Medical cannabis: Why are doctors still not prescribing it?

Medical cannabis: Why are doctors still not prescribing it?

More than a year since it was legalised, patients are still being refused the drug by the NHS

 Lucy Stafford, who uses privately prescribed medicinal cannabis to alleviate symptoms of Ehlers-Danlos syndrome, at home in Cambridge. Photograph: Si Barber/The Observer

Like most teenagers, Lucy Stafford has plans. Normal plans. The plans anyone makes as they progress into adulthood. She wants to complete her degree, spend time with friends and family, and explore her independence.

But, unlike most teenagers, the 19-year-old from Cambridge has a rare and debilitating medical condition – Ehlers Danlos syndrome – that affects her connective tissue, causing her limbs to dislocate and muscles to spasm. When the Observer interviewed her last week she had dislocated her shoulder that morning, a common occurrence.

And yet she was disarmingly, joyously upbeat.

The reason? She is one of the very few people in the UK to have been issued with a private prescription for medical cannabis since the drug was legalised a year ago last Friday, something that she and her doctor claim has transformed her life.

Having suffered lengthy bouts of chronic pain since she was 10, Stafford has spent most of her teenage years on strong opiates, most recently fentanyl, the synthetic analgesic 50 times more potent than heroin.

Down the years, she has had numerous operations and treatments for lower-back pain, including steroid injections, and has been prescribed courses of the powerful painkiller tramadol, to which she became physically dependent. Her vomiting was so severe she was admitted to hospital for intravenous rehydration. She has endured multiple sepsis and urinary tract infections and for much of her life has needed a catheter. Long stays in hospital have been common.

“Coming off fentanyl was the best thing that ever happened to me,” said Stafford, who since she started taking medical cannabis has begun studying with the Open University. “This prescription saved my life.”

She talked about dislocating her shoulder as if she had stubbed her toe.

“Before cannabis I would have had to take a large amount of opiates. I would have been … crying in pain for most of it, whereas now I am able to function. Sure I need to rest and take it easy but it has made living with my condition manageable and lets me function and have a life, something I never expected to have.”

It was when attempts to surgically fix her constantly dislocating jaw failed, causing it to go into spasm for two months, that Stafford’s NHS pain-management specialist tried to prescribe her the cannabis-based medicine Sativex, normally used to treat people with multiple sclerosis.

“It was an act of desperation, they couldn’t increase my fentanyl any more,” Stafford said.

Her local NHS Trust refused to pay for the medicine, so she tried self-medicating with illegal cannabis. Worried about being arrested, she paid for a private consultation and is currently one of only about 100 people in the UK to have a private prescription for medical cannabis.

Experimenting with different strains of cannabis, oils and vapes has produced life-changing results.

When her joints dislocate, Stafford claims that vaporising cannabis reduces her pain levels from a 10 to four within minutes. And she sleeps. Properly. For the first time in years.

“Chronic pain means you don’t sleep, you can’t meet friends, be with your family, you can’t think, you don’t have your brain and then when you add in opiates you become zombified. A year ago I was a very, very different person. On my medical notes my doctor described me as having transformed. After so many years of being on opiates and in uncontrollable pain, I accepted that I was going to be in so much pain for ever. I had lost so much of myself. I had no ambition for what I would do. All I did was exist.”

She speaks with almost childish wonder at the change in her fortunes.

“I feel like I’ve become myself for the first time in my life. It’s absolutely unbelievable. I’m at university, I’m living my life, I’m seeing friends and just doing all the things that I hoped I would do. If you had told me my life would have been like this a year ago I would have laughed.”

But a huge problem looms on the horizon: Stafford’s new life is financially unsustainable. She paid £250 for a private pain consultant to write her the prescription for medical cannabis, a significant sum for a student. But this is nothing compared with the £1,500 a month she was initially paying for her various cannabis products.

Since then the price she pays for her medicines and oils has come down to £800 a month but it is still a huge amount to find.

She is outraged at having to pay so much money for something that she believes should be provided on the NHS.

“The law changed a year ago and you would expect some patients would by now have access [to medicinal cannabis on the NHS] but literally nobody has, unless they are willing to go into debt for it. It’s disgusting.”

When the law was changed 12 months ago, scientists, researchers and campaigners hailed it as a “landmark victory”. The then home secretary, Sajid Javid, said: “We have now delivered on our promises … we will work with the NHS to help support specialists in making the right prescribing decisions.”

 Future generations will look back in disbelief at our callousness

Baroness Meacher, campaigner
But, in Stafford’s summation: “Our hopes have been dashed, nothing has happened.”

Department of Health figures confirm that in the first eight months since medical cannabis was legalised, just 12 prescriptions were issued for unlicensed cannabis medicines –those other than Sativex, or Nabilone, which is given to patients undergoing chemotherapy, both of which have been subject to randomised control trials.

