It has been a year since the law changed to allow specialist doctors to prescribe cannabis-based medicines. But what has changed for the people with epilepsy who could benefit? In short, not enough.
The law change was an important step. Though alone, it is not enough to ensure people with epilepsy who could benefit can access cannabis-based medicines on the NHS.
The debate has moved from legal issues around cannabis-based medicines to the important issue of research. Epilepsy Action has been clear from the start that more high-quality clinical research is urgently needed, but this takes time.
Many people affected by severe and treatment-resistant epilepsies simply can’t keep waiting. For those people where existing treatments have not worked and there is some evidence that cannabis-based medicines could be safe and effective, there is an urgent need for a middle way.
A recent NHS England and NHS Improvement report recognised this and made some sensible recommendations that could make this a reality. Matt Hancock, the Secretary of State for Health has also recognised that access needs to be improved. This is very welcome. But words must become actions.
Before the end of 2019, the National Institute for Health and Care Excellence (NICE) is due to publish its final guidance on cannabis-based medicines. This will set out when, where and how these medicines could be made available on the NHS.
The draft guidance did not make a recommendation on whether or not cannabis-based medicines should be used for severe and treatment-resistant epilepsies. This is unlikely to change when the final version is published. Ultimately the current barriers to access are likely to remain in place.
A way needs to be found to ensure that those with the highest need can access cannabis-based medicines while vital high-quality research takes place. Epilepsy Action is committed to working with decision makers to make this happen. It cannot take another 12 months - something needs to be done now.
Epilepsy Action deputy chief executive Simon Wigglesworth said:
“Given the nature of severe and treatment-resistant epilepsies, people affected by these conditions are often incredibly strong and resilient. They have to be. For many, the change in the law last year to allow cannabis-based medicines to be prescribed offered much needed hope. Twelve months on, this hope has turned to frustration and disappointment.
The government has repeatedly acknowledged that the current system is not working. Despite the warm words and constructive reports, very little action has been taken to improve access for those who could benefit.
Epilepsy Action has been clear from the start that more research is needed, particularly around cannabis-based medicines that also contain THC. The reality is that many people simply don’t have the time to wait for the much-needed improvements that have been recommended by NHS England and others. Every seizure poses a potentially serious risk and can ultimately be fatal.
In the absence of high-quality clinical evidence, Epilepsy Action advocates for a middle way. There needs to be a system in place to allow the patients with the highest need to access these medicines now with appropriate clinical guidance and monitoring. This could help to build an observational evidence base while addressing the most immediate issues with the current system. In recent months, this approach has been acknowledged by the government and NHS England/ Improvement. However, recognition and recommendations need to be turned into action.
Epilepsy Action remains committed to working with decision makers to make this happen. But it cannot take another twelve months - something needs to happen now.”