Specialist clinic for rare medical condition visits Cornwall
Experts, who provide specialist treatment, care and advice for a rare genetic condition called Tuberous Sclerosis recently visited the county.
Tuberous Sclerosis affects multiple systems in the body and given the rarity of the disease experts are usually based in specialist centres.
Tuberous Sclerosis is a genetic condition that can lead to growths in various organs of the body, but those most commonly affected are the brain, eyes, heart, kidney, skin and lungs. These growths may be referred to as benign (non-cancerous) tumours. When they cause problems it is mainly because of their size and where they are in the body.
There are less than ten people with this condition recorded in Cornwall at the moment, out of a population that exceeds 550,000. The nearest specialist clinic is located in Bath.
Following discussions with the Bath TS Clinic and the local Learning Disabilities (Adult Service) Team at the Cornwall Partnership NHS Foundation Trust, arrangements were made for the clinic to visit Cornwall and their experts to review patients locally.
Dr Rohit Shankar, Consultant in Adult Developmental Neuropsychiatry at the Cornwall Partnership NHS Foundation Trust said, “There is no local expertise currently available in Cornwall, this is why a regular link with the clinic in Bath is so important to ensure our patients wellbeing and the continued delivery of good practice.”
“However visiting the specialist clinic in Bath can be problematic, particularly for our patients who may experience distress caused by the distances needed to travel and the financial and logistical implications involved.
Dr Shankar added, “Unfortunately as the condition is so rare it does not qualify to have a dedicated service as it cannot justify the costs involved.”
“The collaboration between the Bath TS Clinic, led by Dr Farzana Hakim and the Cornwall Partnership NHS Foundation Trust showcases how excellent care by experts can be delivered locally and not necessarily expensively.”