The mum of a boy with severe epilepsy said he had been free of seizures for two years since using medical cannabis.
Alfie, from Kenilworth, Warwickshire, was suffering with 150 seizures a week but Hannah Deacon said using the drug had “transformed” his life. In 2018, his family celebrated with other campaigners as the government legalised the use of medical cannabis.
However, Ms Deacon claimed many families were still being denied NHS access to the medicine.
“Due to a near total block on NHS prescriptions, dozens of other families are having to secure the medicine privately at up to £2,000 a month,” Ms Deacon said.
She said she believed it was due to the British Paediatric Neurology Association (BPNA) “not believing that there is enough evidence that medical cannabis is safe and effective”. A spokesperson for the Department of Health and Social Care (DHSC) said: “We have changed the law to allow specialist doctors to prescribe cannabis-based products, where clinically appropriate and in the best interests of patients.
“We are working closely with regulatory, research and NHS partners to establish clinical trials to test the safety and efficacy of more cannabis-based products for medicinal use to inform future NHS funding decisions.” Licensed cannabis-based medicines are funded by the NHS, the DHSC added, “where there is clear evidence of their quality, safety and effectiveness”.
The BPNA has also been contacted for comment.
Since using the drug, Ms Deacon said it had given her son “two years of attending school, of making new friends and of healing from the years of seizures and devastation which hit him for many years before”.
She added the drug had given her family a chance to “heal”.
Ms Deacon has requested a meeting with the BPNA to show how medicinal cannabis has transformed Alfie’s life. The campaigner added that families were now fearing that private routes to get the drug, would soon be blocked too.