- By Tanya Gupta and Sara Smith
- BBC news
A mother who has been fighting to get medicinal cannabis oil for her daughter’s severe epilepsy has said she will lose access to the drug in July.
Teagan Appleby’s family has been told her private doctor is retiring and will not be replaced.
His mother Emma Appleby, who lives in Aylesham, Kent, said there were no other doctors they knew who would prescribe the drugs without a licence.
The government said research into unlicensed products was needed.
Ms Appleby said Teagan takes Epidyolex, a licensed cannabis medicine available on the NHS.
Her daughter’s two other drugs, Bedica and T1:C20, are legal but unlicensed, she said, and must be prescribed privately and paid for.
Ms Appleby said: “Doctors are refusing to prescribe because they are not supported by their trusts.
“The government are saying it’s the doctors now. The NHS are saying it’s the doctors discretion and everyone is dumping each other.
“No one takes responsibility.”
He said between now and July he would be “pushing, fighting, just trying to raise awareness of how bad it is.”
Ms Appleby said that after their doctor announced plans to retire, the family were advised to contact another doctor, but when they did, they found her books were full.
Without the medicine, her daughter could have 300 seizures a day, she added.
The family currently spends up to £2,000 a month on private care.
“Huge personal cost”
Charlotte Caldwell, mother of Billy whose case led to a change in UK cannabis laws, told the BBC that a third prescriber was available. You said Billy received the UK’s first NHS-funded cannabis prescription.
She has since created the I Am Billy foundation and said families, including the Applebys, could contact the organization for help.
Ms Caldwell, who lives in County Tyrone, said private prescriptions were meeting patients’ needs in part, but at “huge personal cost, up to £24,000 a year”.
His foundation is working with medical product manufacturers to give pediatric epileptic patients their medicines while participating in Rescas, which aims to advise both advisers and NHS commissioners on funding applications.
Ms Caldwell said: “There is help there and this is a really difficult situation for families to be in, but until quality data is collected, we need medicine makers to step up and give these families their medicines.
“There is no manufacturer that should be taking thousands of pounds a year from vulnerable families with chronically ill children.”
A Department of Health spokesperson said: “In 2018, we changed the law to allow specialist doctors to prescribe cannabis products, where clinically appropriate and in the best interests of patients.
“Authorised cannabis-based medicines are funded by the NHS where there is strong evidence of their quality, safety and efficacy.
“We are taking an evidence-based approach to unlicensed cannabis treatments to ensure they are proven safe and effective before they can be considered for wider introduction into the NHS.”
He said the most significant barrier to unlicensed cannabis products was a lack of evidence on quality, safety, and clinical and cost effectiveness.
He said without evidence, doctors would remain hesitant to prescribe and decisions about NHS funding could not be made, which is why the government was focusing on research.
Researchers from University College London and Great Ormond Street Hospital for Children are working to carry out drug trials in the treatment of drug-resistant epilepsies in adults and children, the department added.
An NHS spokesman said he was unable to comment on individual cases but hoped to “arrange a meeting with Teagan and her family to make sure there is support for her locally”.
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