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
The aim was to develop a holistic service to patients,
their families and their carers which is patient centred and caters to the
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
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 email@example.com
with your feedback.