“These children don’t have time to wait” – Epilepsy Action joins families in fight for access

Two years on from the law change, a leading epilepsy charity has joined forces with families, calling on the Government to deliver on its medical cannabis commitment.

Families of children with severe epilepsy and leading UK charity Epilepsy Action have pleaded with the Government to act on its promises for easier access to cannabis-based medicines.

The call comes two years after medical cannabis was legalised, following the high-profile campaigns by the families of Alfie Dingley and Billy Caldwell, two boys with intractable epilepsy, in 2018.

It was hoped that this would allow more people with severe and treatment-resistant epilepsies to access these products on the NHS.  But since the law change, campaigners believe only three NHS prescriptions for cannabis-based medicines containing both CBD and THC have been written for children with epilepsy – including Alfie and Billy.

The lack of NHS prescriptions has left many families having to fund their own prescriptions at a cost of thousands of pounds every month – with many more unable to access the medication at all.

Epilepsy Action has now joined the campaign group End Our Pain in putting pressure on the Government to step in.

“The current situation continues to leave many families with desperately ill children in an unbearable position,” said Simon Wigglesworth, deputy chief executive of Epilepsy Action.

“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.”

Following intense pressure the Health Secretary Matt Hancock, instructed the NHS to carry out a review of apparent barriers to accessing these products in the health service.

The report published in August 2019 recommended an observational trial should be set up to enable those families who were currently accessing medical cannabis privately – with positive clinical outcomes – to obtain them through the NHS with appropriate medical monitoring and supervision.

This commitment has seemingly been forgotten in recent months with mention only of full scale Randomised Controlled Trials (RCTs) that are being developed.

While End Our Pain and Epilepsy Action have welcomed these trials, they are not suitable for those children who are already benefiting from private prescriptions.

They would have to ‘wash out’ the cannabis-based medicinal products they are taking which are currently proving effective and there is a chance they would be placed onto a placebo. While this is common practice for studies of this nature, it is a risk not many are willing to take.

The organisations are calling for the Department of Health and NHS England to deliver on their commitment and urgently set up an observational study.

“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,” continued Simon.

“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.

“The Government needs to urgently deliver on its promise to provide a way for these children to access funding for medicines which are helping them. They have already waited for two years. They cannot afford to wait any longer.”

More than 30 cross-party MPs have now signed a letter to Health Secretary Matt Hancock calling for him to release emergency funding to help families cover the costs of prescriptions until they become available on the NHS.

Peter Carroll of End Our Pain commented: “The law change was visionary and much welcomed. It offered hope to thousands of patients with a range of conditions and in particular to families caring for a young person suffering with intractable epilepsy. But these hopes have been cruelly dashed. 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.”