By Aasma Day
Many medics are reluctant to prescribe cannabis as a medicine despite it being legally allowed, either because they don’t understand it properly or wrongly link it to “street skunk”, HuffPost UK has found.
Doctors will be able to prescribe cannabis products to patients from November 1 following a relaxation of rules announced by Home Secretary Sajid Javid. The shift comes after a number of high profile cases of sick children whose parents said that their daily lives had been improved by cannabis oil.
However, despite this legal victory, families and experts say the new regulations will not be a “magic wand”. They fear it will be meaningless unless doctors fully support and understand the use of medicinal cannabis.
Parents of ill children who have seen dramatic changes after using cannabis oil have told HuffPost UK they are locked in battles with doctors unwilling to help them access the medication.
A medical cannabis expert has labelled it “completely ridiculous” that some doctors view cannabis oil like street cannabis, and says training and education among the medical profession is urgently needed.
‘I Would Break The Law To Keep My Daughter Alive’
As a parent, Jenna Heary would do anything to protect her children. However, the mum-of-three says she feels helpless as she fights a constant battle with doctors to give her daughter Olivia the cannabis oil that has already made a huge difference to her life.
Olivia, three, from Preston has a severe form of early onset epilepsy and can suffer more than 100 seizures in one day.
Mum Heary, 23, said she and her partner were told that Olivia has the same condition as David Cameron’s son Ivan, who died at the age of six.
“We were initially told Olivia wouldn’t survive until one and now doctors say she won’t make it past 10,” she said. “It is very frightening as Olivia could have an epileptic fit at any time which could cause sudden death.”
Olivia’s parents say doctors prescribed her a range of anti-epileptic medication to the point where they felt their daughter was being used as a “guinea pig.”
When nothing seemed to work, Heary carried out her own research and read about children with epilepsy whose lives had apparently been transformed by cannabis oil.
The couple asked Olivia’s specialist about it but were told it hadn’t been through proper testing.
After making a public plea for help, the family were contacted by an American company who began supplying cannabis oil and paste for free. Heary said: “After a couple of weeks, we started noticing an improvement.
“Olivia wasn’t having as many big jerks or huge seizures. Her eyes used to constantly shake from side-to-side but this stopped.
“Olivia began smiling and laughing and lifting her legs. It was amazing.
“However, the oil that Olivia is on is legal and only has a tiny dose of THC. Now she is getting used to it, she is becoming immune to its effects.
“We need a higher strength CBD oil but at the moment, that would be illegal.”
Olivia’s parents asked their daughter’s neurologist to support them in their quest to apply for a licence for cannabis-based medicine, similar to the high profile cases of Billy Caldwell and Alfie Dingley – but say she refused.
Heary said: “Olivia’s neurologist keeps saying no as she does not have the specialist knowledge about medical cannabis.
“Her argument is she is worried about brain damage. But all the seizures Olivia is having will cause more brain damage than any cannabis oil and Olivia might not even need a higher dose of THC but a different strength of CBD oil.
“Olivia is suffering every day and we feel at our wit’s end as we are fighting a constant battle with doctors to get her comfortable and give her quality of life.
“I will break the law if I have to to keep my daughter alive.”
When contacted by HuffPost UK, a spokesman from Lancashire Teaching Hospitals NHS Foundation Trust said that Olivia’s specialist felt that until there was a movement nationally for cannabis medication to be made available by prescription, she did not feel it was something she could support.
Olivia’s parents believe the ambiguity around the legal picture has led to a lack of awareness among physicians. Her father said: “The problem is doctors don’t think of cannabis oil as a medical treatment. They think of it as illegal cannabis that people buy on the streets.
“They need to look at the medical benefits and research it.”
‘I Don’t Want My Child To Walk Around Stoned: That’s Not My Objective’
“There were points where I would look at my child and feel so sorry as she was so anxious and frightened and we couldn’t help her,” Tannine Montgomery told HuffPost UK. Her four-year-old daughter Indie-Rose has Dravet Syndrome, a rare and aggressive form of epilepsy which comes with other conditions including severe insomnia.
Montgomery, 29, who lives with her partner in Suffolk, explained: “Indie was put on eight different types of anti-epileptic drugs and on different combinations but her seizure control did not really change.
“Indie suffers from chronic seizures which are full body convulsions. She was just zombified as the drugs had very sedative effects. Indie declined and at the age of two, she was almost non verbal.
“One of Indie’s bouts of insomnia went on for 36 hours and she had severe anxiety with it.”
The couple researched Indie’s condition and came across cannabis oil. The family went to Holland to obtain some, and since July this year, when she began using cannabis oil, has been weaned off other medications.
“Indie has not had a bout of insomnia since then and suffers around 65% less seizures,” Montgomery said. “She can have a 10 day gap between seizures.
“Indie is trying to talk, is more alert and responsive, has better concentration and is enjoying life.
With the support of the End Our Pain campaign group, Indie’s parents applied to the specialist panel to be prescribed cannabis-based medicine.
However, Montgomery says it is frustrating as although they have been given a licence, it is not for the cannabis oil they have been using.
She explained: “They are saying the [active ingredient] THC in the oil Indie is using is too high. But I’ve had it tested and it is not very different [in strength] from the one they are telling us to use.
“The oil Indie is on is the whole cannabis plant extract so is very different. Doctors don’t seem to realise it is helping her.
“I don’t want my child to walk around stoned. That’s not my objective. I want to give her quality of life.
“I think the problem is most doctors don’t know anything about cannabis. They have been told for years it is a gateway drug. It is just lack of education.”
‘What’s The Point Of Cannabis Products Becoming Available If Doctors Won’t Prescribe It?’
Teenager Bailey Williams has been suffering seizures since the age of two, and was diagnosed with a rare form of epilepsy called Lennox-Gastaut Syndrome at seven.
