Medicinal cannabis: Teagan Appleby may lose access to epilepsy treatment

Teagan could have up to 300 seizures a day without the drugs, her mother says

A mother who fought to obtain medicinal cannabis oil for her daughter's severe epilepsy has said they will lose access to the medication in July.

Teagan Appleby's family have been told her private doctor is retiring and will not be replaced.

Her mother Emma Appleby, who lives in Aylesham, Kent, said there were no other doctors that they knew of who would prescribe the unlicensed drugs.

The government said research was needed on unlicensed products.

Mrs Appleby said Teagan takes Epidyolex, a licensed cannabis-based medicine available on the NHS.

Her daughter's two other medicines, Bedica and T1:C20, are legal but unlicensed, she said, and have to be privately-prescribed and paid for.

Emma Appleby said there were no other doctors they could go to

Mrs Appleby said: "Doctors are refusing to prescribe because they are not being supported by their trusts.

"The government are saying it's down to the doctors now. The NHS are saying it's the doctors' discretion and everyone's passing the buck to each other.

"No-one's accepting responsibility."

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She said between now and July she would be "pushing, fighting, just trying to raise awareness as to how serious this is".

Mrs Appleby said that after their doctor announced plans to retire, the family were advised to contact another doctor, but when they did so, they found his books were full.

Without the medicine her daughter could have 300 seizures a day, she added.

The family currently spend up to £2,000 a month on private treatment.

They have fought a long-running campaign for the drugs to be supplied by the NHS.

Charlotte Caldwell's son Billy prompted a change in UK cannabis laws

'Huge personal cost'

Charlotte Caldwell, mother of Billy whose case led to a change in UK cannabis laws, told the BBC there was a third prescriber available. She said Billy received the UK's first NHS-funded cannabis prescription.

She has since set up the I Am Billy foundation and said families, including the Applebys, could reach out to the organisation for help.

Ms Caldwell, who lives in County Tyrone, said private prescriptions were partly fulfilling patients' needs but at "huge personal cost - up to £24,000 a year".

She said, however, that a scheme, known as Rescas and provided by Great Ormond Street Hospital, had been set up in 2020 to support paediatric neurologists when considering medical cannabis and other new treatments.

Her foundation is teaming up with medical manufacturers to gift paediatric epilepsy patients their medicines while taking part in Rescas, which aims to provide advice both to consultants and NHS commissioners on funding requests.

Ms Caldwell said: "There is help there and this is a really challenging situation for families to find themselves in, but until there is quality data gathered, we need the medical manufacturers to come forward and gift these families their medicine.

"There is no manufacturer that should be taking thousands of pounds a year from vulnerable families with chronically-ill children."

'Trials planned'

A Department of Health spokesman said: "In 2018, we changed the law to allow specialist doctors to prescribe cannabis-based products, where clinically appropriate and in the best interests of patients.

"Licensed cannabis-based medicines are funded by the NHS where there is clear evidence of their quality, safety and effectiveness.

"We are taking an evidence-based approach to unlicensed cannabis-based treatments to ensure they are proved safe and effective before they can be considered for roll out on the NHS more widely."

Treatment for Teagan is costing up to £2,000 a month

It said the most significant barrier to unlicensed cannabis-based products was lack of evidence on quality, safety and clinical and cost-effectiveness.

It said without evidence, clinicians would remain reticent to prescribe and decisions could not be made on NHS funding, which was why the government was focusing on research.

Researchers from University College London and Great Ormond Street Hospital for Children are working to run trials on medicines in the treatment of drug-resistant epilepsies in adults and children, the department added.

A spokesperson for the NHS said they were unable to comment on individual cases, but hoped to "arrange a meeting with Teagan and her family to make sure support is in place for her locally."

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