The information below sets out the current situation for people with epilepsy who are trying to access cannabis-based medicines. You can read the latest Epilepsy Action update from April 2019 on this issue here.
On the 31 October 2018 the UK government rescheduled cannabis-based medicines. This process meant that legally, specialist doctors in the UK could prescribe these medicines for patients with "exceptional clinical need" including for some people with severe and treatment-resistant epilepsies. Epilepsy Action covered this legal change when it happened and you can read more about this here.
The 'legal' part above is very important. The fact that it is now legal for specialist doctors to prescribe some cannabis-based medicines does not mean that it will happen in practice. The change in the law was the beginning of the process to make these medicines available to those who could benefit.
It is also important to remember that currently all cannabis-based medicines that could be used to treat some people with epilepsy are unlicensed in the UK. Prescribing any unlicensed medicine in the UK is a complex process.
Individual decisions on prescribing cannabis-based medicines are taken by specialist doctors in consultation with patients and for children, with carers and families. To support specialist doctors in making these decisions professional bodies have produced interim clinical guidance that set out how and when cannabis-based medicines could be prescribed for patients with specific conditions.
For people with epilepsy, the relevant guidance has been produced by the British Paediatric Neurology Association (BPNA) for children and by the Association of British Neurologists (ABN) for adults.
The BPNA guidance provides information for specialist clinicians about when cannabis-based medicines could be prescribed for children with epilepsy and which medicines could be considered.
The ABN guidance provides similar information about when and which cannabis-based medicines could be prescribed for adults with epilepsy.
Epilepsy Action has previously set out what this guidance means for people with epilepsy who want to access cannabis-based medicines. You can access this information and see our response to some of the most frequently asked questions here.
Where are we at now?
Epilepsy Action believes that the current guidance is too restrictive. We have heard from a number of families of children with severe and treatment resistant epilepsies who are still unable to access cannabis-based medicines despite the change in the law.
In response to the guidance, Epilepsy Action deputy chief executive, Simon Wigglesworth said:
"While this change is an important step forward, the guidance we have seen so far on how it will work in practice seems extremely restrictive.
"It suggests that cannabis-based medicines will only be an option for a very limited number of people with epilepsy – children with Dravet or Lennox Gastaut syndromes. Though this is welcome, there are children and adults with other complex and treatment-resistant epilepsy syndromes who could potentially also benefit."
Whether people with epilepsy will be able to access cannabis-based medicines depends largely on three factors: the type of epilepsy a patient has, the treatment options that have been tried and ultimately whether a specialist doctor believes it is in the patient's best interests to prescribe.
Access to cannabis-based medicines for people with different epilepsies
The clinical guidance from the BPNA and the ABN focuses largely on two specific epilepsy syndromes, Dravet syndrome and Lennox-Gastaut syndrome.
Dravet syndrome and Lennox-Gastaut syndrome
The current clinical guidance focusses on these syndromes because there is good quality clinical evidence that a cannabis-based medicine, Epidiolex, can reduce seizure frequency in children with these particular epilepsies.
Epidiolex is the brand name of a drug that contains pure cannabidiol (CBD), a non-psychoactive compound found in the cannabis plant. It is currently unlicensed for use in the UK but it has been approved for use in the United States and is going through a similar process in Europe and the UK.
Patients with these epilepsy syndromes are most likely to be able to access cannabis-based medicines, in this case Epidiolex, but only as a treatment of last resort. More information about access for people affected by these syndromes can be found here.
Other severe and treatment resistant epilepsies
For people with other severe and treatment epilepsies the guidance is less clear and is slightly different for adults and children.
For children, the clinical guidance from the BPNA sets out that Epidiolex should be used as a treatment for last resort for children who meet three criteria:
- Have tried all the available licensed medicines for their type of epilepsy without success
- Are either not suitable for the ketogenic diet, or have tried the ketogenic diet and it didn't work
- Are not suitable for epilepsy surgery
These criteria could be met by a child with an epilepsy other than Dravet or Lennox-Gastaut syndrome. However, these are only recommendations, and it will be up to a child's specialist clinician to decide whether to prescribe Epidiolex in this situation.
For adults, the clinical guidance from the ABN recommends that Epidiolex should only be prescribed for people with Dravet or Lennox-Gastaut syndrome. Again, these are only recommendations and the ultimate decision is taken by a specialist clinician. It is very unlikely that adults with other epilepsies will be able to access cannabis-based medicines at this time.
If an epilepsy specialist recommends cannabis-based medicines for you, the decision must be approved by the hospital. The NHS in your local area will also need to agree to pay for it.
All other epilepsies
It is highly unlikely that people with other epilepsies will be able to access cannabis-based medicines at this time. Both the BPNA and the ABN guidance recommends that cannabis-based medicines should not be prescribed for people with controlled epilepsies.
Additional access information (all epilepsies)
If a specialist clinician recommends a cannabis-based medicine for you or your child, the decision must also be approved by the hospital.
The company who manufacture Epidiolex, GW Pharmaceuticals, are making the drug available to some specialist hospitals free of charge for some patients with Dravet or Lennox-Gastaut syndrome. This early access scheme will cover about 150 UK patients with these syndromes but we do not have any more information at this stage about how cases will be prioritised.
We will update this page as soon as we receive more information about the early access scheme.
The early access scheme is not the only way to access cannabis-based medicines. It is possible for a specialist clinician to prescribe Epidiolex or other cannabis-based medicines through the 'specials' process. As set out in the guidance above, this is only likely to happen in specific cases of exceptional clinical need. It will also have to be approved by the hospital and the NHS in your local area will need to agree to fund it.
What is Epilepsy Action doing?
Epilepsy Action remain concerned that the current clinical guidance is too restrictive for both children and adults. We are concerned that accessing cannabis-based medicines remains very difficult, even for people who meet the criteria set out above.
We having been engaging with key stakeholders including the government, NHS England and the BPNA to try and ensure that people who might benefit from these treatments are able to access them.
We are also engaging with the formal consultation process that has been set up by the National Institute for Health and Care Excellence (NICE). This process is scheduled to end in November 2019 with the publication of formal clinical guidance. This formal NICE guidance will replace the current interim guidance discussed above.
We have also been working in Parliament to raise our concerns. This includes responding to the Health and Social Care Select Committee inquiry on cannabis-based medicines. Epilepsy action is also working alongside other organisations such as the MS Society to raise concerns with decision makers, including in Parliament.
The media played an important role in bringing about the change in the law that has got us this far. We are continuing to support families with their individual media appeals and raising our concerns with journalists.
We know that this is an important issue for many people with epilepsy, especially those with severe and treatment resistant epilepsies. Epilepsy Action will continue working to ensure that everyone with epilepsy who could benefit from cannabis-based medicines can access them in a safe and timely manner.
If you would like to talk to someone about epilepsy, you can contact the Epilepsy Action Helpline for free on 0808 800 5050 or email firstname.lastname@example.org.