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The Tale of a loving mother, an epileptic child, a plant medicine and a government.

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The Tale of a loving mother, an epileptic child, a plant medicine and a government.

The following are news articles illustrating the story of a loving mother fighting for her son, fighting for his life and fighting his epileptic seizures that tormented him daily and caused his life to be more torture than enjoyment.

The mother took her child across the pond to Canada and found legal medicine in Canada but not in the UK as it is made from cannabis and the laws of politics and prohibition without genuine merit in this situation cruelly force physical torturous suffering on a small child and mental anguish only a parent and mother could know.

I ask what is gained by forcing such a condition on a child rather than doing the right thing.  The following video was made specifically for such situations and I ask that you say a prayer or give a positive thought for Billy and his loving mother Charlotte so that the powers that be will find a way to allow the effective medicine to free those who suffer these conditions!

 

One Drop Forward 

 

The Articles

Castlederg woman to fly medical cannabis to UK for epileptic son

Original article: By David Hunter

 

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The mother of Billy Caldwell says she will openly 'smuggle' medicinal Cannabis into the UK today. 

The 12 year-old from Castlederg, Co.Tyrone,  suffers from a severe form of epilepsy. 

He received cannabis treatment in the U.S for several months last year after medical specialists in the UK said they couldn't help.

Doctors say the cannabis oil reduced the frequency of his Billy's dangerous and exhaustive seizures , which Charlotte Caldwell said happened hundreds of times per week.

He became the first person in the UK to be given a prescription last year. 

However, Home Office officials told Billy's Doctor to cancel the script last month, saying he could be struck off. 

Charlotte travelled to Canada last week, where the medicine is legal, as Billy's supplies ran out. 

She's told the Daily Mail she'll fly into Heathrow today with a six month supply and will beg customs to let her through. 

"I hate having to do this" she said to the newspaper.

"For a mother to be pushed into breaking the law to keep her son alive is horrendous. But this drug has given me hope and given my son back his right to life. 

"Of course I worry about breaking the law – but I want my son illegally alive rather than legally dead."

 

 

Billy Caldwell's cannabis meds battle may end in arrest for mum at Heathrow

Original By Jilly Beattie 22:24, 10 JUN 2018 UPDATED 23:02, 10 JUN 2018

https://www.belfastlive.co.uk/news/billy-caldwells-cannabis-meds-battle-14767713

Charlotte Caldwell flies into London on Monday carrying outlawed medicinal cannabis and will face arrest or change history in the UK.

The mum from Castlederg, Co Tyrone, traveled to Toronto last Thursday to source the oil her son Billy has relied on to keep potentially deadly epileptic seizures at bay for months.

Now doctors in Canada’s leading children’s hospital have placed Billy on a clinical trial of the medication which is awaiting peer review.

Richard Pengelly, the Permanent Secretary at the Department for Health in Northern Ireland, and the Chief Medical Officer were furnished with the full documents of clinical trial data and the ingredients in the doses on Sunday night.

The Canadian trial is ongoing but early data supports the use of medicinal cannabis oil for patients like Billy.

The 12-year-old made history when he became the first UK recipient of an NHS prescription for medicinal cannabis last year.

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Charlotte giving Billy his first dose legally in Canada

But the Home Office put a stop to the prescriptions last month and with just one dose left, Charlotte and Billy flew to Canada desperate for help from specialists at The Hospital for Sick Children in Toronto.

And last night they were booked onto the 9.55pm flight from Toronto Pearson International Airport to Heathrow terminal 5, due to land on Monday at 10.10am.

If they make it through customs, immigration and security, and are allowed to pass go after declaring the oil, Charlotte and Billy will be joined by 10 other families who say they need medicinal cannabis.

Then together they will make a public statement urging the Home Secretary to trigger a change in the law.

Speaking to Belfast Live from Toronto, Charlotte said: “I have no choice. I’ve been prevented from giving Billy the medication that keeps him seizure free. Faceless civil servants did that to Billy. I’m worried about breaking the law but I’d rather have Billy illegally medicated and alive than unmedicated and legally dead. What mother should have to make that choice?”

This will be the second time Charlotte Caldwell will have openly carried illegal medicinal cannabis into the UK.

In May last year the pair flew into Dublin and drove across the border into Northern Ireland after declaring the full spectrum and THCa cannabis oil at customs in Ireland.

