Severely epileptic boy Alfie Dingley, eight, who takes medicinal cannabis suffers fits again after 11 seizure-free months following mother's battle to legalise drug
- Hannah Deacon pleaded for the law to be changed to give her son the drug in UK
- Alfie Dingley, eight, had 11 seizure-free months after being given cannabis oil
- But now Miss Deacon, 40, has been left devastated after Alfie’s fits resumed
- She said he has developed a tolerance to it and wants to give him new products
Campaign: Hannah Deacon said Alfie Dingley was seizure-free for 11 months
The mother of a severely epileptic boy whose case helped legalise medicinal cannabis in Britain has spoken of her heartbreak after his fits returned.
Hannah Deacon pleaded for the law to be changed so that she could give little Alfie Dingley the drug in the UK. The eight-year-old then had 11 seizure-free months after being given cannabis oil, she said in an emotive video she posted on Facebook.
But now Miss Deacon, 40, has been left devastated after Alfie’s fits resumed.
She says the youngster has developed a tolerance to the treatment – and now wants a further relaxation of restrictions so that he can be given new products.
In the video she also revealed that Alfie is being given steroids which have made him aggressive.
Miss Deacon said last night: ‘I’ve had 11 months seizure-free with Alfie and I’ve had to come to terms with the fact that he’s not now. It’s heartbreaking.’ The hairdresser, from Kenilworth, Warwickshire, described in the video which she posted last month how the youngster had gone ‘downhill’ and now has clusters of seizures every two weeks. ‘It’s really, really, really hard and really sad,’ she said. Alfie’s rare condition meant he once suffered up to 30 fits a day.
Alfie Dingley used to suffer 75 seizures a day until he was prescribed an oil-based cannabis tincture overseas. His case saw the then Home Secretary Sajid Javid change the law to allow the use of cannabis oil by the NHS
Miss Deacon found that cannabis administered in the Netherlands helped ease the seizures. In the wake of a shift in public opinion partly prompted by Alfie’s case, legal changes late last year allowed UK doctors to prescribe the drug under strict guidelines. In August, however, NHS spending watchdogs blocked funding for routine cannabis-based drugs because there is insufficient evidence they are safe.
Miss Deacon says she still believes in the benefits of the drug. Last night she told The Mail on Sunday: ‘Cannabis medicine is amazing for Alfie and it can be amazing for many people.
‘But it can cause tolerance in the same way antibiotics can. If you take antibiotics you can become tolerant to them.
‘What my son needs is a choice of cannabis oil products to be available.’ Calling new legislation a ‘crazy PR stunt’, she added: ‘The law has changed but not one prescription has been done on the NHS and companies haven’t been able to do any imports.’
Miss Deacon said: ‘What I don’t want is for doctors to turn round and say this treatment doesn’t work. It does work.’
Over the counter cannabis oils are just a waste of money
With high-street outlets such as Boots, Superdrug and Holland & Barrett all stocking CBD oils, tinctures and even gummy sweets, sales are booming.
The ingredient is hard to miss – even added to lip balms, make-up, moisturisers and body wash.
Some research suggests that as many as 1.3 million Britons are spending more than £300 million a year on these products – with the market expected to be worth £1 billion by 2025.
But are they simply wasting their money? If they are hoping to boost health, ease pain and improve the skin by doing do, the answer is yes.
CBD oil can cost nearly £10 for a 10ml bottle – roughly 240 drops. In gummy bear sweet form, it’s £1 a time.
Some research suggests that as many as 1.3 million Britons are spending more than £300 million a year on these products – with the market expected to be worth £1 billion by 2025
Most oils or oil-based products sold online or over the counter contain between two and ten per cent CBD. Experts say much higher concentrations are needed to have any therapeutic effect.
For example, Epidiolex, an epilepsy drug, contains 98 per cent CBD. The oil used by Dr Englund and colleagues in the research on people with mental illness was 100 per cent CBD and nothing else. He says: ‘With some of those over-the-counter products, you would have to drink a whole bottle of oil or more before you would begin to get any benefit at all.’
CBD is poorly absorbed by the body as it can easily be broken down in the gut and the liver. This means only a fraction of what is swallowed – no more than six per cent according to Dr Englund – reaches the bloodstream.
CBD products are sold as food supplements rather than medicines and suppliers are careful not to make specific claims. Many instead say it can ‘maintain’ health or ‘support wellbeing’ if used regularly.
However, experts warn CBD products may not even contain what they say they do on the packet. One study involved testing 30 shop-bought CBD products. Researchers found one 30ml bottle, retailing for £90, contained no CBD at all.
Half contained THC, making them illegal. And one was so high in ethanol that it would be considered an alcoholic drink.
Dr Abdelmoneim says: ‘Lots of people self-medicate with these products but I suspect there’s a huge dose of placebo involved, rather than the products having any real effect.’