Doctors prescribed him a variety of different anti-epileptic medication, some of which had side effects including hallucinations, hair loss, head-to-toe rashes and behavioural changes.
Bailey, now 16, was in and out of hospital, with weekly visits by ambulances to his family’s home in Cardiff.
His mum, Rachel Rankmore, told HuffPost UK: “Three years ago, Bailey was taken into hospital. He was loaded up with such an obscene amount of emergency drugs, he didn’t wake up for three days – and doctors did not know if he would.”
Bailey’s desperate parents researched a legal cannabinoid and obtained it from the US at £290 a bottle, lasting six to eight weeks a time.
Bailey has been using CBD oil for three years and his mum says the effects were ”like a light had been switched on”.
“Bailey was talking and alert, his coordination improved and the severity of his seizures calmed down drastically.
“Most importantly, in the last three years, he hasn’t had a hospital stay or an ambulance come out.”
Bailey’s parent feel their son is a prime candidate for applying to the expert panel for cannabis medication – but say their consultant will not support them. They fear that after November 1 they it will not be prescribed for him.
Rankmore said: “It is exasperating as they know Bailey is on the oil and have seen the positive effects.
“I feel there is a lack of education and ignorance among many doctors when it comes to cannabis medication.
“What is the point of these prescriptions being available from November 1 if doctors won’t prescribe it?
“A lot of education is needed otherwise we will still have very sick children suffering.”
When HuffPost UK contacted Bailey’s doctors, a spokesman for Cardiff and Vale University Health Board said: “We always act in the best interests of patients and put patients at the centre of everything we do.
“We welcome the opportunity to speak with Bailey and his family about his treatment and pathway options and discuss any concerns the family may have about any aspect of the management of his condition.”
‘It Is Not The Home Office We Need To Convince Now, But Medical Professionals’
The high profile cases of youngsters Alfie Dingley and Billy Caldwell helped lead to regulations being changed to make cannabis products available for prescription from November 1.
The two families say they have seen the firsthand benefits and now want other children to have the same.
Hannah Deacon, mum of seven-year-old Alfie Dingley, says it is concerning that doctors are blocking families from getting cannabis oil for their children.
She told HuffPost UK: “Some doctors can’t get their head around medicinal cannabis and there needs to be a huge shift in thinking.
“There is risk and benefit to every medical treatment and a child having hundreds of seizures is far more dangerous than having a tiny bit of THC in cannabis oil.
“Doctors were seen as God-type creatures 20 to 30 years ago but now parents can research on the internet and find out about things like cannabis oil – and some doctors don’t like being questioned.
“We need to modernise our way of thinking in this country and that will take time.
“We are lucky as we worked with some amazing doctors who were very supportive of Alfie.
“Alfie used to have up to 500 seizures a month and was in hospital every week. He has been on cannabis oil since September 2017 and doesn’t have any seizures now.
“He has just learnt to ride a bike with stabilisers and is going to school every day. Before, he was so ill, he couldn’t do anything for years.
“It is a miracle and that’s why I am so passionate about getting this for other families and children.
“It is not the Home Office we need to convince now, but the doctors.
“It is wrong for doctors to deny these children and families the treatment they need. We have won the battle, but the war isn’t over.”
Charlotte Caldwell spent years campaigning for a law change after discovering cannabis oil helped her 13-year-old son Billy’s epileptic seizures.
She told us: “I applaud the Home Secretary as he listened, acted with compassion and kept his promise.
“But there are still hurdles to overcome and our doctors need to be trained and educated in the medicine urgently.
“Some doctors will be very cautious but the policymakers need to deliver what the politicians promised.
“If this doesn’t happen, medicinal cannabis will go on the black market and people will obtain it through other means.”
‘It Is Not Remotely Like Street Skunk’
Medical cannabis expert Prof Mike Barnes believes that now the Government has been convinced, there needs to be an urgent focus on training and educating doctors.
Barnes, Professor of neurological rehabilitation at the University of Newcastle, said: “In fairness, the Home Office acted swiftly and efficiently when there was media pressure and set up the temporary panel and from November 1, specialist doctors will be able to prescribe cannabis oil.
“On the surface, that seems great. the However, the biggest issue is the reluctance of doctors to prescribe cannabis.
“There are those who may be supportive but don’t understand it. Then there are those who don’t want to prescribe it because they feel there is not enough evidence and they don’t agree with it.
“I think there is a lot of misunderstanding and some think these children will be taking the same cannabis that is on the streets.
“This is utter rubbish as it is completely different. Street cannabis is high in THC while medical cannabis is low in THC and the CBD counteracts it.”
Prof Barnes says what is alarming is that in Germany where medical cannabis oil has been legal for three or four years, only two per cent of doctors actually prescribe it.
To tackle this, a Medical Cannabis Clinicians Society will be launched on November 5 and Prof Barnes will also be running a free teaching programme in London to educate doctors.
The Epilepsy Society
Ley Sander, who is a Professor of Neurology and Clinical Epilepsy as well as medical director at the Epilepsy Society, believes it is understandable that many doctors do not yet feel confident about prescribing medicinal cannabis.
“This is new territory in terms of treatment and doctors are right to exercise caution in the interests of their patients,” he said.
“We are reassured by the Government that there will be substantial clinical advice provided to doctors by expert bodies including NHS England, the British Paediatric Neurology Association and the Royal College of Physicians.
“In the longer term, the National Institute for Health and Care Excellence is producing more detailed guidelines for clinicians.
“It is vital these measures give specialists the required confidence to support their patients or we are going to see many very frustrated families who will feel let down by the promise of something that ultimately proves to be outside their reach.”
NHS England confirmed it is drawing up guidance for healthcare professionals and this will be published before the regulations come into force.