Seren Hughes' parents concerned over epilepsy drugs changes
The family of a nine-year-old girl with severe epilepsy claim their GP practice phoned to tell them it will no longer be prescribing her usual medication.
Seren Hughes's father said Machynlleth Health Centre would no longer sign the repeat prescriptions for the medication that reduces her seizures.
Hefin Hughes said it came as a shock as his daughter has had the medication from the surgery for six years.
The health centre said the medication can only be prescribed by specialists.
Powys Teaching Health Board said it sincerely hoped issues between the medical practice and the family can be resolved swiftly.
Seren has had complex epilepsy since she was born.
She used to have up to 100 seizures a day but, after surgery in 2016 and further research, specialists found that a cocktail of medication helped control the condition and her quality of life improved.
But on Monday evening her parents had a call that has left them concerned.
Mr Hughes said: "It's a matter of life and death basically if she gets this medication or not - it helps to stabilise her epilepsy."
He said Seren has been taking a combination of four different drugs for six years with repeat prescriptions from the GP practice in Machynlleth.
"The only explanation we've had is that the surgery shouldn't be the ones who dispense it to us and that the medication isn't licensed," he said.
"They said we should get the medication from the local hospital. But when we asked which hospital - Bronglais in Aberystwyth, the Heath in Cardiff or Great Ormond Street - they said they didn't know.
"Why should a child with special needs and someone who's been through what Seren's been through face maybe having to go without her life-saving medication?"
In a statement, the surgery said it was "working hard to ensure all local and national safe prescribing guidelines are being met".
"Some of the work we are doing has identified highly specialised medications which are only suitable for specialist consultant prescribing," a spokesperson added.
"While medicines will still be available locally, we are looking to ensure the prescribing of these is returned to the most qualified, experienced, knowledgeable and skilled clinicians for the individual specialties involved."
Neurologists in the University Hospital of Wales in Cardiff, and specialists in Great Ormond Street in London have been treating Seren.
Her parents contacted UHW on Tuesday morning and said they were assured that the four drugs prescribed for Seren are all licensed and are needed to control her condition.
The hospital is also sending an emergency prescription so the family has six weeks' supply of the medication.
Local county councillor Elwyn Vaughan has raised concerns with the local health board and asked AM Helen Mary Jones to escalate the matter with the health minister.
Mr Vaughan said: "Between us I hope we can get to the bottom of it and resolve it once and for all."