“The people who benefit the most from the new regulations are those who can afford private healthcare,” said Alexandra Curley, head of insights at Prohibition Partners, a consultancy set up to “advance the global cannabis industry”. “Restrictions and lack of availability is creating a two-tier system of access for patients.”

The alternative is to buy illicit cannabis. A cottage industry has sprung up among growers producing not-for-profit medicine-grade cannabis to help treat themselves and others with health problems.

“Severely disabled patients who rely on their medical cannabis live in daily fear of arrest for growing their own medicine,” said Baroness Meacher, chair of the all-party parliamentary group for drug policy reform. “Is it right for patients to be criminalised for looking after their health and saving the NHS huge sums? Future generations will look back in disbelief at our callousness.”

The claim that medical cannabis will save the NHS a fortune is beguiling. Stafford estimates she was costing the NHS £150 a day on specialist nutrition, £1,000 a month on medication, £188 a month on catheters, and this is before hospital admissions and nursing costs are factored in.

But most NHS doctors are still reluctant to write prescriptions for medical cannabis. Many are wary of the hyperbolic claims being made for it.

“The law was changed but there’s been no education, no trials,” Stafford said. “Doctors have been taught for decades that cannabis is a dangerous recreational drug. There’s been no effort to try to increase understanding of medical cannabis – it’s been completely lost.”

In August the National Institute for Health and Care Excellence (Nice) published an interim review that said medical cannabis should not be prescribed for a range of conditions including chronic pain.

Nice said there was a need for more research into the use of cannabis-based medical products (CBMP). It said “current research is limited and of low quality”, and added that clinical trials had shown a high level of adverse responses.

“There is a clear need for more evidence to support prescribing and funding decisions, and we are working hard with the health system, industry and researchers to improve the knowledge base,” a Department of Health spokesman said.

Now, in an attempt to break the deadlock, a group of scientists – backed by the Royal College of Psychiatrists – will this Thursday announce that they are to conduct Europe’s largest study into the effects of medical cannabis. About 20,000 patients will receive heavily subsidised products to help treat a range of disorders including epilepsy, chronic pain, multiple sclerosis, post traumatic stress disorder and other chronic conditions.

That the UK currently lacks this knowledge base seems perverse: it is the largest producer of medical cannabis in the world. According to the United Nations International Narcotics Control Board, in 2016 the UK produced 44% of global cannabis plants intended for medicine and scientific research. Much of this is exported to other countries who turn it into medicinal products, which the UK subjects to hefty import restrictions.

Those firms wanting to bring products into the UK must apply to the Home Office for a licence. Under the current system, it takes eight to 10 weeks for a product to be made available to patients after they have been issued with a prescription, with the result that the prescriptions often expire before the drug can be sourced.

Tellingly, the first shipment of medical cannabis did not arrive – from the Netherlands – until February 2019, four months after it was legalised.

Campaigners claim the time lag limits the supply of medicinal cannabis into the UK, forcing patients into taking a break in their medication. This is a problem: smooth supply is critical during the titration phase of taking a medicinal cannabis product – when the concentration a patient requires is established.

Unsurprisingly, the CBMP industry is not beating a path to the UK’s door: the market is just too small, too inaccessible compared to other European countries such as Germany where 142,000 prescriptions were issued in 2018. Companies such as Cannamedical, which profitably sells medicinal cannabis to pharmacies in Germany for €10 (£8.60) a gram, must sell it for £30 a gram in the UK to achieve a similar profit margin.

“The system isn’t working and is failing patients who need it,” said Marc Davis, an investor and expert on the cannabis market. “This vicious cycle not only puts patients at risk but also spurs crime and impacts the economy in terms of lost tax revenue.”

Currently Stafford can obtain products made by only one company in the Netherlands. She is waiting on an order for products from Canada to be approved.

“There are lots of different flowers and oils out there,” she said. “Patients need access to a wide variety, but at the moment, due to all the restrictions on importing, it makes it so expensive and offers such limited choice.”

There are signs things are changing, albeit slowly. In the summer Ignite, the company founded by the social media celebrity Dan Bilzerian, known for hosting parties with scantily clad models, launched the UK’s first major campaign promoting cannabidiol, better known as CBD, the non-psychoactive component of cannabis which, it is claimed, improves mood and concentration.

But there remains a sense that the UK is lagging behind.

“Almost a year ago hopes were high after the law was changed, and yet implementation has been characterised by dither and delay,” said Tonia Antoniazzi MP, co-chair of the all- party parliamentary group on medical cannabis under prescription.

The law change followed several high-profile cases involving young children, notably eight-year-old Alfie Dingley, whose mother claimed medicinal cannabis helped combat his severe epilepsy.

But in September, 10 families marched on Downing Street protesting that not one of them had received an NHS prescription for such medicines despite promises to the contrary from health secretary Matt Hancock.

