The mother of a young boy with epilepsy says new prescribing guidelines for medical cannabis are so restrictive “almost no-one” will get it.
The law changed on 1 November to allow access to medical cannabis under prescription in the UK. However, Hannah Deacon, who fought to give her son medical cannabis, says guidelines on prescribing it are far too restrictive.
Hannah Deacon with son Alfie: “Without access to this medicine his epileptic seizures will come back,” she says
As a result, she says thousands like her have had their hopes dashed since the drug became available on prescription.
150 seizures a month
Before the change in the law, Deacon had received a special temporary licence to give the drug to six-year-old son Alfie Dingley. He had been suffering 150 seizures a month.
But she said the change in the law meant the Government took away the temporary license.
They said he no longer needed the license because a doctor can now write him a prescription, as with any other medicine.
Unable to get medical cannabis prescription
However, she said she has been unable to get a prescription.
“Without access to this medicine his epileptic seizures will come back – he can suffer up to 30 a day,” she says.
“I can’t find an NHS doctor in the country that will grant Alfie his medication, even though they know he needs it, because the guidelines for when doctors should prescribe medical cannabis are so restrictive.”
The law now allows doctors to prescribe cannabis for youngsters with rare forms of epilepsy, adults with chemotherapy-induced vomiting and multiple sclerosis sufferers.
Stringent rules
Professor Mike Barnes, who says guidelines on cannabis prescriptions are “grossly inaccurate”
However, the Royal College of Physicians (RCP) and the British Paediatric Neurology Association (BPNA) have set out stringent interim prescribing rules.
The guidelines suggest there is no “robust” evidence for using cannabis for chronic pain. They also say children should undergo brain surgery before receiving a prescription for epilepsy.
In a Facebook video, Deacon said families of epileptic children watch them “seizing all day, every day”. Meanwhile, the law was so tight that doctors were too scared to write a medical cannabis prescription to help them.
Guidelines ‘grossly inaccurate’
Professor Mike Barnes is an expert in medicinal cannabis and helped to secure Alfie’s license.
Neurologist Barnes called the guidelines “grossly inaccurate”.
The BPNA says “robust” trials are needed to investigate cannabis’s “therapeutic potential”.
The RCP says studies on cannabis as pain relief are of “uncertain clinical significance”.
Full guidance is expected in October 2019.
Experts estimate that between 20 per cent and 40 per cent of people with epilepsy also have autism.
Deacon has started a petition to widen cannabis access. Click here to see it.
Update to Deacon’s petition: 13 November 2018
Hannah Deacon has posted an update to her campaign. She wrote: “We have just heard that Alfie’s prescription is now safe and we have managed to secure an agreement with NHS England for his prescription to remain available to him on the NHS.
“This still means unfortunately that many hundreds of people still can not…”
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- US Army tests cannabis extract on autism
- World-first trial of cannabis for autism
- Drugs agency halts cannabis treatments
- Epilepsy may be treated with supplement
Published: 12 November 2018
