New information reveals a ‘major disconnect’ between NHS and private prescribing of cannabis medicines is ‘holding back progress’ in the UK, potentially failing thousands of patients.
More than six in 10 NHS Foundation Trusts in England (61%) say they did not prescribe any cannabis-based medicines in 2021, according to new data obtained by the Cannabis Industry Council (CIC).
The council submitted Freedom of Information (FOI) requests to 152 NHS trusts across the UK between October-January 2022.
From 105 responses, the data shows that 977 people were prescribed cannabis-based medicines through the NHS in 2021, equating to just nine individuals per trust. Of those only 201 were children.
These figures, however, only reflect the number of patients receiving licensed cannabis-medicines, which are recommended for prescription on the NHS under guidelines set out by the National Institute for Health and Care Excellence (NICE).
NICE publishes recommendations for doctors around what products should be prescribed through the health service, based on their effectiveness and value for money.
As it stands there are only three licensed cannabis-based medications in the UK. These are Sativex, which is prescribed for spasticity associated with multiple sclerosis, Epidyolex for seizures related to certain rare forms of epilepsy, and Nabilone which is used to treat chemotherapy-induced nausea and vomiting.
Cannabis Health is aware of only three NHS prescriptions for unlicensed ‘whole plant’ cannabis products, which contain the full spectrum of compounds from the plant, including potentially beneficial minor cannabinoids and terpenes.
In contrast to this data, over 20,000 patients currently receive unlicensed products privately for a range of conditions from chronic pain to anxiety, with medical cannabis having been legalised on prescription since November 2018.
“These shocking findings from the Cannabis Industry Council highlight how the NHS in England is failing to help tens of thousands of patients with serious and life-threatening conditions,” said Mike Morgan-Giles, CEO of the CIC.
While Matt Hughes, patient representative for the CIC and co-founder of Medcan Support added that they demonstrate an ‘unwillingness’ to prescribe within the NHS.
The status of the NHS patient registry
In 2019, a review by NHS England highlighted some of the barriers to accessing cannabis-based products for medicinal use on NHS prescription. One of the recommendations was the development of a patient registry to collect data on those prescribed cannabis medicines, in order to help build the evidence around its safety and efficacy.
The registry was established in April 2021 and is managed and hosted by Arden and Greater East Midlands Commissioning Support Unit on behalf of NHS England. But to date there has been little information shared publicly on its progress.
On Monday 12 December, Professor Stephen Powis, national medical director of NHS England, and David Webb, chief pharmaceutical officer, wrote to all NHS trusts requesting that all clinicians begin contributing to the registry.
According to the letter, a mandatory reporting requirement has been in place since April 2022.
“The registry offers a vital opportunity for the collection of observational information for patients who are taking licensed and unlicensed CBPMs under prescription,” the letter states.
“It will provide a resource to support UK-wide understanding of treatment for patients receiving cannabis-based products.”
NHS England says it will be ‘monitoring uptake of the registry’ and ‘sharing regular reports with relevant arm’s length bodies and government departments as required’.
It adds: “We ask that teams start to take the necessary action as soon as possible to ensure relevant entries are made in the registry.”
The question remains as to why data is not being submitted to the patient registry.
Cannabis Health contacted NHS England and put this to them. We did not receive a response other than to reiterate that its ‘latest position’ is summarised in the letter. Neither did they respond to our further request for comment on the findings of the FOI request.
Collecting data on unlicensed cannabis medicines
Speaking to Cannabis Health, Mr Hughes went on to highlight the fact that any data which is collected through the patient registry will only take into account the three licensed medicines, neglecting to consider the large numbers of patients prescribed whole-plant products privately.
“Through the Freedom of Information request we can get a good idea of what is being prescribed on the NHS and the patient registry is only going to be a reflection of that,” he said.
“Whereas in reality, we have over 20,000 patients being prescribed cannabis privately, all of that data is currently being missed by the NHS.
“This is only holding things back in terms of our progress in the UK, as clinicians are not having the opportunity to learn more and improve their understanding of these unlicensed cannabis medicines.”
He has called for the NHS to work with the private clinics who are prescribing these products in order to help drive forward wider access.
“There’s a major disconnect between the private sector and the NHS,” he added.
“That gap needs to be filled by the NHS collecting data through the private sector and working with organisations like Drug Science, which is already doing so through access schemes such as Project Twenty21.”
Other barriers preventing prescribing
Chronic pain is the indication for which cannabis is most commonly prescribed in the private sector. However, NICE guidance published in 2019 does not recommend the prescribing of any form of cannabis-based medicine for chronic pain.
In parliament on Wednesday 14 December, Health Minister Will Quince was asked what steps he is taking to ensure that chronic pain patients can access affordable prescriptions for medical cannabis.
Addressing the question, put to him by Martyn Day, Scottish National Party MP for Linlithgow and East Falkirk, Mr Quince said until there was more evidence no assessment of cost-effectiveness could be made
“The Government revised the law to allow specialist doctors to prescribe cannabis-based products, where clinically appropriate and in the best interests of patients,” he responded.
“However, the National Institute for Health and Care Excellence does not recommend that cannabis-based medicines are offered to manage chronic pain due to lack of evidence on safety and efficacy and recommends further research. Until such evidence is available, no assessment can be made on cost effectiveness.
“The funding of private prescriptions is the responsibility of patients seeking those treatments.”
The CIC believes that the prescribing of cannabis medicines for chronic pain could be introduced across the NHS at a ‘net-zero’ cost and is currently working with the University of York to fund a full health economics analysis to demonstrate this.
“There is an unmet clinical need for a number of chronic conditions where cannabis has been clinically proven to be of benefit,” Mr Hughes commented.
“At a time of economic struggle, patients are forced to seek treatment privately at significant cost. For many they simply cannot afford to do so and are forced to seek access from illicit sources and risk criminalising themselves.”
He added: “The NHS can do far more to improve education in this area of medicine, funding mechanisms for unlicensed medicines and support clinicians in prescribing. They have to do better for patients.”
NICE has made nine separate recommendations for further research across all the indications and cannabis-based medicinal products and the body supports NHS England’s call to collect evidence from both randomised controlled trials and observational studies.
In 2021 it published a clarification to its guidance on the prescribing of cannabis-based medicines in treatment-resistant epilepsy, making it clear that while a population-wide recommendation could not be made, doctors could prescribe if they considered it ‘would be appropriate on a balance of benefit and risk and in consultation with the patient and their families and carers.’
Cannabis Health understands that several letters have been issued throughout the health system to highlight the available guidance on the prescribing and use of unlicensed medicines. Clinicians have also been made aware of how they can access the Health Education England’s (HEE) cannabis education package.
A spokesperson for NICE said: “Until there is clear evidence of the safety and effectiveness of cannabis-based medicinal products, specialist doctors need to consider individual patient circumstances, clinical condition and need, and to weigh up, with the patient or carer, the relative risks and benefits in choosing treatments.
“It’s also important to point out that even had NICE recommended widespread use of these products, it would not necessarily mean that they would become routinely available on the NHS. This is because the majority of the products are unlicensed and so access will only be available from specialist doctors, supported by local governance systems, and adhering to General Medical Council guidelines of prescribing.”
Cannabis Health also approached NHS England for comment but had not received a response at the time of publication.
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