A young British mother whose three-year-old son has up to 80 seizures a day, is hoping that the National Health Service (NHS) will prescribe him medical cannabis.
The boy, Isaac, has been diagnosed with a rare genetic condition called Lujan-Fryns syndrome, a developmental disorder which has left him unable to walk, talk, or eat. It is believed to affect about 75 people worldwide, causing seizures in some.
According to his mother, Sarag Sugen, Isaac has tried 13 anti-epileptic drugs, to no avail. She continues by saying no clinician will prescribe medical cannabis.
Leeds Teaching Hospitals NHS Trust states that there are “clear guidelines” around the drug and consultants took decisions based on patients’ clinical needs. Cannabis-based medicines have been legal to prescribe in the U.K. since 2018 for certain types of treatment-resistant epilepsy.
Charity Epilepsy Action has called for more research on potential wider benefits, but says the drug has shown “enormous impact” in reducing the frequency of seizures in many patients.
Sugden feels she has “exhausted all other options,” but is finding it impossible to have medical cannabis approved by the NHS, which has reportedly issued prescriptions to just a handful of child patients. The first time she noticed her son’s condition was when he was six months old.
“There was something not quite right with him,” she tells the BBC. “He never really met any milestones.”
Right before his second birthday, Isaac suffered through what Sugden thought was his first epileptic seizure. She was later told by medical professionals that this was unlikely to have been the first.
Doctors at Hull Royal Infirmary were unable to control the epilepsy, so Isaac’s care was transferred to specialists at Leeds General Infirmary. In December 2020, tests confirmed he had Lujan-Fryns syndrome.
Sugden says medics tried a range of different medications, but the side effects were horrendous. She believes medicinal cannabis could help, but has been unable to find an NHS or private doctor willing to prescribe it.
“It has worked for hundreds of children in the same situation as Isaac with rare epilepsies,” she says. “Why not try it?”
NHS guidance for doctors in England says medicinal cannabis should be prescribed only when there is clear published evidence of its benefit and other treatment options have been exhausted. Treatment courses are decided on a case-by-case basis, judging the benefits against the risks.
However, because that’s a professional judgment, they say it would be inappropriate for the NHS to direct clinicians’ prescribing of unlicensed products. The National Institute for Health and Care Excellence (NICE) does not make any recommendations about the use of cannabis-based medicines for severe treatment-resistant epilepsy, but it acknowledged the need for more research, adding that it supports NHS England’s call to collect evidence from trials and studies.
Meanwhile, the British Paediatric Neurology Association, which produces guidelines for hospital trusts, say there is “insufficient” evidence of its therapeutic benefit, and that there are concerns about effects on the developing brain.
Daniel Jennings from Epilepsy Action states that many doctors were still reluctant to prescribe cannabis.
“Cannabis is a controlled drug, so there is still that stigma around it,” he explains. “We need research urgently.”
Sugden has collected more than 80,000 signatures on a petition calling on the government to intervene and break the deadlock.
“I just want him to have that opportunity to have a quality of life,” she says. “That’s all I am asking for.”