 

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Billy Takes 2 drops a day

Last week Charlotte and Billy attended a meeting at Stormont where she was assured of support by every political party in Northern Ireland except the DUP.

And it was shortly after she invited the DUP to the meeting that her GP received an email from the Home Office ordering him not to write any more prescriptions for Billy.

The same GP was then invited to a hotel in Belfast to attend an un-minuted meeting with civil servants from the Department of Health’s Drug Enforcement Agency.

 

 

A source said: “The meeting was particularly uncomfortable for the doctor. He had no choice but to comply. The prescriptions stopped there and then.”

Charlotte said: “Members of the DUP initially said they would support us but the support was retracted. They do not support Billy and they do not support my work to keep him alive and well.

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Charlotte's campaignis supported by parents and all of Northern Ireland's political parties except the DUP

 

 

“If I had been offered an abortion I would have refused it and protected Billy’s right to life and so would the DUP by all accounts.

"Well I’m doing my bit. Where are they? I believe their stance on this is hypocritical."

A spokesperson for Tilray, the British Colombia manufacturer of the trial drug oil, said: “Currently, the study drug used in the clinical trial is only authorized for use by patients participating in the trial.

"Once authorised for sale, this would be the highest concentration of cannabis-derived CBD found in a medical cannabis product legally available to Canadian patients.

“After the product is authorized for distribution Tilray will first make it available to patients who participated in the trial. As we are able to increase supply, we hope to make it available to patients outside of the trial.”

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The Trial Drugs from Tilray

On Wednesday, Charlotte hopes to bring Billy’s six month trial doses home to Co Tyrone via Heathrow.

The situation presents Home Secretary Sajid Javid with a dilemma over whether tomorrow Charlotte should be:

  • arrested and detained,
  • arrested and cautioned and allowed to retain the oil,
  • arrested and cautioned and the oil confiscated, or
  • allowed to pass freely through the airports in London and Belfast
  • She said: “I can only ask to keep the drops to keep my son alive and well.

“I don’t know if they'll let me. I don’t know if they'll arrest me and confiscate the oil and sign Billy’s death warrant. But I do know that Billy needs it and I’ll make sure one way or an other that he gets it.

“Not only that I want to make sure that everyone who needs medicinal cannabis oil, gets it too.”

Charlotte has support from the UUP, SDLP, Sinn Fein, Alliance and the Green Party and now includes a former Tory Health Minister in her group of backers.

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Former NI Health Minister David Ford attended the meeting with Charlotte and backed her

Dr Dan Poulter works part-time in mental health services and recently started an all-party parliamentary group supported by three other doctors at Westminster, pushing to legalise medical cannabis in the UK.

He said: “The current law is ridiculous. There is growing evidence cannabis products used medically can be helpful in a number of conditions.”

He urged that Charlotte and Billy should be allowed into the UK with the oil and said: “This is both medically the right thing to do and humanely the right thing to do.”

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Billy has been through so much to get to where he is today

A spokesperson for the Home Office said: “We are sympathetic to the difficult and rare situation that Billy and his family are faced with.

‘While we recognise that people with debilitating illnesses are looking to alleviate their symptoms, it is important that medicines are thoroughly tested to ensure they meet rigorous standards so that doctors and patients are assured of their efficacy, quality and safety.”

 

 

THE mother of a severely autistic boy has accused the government of signing her son's "death warrant" after she had cannabis oil which she claims can help soothe his seizures confiscated at Heathrow Airport

Original: By Erica Doyle Higgins 11th June 2018, 1:03 pm Updated: 11th June 2018, 6:22 pm

https://www.thesun.co.uk/news/6500494/billy-caldwell-cannabis-oil-confiscated-heathrow-airport/

  • Their is a video at the link above from the original article, a must watch!

 

Charlotte Caldwell, from Tyrone, Northern Ireland, travelled to Canada last week for the oil after the Home Office banned her son Billy's GP from prescribing the life saving medication.

 

 

Mum Charlotte had said she would return to the UK with six month's supply of cannabis oil, but customs officers confiscated the oral drops at Heathrow this afternoon.

Ms Caldwell accused Home Office Minister Nick Hurd of having "likely signed my son's death warrant" before heading to a London meeting with him.

"It's Billy's anti-epileptic medication that Nick Hurd has taken away, it's not some sort of joint full of recreational cannabis.

