Liverpool, Royal Liverpool University Hospital TSC Clinic

The Liverpool Tuberous Sclerosis service was developed in 2014 by clinicians who are passionate in supporting patients with TSC by offering a medical service to patients and guidance to their carers and relatives.   

Currently there are approximately 30 adult patients receiving the support of the service in Liverpool. The Trust is working closely with Alder Hey Children’s Hospital to develop the transition clinic which supports the younger patient’s journey into adult services.   

In 2014 there was increasing interest from clinicians in developing an individual TSC service. However, this proved difficult to co-ordinate due to no revenue and the competing demands of the consultants’ job roles. The result was a service bolted onto an existing peritoneal dialysis clinic.   The aim was to develop a holistic service to patients, their families and their carers which is patient centred and caters to the individual’s needs.     

The clinics take place every 3 months at the Royal Liverpool University Hospital. Two nephrologist consultants, a consultant urologist, a clinical psychologist, a learning disability nurse, a pharmacist and a TSC nurse support the service providing specialist advice to patients and their relatives. There are also plans for a neurologist to attend in January 2019 from the Walton Centre.     

In addition to the consultant led clinics, nurse led clinics take place each month for patients to drop in to discuss any concerns. For those who are unable to attend the hospital, the TSC nurse can also arrange home visits.    

A TSC patient forum take place every 3 months; this allows patients and families to chat together about the condition with clinicians, and please watch this space for details of the first patient forum in 2019.   

We have developed a TSC helpline to help answer questions for patients in between appointments and to provide advice and support from our specialised nurses you can call 0151 706 3276.   

Finally we are always keen to hear your views on how we can improve the service, contact with your feedback.