Call for action over lack of NHS prescriptions of cannabis treatments for children with severe epilepsy

There have been only three NHS prescriptions for cannabis-based medicines to treat children with severe epilepsy, two years after the government changed the law to make it easier for doctors to prescribe the drugs, campaigners claim.

Families of children affected by epilepsy say more needs to be done to increase the availability of the treatments for children who can suffer hundreds of seizures a day.

The law was changed after high-profile campaigning by the parents of Alfie Dingley and Billy Caldwell in 2018.

But since then its thought there have been only three prescriptions for medicines containing CBD and THC active ingredients – two of which include Alfie and Billy.

Epilepsy Action and campaign group End Our Pain say the lack of NHS prescriptions is leaving families struggling and children suffering with severe epilepsy symptoms. Many are paying thousands of pounds to fund their own prescriptions.

Health secretary Matt Hancock asked the NHS to carry out a review of barriers to accessing the products in the health service and a report in 2019 recommended a study involving families accessing cannabis-based medicines privately to get them on the NHS under observation.

Instead the focus has been on setting up randomised controlled trials which Epilepsy Action and End Our Pain say is not suitable for all the families as they would be required to end the existing treatment before starting on the trial and some of them could receive only a placebo instead of active medication.

The organisations are calling on the Department of Health and Social Care and NHS England to deliver on the commitment and urgently set up an ‘alternative study’ so all children can continue getting treatment.

Simon Wigglesworth, deputy chief executive of Epilepsy Action, said: “The current situation continues to leave many families with desperately ill children in an unbearable position. Many are unable to access these treatments on the NHS, despite evidence that they can be effective and in some cases life-changing.  Even more families who had hoped to benefit from the change in the law are unable to afford these treatments at all.  

“We’ve been calling for high quality clinical trials since the start of this debate and warmly welcome the progress in this area. In the longer term this is the only way that could bring cannabis-based medicines for epilepsy into mainstream practice.  

“However, these trials are likely to take time to generate the evidence needed to allow more routine prescribing. The reality is that these children simply don’t have time to wait. Every seizure poses a potentially serious risk and can ultimately be fatal. Some children are having hundreds of seizures every day.”

Peter Carroll from End Our Pain added: “Families have had to resort to paying privately up to £2,000 a month. And now Covid restrictions have curtailed their ability to fundraise.  These families are emotionally and financially broken.

“We have presented potential solutions, including calling on the government to set up a special fund to help with the cost of the private prescriptions until the NHS gets its act together and NHS prescribing becomes more routine.”

A Department of Health and Social Care spokesperson said: “We sympathise with patients dealing with challenging conditions and the decision on whether to prescribe medicinal cannabis is rightly one for clinicians to make.

“Since the law changed, two cannabis-based medicines have been made available for prescribing on the NHS for patients with multiple sclerosis or hard to treat epilepsies, where clinically appropriate. This follows clear evidence of their safety, clinical and cost effectiveness.

“However, more evidence is needed to routinely prescribe and fund other treatments on the NHS and we continue to back further research and look at how to minimise the costs of these medicines.”