Band 7 Tuberous Sclerosis Complex (TSC) Clinical nurse specialist

Job overview

The key aim of this post is to improve the coordination of care for individuals with Tuberous sclerosis complex attending St George’s Hospital, including safeguarding the monitoring of TSC patients treated with mTOR inhibitors and delivery of a clinical trial of a new drug for TSC. TSC is a genetic multisystem condition that affects the brain, kidneys, skin and lungs. Patients with this condition are frequently under several specialists and require multiple hospital appointments, often at a number of different locations. January 2026 The TSC clinic at St George’s was established in 1993 with the aim of reducing the need for multiple clinic visits, and it now has a national reputation for excellence of care. Dr Frances Elmslie leads the National TSC Rare Disease Collaborative Network with administrative support from the UK charity, the Tuberous Sclerosis Association (TSA). Many patients need to attend many different departments and have several clinicians leading their care, based on their individual clinical needs and therefore require excellent collaborative care coordination. The CNS role is central to their care. Referrals to St George’s have increased in recent years. With a significant proportion of patients meeting the criteria to commence long term therapy with mTOR inhibitors, in line with new national & international guidelines of care for this condition, there is an absolute requirement for monitoring of therapy, and coordinating care across the various specialties for each patient. In addition, the UK guidelines for management of children and adults with TSC are being revised and there will be an ongoing need to ensure that we are compliant in our delivery of care. As a result of our experience in the use of mTOR inhibitors in clinical care, the service was approached by a pharmaceutical company and invited to lead the UK arm of an international clinical trial of a new drug for TSC. This role will be central to the delivery of the trial.

Main duties of the job

• The aims of this post are:
• To identify all patients with TSC that attend St George’s Hospital
• To work with the Clinical Leads for the TSC service and the existing Clinical Nurse Specialist to triage referrals, contact new patients by telephone and ensure that they are seen in the clinic in a timely fashion
• To co-ordinate and attend regular TSC-Genetics clinics and to provide cross cover for the TSC-Renal clinic
• To lead and co-ordinate virtual TSC-Genetics follow-up clinics for patients requiring surveillance, and correspond with patients, carers and responsible clinicians.
• To coordinate surveillance scans for patients, whether at St George’s or at their local hospital.
• To ensure that results of scans are brought to the attention of the requesting doctor.
• To lead and coordinate the care of TSC patients that require investigations and therapy under General Anaesthetic, particularly liaising with the Learning Disability team, imaging and interventional teams where appropriate.
• To provide cross cover with the existing CNS for the virtual TSC-Renal follow-up clinics for patients receiving/planned to receive mTOR inhibitor therapy.
• Together with the existing CNS:
• to liaise with pharmacy and home delivery teams to ensure TSC patients are adequately supplied with mTOR inhibitor medication where indicated.
• To co-ordinate blood monitoring (as per UK/international guidelines) for patients receiving mTOR inhibitor therapy.
• To maintain a confidential TSC database linked to the Clinical Genetic Departmental Database (Geneworks), so that all patients with this diagnosis can be readily identified, and their care record audited.
• To ensure that patient information is available on relevant Trust databases (iCLIP/EPR).
• To create individualised patient care plans for each patient attending the clinic to ensure that all potential needs are addressed.
• To ensure timely follow-up appointments for existing TSC patients.
• To assist in the coordination the St George’s TSC MDT at 2-monthly intervals and to document the outcome of the MDT clearly in the clinical record (iCLIP/Geneworks).
• To contribute towards the identification of patients that may be eligible for the clinical trial January 2026
• To liaise with the support team from the UK TS Association (TSA) to ensure that the views and needs of patients are addressed.
• To lead educational sessions for patients, parents and carers, and other health professionals about TSC.

Detailed job description and main responsibilities

Other Duties/Key Results Areas:

• To have responsibility for the Health, Safety and Welfare of self and others and to comply at all times with the requirement of the Health and Safety Regulations.
• To ensure confidentiality at all times, only releasing confidential information obtained during the course of employment to those acting in an official capacity in accordance with the provisions of the Data Protection Act and its amendments.
• To work in accordance with the Trust’s Equal Opportunities policy to eliminate unlawful discrimination in relation to employment and service delivery.
• To promote at all times equal opportunities for staff and patients in accordance with St George’s Healthcare policies to ensure that no person receives less favourable treatment than another on the grounds of: age; disability; marriage and civil partnership; pregnancy and maternity; race (ethnicity); religion or belief; sex (gender); gender reassignment or sexual orientation.
• To ensure skills are up-to-date and relevant to the role, to follow relevant Trust policies and professional codes and to maintain registration where this is a requirement of the role. January 2026
• To comply with St. George’s Healthcare No Smoking Policies.
• To undertake such duties as may be required from time to time as are consistent with the responsibilities of the grade and the needs of the service

Applicant requirements

You must have appropriate UK professional registration.

The postholder will have access to vulnerable people in the course of their normal duties and as such this post is subject to the Rehabilitation of Offenders Act 1974 (Exceptions) Order 1975 (Amendment) (England and Wales) Order 2020 and as such it will be necessary for a submission for Disclosure to be made to the Disclosure and Barring Service to check for any previous criminal convictions.