Alfie Dingley celebrates two years seizure free with medical cannabis

The mother of Alfie Dingley has challenged UK bodies blocking access to medical cannabis, as her son marks two years seizure free.

Hannah Deacon, whose son Alfie is affected by severe epilepsy, has renewed calls for leading doctors and regulators to review their stance on prescribing medical cannabis to other children with the condition. 

At the age of six, Alfie, was at the centre of a high-profile campaign that saw medical cannabis legalised in November 2018, with any clinician on the GMC specialist register permitted to prescribe.

On Thursday 28 April the family celebrated Alfie reaching two years with no seizures, thanks to consistent access to the “life-transforming” medicine.

But despite the legalisation, he remains only one of three children in the UK to benefit from an NHS prescription for cannabis.

Dozens of other families are having to secure the medicine privately at a cost of up to £2,000 a month, with new guidance from the British Paediatric Neurology Association (BPNA)  sparking fears that they may soon be blocked from the private route too. 

Updated recommendations from the body, published in October last year, puts the onus on the prescribing doctor to ensure families can afford to carry the financial burden.

It states: “If a paediatric neurologist prescribes an unlicensed CBPM in private practice they should also be certain that the family can sustain the cost of ongoing private prescriptions.

“We consider it unethical to initiate a treatment in private practice for which funding is not available in the longer term. The NHS is unlikely to meet the cost of future prescriptions of an unlicensed medicine that has no Level 1 evidence of efficacy and safety. “

Meanwhile the refusal of the BPNA to support doctors in prescribing cannabis medicines, has led to a shortage of paediatric neurologists willing to do so in the private sector. There is currently only one doctor prescribing for children with epilepsy and his books have been closed due to demand. 

Deacon says: “Today [Thursday] marks two years seizure free for my son Alfie Dingley.  His NHS prescription has given him 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. It has also meant a chance for our family to heal. 

“It is a moral and ethical outrage that so many other families are denied NHS access to this medicine and are being forced to go private at huge cost.  

“On this two year anniversary of my son being seizure free as a result of this life transforming medicine I am challenging the leading doctors concerned, and the relevant regulators, to accept my invitation to discuss this situation.  Many of the parents being denied prescriptions, both on the NHS and now privately, believe that guidance from the BPNA is playing a significant part in the blockage, hence my challenge to them.”

In her letter to the BPNA requesting a meeting, Deacon has explained the scale of the transformation in her son’s health.

Medical cannabis has resulted in huge savings to the NHS, as a result of Alfie needing fewer conventional anti-epileptic drugs (AEDs) and practically no need for hospital visits. 

She says: ‘How wrong is it that the law was changed by the campaigning efforts of a couple of families with children affected by severe epilepsy, but other children similarly affected are denied prescriptions?  

“The law change has led to an embryonic medical cannabis sector in the UK and a few thousand adult patients now benefit from this medicine for a range of conditions due to the emergence of a number of private clinics.  However, it seems that even these private clinics are reluctant to prescribe to children with epilepsy.” 

She also challenges some of the arguments advanced by doctors reluctant to prescribe relating to trials and evidence.

“It appears that the BPNA and other leading medical figures and regulators are concerned about whether there is enough evidence that medical cannabis is safe and effective, but there is a vast amount of real-world evidence and observational trial data available from all other the world,” Deacon continues.

“As regards safety, if it isn‘t safe why was the law changed in the first place? Cases like Alfie’s show just how effective this medicine can be.”

She adds: “It is the duty of all responsible to work together on a solution and not ignore the suffering of the many families who are currently keeping their children alive by paying for private access.”

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