After the boy became the first person in the country to be granted a licence for the drug last June â as a special case before the law change â his mother revealed how he was living seizure-free and learning to ride a bike.
But now the eight-year-old has grown used to the strain of the treatment and has begun to have fits again. Hannah Deacon says her son needs a new strain to be able to cycle between two products to overcome his tolerance â but because of the UKâs strict rules importing it into the country could take months.
It has lead her to post a tearful video to Twitter to beg for change in the system.
âThe receptors get dulled by the same strain of THC and CBD,â she told i. âItâs a well-known thing to happen. Alfie has an NHS prescription but the red tape to get a new product into the country will take time and meanwhile I have to watch my son suffer.
âMy little boy is being put at risk because of bureaucracy. Cannabis is now legal but access to it really needs to improve.â
Please RT we need some help! pic.twitter.com/eQfxeJRvoA
â Alfie’s Hope â Hannah Deacon (@Hanseizuremum) May 16, 2019
Cannabis gave my son 11 months of an amazing life
Alfie, who had his first fit when he was just eight months old, has a rare form of epilepsy which affects just nine children in the world. It can cause up to 30 seizures a day or âcatastrophic clustersâ ofâ fits which are unresponsive to anti-epilepsy drugs.
Before he tried cannabis, the youngster had been pumped with steroids his whole life that were making him aggressive. His family feared his fits could cause him lasting brain damage.
But when taking the Bedrocan strain of cannabis oil his seizures dropped to zero, or sometimes one a month.
âWe know cannabis works, and is the only thing that works,â said Hannah.Â âAlfie is still doing so much better than he was. Since March heâd had three cluster attacks of around eight seizures each time, so nowhere near as many or as severe as before. But it could get worse.
âCannabis gave my son 11 months of an amazing life and with his products mixed up that will continue.â
Hannah, from Kenilworth in Warwickshire, says changes to her sonâs medication will all have to be approved through a new licence.
âThe importer will have to apply to the Home Office for approval, and then order it from the supplier. I will keep on fighting for my son to have what he needs but I shouldnât have to. Itâs very frustrating.â
If todayâs medical profession could embrace cannabis in the same way as it did penicillin then the true value of this plant medicine should rapidly be realised
Professor David Nutt
In a paper published in the British Medical Journal (BMJ) earlier this month, Professor David Nutt warned that despite the law change last year, access to medical cannabis in the UK has been much slower than patients and their families had hoped.
The neuropsychopharmacology expert from Imperial College London argued that still only a small number of children with severe juvenile epilepsy are being treated with it.
In the paper, which is linked to an article written by Hannah, Professor Nutt argues that cannabis is the oldest medicine in the world and its prohibition was relatively recent. It was believed Queen Victoria used it, particularly for period and childbirth pains, he said.
Although it was first made illegal in the UK in 1928, it was still allowed to be prescribed by doctors until 1971 when the when the Misuse of Drugs Act prevented its use medicinally.
Following Hannahâs high profile campaign, in June the Home Office announced a U-turn and a few months later, on 1 November 2018, the law was changed and cannabis products were allowed to be prescribed by specialist doctor, or a GP acting under the instructions of one.
Yet many children with severe, uncontrolled epilepsy continue to suffer because neurologists wonât prescribe, argues Nutt. He cites lack of training, fear of prescribing off licence, refusal by some to pay, and difficulties obtaining supplies from foreign producers as potential reasons.
Regarding the argument the long-term effects of cannabis on conditions like severe epilepsy in children have not been fully ascertained, Nutt points to penicillin, which he says is another natural medicine that was welcomed by UK doctors even though there had been no trials of its effectiveness.
âWe must hope the situation will improve,â he wrote. âIf todayâs medical profession could embrace cannabis in the same way as it did penicillin then the true value of this plant medicine should rapidly be realised.â
They [patients] are having to break the law and import it or pay thousands for a prescription from a private doctor
Hannah works with the campaign group End Our Pain, which is currently supporting 16 families in desperate need of medical cannabis prescriptions.
She is also involved with the Medical Cannabis Clinicians Society which has been set up by neurologist Professor Mike Barnes to educate doctors about cannabis medicine. It aims to provide quality, balanced educational programmes in order to inform clinicians about the current state of evidence with regard to the efficacy of cannabis, its side effects and dosages.
Hannah says many other children in similar situations have not been able to access these medicines, even though they are now legal.
âThe Home Secretary acted quickly to change the law which was great, but it was done without any planning, education or understanding of patient needs,â she said.
âPatients thought theyâd be able to get the prescriptions they need. I feel sorry too for the clinicians being bombarded by desperate patients because theyâre not educated enough about cannabis to feel they can safely prescribe it.
âI know people who are paying ÂŁ500 for a bottle privately when it costs âŹ178 (ÂŁ155) in Holland.
âThey are either having to break the law and import it from Holland or follow the law but pay thousands for a prescription from a private doctor. Itâs a disgrace.
âI acknowledge that the NHS is underfunded, but the costs of long term care for children damaged by epilepsy far outweighs those of a product that could give them a life worth living.â
The Department of Health told i it has asked National Institute of Health and Care Excellence (NICE) to develop additional clinical guidelines and it is working with Health Education England to provide additional training to support doctors prescribing cannabis.
An NHS spokesperson said: âThe decision to prescribe medicinal cannabis is a clinical decision for specialist hospital doctors, made with patients and their families, to determine the most appropriate medication or course of treatment for an individual patient.â