An increased number of unplanned contacts – mostly managed by our TSC CNS

  • Sustained excellent patient survey results

  • UKGMST1 audit: Maintained TSC-service coverage over the last 18 months: the strengths have been built upon, areas for improvement identified and are being addressed

Overall, this project has not only enabled a greater number of patients with or at risk of TSC to access the management they deserve, but has also allowed the existing members of the team to contribute to service development through audit and research. 

1. UK Guidelines for the management and surveillance of TSC: QJM: An International Journal of Medicine, Volume 112, Issue 3, March 2019, Pages 171–182,