Families of children with severe epilepsy are set to protest outside parliament in a call for greater access to medicinal cannabis.
Specialist doctors have been allowed to prescribe medicinal cannabis to patients since 2018, when the government changed its rules over the treatment.
But the End Our Pain campaign group says patients are facing an “almost total block” on access to NHS prescriptions and families were being forced to go private.
The group said they understand only three children with severe epilepsy have been prescribed whole plant extract medicinal cannabis – which has been hailed as “life-transforming” treatment for paediatric epilepsy – on the NHS since it was legalised.
Families are planning to gather outside parliament on Tuesday to call for more accessible treatment, with a digital poster van showing physical changes in children taking medicinal cannabis.
Parents are also set to stand outside Department for Health and visit No10 to deliver a petition in the day of action.
“Our families are at the end of their tether. We have done everything we can possibly do,” Joanne Griffiths, whose son Ben has not been able to get an NHS prescription, said.
“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. “
The mother said she thought their “problems were solved” in 2018, when it was announced cannabis health products would be made 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,” Ms Griffithsadded.
Hannah Deacon says every child with severe intractable epilepsy deserves access to the same treatment as her son Alfie Dingley.
“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.
“From having up to 150 life-threatening seizures a week, he has now gone over 500 days without a single serious seizure.”
Alfie, who has a rare form of epilepsy, was the UK’s first patient to get a permanent license to be prescribed medicinal cannabis on the NHS when he received one several years ago.
Ms 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.”
Alfie’s mother wrote to Boris Johnson this summer, urging him to “make access to medicinal cannabis products on the NHS a reality”.
A Deparment for Health and Social Care (DHSC) spokesperson said: “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.”
They added: “Licensed cannabis-based medicines are funded by the NHS where there is clear evidence of their quality, safety and effectiveness.”
No10 has been approached for comment.
