The issue of cannabis-based medicines for epilepsy has been back in the spotlight in the last couple of weeks. We said we’d keep you updated and below we’ve tried to do just that.
Medicinal Cannabis in the House of Commons
On Monday 8 April there was an urgent question in the House of Commons about cannabis-based medicines. The question was about the case of a nine-year-old girl, Teagan, who has a Lennox-Gastaut Syndrome. Her family tried to bring cannabis-based medicines containing THC and CBD into the UK from Holland after being unable to get a prescription for the drug in the UK.
During the response to the question the Secretary of State for Health and Social Care, Matt Hancock, set out some additional actions the government were taking.
1.) The government have asked NHS England to carry out a ‘process evaluation’ of the current prescribing process for cannabis-based medicines. This will look at the barriers to prescribing where doctors think cannabis-based medicines are appropriate.
2.) The government have asked the National Institute for Health Research (NIHR) and relevant drug companies to produce evidence around cannabis-based medicines. This evidence will help to improve the evidence base and support decisions about the funding of these medicines.
3.) There will be a training package produced for doctors by Health Education England (HEE) to support them in prescribing cannabis-based medicines. There is more information about this below.
4.) The Secretary of State also noted that he is interested in hearing about specific cases of patients and families who are trying to access cannabis-based medicines:
‘I am interested in hearing about specific cases…so that we can ensure that the appropriate clinical decisions can be made.’
Patients and families affected by severe and treatment resistant epilepsies who are struggling to access cannabis-based medicines should contact their local MP asking them to raise their case with the Secretary of State.
Health and Social Care Select Committee – Medicinal Cannabis inquiry
Late last year the Health and Social Care Committee in Parliament began an inquiry into medicinal cannabis. As part of the inquiry, Epilepsy Action sent written evidence to the Committee. You can read our full submission here – it’s a long read but key points and suggested next steps are set out on the first page.
On the 19 and 26 March, the Committee held two oral evidence sessions to allow the Committee to hear from some key stakeholders and for committee members to ask questions of them. These included expert doctors, government ministers and others. You can see the full written minutes of the oral evidence sessions for the 19 March here and for the 26 March here.
The Committee will use the written and oral evidence to write a report on the issue of medicinal cannabis in the UK. Committee reports are important documents and it is usually the case that the government will respond to the report including any recommendations the Committee might make.
We’ll be sure to keep you updated as this process moves forward.
Training materials for doctors
Until November 2018 most cannabis-based medicines were classified as schedule 1 drugs. This classification meant that doing research into these drugs in the UK was very difficult. Specialist doctors in the UK are experts in their fields and keep on top of new medical developments. However for many UK doctors, cannabis-based medicines were not an area of focus before the change in the law.
Epilepsy Action and others encouraged the NHS and others to provide additional information and training for doctors about cannabis-based medicines. It is important for doctors to be well informed about treatments in order to make the best possible prescribing decisions.
NHS England have now commissioned Health Education England (HEE) to develop an online training programme for health care professionals across the UK. The training programme should help to support clinicians in prescribing these products and should be available to them in the coming months.
Epilepsy Action video – Medicinal Cannabis, where now and what next?
Our Senior Policy & Campaigns Officer, Sam Mountney, featured in a short video discussing the current situation around cannabis-based medicines for epilepsy and potential next steps.
Prescribing data for cannabis-based medicines
Epilepsy Action believes that the clinical guidance for prescribing cannabis-based medicines in the UK is too restrictive. Because of this there are concerns that very few people have been prescribed cannabis-based medicines for epilepsy since the law changed in November 2018.
There is currently no data available for how many cannabis-based medicines have been prescribed in the UK. The first set of prescribing data for cannabis-based medicines was expected at the end of March 2019 but this deadline has now moved. It’s not clear when this data will be published.
Given the issues around accessing cannabis-based medicines for epilepsy, this data is important for finding out the scale of the problem and exploring what can be done to improve the situation.
Epilepsy Action recently wrote to the Department for Health and Social Care, along with the MS Society and The Brain Tumour Charity, asking the government to ensure the data was made public and was presented in a clear and accessible way.
Data is really important when it comes to an issue like this and we’ll continue to push the government to publish this as soon as possible.