On the day that we mark the fifth anniversary of the legalisation of medical cannabis in the UK, we look back at the last five years.
1 November, 2018 was a day of celebration for patients and their families across the UK.
Following the high profile media campaigns by families of children with treatment-resistant epilepsy, then Health Secretary Sajid Javid announced in parliament that cannabis for medicinal purposes would be moved from a Schedule 1 to a Schedule 2 drug, under the Misuse of Drugs Regulations.
This move permitted all specialist consultants to prescribe cannabis as a ‘special’, or unlicensed medicine if it was deemed to be in the best interests of the patient.
Not only did it give hope to the parents of children with epilepsy, some of whom were experiencing hundreds of seizures a day, but also to the millions living with debilitating conditions which had failed to respond to conventional medications.
And while many of these patients – over 30,000 – have been able to access this treatment it has come at a cost. Mostly financial, but often an emotional and societal cost too.
Some have sold or remortgaged their homes and moved in with family and friends to afford their monthly prescription. Others have lost jobs and driving licences, been evicted and become embroiled in lengthy court cases and legal battles. Some are sadly no longer with us.
An FOI request submitted by Cannabis Health in August 2023 confirmed that from November 2018 to November 2022, ‘fewer than five’ patients had obtained a prescription for unlicensed cannabis medicines through the NHS.
Data from NHS Business Service Authority shows that in the same time period, over 140,000 separate prescriptions for these products were issued privately.
While NHS access is at a standstill, the private sector has at least seen some growth in recent years. There are now 31 clinics and 18 pharmacies prescribing and dispensing cannabis medicines in the UK. Over 30 companies are now importing cannabis-based medicines and 11 are thought to have a Home Office licence to produce high-THC products on home soil.
While not without its challenges, the private market has at least provided relief for some. However, the 30,000 pales in comparison to the estimated 1.8 million who are still thought to be self-medicating with cannabis accessed illegally. And the many millions more who are either unaware of its potential benefits or not willing to risk criminalising themselves.
Looking at chronic pain alone, the most common indication for which cannabis is currently prescribed, around a third of the UK population (34%) are thought to be living with some form of chronic pain condition, with more than 50 million opioid prescriptions written last year.
The children who have been left behind
The greatest irony of all, of course, is the fact that the children whose stories changed the law are the ones who have now been forgotten.
Cannabis Health first reported on the challenges facing paediatric access to cannabis medicines issue back in 2021, when it first emerged that no new paediatric consultants were willing to prescribe to children with epilepsy in the UK. Little has changed, despite the continued efforts of campaigners, many of them with sick children themselves.
With no clear route to NHS funding and not enough consultants willing to prescribe, these families have been blocked from every angle.
Carly Ashton, mum of two-year-old Esme, who is one of 850 children in the world with a genetic form of epilepsy known as SCN8A and has tried over 10 different anti-epileptic drugs, believes cannabis could help her daughter.
“Due to the lack of doctors willing to prescribe these medicines privately we are now completely blocked, like so many other families,” she says.
“It’s a matter of life and death for Esme. Her seizure burden is so high it could kill her if we don’t manage to stop them. The law was changed before Esme was born. She should have been born into a world where children with epilepsy could be treated with this medication, but instead they and their families are forced to continue to suffer.”
Carly adds: “It’s not fair, if one child has it on the NHS why can’t others?”
One of those children, Alfie Dingley, who was the first person to be prescribed unlicensed cannabis medicine through the NHS, has been seizure free for over three years. He plays football, annoys his sister and takes the bus to school on his own.
Alfie’s mum, Hannah Deacon, continues to fight for fair and equal access to cannabis through the NHS.
Speaking of the anniversary, she says: “The day the law changed, we thought that patients of all ages would get access where it was clinically appropriate to prescribe. It is sad and ironic that the law was changed due to the stories of children like Alfie and yet they are the very people who are not benefiting from this change.
“Along with the Medcan Family Foundation, I will continue to advocate for children with epilepsy and cancer, and their parents and carers, who might benefit from a medicinal cannabis prescription. As an organisation, we’ll continue to work with the Government and relevant charities to ensure that there is safe access. Without this, families like mine are pushed to the illegal market. We should never have a situation where people are using illegal cannabis for their very sick children. Alfie has had an NHS funded prescription for five and a half years now and has been seizure-free for three. This is why as a family we continue to push for access because we know how it can change lives.”
It’s not only children with epilepsy who are being left behind, but those with cancer and other life-limiting illnesses. Data collected through pre-clinical surveys distributed through the NHS and end-of-life hospice services suggests that up to 30% of children receiving palliative care are using some form of cannabis-based product. Parents are being driven to break the law to save their children.
Professor Mike Barnes, the neurologist who wrote the first NHS prescription for a cannabis medicine and who has continued to advocate for wider access whilst establishing organisations such as the Medical Cannabis Clinicians Society and the Cannabis Industry Council, recently came out of retirement to go back on the register in order to prescribe to some of these children.
“We have come a long way in five years with over 32,000 people now prescribed and plenty of product choice through a decent number of clinics. However, there are still real issues with NHS access,” he says.
“We should presume that when the law changed, the Government intended for cannabis to be available through the NHS like any other medicine. That is not the case. The Government could do much more to ease the prescription of CBPMs [cannabis-based products for medicinal use], like clarify the funding streams that Matt Hancock promised would not be a barrier to prescription – but are.”
Prof Barnes continues: “Medical bodies such as the British Paediatric Neurology Association (BPNA) could recognise some benefit from the medicine for children with intractable epilepsy. They have scared the paediatric community so much that not one single paediatrician would stand up and be counted and take on the prescribing role when one of the two prescribers retired. They are a disgrace to the profession.
He adds: “More education, and an open mind, is clearly needed. So much done, but so much more to do.”
How did we get here? A brief overview of events
- On 1 November 2018, Health Secretary, Sajid Javid announced that cannabis for medicinal purposes was to be moved from a schedule one to a schedule two drug, permitting all consultants on the specialist register to prescribe.
- In March 2019 when it became clear that the law change did not mean widespread NHS access, the new Health Secretary Matt Hancock commissioned an NHS review into the barriers. The resulting report, published in August 2019 made 10 recommendations, none of which have been implemented to date.
- In December 2020, the Advisory Council for the Misuse of Drugs also published a report on the impact of the change in legislation, which stated that a full review of international approaches to the legislation of CBPMs was needed. This is also yet to be carried out.
- In March 2021, Matt and Ali Hughes brought a legal case against NICE which led to a clarification of the guidance around the prescribing of CBPMs, that cannabis-based medicines can be prescribed in any individual case, where ‘clinically appropriate’.
- In April 2021, the NHS launched its cannabis patient registry. Two years later (in February 2023) an FOI request revealed that it was yet to enrol a single patient.
- In October 2021, the BPNA published new guidance for members, stating that there is ‘no evidence’ for the use of cannabis-based medicines beyond Epidyolex, and advises against the use of THC due to ‘safety concerns’. Despite the fact that Epidyolex also contains some amount of THC.
- In March 2022, Health Minister Gillian Keegan told parliament that the NHS is ‘working closely’ on two RCTs to compare the effects of medicines containing CBD, and CBD with THC, and a placebo. Any further details are yet to be made public.
- In February 2023, an adult patient secured NHS reimbursement for the prescription of an unlicensed cannabis oil containing CBD and THC. This is followed by the first reimbursement of a flower-based product in July, illustrating that a funding route was possible.
- In September 2023, in its latest report on drugs, the Home Affairs Committee recommended that the government widen access to cannabis on the NHS before the end of the next parliament. However, it failed to provide any indication of a path forward.
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