"Let me tell you something now: we will not stop, we are not going to stop, we are not going to give up, we have love, hope, faith for our kids and we are going to continue."

She said Billy was due his next dose at 3.30pm, and warned of the dangers of missing his first treatment in 19 months.

 

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Charlotte Caldwell returned to the UK from Canada with the cannabis oil but had it confiscated as she arrived at Heathrow

"The reason they don't do it is that it can cause really bad side-effects - they wean them down slowly. So what Nick Hurd has just done is most likely signed my son's death warrant."

It's not some sort of recreational cannabis, it is his anti-epileptic medication he has taken off me today.

"I'll go back to Canada and I'll get more and I'll bring it back again because my son has a right to have his anti-epileptic medication in this country and his own home."

She said customs officers were "conflicted" about removing the medication from her.

She added that doctors are trialling the oil in Canada and it's been "very successful."

 

NINTCHDBPICT000412586201.jpg?w=960

The mother pledged to go back and try again to get her son the prescription she believes will help him

"I'm not at all interested in recreational use.. It's not something I've ever had an interest in, and for me it's a small bottle of oil that's keeping my son alive, it's anti-epileptic medication. It keeps his life-threatening seizures at bay, it's keeping him alive," she said.

Billy, 12, was given a prescription for medicinal cannabis oil last year to help treat his epilepsy - in a case similar to that of six-year-old Alfie Dingley, who met with Theresa May in March in a bid to help change the law around the drug.

He has a form of the condition meaning he cannot get help through medication or diet.

He used to suffer up to 100 seizures a day until he began treatment with cannabis oil in the US, where medical marijuana is legal, in 2016.

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Charlotte has fought to get her son Billy the treatment she thinks can help calm the number of seizures he suffers

 

She said she would be meeting Mr Hurd at the Home Office on Monday afternoon to plead to him "parent to parent" to get the oil back.

The Home Office has defended the seizure of cannabis oil from a mother who attempted to get it into the UK to treat her son's severe epilepsy.

A spokesman said: "The Home Office is sympathetic to the difficult and rare situation that Billy and his family are faced with.

"Whilst we recognise that people with debilitating illnesses are looking to alleviate their symptoms, Border Force has a duty to stop banned substances from entering the UK. Ms Caldwell has, therefore, had cannabis oil seized this morning at Heathrow Airport upon landing from Canada.

"The Policing Minister will meet Ms Caldwell this afternoon."

 

What is cannabis oil and why does Billy Caldwell need it?

 

Billy Caldwell can suffer up to 100 epileptic seizures in a day, and his mother Charlotte previously got cannabis oil for Billy’s treatment from the US.

This medicine reportedly had stopped Billy’s seizures but when they were unable to travel for a new supply, she took Billy to their GP.

Recognising this as a “unique” case, Dr Brendan O’Hare prescribed the medicine to Billy, but was told last year by the Department of Health and the health board he should not continue to do so.

Cannabis oil is a medicine containing a part of the cannabis plant called cannabidiol (CBD).

It does not contain the ‘psychoactive’ part of cannabis – the part that causes the feeling of being high.

Last year, the UK’s Medicines and Healthcare products Regulatory Agency (MHRA) classed CBD as a medicine in the UK, but it has not been licensed as a medicine.

The agency has said that CBD products must be licensed as this means they “have to meet safety, quality and efficacy standards”.

 

In 2017, he became the first person in the UK to receive a prescription after his local GP Brendan O'Hare began writing scripts.

The doctor was summoned to a meeting with Home Office officials recently and told to desist.

Ms Caldwell is worried the cycle of fits "will eventually kill him", and has struggled to contain her son's seizures without access to the cannabis oil.

She said Billy has been free of the debilitating episodes for a considerable period since the treatment.

NINTCHDBPICT000301615111.jpg?w=960

Charlotte said the oil is keeping her son's life-threatening seizures at bay

The Department of Health in Northern Ireland said it did not comment on individual cases, but added that Cannabis is a Class B controlled drug and has not yet been licensed in the UK as a medicine.

"However, an application made by a specialist clinician based in the UK to prescribe a Schedule 1 controlled drug on the basis of relevant medical and scientific evidence and guidance may be considered within existing legislative provisions and appropriate clinical supervision arrangements.

"No such clinically supported applications have been received by the department," it confirmed.

