Families of Epileptic Children in UK Arrange Protest Seeking Greater Access

Families of epileptic children are gearing up to protest outside the Parliament, calling for the United Kingdom to allow for greater access to medicinal cannabis, The Independent reports.

Doctors in the country have been allowed to prescribe medical cannabis to patients who qualify since 2018, when the government updated its rules regarding use of cannabis to treat specific illnesses and conditions. However, the End Our Pain group says that patients are now facing an “almost total block” on access to National Health Service (NHS) prescriptions, forcing families to go private.

The group said it is their understanding that only three children with severe epilepsy have been prescribed whole plant extract medicinal cannabis—considered a “life-transforming” treatment for pediatric epilepsy—on the NHS since medical cannabis was legalized.

The group notes on their website that patients regularly cannot get the access they should, and that collectively, the suffering of those patients continues so long as leaders restrict treatments.

“Over 2 years ago, on the 19th March 2019, the Secretary of State for Health and Social Care met the families being denied NHS prescriptions for medical cannabis and promised them ‘urgent action,’” the End Our Pain website states. “Over a year later these families are still paying out thousands of pounds on private prescriptions.”

Families plan to gather outside the parliament this week in protest, calling for more accessible treatment along with a digital poster van showing physical changes in children who take medicinal cannabis. Patients also plan to stand outside the Department for Health and visit No10 to deliver a petition, which is the official residence and executive office of the first lord of the treasury and the prime minister.

Joanne Griffiths, whose son Ben has been unable to obtain an NHS prescription, said her family and many others are at the end of their tether, having done everything they can possibly do.

“We have marched, petitioned, lobbied parliament and met with health ministers countless times, yet three years on we still cannot access the NHS prescriptions for the medicine our children are reliant on,” Griffiths said.

She said she had initially believed her problems, and the problems of many other families in the country, were solved with the 2018 decision, when it was announced cannabis health products would be available to patients.

“Yet here we are in 2021 struggling both financially and emotionally and continuing to be passed from pillar to post by both the government and the NHS,” Griffiths said.

Hannah Deacon is one parent whose son—Alfie Dingley, who suffers from severe intractable epilepsy—was able to get the treatment he needed. She said that all children with the same condition deserve access to the same treatment Alfie has.

“My son is lucky enough to be one of only three children in the UK with an NHS prescription for the type of whole plant extract medical cannabis that has been life transforming in cases of paediatric epilepsy,” she said.

Deacon also noted that Alfie went from having 150 life-threatening seizures a week to now going more than 500 days without a single, serious seizure. He was the first patient to get a permanent license for medical cannabis on the NHS.

Deacon added, “It is a total injustice that three children have access to this medicine, while others do not know when their money will run out.”

A Department for Health and Social Care (DHSC) spokesperson commented, “Our sympathies are with all patients and families dealing with rare and hard to treat conditions. The government has already changed the law to allow specialist doctors to prescribe cannabis-based products, where clinically appropriate and in the best interests of patients.”