Campaigners have been left ‘bitterly disappointed’ by the NHS watchdog’s decision to rule against prescribing medicinal cannabis today.
In draft guidelines, the National Institute for Health and Care Excellence (NICE) said cannabis should not be given to patients with multiple sclerosis or chronic pain.
And it couldn’t decide whether or not to approve it for children with rare forms of epilepsy because of a lack of evidence, meaning their parents are no closer to getting hold of the medicines.¬†¬†
These parents are the ones who piled pressure on the Government to legalise the drugs last year but have found it nearly impossible to get them ever since.
Meanwhile, NHS England has been praised for a ‘forward-thinking’ review which called for more research to be done into the benefits of cannabis.
Health service bosses also said a ‘specialist network’ should be set up to help ‘very cautious’ doctors worried about prescribing the drug.
Alfie Dingley, six, is one of only two children in the UK to have an NHS prescription for medical cannabis to treat his severe epilepsy. A campaign run by his family and the families of others with similar conditions were the tipping point for Government to legalise medical cannabis
Billy Caldwell, 13, pictured with his mother Charlotte, thrust the cannabis debate into the limelight when Mrs Caldwell was stopped at Heathrow Airport while trying to smuggle cannabis oil home to her son, who is severely epileptic
‘We‚Äôre bitterly disappointed by these guidelines,’ said Genevieve Edwards, spokesperson for the MS Society.
‘NICE‚Äôs refusal to recommend cannabis for pain and muscles spasms, or to fund Sativex on the NHS, means thousands of people with MS will continue to be denied an effective treatment.’
The MS Society says on its website that one in five patients it surveyed in 2014 said they had used cannabis to help ease the stiffness and pain the condition causes.¬†
The raging debate concerns cannabis medicines containing the chemical tetrahydrocannabinol (THC), which is what makes people high when they smoke it.
A university professor said in February that access to medicinal cannabis had been ‘appalling’ since it was legalised in November.
At the time Professor Mike Barnes, from Newcastle University, claimed that only six patients had been given prescriptions ‚Äď and none of them were on the NHS. There are now believed to be two children who have NHS prescriptions.
Since November 1, 2018, specialist doctors in the UK have been able to legally prescribe unlicensed marijuana-based products containing THC, which is what makes users ‘high’.¬†
But despite the law change, the British Paediatric Neurology Association‚Äôs guidelines do not recommend the prescription of medicinal cannabis that contains THC.¬†¬†
‘The situation is appalling,’ Professor Barnes said in The British Medical Journal.
‘Not one patient has benefited from a cannabis prescription on the NHS.
‘The legislation has had no impact on the health of people due to the lack of education of the medical community and overcautious guidelines produced by the Royal College of Physicians and the British Paediatric Neurology Association.’¬†
Cannabis products without this chemical, such as CBD oils, are already legal and available to buy on the high street.¬†
Cancer patients who are suffering from vomiting caused by chemotherapy were the only group for whom NICE approved cannabis medicines.
But the highest profile campaigners have been those calling for the drugs to be made available to children with rare forms of epilepsy.
Sir Mike Penning MP, co-chair of the All-Party Parliamentary Group on Medical Cannabis Under Prescription, said: ‘There are positives in this report which we welcome.
‘But the stark reality is that every day that goes by with these children not getting access to medical cannabis is a day too many.
‘It’s a day of suffering for the child, and unconscionable emotional and financial stress for the parents. We need the detail, and we need it fast.’¬†
There have been some studies suggesting cannabis can help reduce seizures in children with rare forms of epilepsy and some parents claim their children have benefited from illegally-gotten supplies.¬†¬†
The tales of families forking out thousands of pounds to pay for private prescriptions and travelling abroad to bring cannabis oils back for their children were what persuaded the Government to legalise them in November.
But, since then, only two children have managed to get a prescription on the NHS and children suffering from severe, life-threatening seizures have been left wanting.
Medicinal cannabis patient Alfie Dingley is pictured with his parents, Star Trek actor Patrick Stewart, and campaigners in Westminster on their way to hand a petition to 10 Downing Street to plead for Alfie to be allowed medicinal cannabis to treat his epilepsy
NICE’s ruling doesn’t improve those families’ situations because, in avoiding a decision, it place the onus back on hesitant doctors.