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A fisherman gave me this quote that fit quite well

Quote

 

--- Into the Fray ---

Once more into the fray
Into the last good fight I'll ever know
Live or die on this day
Live or die on this day


 

from the film     the grey 

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Updated News

Billy Caldwell's mum resumes talks with British government for son's medical cannabis

Two meetings held on Monday resulted in no movement for the family

 

Original Article: By Jilly Beattie 08:27, 12 JUN 2018

https://www.belfastlive.co.uk/news/belfast-news/billy-caldwells-mum-resumes-talks-14772528

 

Talks start again this morning in London as cannabis campaigner mum Charlotte Caldwell fightsto retrieve her son’s medical cannabis from the British government.

Two meetings held on Monday resulted in no movement for the family.

And since Charlotte and her sister landed back in the UK from Canada with his oil, he has missed three vital doses.

 

The sudden removal of his medication after 19 months of daily use could prove deadly to the youngster.

The 100 seizures he suffered daily before he was prescribed medicinal cannabis had stopped.

But now his mum Charlotte says she will not sleep until he gets the oil back.

She said: "I slept with my arm and leg around Billy all his life until the last 18 months when his seizures dropped away thanks to his medication.

 

"But now we are back to square one. By the time I wake on Tuesday and start to fight for the oil to be returned, he will have missed four doses.

"This is medication and no medication should be stopped abruptly, especially in a child who suffers from epilepsy. That’s a death sentence by any other name.

"I’m exhausted and upset but I’m not beaten and will never be beaten while I have Billy. I will never give up on him and his wellbeing.

"He will sleep tonight and I pray he sleeps peacefully. I’ll watch him every minute. It’s all I can do to keep him alive until we get his oil back.

"What parent would do any less? Apparently that’s what is expected of me.. to let my son slip away. I didn’t do it 12 years ago, I didn’t do it two years ago and I’m not going to do it now."

 

 

Epileptic boy has first seizure in months less than 24 hours after 'life-threatening' confiscation of cannabis medication

 

 

Billy Caldwell suffers first seizure after cannabis oil confiscated

His 100 seizures a day stopped when he started the medicinal cannabis drops

 

Billy Caldwell whose medicinal cannabis oil was confiscated by the Tory government yesterday, has suffered his first seizure in 19 months.

The 12-year-old poster child for the fight to legalise the herbal medication, had missed four of the tiny doses prescribed to him in Toronto.

His mum Charlotte, 50, from Co Tyrone , travelled from Canada on Monday with Billy and openly declared the Tilray oil at Heathrow Airport.

 

But tearful custom's officers, under orders from Tory Policing minister Nick Hurd, confiscated the bottle which contained enough dosages for six months.

 

Just 12 hours later Billy suffered his first epileptic seizure in 19 months.

The 100 seizures he suffered daily before he was prescribed medicinal cannabis had stopped and the youngster had been living a normal life, able to attend school and even learning to swim.

 

 

But at 1.01am Billy suffered a telltale seizure associated with intractable epilepsy. He cannot come out of the fits himself and needs medicated to try to bring him around.

 

Charlotte said: "Thank God he survived the seizure but he could have another any moment and each one could kill him

 

"He would not be having seizures if he was on his oil. It was confiscated and his medication halted without warning or weaning and that is not medical protocol by any stretch of the imagination."

Today mum Charlotte and other family hope to meet government ministers again to urge them to return Billy's medication.

 

A spokesperson for the Home Office said on Sunday: “We are sympathetic to the difficult and rare situation that Billy and his family are faced with.

‘While we recognise that people with debilitating illnesses are looking to alleviate their symptoms, it is important that medicines are thoroughly tested to ensure they meet rigorous standards so that doctors and patients are assured of their efficacy, quality and safety.”

 

 

The latest radio news

Quote

She was recommended to see three doctors , but none of them have contacted her, she is still waiting , billy is now on low grade  commercial cbd oil which is available in the uk , but he needs his proper oil with thc for his condition.

 

~CBD oil works best when a little bit of THC is added as they work best combined.

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DUP gives backing to Billy Caldwell receiving cannabis medication

 

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Original Article: https://www.belfasttelegraph.co.uk/news/northern-ireland/dup-gives-backing-to-billy-caldwell-receiving-cannabis-medication-37009693.html

 

The DUP have given their backing to Northern Ireland boy Billy Caldwell receiving access to medicinal cannabis oil which his mother says helps control his seizures and could even safe his life.

