New information has confirmed that no data has been collected through the NHS patient registry, which was launched in 2021 to help build the evidence base for cannabis-based medicines.
Almost two years since the launch of the NHS cannabis patient registry in April 2021, Cannabis Health can reveal it is yet to enrol a single patient.
In response to a Freedom of Information (FOI) request, NHS England said while the registry has been developed, NHS trusts have yet to start using it and, as a result, there are ‘not currently any patients enrolled’.
In an email, received by Cannabis Health on 13 January, 2023 the response added that the NHS expects data to become available ‘in the coming year’.
The lack of progress has been described as ‘disgraceful’ and ‘extremely disappointing’ by those who want to see cannabis available through the NHS.
Medical cannabis has been legal in the UK since November 2018, with more than 20 clinics now prescribing it privately.
According to figures released by NHS Business Service Authority (NHSBSA) in January, a total of 89,239 prescriptions for unlicensed cannabis medicines were issued between November 2018 and July 2022. Fewer than five prescriptions for these products have been issued on the NHS.
In the last four years, there have also been 11,976 NHS prescriptions for the licensed cannabis medicines Sativex, Epidyolex and Nabilone.
The background to the NHS registry
The NHS patient registry was established in April 2021 following a 2019 review by NHS England, which highlighted some of the barriers to accessing cannabis-based products for medicinal use on the NHS.
One of its recommendations was the development of a patient registry to collect data on those being prescribed cannabis medicines, in order to help build the evidence around its safety and efficacy.
The registry is being managed and hosted by Arden and Greater East Midlands Commissioning Support Unit on behalf of NHS England. However, despite a mandatory reporting requirement supposedly having been in place for NHS trusts since April 2022, it remains unclear why no data has been collected.
The review was commissioned by the then Health Secretary Matt Hancock, in early 2019, after he met with families who were campaigning for NHS access following the law change.
Out of the 10 recommendations made in the review, the development of the patient registry and the launch of the Refractory Epilepsy Specialist Clinical Advisory Service (RESCAS) are the only two to have been implemented.
One of those campaigners, Matt Hughes, co-founder of Medcan Support, described this as ‘infuriating’.
“The review to the barriers in accessing cannabis-based medicinal products (CBMPs) on the NHS came about from families meeting the then Secretary of State for Health and Social Care, Matt Hancock, in Parliament in 2019,” he said, speaking to Cannabis Health.
“Despite the review and subsequent recommendations with an aim to open up access, we are still continually hitting barrier after barrier.
“As a parent, it’s infuriating that the recommendations haven’t been taken seriously. This type of data capture is vital to the future in accessing CBPMs on the NHS and our children’s future health and that of generations to come.”
A situation that ‘urgently’ needs to change
Advocates are now calling for the NHS to work with organisations in the private sector, which have been collecting real-world data on the effects of cannabis medicines for some time.
Drug Science’s T21 patient registry and Sapphire Clinics’ UK Medical Cannabis Registry now have over 10,000 patients enrolled in total, with a number of studies being published from this data demonstrating the effects of cannabis in conditions such as chronic pain, childhood epilepsy, depression, anxiety and PTSD.
David Badcock, CEO of Drug Science, the UK charity for drug reform, commented: “Even when one accounts for the Covid-19 pandemic, this information is stark. We’re extremely disappointed that the NHS hasn’t made any progress with its proposed patient registry.
“Drug Science has been delivering its own medical cannabis patient registry for the past three years. And T21 is now one of the largest such registries in the world, with 3,500 patients currently contributing their data on a regular basis.”
Mr Badcock added that Drug Science would be happy to share their findings with the NHS to support more widespread prescribing of cannabis medicines.
“We will happily share this data with the NHS, so that it can be used as evidence to support wider accessibility to medical cannabis through the health service,” he continued.
“Too many people cannot access or afford legal medicines that will benefit them in the UK. It’s quite disgraceful. And the situation quickly, urgently needs to change.”
Medcan Support is also soon to launch the next phase of its data collection in collaboration with Drug Science and Alta Flora. Mr Hughes has called for this information to be considered by the National Institute for Health and Care Excellence (NICE).
He added: “NICE published its new framework for real-world data last year, which was designed to help speed up access to innovative new medicines. Peer-reviewed data has been collected on children prescribed unlicensed cannabis medicines through Drug Science and Medcan Support and, more recently, Sapphire Clinics.
“We’d like to see this data considered by NICE and a review of their current guidance on the prescribing of unlicensed cannabis medicines.”
‘Data is as important as access’
Other industry experts say the reporting of data on CBMPs via the NHS should be mandatory, as is the case in other countries.
In Australia, the Therapeutic Goods Association (TGA) collects data on cannabis prescriptions through both prescribers and producers via the authorisation process and now makes this information publicly available.
Medical cannabis has been legal in Australia since 2016, and GPs can now prescribe without the support of a specialist consultant.
Elisabetta Faenza, the founder and CEO of Australian headquartered LeafCann Group and now the chair of the UK Cannabis Industry Council Standards Group, told Cannabis Health: “In 2016 we started in exactly the same place as the UK. What happened in Australia is now happening here, because everyone’s a startup when it comes to cannabis, including the government.
“The medical cannabis industry in Australia put a lot of effort into encouraging the TGA to collect and publish the data. We now have a dashboard that is open to the public on the TGA website and collects data for the long-term. Over 300,000 prescriptions have now been written in Australia and we’re not seeing any adverse affects to give the TGA any reason to pause things.”
She added: “There seems to be some moves to gather this data here, and, as is often the case, the method is there; they just need to enforce it. It needs to be mandatory in the UK as it is in Australia.”
Ms Faenza would also like to see a dialogue between the NHS and the private industry, as well as with those already doing the research in this field.
“The NHS, the Home Office, NICE and other regulatory bodies need to be having a regular, quarterly dialogue with leading researchers in the space, industry representatives and patient organisations,” she said.
“Data is as important as access, because it is the data will drive the arguments and provide the most compelling case [for cannabis medicines].”
NHS England ‘monitoring uptake of the registry’
When approached for comment by Cannabis Health, NHS England referred to a letter dated Monday 12 December, in which Professor Stephen Powis, national medical director of NHS England, and David Webb, chief pharmaceutical officer, wrote to all NHS trusts requesting that clinicians begin contributing to the registry.
“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.”
