'It's not a fight we want to be having': Family's frustration as battle for cannabis oil continues despite law change

There is no doubt that any parent, of any child, wants the best for them.

That's why so many parents of children with severe epilepsy would do anything to make their lives easier and more comfortable. And if that means giving them medicinal cannabis, without a consultant's prescription because they can see it improves their child's life, then so be it.

According to a government select committee report, dozens of families had their expectations raised that they would be able to get a prescription for medicinal cannabis when the law changed.

That has not happened and to date, eight patients have been prescribed cannabis oil on the NHS and hundreds are still fighting to get it.

Yesterday, I met Ilmarie and Alex Braun. Their four year-old son Eddie has severe epilepsy, as well as brain damage. He has scores of seizures a day and has tried endless drugs to reduce them.

Eddie did, however, start making progress after using CBD oil for the first time in January 2017.

Based on that early promise, his paediatrician applied to a panel - set up to review such cases - to prescribe Bedrocan, a full extract cannabis oil that contains more THC (a more potent part of the plant).

But the panel rejected the application arguing they had not yet tried another cannabis oil, Epidiolex.

They were subsequently allowed access through the pharmaceutical firm that produces it.

His seizures reduced significantly but Eddie’s progress soon stalled and Ilmarie and Alex pushed again to try Bedrocan, now being used the high-profile case of another by Alfie Dinghley.

Their paediatric consultant agreed and recommended them again but they've been told their request for funding for a prescription is likely to be rejected, due to a lack of clinical evidence around its safety and effectiveness.

They are now buying it privately - at £2,000 per month.

Since Eddie started the new treatment in May, his mother says the oil has changed their lives. He has fewer seizures and has slept through the night - for the first time ever.

Eddie was first diagnosed with severe epilepsy when he was just seven months old. Credit: ITV News

Ilmarie and Alex Braun are not trying to make a political point. They just want the NHS to provide the drug, they say, has changed Eddie's life immeasurably.

When the law changed last year they were optimistic, but now argue the guidelines are so strict that few consultants will prescribe it because not one of the medicines is licensed.

Guidelines also recommend doctors wait for trials to take place and evidence to prove it is safe to use. Eddie, they say, doesn't have time to wait for trials to take place.

They won't be able to afford to buy the drug privately forever and say it's a scandal that the government promised to allow access to all patients but have failed to deliver on that simple pledge.

Eddie with his older brother Thomas. Credit: Braun family

A government spokesperson said: "We will carefully consider this report and its recommendations alongside the outcome of the NHS England review into the use of cannabis-based products for medicinal use in the NHS.

"In doing so, the government will consider any further action we might take to strengthen the evidence base and improve access to cannabis-based products for medicinal use where specialist doctors determine it is clinically appropriate."

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