The party had previously remained tight lipped on the issue and were not part of a five party grouping (SDLP, Sinn Fein, UUP, Alliance and Greens) from Northern Ireland which backed allowing access to cannabis oil on the NHS earlier this month.

However a DUP spokesperson has now said that the party is in favour of Billy getting access to the medication until a final recommendation has been made on the issue from medical experts.

Billy has a rare form of epilepsy and has been denied access to the medication following a ruling from the Home Office.

His mum Charlotte took Billy to Canada retrieve the medication but it was then seized at Heathrow Airport as they attempted to return to Northern Ireland.

She accused Home Office Minister Nick Hurd of having “likely signed my son’s death warrant” following the seizure.

Ms Caldwell is still awaiting an appointment with consultants recommended by the Home Office.

She said her son had suffered his first seizure in 300 days  after being denied the medication.

A DUP spokesperson confirmed that they had met with Billy's family to discuss the issue.

"DUP representatives have met with the Caldwell family on many occasions and continue to make representations on their behalf. MPs will usually be only able to facilitate meetings with Ministers on behalf of their own constituents however," the spokesperson said.

"The party pursues an evidence-based approach to our position on cannabis. We do not support legalisation of cannabis for recreational purposes.

"Trials are ongoing to test cannabis-based drugs for conditions such as epilepsy in children, glaucoma and cancer pain. We recognise that patients and their families will be keen to have access to innovative treatments immediately but it is necessary that such drugs are rigorously tested and all processes followed to ensure full safety and effectiveness."

The spokesperson said the party was in favour of Billy receiving the medication until a final decision on the issue has been made.

"In the absence of decisions by such expert bodies, consideration has been given to specific process where medication could be provided on an individual basis at the request of an individual clinician to a particular patient for a particular condition," the spokesperson said.

"We are supportive of such an approach until final decisions are made on more general availability."

The latest development comes after Ms Caldwell hit out at the links between Theresa May's husband and companies which supply the drug.

The Daily Mirror reported Philip May's Capital Group is the largest investor in GW Pharmaceuticals, which produces cannabis oil - which Billy Caldwell had been using for his treatment - for sale in a foreign market.

Speaking to the paper, Billy's mother Charlotte Caldwell said: "Why is my son being left to die in his own country by his own government? I can tell you why, greed and hypocrisy and it’s a recipe that will kill Billy.”

Billy Caldwell requires cannabis oil to prevent seizures.

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UK-based cannabis-legalisation group United Patients Alliance reported in April GW Pharmaceuticals has produced a medicine extracted from the raw cannabis plant called Sativex, used for Multiple Sclerosis patients, as well as Epidiolex, which is made using purified cannabinoid (a component part of cannabis) CBD.

It also highlighted that husband of UK Home Office minister Victoria Atkins is a managing director of British Sugar which grows raw cannabis to supply GW to manufacture Epidolex.

Victoria Atkins has previously spoken out against the legalization of cannabis.

 

 

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Home Office looks at allowing cannabis oil for boy with epilepsy

 

Prescriptions consideration comes after Billy Caldwell, 12, has ‘life-threatening’ seizures

The Home Office has said it will “carefully consider” allowing a 12-year-old boy to be prescribed cannabis oil after he was admitted to hospital with “life-threatening” seizures following the confiscation of his supply.

Billy Caldwell had his anti-epileptic medicine confiscated at Heathrow airport on Monday. If the decision is made to permit him to have the treatment, it would be the first time that cannabis oil containing THC was legally prescribed in the UK since it was made illegal in 1971.

Late on Friday night, Billy’s family were trying to find a clinician with knowledge of his condition to recommend the prescription of cannabis medicine.

His mother, Charlotte Caldwell, said: “Finally I’m hearing signs that the Home Office appreciate the severity of Billy’s condition, and are showing a willingness to act humanely.”

In a statement, a Home Office spokesperson said: “Billy is in the care of medical professionals who are best placed to assess the care and treatment that he requires.

“The Home Office is contacting Billy’s medical team. If the team treating Billy advise a particular course of urgent action, the Home Office will carefully consider what options are available to help facilitate that advice.”

On Friday afternoon, Billy was taken to Chelsea and Westminster hospital in west London in an ambulance after experiencing uncontrollable seizures.

“Billy has had back-to-back seizures today,” his mother said. “On his medication, which included the vital but banned THC component, he was seizure-free for more than 300 days.”