“It has been a frustrating year for families like ours,” said Dingley’s mother, Hannah Deacon. “Even after our high-profile case, my son still can’t access all of the medicinal cannabis products that would truly help his intractable epilepsy. That situation needs to change. For us and for thousands of others whose cases aren’t as well known as ours.”

However, some fear that emotive cases are swaying a debate that must be led by science, not the heart. England’s former chief medical officer, Dame Sally Davies, said earlier this year: “I think we have opened a Pandora’s box and there is a belief that it works for many conditions. I do have concerns about safety.”

The levels of THC – the psychoactive element in cannabis – in Stafford’s cannabis products touch 22%, which is higher than most skunk sold on the streets.

But Stafford said it was wrong to make the comparison. “When it’s in place of fentanyl, it doesn’t have the effect for me that it would probably have on a recreational user. It relaxes my body and makes my body bearable.”

Fears that medical cannabis prescriptions will be exploited to circumvent existing drug laws are also misplaced, according to Dr Rebecca Moore, a former consultant psychiatrist with the NHS who now works at the Medical Cannabis Clinic in London. She said desperate patients were travelling up to 400 miles for a consultation. “This is a last resort for patients who have tried everything else.”

Stafford is a volunteer at the United Patients Alliance which campaigns for medical cannabis to be made available on the NHS. She says that every day its Facebook discussion page carries posts from people saying that taking the drug has helped them get out of bed for the first time in months or to start exercising.

“We had a video from someone with Tourette’s and he filmed himself before and after medicating and it’s such an unbelievable difference,” Stafford said.

Prohibition Partners’ Curley suggested that 1% of the UK population could be medical cannabis patients by 2028. “Data from the British Medical Journal on patient numbers for 52 conditions potentially treatable with medical cannabis indicate an estimated patient base of over 4 million people,” she said. “Those numbers cannot and should not be ignored.”

Her consultancy predicts that the medical cannabis market in the UK, currently worth just £10m, could balloon to £1bn by 2024 – if NHS doctors start to emulate their counterparts in countries such as Germany and Canada and start prescribing.

But until then, Lucy Stafford, like many others, faces a dilemma: rack up debt or turn criminal. A return to fentanyl, though, is not an option.

“I was on opiates for seven years of my life. I could never imagine going back on to them now. The thought of that absolutely terrifies me.”

Who would it help?

The number of people in the UK suffering from conditions that are said to be alleviated by medical cannabis

Anxiety and depression One in four people (source: Mental Health Foundation)

Cancer 360,000 new cases each year (Cancer Research)

Crohn’s disease 146,000 (Crohn’s & Colitis UK)

Dementia (including Alzheimer’s) 850,000 (Alzheimer’s Society)

Epilepsy More than 500,000

Fibromyalgia 1.5-2 million

(Fibromyalgia Action UK)

HIV/Aids 100,000

(National Aids Trust)

Parkinson’s 145,000 (Parkinson’s UK)

Rheumatoid arthritis

400,000 (National Rheumatoid Arthritis Society)

 

https://www.theguardian.com/society/2019/nov/03/medical-cannabis-patients-refused-drug-nhs-legalised

Medical cannabis trial will target 20,000 UK patients

Medical cannabis trial will target 20,000 UK patients

Project backed by Royal College of Psychiatrists aims to be largest on drug’s use in Europe

Up to 20,000 patients in the UK are to be given medical cannabis over a two-year period in an initiative that aims to create the largest body of evidence on the drug in Europe.

The move, to be unveiled on Thursday, is backed by one of the UK’s leading medical bodies and it is hoped it will persuade the NHS to prescribe the drug for a range of conditions.

Although medical cannabis was legalised in the UK a year ago, it remains unobtainable for many patients, according to campaigners.

“Medical cannabis is still out of reach for far too many,” said Professor David Nutt from the independent scientific body Drug Science, the organisation behind the launch of Project Twenty21, which will see 20,000 patients supplied with subsidised cannabis products by the end of 2021.

“Patients are left untreated, in significant debt from the cost of private prescriptions, or criminalised as they are forced to turn to the black market. They don’t deserve any of this, and the situation with prescribing desperately needs to change.”

The project – which will be launched at, and is backed by, the Royal College of Psychiatrists (RCP) – aims to create the largest body of evidence on medical cannabis in Europe, to convince policymakers that the drug should be made as widely available, and affordable, as other approved prescription medications.

Since legalisation, doctors have been wary about prescribing the drug to a lack of evidence about its efficacy. There are also fears it is being over-hyped by a nascent industry focused on maximising profit.

Project Twenty21 will study the drug’s effects on patients who have either chronic pain, epilepsy, multiple sclerosis, post-traumatic stress disorder, Tourette’s syndrome, anxiety disorder or who have had a history of substance misuse.

