Families of children with epilepsy have threatened to take the NHS and other leading clinical institutions to court if access to "potentially life-saving" medical cannabis is blocked despite changes to the law, VICE can reveal.
Campaigners say the restrictive new guidelines, which by the NHS' own admission will see "very few people" prescribed medical cannabis, mean that neither Alfie Dingley nor Billy Caldwell – the two children whose high profile cases preceded the law change – will be able to get renewed access to their medication.
"That is outrageous, unacceptable and, frankly, daft," said Peter Carroll, director of campaign group End Our Pain. "We will do anything possible to rectify this absurd situation in parliament, in the media and in the court of public opinion. We will leave no stone unturned. Specifically, we are already speaking with lawyers who have given early indications that this is challengeable in the courts. Our message to the Dept of Health, to the NHS and the professionals involved is this: stand back, take a breath and sort this out before such steps are necessary."
The criticism comes after Teagan Appleby, a severely epileptic child, was prescribed a cannabis-based medicine, but was then blocked from accessing it by the NHS trust which controls the hospital where she is in intensive care.
The trust relented after her mother, Emma, criticised the "chaotic and cruel" approach, but Teagan remains unable to access a THC-based cannabis oil, and her family intend to take her to Holland to be treated as soon as she is well enough.
"I know what it's like to go through what she's going through, and I feel deeply sorry for her and her family," said Hannah Deacon, a campaigner and the mother of Alfie Dingley. "The End Our Pain group are doing all we can to support her to gain access to medical cannabis. She can now access Epidiolex, but she's yet to receive it and we're hoping that will happen very soon."
Anger has been directed towards clinical institutions which have warned doctors not to prescribe cannabis medicines, potentially undermining changes in the law.
Among various other statements, the Royal College of Physicians (RCP) said there is no strong evidence cannabis can help with chronic pain, and the British Paediatric Neurological Association (BPNA) reasserted that cannabis products should only be prescribed when surgery is not a possibility.
Recent studies have shown cannabinoids can exert anti-seizure effects and are appropriate for treating patients with drug-resistant epilepsy, with experts saying it is plausible that medicines containing THC are superior to CBD-only products – which would confirm countless anecdotal reports.
"The President of the RCP [Andrew Goddard] seems to have ignored the influential report of the National Academy of Science, Engineering and Medicine, which in turn was reviewed by the Chief Medical Officer, who concluded that there was conclusive evidence of efficacy in chronic pain," professor Mike Barnes, an expert in cannabis medicines, said. "It is a pity that Professor Goddard is ignorant of this substantial evidence, and by displaying his ignorance has condemned hundreds of thousands of people in this country who use cannabis illegally for pain to continue to be deemed criminals."
MPs also condemned the RCP and the BPNA on Monday for "crushing the hopes of many thousands of patients" through "botched and cruel" medical guidance that is effectively shutting down the new laws.
"We are now in the quite frankly cruel and ludicrous position of families with severely epileptic children once again having to fundraise to go abroad to get access to a medicine that we have just legalised in the UK," Sir Mike Penning said. "Those responsible for this botched and cruel outcome should hang their heads in shame."
It is understood that campaigners are looking at lodging either a class action lawsuit or a judicial review, where a judge would rule on the lawfulness of the decisions made by the public bodies involved. Meanwhile, the NHS has said "rigorous and auditable safeguards" around prescribing cannabis medicines will be followed, alongside "existing protocols on controlled drugs".
In its guidance, it states: "Possessing cannabis is illegal, whatever you're using it for," with possible side effects including "suicidal thoughts", "hallucinations" and "reduced appetite".
An NHS spokesperson said the changes mean specialists can prescribe cannabis-based products to a "small number" of patients if their needs are not met by pharmaceutical drugs, and there is evidence of its benefit. This may require patients to travel abroad to prove the efficacy of the medicine.
Cannabis was rescheduled following a specially commissioned review, with Chief Medical Officer Dame Sally Davies concluding there is evidence it can have therapeutic benefits.
At a gathering of clinicians and healthcare professionals for the launch of the Medicinal Cannabis Clinicians Society on Monday at the RAF Club in Piccadilly, doctors told VICE that they would like more flexibility to prescribe cannabis medicines.
"We have to abide by the guidelines, but hopefully there will be some relaxation soon," one said.