Caldwell said doctors in Canada and Northern Ireland familiar with the case had described her son’s situation as life-threatening. She said the Home Office would be held accountable if her son died.

Billy had been placed on cannabidiol (CBD) oil, along with opiate-based medication, after he was forced to stop taking cannabis oil, but he failed to respond positively to the treatment and his health deteriorated as his seizures gradually resumed.

The family said the 12-year-old can now be treated only with hospital-administered medication.

Speaking from hospital, Caldwell told Sky News: “[Billy’s] out of the seizure but I cannot administer any more rescue medicine for him at home. He’s been admitted and they’re keeping him in hospital simply because Billy’s seizures are life-threatening ... one seizure can kill him.”

Earlier on Friday, Caldwell criticised the government for effectively forcing them to leave the UK.

“No mother should be made to flee the country to keep their child alive,” she said. The pair have spent about four of the past 12 years abroad because cannabis oil is illegal in the UK.

On Monday they had six months’ worth of anti-epileptic medicine confiscated by customs agents when they arrived at Heathrow from Toronto. Caldwell was invited to meet the Home Office minister Nick Hurd, who told her that it would not be returned, despite her pleas.

“It has to be the most frightening situation that a mother could ever be put in,” Caldwell told the Guardian, describing how she and Billy had been forced to leave their home, friends and family in order to access the potentially life-saving medicine.

“He’s undergone countless administrations of anti-epileptic pharmaceutical drugs which have never worked and have upset his entire system,” Caldwell said. “The side-effects left him so depleted that he couldn’t even lift his head or pick up a toy.”

The anti-epilepsy drugs prescribed by the NHS often cause uncontrollable tremors, hair loss, swollen gums and rashes, among other adverse effects. Feeling that she had no choice but to seek treatment for her child abroad, Caldwell found a doctor in the US in September 2007 who “saved Billy’s life” by weaning him off anti-epileptic pharmaceutical drugs, which she says were aggravating his seizures.

The doctor also placed him on a ketogenic diet – a high-fat, low-carbohydrate food plan – that helped his seizures to rapidly subside.

Eight years later, in June 2016, the seizures returned. They travelled to California again in September that year, until their money ran out eight months later and they came back to their home in Northern Ireland.

In March 2017 they walked 150 miles in eight days, from their home to the hospital, to demonstrate the incredible improvement in Billy’s condition after the cannabis treatment.

A doctor in Northern Ireland prescribed him the oil, since it was clear it was the only effective treatment. This was the first time a child had ever been issued the substance on the NHS.

The oil contained CBD and also THC the psychoactive constituent of cannabis that gets users high. In October 2016, the Medicines and Healthcare Products Regulatory Agency issued an opinion that products containing CBD used for medical purposes are medicine. However, medicines containing the raw form of THC remain illegal.

The government’s current position is that THC has no recognised medicinal or legitimate uses beyond potential research.

Although some children with epilepsy respond positively to CBD, the conditions of others, such as Billy, respond only to THC-derived products. And there is growing evidence of the benefits of prescribing medicinal cannabis.

After about 300 days without a seizure, the Home Office recently ordered the doctor to stop prescribing the oil, prompting Caldwell to seek treatment in Canada, which is preparing to legalise cannabis.

The case has shone a light on a drug policy that critics see as outdated and has provoked widespread demands for urgent reform, as well as calls for an exception to be made for Billy until legislation can be considered.

Caldwell said she doubted whether she or Hurd would be arrested if the minister decided to “do the right thing” and allow Billy to have his anti-epileptic medication.

“Surely common sense should prevail,” she said, pointing to the public support for the legalisation of medical cannabis, and the fact that police in some parts of the country had deprioritised cannabis offences.

“To me, this is not an illegal or controlled substance, this is my little boy’s medicine. Even if you drank six months’ worth of this medicine, you wouldn’t get high because the THC content is so low.”

There are around 63,400 children with epilepsy in the UK and a third of those do not respond to the medication prescribed by the NHS. Some 1,150 people died of epilepsy-related causes in 2009.

Billy, who also has severe autism, cannot talk and requires 24/7 care, enjoys riding his pony Paddy, often goes swimming and attends a special needs school.

Asked how Billy had handled a week of intense media attention, Caldwell said he had been “a wee bit out of sorts” and that “he knows that something is going on”.

