A unique one-stop clinic for people with Dravet syndrome has been launched at the Epilepsy Society’s Chalfont Centre
26 November 2024: The service, thought to be the only one of its kind in the UK, is designed to reduce the number of clinical appointments a person has to attend, reducing stress and accelerating any treatment changes as required.
The new service is specifically for people who have a severe form of epilepsy, Dravet syndrome, and who are prescribed the medication fenfluramine which requires careful heart monitoring. For the first time, patients will be able to see a cardiologist at their epilepsy clinic without having to make a separate appointment at another hospital.
Professor Sanjay Sisodiya, Director of Genomics at the Epilepsy Society, hopes that in time, multi-disciplinary clinics for adults will become the gold standard in treating people with complex epilepsy.
“Multi-disciplinary clinics are standard in paediatric care but much more difficult to find in adult care,” he said. “Integrated care should be the future for those with complex care. It is what we should be doing. No-one should have to visit five different clinics – we should be able to offer holistic care in clinics that provide a range of disciplines including cardiology, psychiatry and speech and language therapy. This service is very much the start of things to come.”
We should be able to offer holistic care in clinics that provide a range of disciplines including cardiology, psychiatry and speech and language therapy. This service is very much the start of things to come
The new service means that adults with Dravet syndrome who are prescribed fenfluramine will be offered on-site echocardiography, undertaken and reviewed by a cardiologist at the Chalfont Centre during their regular epilepsy appointment.
Monitoring is carried out before treatment begins and every six months for two years, then yearly. If heart problems are detected, the medication may have to be stopped but regular heart checks will continue.
Importance of minimising stress
Dr Lisa Clayton who is running the service said: “As new antiseizure medications become available, it is important that we are able to offer these in a way that is safe whilst minimising the impact that it has on people with epilepsy and their caregivers.
“Fenfluramine treatment requires regular echocardiogram monitoring, so being able to do this during their regular epilepsy clinic appointment reduces the number of hospital visits and, importantly, reduces stress for the person with epilepsy and their caregivers.
“We believe this is the only service of its kind for adults with Dravet syndrome in the UK.”
Read more news and conference reports about Dravet syndrome.
