Project name: Tuberous Sclerosis Complex (TSC) National / Regional Service Development Joint Working Project
Project period: 12 months, to be extended to 24 months, subject to the achievement of the milestones in the first 12 months
Joint working project summary: The aim of this project is to improve the care of patients in Scotland with the rare disease TSC. It will provide an improved TSC multidisciplinary clinic where people with TSC and their carers and family can see all of the specialist clinical teams managing their care within a single visit. A small clinical team already exist but there is a need to expand the team with other specialties, particularly nephrology and bring all these specialties into one clinic. It will also provide for the creation of a new, or updating of the existing, TSC database and it is expected that a West of Scotland Regional or a National service would be set up and .
Specifically, the objectives of the Project are:
Improve care for patients with TSC specifically by providing multidisciplinary team approach to treatment;
reduce the number of clinic visits for TSC patients – all needs assessed in one visit;
create new or update existing TSC patient database;
set up a Regional and/or a National TSC service.
Expected patient outcomes for this project The joint working will provide:
An improved regional or national service through a clinic with access to all specialists involved in the treatment of patients with TSC, who would benefit from the expert review provided by this model of care.
Consistent care to the relevant patient population.
Improvement of patients’ outcomes.
Start Date and Duration: July 2016 – June 2017/June 2018
Project name: Tuberous Sclerosis Complex Clinic (TSC) Joint Working Project
Project period: 12 months
Joint working project summary: The aim of this project is to improve the care of patients in the West Midlands Region with the rare disease TSC. It will provide a specialist one-stop TSC multidisciplinary clinic where transition and adult patients and their families can see all of the specialist clinical teams managing their care within a single visit. A clinical team already exists in the specialities Urology, Nephrology and Neurology. This clinic will bring these specialists together with a TSC Specialist Nurse to be appointed in order to improve coordination of patient care and clinical outcomes.
Expected patient outcomes for this project: It is expected that the TSC clinic will provide - A registry of patients with TSC in West Midlands - Care pathways for patients with TSC in West Midlands - Diagnosis of patients in West Midlands with suspected TSC and for ongoing review and management of -those with a confirmed diagnosis of TSC. - Improved disease management due to coordination of care leading to improved clinical outcomes. - Increased ability for patients/families and carers to engage with wider TSC team by seeing all specialists in one clinic leading to improved patient experience. - Increased opportunities for patients to take part in TSC research if they choose to. - More and/or better use of medicines to improve the effectiveness of .treatment: prescription of treatment will be a purely clinical decision based on the needs of the patient