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.
Teagan takes Epidyolex, a licensed cannabis-based medicine available on the NHS. Her two other medicines, Bedica and T1:C20, are legal but unlicensed and have to be privately-prescribed and paid for.
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.
‘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.”
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.