Template email to send to your MS / MP
Dear [Your MS/MP]
Funding for Tuberous Sclerosis Clinic, Institute of Medical Genetics, University Hospital of Wales, Cardiff
I am writing to raise my concern about the future of the Tuberous Sclerosis Clinic at the Institute of Medical Genetics, University Hospital of Wales, Cardiff.
Tuberous Sclerosis Complex (TSC) is a rare, genetic condition that can lead to benign tumours growing in various parts of the body including the brain, eyes, heart, kidney, skin and lungs.
[I/my son / daughter / family member] lives with TSC. The condition has a serious impact on our family and means that [please share your own experience].
The complexity of TSC means that support from a multidisciplinary team of healthcare professionals working together in a clinic setting is key to providing joined-up support for people living with the condition and their families.
The Tuberous Sclerosis Clinic in Cardiff has been a lifeline for me, and for my family. I know that that the doctors running the clinic have submitted a business case to the Welsh Health Specialised Services Committee (WHSSC) seeking funding to secure the long-term future of the clinic. They have not yet secured funding, and I am worried that this service which is vital to my family’s health and wellbeing might not be there when we need it in future.
Please can you raise my concerns with the Health Minister, the Director of WHSCC and any other senior managers at NHS Wales who can influence this decision? My family and others across the country who are living with TSC need reassurance that this vital service for those living with TSC in Wales is safe.
I look forward to hearing from you.