Cannabis-based products for medicinal use: Patient registry

Classification: Official
Publication reference: PR1093

To:

  • Trust single points of contact
  • Trust chief pharmacists
  • Trust medical directors
  • Regional specialised commissioning medical directors

Dear Colleagues,

Cannabis-based products for medicinal use: Patient registry

Since 1 April 2021, a patient registry for those people prescribed licensed or unlicensed cannabis-based products for medicinal use (CBPMs) has been established. From 1 April 2022, there has been a mandatory reporting requirement as set out in all direct commissioning contracts for 2022/23 to complete the patient registry.

We are asking for your support in making sure that relevant clinical teams within your trust who may be involved in the prescribing of licensed and unlicensed CBPMs are aware of this requirement. We ask that teams start to take the necessary action as soon as possible to ensure relevant entries are made in the registry.

Background

In 2019, NHS England’s review, ‘Barriers to accessing cannabis-based products for medicinal use on NHS prescription’ was published. The review recommended the development of a patient registry for clinicians to collect a uniform data set, across all indications for patients prescribed licensed or unlicensed CBPMs in the United Kingdom. The registry is managed and hosted by Arden and Greater East Midlands (aka GEM) Commissioning Support Unit on behalf of NHS England.

The registry offers a vital opportunity for the collection of observational information for patients who are taking licensed and unlicensed CBPMs under prescription. It will provide a resource to support UK-wide understanding of treatment for patients receiving cannabis-based products.

Currently the following cannabis-based products are licensed for use in the UK:

  • Sativex® – licensed for symptom improvement in adult patients with moderate to severe spasticity due to multiple sclerosis (MS).
  • Epidyolex® – licensed for seizure control associated with Dravet, Lennox-Gastaut syndromes and tuberous sclerosis complex.
  • Nabilone® – licensed for control of chemotherapy-induced nausea and vomiting in adults.

Key next steps

To support the effective implementation of the registry, NHS trusts should ensure that:

  • all clinicians involved in the prescribing and use of cannabis-based medicinal products (eg neurology clinicians) as well as controlled drugs accountable officers (CDAOs) are aware of this upcoming requirement
  • lead clinicians contact Arden and GEM CSU (email: apps@nhs.net) for training and technical support on using the registry
  • all prescribers issuing prescriptions for CBPMs make relevant register entries and keep them up to date as soon as possible after prescriptions are issued.

For any technical queries on the registry please contact agem.apps@england.nhs.uk, and for any policy queries on CBPMs please contact england.medicinalcannabis@nhs.net.

NHS England will be monitoring uptake of the registry and sharing regular reports with relevant arm’s length bodies and government departments as required.

Yours sincerely,

Professor Stephen Powis, National Medical Director, NHS England.
David Webb, Chief Pharmaceutical Officer, NHS England.