On Tuesday morning he had his first seizure in almost a year.

On the same day, a group of pro-reform Tory MPs said that medicinal cannabis could be on sale within a year. But this could be too late for Billy. “The fear that Billy will die without his medication has been my overriding emotion this week,” said Caldwell. “I think that fear is keeping me going.”

 

From the Guardian site and this is direct to Guardian, we are just passing on their request since we use their link.

Since you’re here…

… we have a small favour to ask. More people are reading the Guardian than ever but advertising revenues across the media are falling fast. And unlike many news organisations, we haven’t put up a paywall – we want to keep our journalism as open as we can. Democracy depends on reliable access to information. Your support helps keep The Guardian open to a global audience for generations to come.

The Guardian’s independent, investigative journalism takes a lot of time, money and hard work to produce. But we do it because we believe our perspective matters – because it might well be your perspective, too.

 
I appreciate there not being a paywall: it is more democratic for the media to be available for all and not a commodity to be purchased by a few. I’m happy to make a contribution so others with less means still have access to information.Thomasine, Sweden

If everyone who reads our reporting, who likes it, helps to support it, our future would be much more secure. For as little as $1, you can support the Guardian – and it only takes a minute. Thank you.

 

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Cannabis oil row: Boy has epilepsy medication returned

Original article: https://www.bbc.com/news/uk-44507135

 

A boy with severe epilepsy has been given back medicinal cannabis oil that was confiscated from his mother at customs, the home secretary has said.

Billy Caldwell, 12, received the oil after doctors made clear it was a "medical emergency", Sajid Javid said.

Billy's mother, Charlotte Caldwell, from County Tyrone, said they had "achieved the impossible" but called for the oil to be freely available.

Billy began using cannabis oil in 2016 to control his seizures.

The cannabis oil, which contains a substance called Tetrahydrocannabinol (THC), is illegal in the UK but available elsewhere.

Billy's most recent supply - which Ms Caldwell had tried to bring into the UK from Canada - was confiscated at Heathrow Airport on Monday and he was admitted to hospital before Mr Javid said it would be returned.

The oil arrived at Chelsea and Westminster Hospital, where Billy is being treated, on Saturday afternoon. It was administered under a special 20-day licence and is not allowed to be taken home.

A spokeswoman for the Home Office said it was an "exceptional licence" for a "short term emergency" and it would need to be reviewed.

'Completely broken'

Ms Caldwell said: "I truly believe that somewhere in the Home Office there's someone with a heart, and I truly believe that Billy was pulling on their heart strings."

But she said Billy's "little body has been completely broken and his little mind".

"No other family should have to go through this sort of ordeal, travelling half way round the world to get medication which should be freely available," she said.

"My experience leaves me in no doubt that the Home Office can no longer play a role in the administration of medication for sick children in our country.

"Children are dying in our country and it needs to stop now."

_94649157_mumandbilly.jpg

Billy was admitted to hospital in London on Friday

 

Mr Javid said he had issued a licence to allow Billy to be treated with the cannabis oil after discussions with Billy's medical team.

"This is a very complex situation, but our immediate priority is making sure Billy receives the most effective treatment possible in a safe way," he said.

"My decision is based on the advice of senior clinicians who have made clear this is a medical emergency.

"The policing minister met with the family on Monday and since then has been working to reach an urgent solution."

Reality Check: Does UK export the most legal cannabis?

Barbara Zieniewicz, co-founder of campaign group Families4Access, and who travelled to Canada with Billy and Ms Caldwell, called Mr Javid's decision "triumphant".

"I strongly believe that this is the first push - from here, it's a ripple effect. This means, to me, there is hope, not just for Billy, but for all the families that need it."

Billy, from Castlederg, started the treatment in 2016 in the US, where medical marijuana is legal.

Ms Caldwell says Billy's seizures dramatically reduce when he takes the oil.

In 2017, he was prescribed the medication on the NHS. But in May this year, his GP was told he could no longer prescribe it.

At the time the Department of Health in Northern Ireland said cannabis had not yet been licensed in the UK as a medicine.

Last Monday, Ms Caldwell tried to bring a six-month supply of the oil - to treat up to 100 seizures a day - into the UK from Toronto but the substance was confiscated by officials at Heathrow airport.

The boy's family said he was taken to hospital when his seizures "intensified" in recent days.