Peter Carroll, director of the End Our Pain campaign, said: ‘The fact remains that the families we represent are in urgent need of access to medical cannabis right now.
‘Many are having to raise over ¬£1,500 a month to fund private prescriptions. Others are locked in battles with their local [NHS] trusts.
‘We will be pressing the NHS to clarify the details of their recommendations such as who will pay for the observational trials, who will be able to take part in them and who will administer them.’
The National Institute of Health and Care Excellence (NICE) is a government body which studies evidence of medicines’ effectiveness and costs and weighs up whether or not the NHS should prescribe them.
In its draft guideline today, NICE suggested recommendations on the use of medicinal cannabis products for four conditions:
Vomiting caused by chemotherapy
Yes:¬†Doctors should consider prescribing a cannabis-based drug called nabilone to patients whose chemotherapy is causing difficult-to-control vomiting or nausea.
No decision: NICE said: ‘Because there is no good quality evidence in this population, the committee were unable to make a recommendation on the use of cannabis-based medicinal products for severe treatment-resistant epilepsy’.
Muscle spasticity (stiffness) caused by multiple sclerosis
No: Sativex, a THC-containing cannabis oil should not be given to patients with multiple sclerosis because ‘it is not a cost-effective treatment at its list price’. Other cannabis medicines should not be offered to MS patients unless as part of a clinical trial.¬†¬†
No: No THC-containing cannabis medicines should be offered to chronic pain patients unless as part of a clinical trial. The report said: ‘The potential benefits offered were small compared with the high and ongoing costs, and the products were not an effective use of NHS resources’.
In its own report released today, NHS England called for more clinical trials to be done to establish how effective cannabis actually is.
After speaking to doctors around the country it said in a review: ‘The vast majority of the clinicians we spoke to told us that the lack of good quality… data demonstrating adequate safety and clinical-cost effectiveness of [cannabis-based medicines] for all indications is a major hurdle to prescribing.
‘Most clinicians told us that products containing THC would not be prescribed¬†in their trusts, primarily because of the lack of evidence, a lack of knowledge¬†about the products and a lack of long-term safety data.
‘Several clinicians referenced the higher risk of impaired mental health from longer term exposure to THC and the need to proceed with caution.’
The report also recommended a ‘UK-wide paediatric specialist clinical network’ be created to help advise doctors.
NICE’s recommendations are open for consultation until September 5.
Billy Caldwell’s mother Charlotte (pictured together) had seven bottles of cannabis oil confiscated at Heathrow Airport customs, prompting a row over cannabis oil
Cannabis oil was thrust into the limelight when epileptic boy Billy Caldwell’s mother had seven bottles confiscated at Heathrow Airport customs.
The 12-year-old sparked a row over the medicinal status of the oil, prompting the Home Office to step in and grant his mother Charlotte an emergency licence for the product that was calming his seizures, which contained THC.
Billy’s bottles were confiscated on June 11 after Ms Caldwell brought them in from Toronto.
On the back of the cases of Billy and fellow epileptic boy Alfie Dingley, six, Home Secretary Sajid Javid called for a review into medicinal cannabis.
In a major shift of policy, he announced in July that some products containing the drug would be available on prescription in the UK from the autumn.¬†
On the back of today’s change to the law, Ms Caldwell said she wept with joy.
‘For me what started off as a journey which was about the needs of my little boy actually turned into something, proved to be something, a lot bigger,’ she told Sky News.¬†
‘It proved to be the needs of a nation.
‘Medicinal cannabis gave me back my right as a mummy to hope, but the most important thing medicinal cannabis has done is given Billy back his right to life.
‘Only relatively recently did our Government and country really start to appreciate just how many wee children and people of all ages were affected by the difficulties associated with accessing medicinal cannabis.
‘But it became clear it wasn’t just about what was perceived to be a small number of very sick children and that medicinal cannabis could make a life-changing or life-saving difference to more than a million people.’
Although thrilled by the law change, Ms Caldwell hopes regulations will be expanded to allow more people to benefit from cannabis-based treatments.
‘This is new ground for everybody. We did in a few days what successive UK governments failed to do in more than half a century and made medicinal cannabis legal,’ she said.
‘Then, as now, politicians didn’t realise the complexities involved.
‘There’s a wide range of conditions, each of which can only be treated by certain forms of medicinal cannabis.’