North Wales Assembly Member Mark Isherwood has called for the Welsh Government to provide the necessary treatments and levels of care for children with epilepsy in Wales, as outlined in the NICE guidelines.
Questioning the First Minister in the Chamber this week, Mark said “Last week, I hosted and chaired the Epilepsy Wales annual Epilepsy Aware event in the Assembly, and we heard that people with complex epilepsy were not able to access treatment, including the keto diet, although recommended as a first-line treatment by the National Institute for Health and Care Excellence”.
“This included children with epilepsy after unsuccessfully trying two first-line drugs, which is also recommended by NICE—children who have a GLUT1 diagnosis.
How do you therefore respond to their call for provision within Wales of the necessary treatments and levels of care as outlined in the NICE guidelines, a ketogenic team, and accepting the offer from the Daisy Garland foundation to fund a dietician in Wales for a year with immediate effect, alongside similar proposals in a list of ideas that would, finally, if delivered in Wales, meet the needs of these people and, as they say, impact positively on the finances of the NHS?”
The First Minister stated “that officials do know of discussions between Cardiff and Vale university health board and the Welsh Health Specialised Services Committee about the possibility of those services now being provided more locally.
So, those issues are ongoing as far as south Wales is concerned, and I look forward to a positive outcome of those discussions to see whether we can actually provide the service closer to south Wales at this moment in time than is presently the case”.
Mark added “The Welsh Government should be taking the lead in ensuring that these and other services are available across Wales, including the provision of psychologists to support those living with epilepsy, encouraging genetic testing in all patients with complex epilepsy and supporting early intervention and treatment which will improve the quality of life and reduce the long term impact of seizures”.
ENDS