Despite change in law children suffering from epilepsy still do not get access to medicinal cannabis

Children with epilepsy are not being prescribed cannabis – despite it having the potential to revolutionise medicine like penicillin, according to an expert.

Hundreds of parents contacted doctors after the high-profile cases of epilepsy sufferers Alfie Dingley, six, and 12 year-old Billy Caldwell.

The boys’ plight prompted the government to allow youngsters to be given marijuana for medical reasons

Alfie, from Kenilworth in the West Midlands, and Billy, from Castlederg in County Tyrone, were treated with cannabis containing the non-psychoactive compound cannabidiol (CBD).

They were also given small amounts of the psychoactive substance tetrahydrocannabinol (THC).

But David Nutt, professor of neuropsychopharmacology at Imperial College London, says “only a tiny number” are currently being treated with the drug.

Prof Nutt, backed by Alfie’s mother Hannah Deacon, says general access has been much slower than families and patients hoped.

Writing in The BMJ he says many children are continuing to have multiple seizures because neurologists are reluctant to turn to cannabis.

One problem has been the campaign was led by parents and patients – rather than doctors.

Prof Nutt said: “There are several likely reasons for this. One is ignorance of the value of cannabis medicines, because few doctors have any training or experience in this area and are fearful of prescribing them off licence.

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“Another reason for resistance could be parents and patients lead this initiative rather than the medical profession.

“Some doctors fear medical cannabis will lead to severe adverse effects such as psychosis, and others that it will lead to more recreational use, which seems unlikely given the current wide use and availability of black market cannabis.

“Additionally, some pharmacists and clinical commissioning groups are refusing to pay.

“Another substantial challenge is obtaining supplies, because currently all medical cannabis has to be sourced from foreign producers in the Netherlands and Canada.”

He says cannabis is the oldest medicine in the world – with evidence its use from 3,000 year old tombs in Egypt and Siberia.

It’s believed Queen Victoria used cannabis medicines – particularly for period and childbirth pains – as her physician John Russell Reynolds was an advocate.

It was prescribed by doctors in the UK until 1971 when the Misuse of Drugs Act declared medical use was illegal.

The government resisted any change until the high-profile campaign by Ms Deacon, on behalf of Alfie, which has led to cannabis being allowed to be prescribed since last November.

Prof Nutt said: “About 70 years ago another natural medicine came into the medical arena.

“This was welcomed enthusiastically by UK doctors even though there had been no placebo controlled trials of its efficacy because it was seen to fulfil a major clinical need. That drug was penicillin.

“If today’s 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.”

He believes this can happen with small expert groups conducting studies of outcomes and side effects.

This is similar to what happens with cancer therapies and is already going on with the party drug ketamine as a potential treatment for depression.

In an accompanying patient commentary Ms Deacon said: “I am often asked why I campaigned for my son and now other families like ours in the UK.

“My family is everything to me. I have watched my son struggle to breathe when he is having a seizure, seen my daughter cry when I leave her, and noticed my partner anxious and worried about the future.

“We became campaigners because we had no choice. We are our child’s only advocates, and we must do all we can to be heard.

“I have watched my child develop and enjoy life, and every child with intractable epilepsy should have the right to try cannabis medicines that could save them from a life of suffering.”

She explains how she had to fight for doctors to prescribe medical cannabis for her Alfie to ease his seizures.

But many other children in similar situations have not been able to access these medicines – even though they are now legal, she said.

Reasons given by doctors included lack of evidence, money and support from NHS managers.

She now works with the campaign group End Our Pain, currently supporting 16 families in desperate need of medical cannabis prescriptions.

Ms Deacon said: “It is heartbreaking that seemingly no NHS doctor is willing or able to prescribe medicines that could help these children who have been very sick, some for many years, after having tried many other drugs.”

The THC Alfie was given is responsible for the highs experienced by recreational users of cannabis – but can also trigger psychosis.

In the UK, there are 20,000 children who suffer epilepsy that doesn’t respond to conventional treatments.

But leading paediatricians say they are horrified many parents now see cannabis as a panacea for their child’s fits.

Seizures are caused by a sudden surge of electrical activity in the brain. Someone having a seizure might collapse, shake uncontrollably, or even just stare into space.

All of these are brief disturbances in brain function, often with a loss of or change in consciousness.

Seizures can be frightening, but most last only a few minutes, stop on their own, and are not life-threatening.

A person who has had two or more seizures may be diagnosed with epilepsy, also known as seizure disorder.

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