boy with mum

Patient Profile: Alfie Dingley and the Fight for Medical Cannabis Prescription

Photography Credit: Claire Carroll

Alfie Dingley, along with fellow epileptic sufferer Billy Caldwell, is a patient whose struggle to obtain medical cannabis eventually catalysed change in U.K. laws around cannabis prescription, although the fight to access such treatment continues to this day. Alfie’s mother, Hannah Deacon, is a prominent campaigner for people currently unable to access the medical cannabis treatment they seek despite medical cannabis being legalised in the U.K.

Born in 2011 to mother Hannah Deacon, Alfie Dingley lived normally and experienced no unusual symptoms for the first 4 months of his life, living as any normal boy of his age would. After this point however, Alfie became constantly sick, experiencing his first tonic-clonic seizure at only 8 months old. After this first seizure, Alfie continued to have seizures in hospital for a further four months until use of intravenous steroids stopped this cluster. The debilitating effects of these seizures cannot be stressed enough, with Alfie losing all the skills he’d developed in his life prior to their occurrence.

Alfie was then diagnosed with autoimmune epilepsy, with the young boy experiencing clusters of seizures every 8 months until he was 4 years old. Unfortunately, rather than improving over time, Alfie’s clusters continued to become more frequent. He started experiencing clusters every three weeks, then as frequently as every week. Every time these clusters occurred Alfie required as many as 5 doses of intravenous steroids to combat his symptoms.

Eventually, Alfie was diagnosed with an extremely rare, treatment-resistant epilepsy syndrome called PCDH19 Epilepsy. This syndrome is so rare that only 9 boys are thought to experience it worldwide.

What is PCDH19 epilepsy?

PCDH19 is a rare epilepsy syndrome that is characterised by early onset seizures, sensory and cognitive delays and behavioural problems (possibly including: aggression, ADD or ADHD, anxiety, OCD, depression and psychosis).

The syndrome is caused by a mutation of the PCDH19 gene on the X chromosome, which results in the gene not being able to produce a protein called protocadherin 19 which is vital for helping the cells in the brain to communicate.

This mutated gene may be inherited in some cases or alternatively it may only affect one family member due to an accident in cell development. 90% of females with this gene mutation will exhibit symptoms whilst males with the mutation are generally unaffected. This therefore makes Alfie’s case exceptionally rare.

How medical cannabis helped

Prior to using medical cannabis treatments, Alfie had to be treated using intravenous steroids that presented the risks of psychosis and premature death. Even with the use of such steroids, Alfie still experienced seizures that meant he could rarely attend school, practise hobbies or generally live a normal life.

However, when he began cannabis treatment (with oil prepared from Bedrolite eventually coupled with THC oil given under medical guidance) after the family temporarily moved to the Netherlands, Alfie didn’t experience a seizure for an astonishing 40 days. Even when he did experience a cluster after this time, these were far easier to control and were far less intense; this meant his cognitive development greatly improved during this period.

However, despite such promising improvements, the family’s move to the Netherlands was tough and they sadly ran out of money, forcing them to return home to the U.K. Here, the fight for access to cannabis-based medicines containing both CBD and THC was tough with little initial cooperation from the Home Office.

After some struggle, Mike Barnes, a consultant neurologist, preeminent cannabis expert and Director of Education for the Academy, made a successful application for the first UK licence (for medical cannabis products) for Alfie, which was then issued on the 19th June 2018. With the change in U.K law on cannabis prescription made in November 2018, Alfie received the first NHS prescription for the cannabis-based products he’d previously been prescribed in the Netherlands.

Recent developments

Upon consultation with Alfie’s mother, Hannah Deacon, we’ve learnt that Alfie is still doing very well with his cannabis-based treatment but has recently seen some seizures creeping in after 11 months seizure free. This may be due to Alfie becoming gradually tolerant to his previously successful method of prescribed treatment. This common occurrence, due to receptors becoming dulled to the specific types of CBD and THC in the medicine over time, might mean Alfie now requires a new product to effectively treat his symptoms (despite the fact that cannabis based treatment still remains far more successful at treating his symptoms than conventional medical options). Hannah herself says she’d like the opportunity to access new products for Alfie but currently there’s no availability. Indeed, as she stated in a video posted online: “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. My little boy is being put at risk because of bureaucracy. Cannabis is now legal but access to it really needs to improve.”

Hopes for the future

Many patients and carers across the U.K who have to deal with the debilitating effects of drug-resistant forms of epilepsy are growing tired with current legislature that means very few licenses are being granted, with doctors remaining reluctant to prescribe medicinal cannabis products unless every pharmaceutical drug option has been tried first.

In Alfie’s high-profile case, perhaps medicines will be exceptionally easier to access in the future. However, currently, there is little evidence to suggest such changes are on the way, particularly for those with regular forms of epilepsy who also wish to access cannabis to mitigate their symptoms.

Until such treatment is possible for everyone affected, Hannah Deacon maintains that: “[she] won’t rest until all the families [she’s] supporting can go to their specialist and get their medicine.”

Hopefully, with mounting pressure from various campaign groups and the medical community, such legislative changes will soon match the findings of the continually promising research being done in this area of need.

Further investigation and research into medicinal cannabis and alternative medical options is thoroughly encouraged by The Academy, particularly through the use of our own online coursesevidence base and whitepapers.

The rest of our resources are available on our website. We urge anyone considering use of medical cannabis products to consult with a trained medical professional prior to beginning use.

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