Dear Prime Minister and Secretary of State for Health and Social Care,

We urge you to take immediate action to address the failure to collect clinical evidence from patients prescribed cannabis-based medicines, eight years after the law changed in November 2018.

For years, children and adults with severe, treatment-resistant conditions have been denied NHS-funded access because of a lack of clinical evidence. Yet despite repeated requests from patients and campaigners for this evidence to be collected, the observational research pathway recommended in 2019 was never implemented.

In 2020, the Advisory Council on the Misuse of Drugs (ACMD) described the national patient registry as crucial to assessing the impact of the 2018 law change, recognising the importance of collecting both NHS and private prescribing data. NHS England established the registry in 2021, and in 2022 the Government accepted the ACMD's recommendation, while NHS England reminded NHS providers that reporting was mandatory under the NHS Standard Contract.

However, in October 2026, the Department of Health and Social Care confirmed that not a single patient entry had been collected.

An internal NHS England briefing also revealed that 84 NHS user access requests remained outstanding and that consideration was being given to closing the registry.

The ACMD is now reviewing the impact of the 2018 law change, yet the national registry it considered crucial has no patient evidence to contribute.

Behind this failure are real people. Ben has suffered severe drug-resistant epilepsy since birth and experienced hundreds of seizures every day until he started prescribed whole-plant cannabis medicines. Since starting treatment, his seizures have reduced by over 90%, giving him seizure-free days for the first time in his life. Yet his family continues to fight for NHS-funded access to the treatment that has transformed his life.

It cannot be right that patients continue to be denied NHS access because more evidence is needed, while the NHS has failed to collect the very evidence it promised.

We urge the Government to:

First: Safeguard and make the national patient registry operational as part of an observational research pathway, collecting and independently assessing historical and ongoing clinical outcomes from NHS and privately prescribed patients, including those using cannabis-based oils and flower, to inform a funded NHS access pathway for patients with documented clinical benefit.

Second: Commission a full independent, publicly reported inquiry into the ongoing barriers to NHS access for patients with unmet clinical needs, including why the November 2018 law change has failed to deliver meaningful access, why the recommended clinical evidence was never collected, the registry's operation and oversight, public expenditure, accountability, and the impact of these failures on patients and families.

Third: Ensure the ACMD's current review addresses the absence of national registry data and considers how this failure affects its assessment of the November 2018 law change.

Eight years is long enough. Patients with an unmet clinical need cannot continue to be left behind.

Yours sincerely,

End Our Pain

Forgotten Children of 2018