Mum of boy whose seizures are eased by cannabis reveals new pain

Mother of epileptic boy, 13, reveals he’s been DENIED a new prescription for the medical cannabis that stops his seizures – and slams decision by health chiefs as ‘orchestrated cruelty’

  • Charlotte Caldwell, from County Tyrone, revealed the family’s latest torment
  • Medical cannabis was made legal on the NHS  following reforms last year
  • However, in November 2018, Billy was denied the drugs and the pair left the UK for Canada where the drugs containing psycho-active element TCH are available
  • Family returned in February this year after they were finally prescribed the drug   
  • New trauma sees Billy’s supply run out tomorrow and no new prescription is forthcoming – although medical cannabis company has offered to ‘gift’ drugs

The mother of a 13-year-old severely epileptic boy who says medical cannabis has transformed his life has revealed her fresh torment after his latest prescription was denied. 

Billy Caldwell and his mother, Charlotte, from Castlederg, County Tyrone, spent the winter in ‘exile’ in Canada, returning only to the UK after it was agreed Billy could be prescribed the drugs that kept him seizure free for most of last year. 

However, appearing on This Morning today, Charlotte said the family faced new misery because his supply will run out tomorrow, with little hope of a new prescription coming. 

Calling the decision ‘orchestrated cruelty’ against her son, who was at the ITV studios but not on air, Charlotte said Billy had ‘helped to change the law and ironically he’s now exiled from it.’  

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Billy Caldwell’s mother Charlotte appeared on This Morning today to reveal that her son’s latest supply of medical cannabis, which dramatically reduces his seizures, runs out tomorrow and a new prescription has been denied the family

Billy, 13, pictured backstage at the This Morning show; his mother Charlotte said her boy is transformed by medical cannabis from being ‘depleted’ to being an ‘amazing, funny, little boy’

Charlotte told Holly Willoughby and Philip Schofield that while Northern Irish health officials had ‘gone quiet’ on their latest request for a prescription

Speaking to presenters Holly Willoughby and Philip Schofield and joined by the show’s doctor Ranj Singh, Charlotte said: ‘Where we’re sitting at today, this is absolutely orchestrated cruelty and discrimination against my little boy.’

She described the transformation in her son since he first began taking the drug, saying: ‘Billy has evolved from a little boy who was completely and utterly depleted – he was having a huge amount of seizures and was prescribed a cocktail of medication to a vibrant, bright, amazing, funny little boy who is accomplishing so much in his life now.’ 

The family were forced to leave Britain in November because they were unable to find a doctor willing to prescribe medical cannabis for Billy  – despite it now being legal. 

As Dr Ranj explained, the problem lies with the psycho-active element THC: ‘Cannabis is made up of two main active ingredients CBD and THC. There’s pretty good evidence with CBD that it can reduce seizures in people with severe epilepsy – by as much as over 50 per cent.’ 

After he began taking the medical cannabis that includes the psycho-active element THC, Billy was largely fit-free for 2018 but was forced to travel to Canada, says his mother, after he was denied a new prescription in November 2018

Charlotte Caldwell told Holly and Phil that medical drug company Aurora will ‘gift’ him more drugs but since the news broke out, the company had been contacted by multiple families asking for similar gifts

Dr Ranj explained the difficulties with prescribing medical cannabis in the UK, saying GPs were awaiting new guidelines from NICE in October and until then interim guidelines, which don’t help families like Billy’s are being followed

‘THC, there isn’t very good evidence with severe epilepsy and there’s concern that it could make epilepsy worse, and there are also concerns about the effect on the developing brain.’

While new prescription guidelines are currently being created by The National Institute for Health and Care Excellence (NICE), they aren’t due until October and GPs are currently following interim guidelines, which suggest prescriptions can only be made if a doctor makes a clinical case for it.

The Department of Health told the show it wouldn’t comment on individual cases. 

Since taking the medicine, Billy who suffers from severe epilepsy, has been almost fit-free

In February, Charlotte and Billy landed at Heathrow Airport and were able to pick up the cannabis from a pharmacy in Surrey after being prescribed it by a doctor who was told by the Department of Health it was okay to write a prescription for the medicine.

At the time, an overjoyed Mrs Caldwell told The Times: ‘I scoured the UK and Ireland  for doctors who would dot this. I have lost count of how many emails I sent and phone calls I made. I’d be there in Canada [sending messages at at three or four in the morning because of the time difference.

‘I’m a wee bit emotional, it feels like I am getting out of jail.’

Billy Caldwell and his mother, Charlotte, from Castlederg, Co Tyrone, returned from three months in ‘exile’ in Canada yesterday. 

Since taking the medicine, Billy who suffers from severe epilepsy, has been almost fit-free but is now relying on the company who makes his drugs, Aurora, to gift it to him, something Charlotte says isn’t ‘sustainable or appropriate’. 

Billy was given one NHS prescription for cannabis in 2017 – but the Home Office then banned his GP from giving him any more by the Home Office.

Last summer, when the family tried to bring in a fresh supply of medicinal cannabis from Canada where it is legal –  it was seized by customs. 

Billy was then thrust into the spotlight by his mother who made an appeal in the media for the law to be changed to allow medical cannabis to be legally prescribed  – and said Billy could die without it.

Four days later she was pictured cradling him on the way to London’s Chelsea and Westminster Hospital.

A tearful Charlotte, 50, spoke outside the hospital about her ‘beautiful, sweet, innocent boy’ who was suffering ‘life-threatening’ seizures and didn’t deserve this ‘callous treatment’.

Within hours, the Home Office released some of the confiscated medicine, which contains two cannabis-derived substances, the legal cannabidiol (CBD) and banned tetrahydrocannabinol (THC), the psychoactive compound associated with the ‘high’ given by the drug. 

They gave doctors a 20-day licence to administer one of the seven bottles of the drug Charlotte had brought from Canada.

Then, clearly feeling forced to act, Home Secretary Sajid Javid told the House of Commons it was ‘time to review the scheduling of cannabis’ for medicinal use.

Mr Javid’s review led to a change in the law. 

Patients’ groups say the reform has had little effect and  could be negative.

The remarks from the patients’ group triggered new guidance from professional bodies which discouraged doctors from prescribing cannabis.

One body, the British Paediatric Neurology Association, received letters from more than 30 parents – who had accused it of ‘ignoring the law change’ and causing ‘barriers and threats to those seeking treatment’. 

Charlotte said that for the first time ‘connections had been made’ between the medicinal cannabis experts in Canada and doctors and the UK.

She said ‘it was a huge step forward for us in the UK – and not only Billy’.    

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