Alfie Dingley: the Right to Access Medical Cannabis in the UK

Patient stories help us understand the real world impact of cannabis on the people who are improving their health and wellness on a day to day basis.

Update 2/8/2021:

Alfie Dingley’s life is once again at risk because the EU can no longer lawfully dispense prescriptions issued by the U.K., cutting off his medical cannabis access. The nine-year-old’s family fought for him to gain access to this medicine when nothing else worked.

For the last eight months, Alfie has been seizure free thanks to the cannabis-based medication he’s been taking since 2017. Before this, the boy could have up to 150 seizures each week, and his parents are worried it may start again when his medicine runs out.

There are other options available in the meantime, but Alfie has never had much success with other medications, even ones from different strains of cannabis.

Per BBC, Professor Mike Barns, a neurologist stated: “[The Department of Health and Social Care] has made the mistake out of ignorance… some [products] suit one child. Some suit another. Each strain of cannabis plant is subtly different.”

A government spokesperson sympathized, saying, “with patients dealing with challenging conditions.” But chances are, that statement is as far as their sympathy is going to reach as Brexit continues to cause problems for people like Alfie Dingley and their families.

Original Article on Alfie Dingley [2018]:

Alfie Dingley’s case reflects that of Billy Caldwell’s in so many ways. Both suffer from Dravet, a severe form of epilepsy that can cause tens to hundreds of seizures per day – up to 150 per month in Alfie’s case. Both live in the UK, both have been denied their life-saving medication, both much travel to the Netherlands or Canada in order to get their medicine.

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The families of both boys have been in contact with the Minister of State, Nick Hurd. Alfie’s family are applying for a licence to use cannabinoid-based medications for their son.

Waiting woman; eagerly awaiting; sitting and waiting.

Alfie Dingley’s Family Pleads with the Government for Life Changing Medicine

The alternative for both Billy and Alfie is a series of opioids, AEDs and intravenous steroids, all of which can cause psychosis, organ failure and addiction. Cannabinoids, meanwhile, are far more well-tolerated, have a much better safety profile and are arguably many times better than the medications available for rare forms of epilepsy.

Applying for a licence is not a new experience for Alfie’s mother, Hannah Deacon. She has applied to the Home Office for a licence before, but was refused. Hannah applied again in April, and officials would apparently expedite the process on compassionate grounds.

As far as we know, the licence has not been granted. In the past, the Home Office has turned down Hannah’s application on behalf of Alfie, as it is believed that cannabis cannot be practically prescribed, administered or supplied to the public.

This is an ongoing issue in Europe, the United States and much of the world. Only in recent years have more countries moved towards allowing medical marijuana access to those with severe conditions like Dravet Syndrome.

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The U.K. Can Profit from Medical Marijuana but Citizens Can’t Access It

This is an interesting ruling, especially considering that the UK is the largest exporter of medical cannabis. Prime Minister Theresa May’s husband, Philip May, works for Capitol Group – the largest investor of the UK’s main producer of medical cannabis, GW Pharmaceuticals.

Capitol Group holds a 15% stake in the company. Conservative Drugs Minister Victoria Atkins is married to Paul Kenward, managing director of British Sugar, which is growing 45 acres of cannabis under a government licence in Norfolk.

Understandably and rightfully, people are branding many members of the Conservative Party “hypocrites”. How can they say “there are no medical properties in cannabis” as they grow and sell medical cannabis? How can they deny their own citizens access to a medication they profit from on overseas markets?

Ethically speaking, how can someone deny a dying child their medicine? Something smells rotten in the state of the UK, and it’s not emanating from the smoke or vapor of the hundreds of thousands of people who are using cannabis for their ailments illegally.

Now, it seems that GW Pharmaceuticals has a monopoly on cannabis in Britain. The UK government does not seem to be keen on breaking this monopoly by handing out cannabis licences to those in dire medical need.

This is much to the UK’s detriment, and a huge curtailment of the rights, health and wellbeing of the country’s people. This needs to be changed, and the team at Leafwell is looking to do what it can to help this change come along this Wednesday in Parliament.

Written by
Dipak Hemraj
Dipak Hemraj

Dipak Hemraj is a published author, grower, product maker, and Leafwell’s resident cannabis expert. From botany & horticulture to culture & economics, he wishes to help educate the public on why cannabis is medicine (or a “pharmacy in a plant”) and how it can be used to treat a plethora of health problems. Dipak wants to unlock the power of the plant, and see if there are specific cannabinoid-terpene-flavonoid profiles suitable for different conditions.

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