The family's MP, Órfhlaith Begley, said the Home Office's decision was "life-saving", adding: "I will continue to engage with the Home Office and the health authorities to ensure he can access his medication in the longer term so there is no repeat of the trauma he has suffered over recent weeks."

'Not straightforward'

Dr Amir Englund, who studies cannabis at the Institute of Psychiatry at King's College London, said: "Clearly, there is evidence that Billy's medication works for him where others have failed.

"The duty of government is to protect its citizens from harm with regulations on medicines, so that the ones doctors prescribe are safe and effective.

"However, there are instances which these measures become counterproductive and harmful. This is such an instance, and the Home Office should allow an exemption so that he does not come to further harm."

Meanwhile, clinical lecturer in psychiatry at University College London, Dr Michael Bloomfield, said on the one hand "current laws are too strict", but added that the issue of medical marijuana is "far from straightforward".

"Any 'medical marijuana' needs a scientific evidence base, in the form of medical trials et cetera, which is currently lacking for many disorders and has become, for many jurisdictions, a potential way of decriminalising cannabis through the back door," he said.

Does cannabis have medicinal benefits?

CBD and Tetrahydrocannabinol (THC) are two types of cannabinoids found naturally in the resin of the marijuana plant.

A cannabis-based drug called Sativex has been licensed in the UK to treat MS. It contains THC and CBD.

Doctors could, in theory, prescribe it for other things outside of this licence, but at their own risk.

MS patients prescribed Sativex, who resupply it to other people, also face prosecution.

Another licensed treatment is Nabilone. It contains an artificial version of THC and can be given to cancer patients to help relieve nausea during chemotherapy.

Source: NHS Choices

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Billy Caldwell to be granted 'lifetime' medical cannabis licence

 

From Q Radio Local News - Tuesday, July 3rd, 2018 6:04am - By David Hunter

 

The Home Office has rubber-stamped a special exemption licence meaning severely epileptic Billy Caldwell can go home with his medicinal cannabis, a family spokesman has said.

His mother Charlotte, of Castlederg in Co Tyrone, Northern Ireland, had seven bottles confiscated at Heathrow Airport customs on June 11 after she brought them in from Toronto.

Last month a 20-day emergency licence was granted for 12-year-old Billy after he was admitted to hospital in a critical condition having suffered multiple seizures.

But a family spokesman said the Home Office, and Chelsea and Westminster Hospital have now agreed he can go home to Northern Ireland with his medicinal cannabis.

He added: "The Department of Health in Northern Ireland are applying for a licence for Billy's medication to be administered at home in Castlederg.

"In anticipation of that application being processed, the Home Office have rubber-stamped it and he will be going home at some point this week."

The spokesman said the special exemption licence was agreed on Monday afternoon.

Welcoming the development, Ms Caldwell said in a statement that the "Home Office clearly wanted this to happen".

"The amazing Chelsea and Westminster Hospital got behind it, and they've helped make it happen," she added.

"We all now need to make this also happen for all the other families who need medicinal cannabis.

"We are in the very final stages of what has been an amazing four weeks. I can barely believe we'll be home in a few days.

"Billy has been amazingly resilient throughout. He's autistic, and everything that has been going on - no regularity, no familiar surroundings - are beginning to take their toll on him.

"He needs his toys, his garden, the things he's used to. I need to see him happy and well. I can't believe he'll be back in his own bed in a few days. It's within our grasp."

A family spokesperson described it as a 'lifetime' licence, but the Home Office hasn't clarified the limitations. 

Chelsea and Westminster NHS Foundation Trust and the Home Office both declined to comment.

Following the public uproar over the confiscation of the cannabis oil from Ms Caldwell as she attempted to bring it into the UK, a new panel assessing claims for its use was set up.

On Wednesday, the temporary expert panel began accepting applications for licences for the drug from senior clinicians.

The Home Office announced the panel will make "swift" recommendations to ministers, who will then sign off on applications within two to four weeks.

If given approval, doctors can then start writing prescriptions for their patient, while ministers decide whether to remove cannabis's banned status as a medicine.

Ms Caldwell said the focus will now turn to a campaign to get "every other family equal opportunity, and equally swift progress through the assessment process".

"Clinicians simply don't yet have guidelines, and no clinician will operate outside guidelines, so few are taking what they see as the risk of entering a patient into the assessment process - and even those who have seen the Government's announcement are hesitant," she said.

"We want to help them in any and every way we can."

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