“The RCP hopes this project will address the paucity of evidence for the use of cannabis-based medicinal products in all health settings, including mental health,” said Professor Wendy Burn, the RCP president.

“We hope that this project, along with other research such as more much-needed randomised control trials, will continue to build the evidence on CBMPs”.

It is estimated that there as many as 28 million people in the UK will at some stage, suffer from chronic pain.

“Data from several countries reveal that medical cannabis have benefited several thousands of patients,” said Dr Arun Bhaskar, president of the British Pain Society. “There are more than eight million people with disabling chronic pain in the UK and medical cannabis is still out of reach for them. Trials like Project Twenty21 could provide evidence for safely and effectively prescribing these medicines that has the potential to provide pain relief and other life-changing benefits for some of these patients.”

 

https://www.theguardian.com/society/2019/nov/03/medical-cannabis-uk-clinical-trial-patients-nhs

UK drugs policy is ‘going backwards’, says former Westminster adviser

UK drugs policy is ‘going backwards’, says former Westminster adviser

 

 

UK drugs policy has “done nothing but go backwards” in the last decade, according to a former senior Westminster adviser.

 

Professor David Nutt was dismissed from his post as a chair of the Advisory Council on the Misuse of Drugs by then-home secretary Alan Johnson after claiming that alcohol and tobacco were more harmful than illegal substances like cannabis and LSD.

Ten years later, he says the Misuse of Drugs Act is “failing in its legal duty”.

 

The comments came in a talk at King’s College, London, as the Scottish Affairs Committee prepares to publish its delayed report on problem drug use in Scotland.

Drug laws remain reserved to Westminster, and despite cross-party calls for a new approach to tackle Scotland’s rising drug deaths, the UK Government has declined to make changes.

This includes any moves to amend legislation for the creation of a legal drugs consumption room in Glasgow, which has in the past year experienced some of the country’s worst drug-related problems.

 

Almost 1200 people suffered drug-related deaths in Scotland last year, with fatalities concentrated in the Greater Glasgow, Lothian,

Lanarkshire and Tayside health board areas.

The level is almost three times that of the UK as a whole and higher than that of any other EU country.

 

Nutt, who backs safe injection rooms, blamed successive UK governments for a “litany of failure” and said “very little has changed” since 2010 research named alcohol as the “most harmful drug in the UK”.

And he warned it was “very likely” the UK will soon endure a rise in deaths from fentanyl, a powerful opioid used as pain medication which is sometimes mixed with other drugs like ecstasy or sold instead of this by dealers.

 

A report on the Health and Social Care Committee’s inquiry published last week – to which Nutt gave evidence – found the country’s position on drugs was “clearly failing” and called for a “radical new approach”.

Nutt said decriminalisation, which is favoured by the SNP, “would be a good start” and called on the “two major parties” at Westminster to “grow up” and talk seriously about drugs.

 

Last week, the UK Government said it “has no plans to decriminalise drug possession”, saying this “would not eliminate the crime” or address the harms.

Yesterday a spokeswoman stated: “We are committed to reducing the use of illegal drugs and the harms they cause and the Home Office has commissioned a major independent review to examine these issues.”

 

Meanwhile, Nikki Holland, director of investigations at the National Crime Agency, says “phenomenal” amounts of illegal substances are being smuggled into the UK, despite massive seizures by officials. This includes a near-1.3 tonnes heroin haul in August.

Holland said: “If we double the size of the agency, we might get nearer to choking that supply.”

 

https://www.thenational.scot/news/18007450.uk-drugs-policy-going-backwards-says-former-westminster-adviser/

Sadiq Khan: Time for cannabis rethink to cut violent crime

Sadiq Khan: Time for cannabis rethink to cut violent crime

 

Sadiq Khan today called for a rethink on cannabis laws and policing amid concern about the links between drugs and violent crime.

The Mayor softened his stance on the class B drug by calling for an “evidence-based conversation” about legislation and enforcement.

He said the Evening Standard’s investigation into reforming the laws on cannabis had shown how attitudes were changing. It found that 63 per cent of Londoners back its legalisation for adult recreational use.

Mr Khan, who last year said he was opposed to relaxing the rules on recreational use, told the Standard: “The time is right for our society to have an evidence-based conversation about cannabis — about the law, how it is enforced, and how we support those struggling with addiction. 

“It goes without saying that I will continue to support the police to enforce the law as it stands, but all Londoners will benefit if we can start a conversation that leads to a reduction in violent crime.”

The number of offences recorded by the Metropolitan Police for cannabis possession has been declining every year to 28,358 in 2017-18, and to 672 in the same year for possession with intent to supply. UK law on cannabis provides for prison sentences of up to five years for possession and up to 14 years for supply and production.

Recreational use is legal in Canada, Uruguay and in 11 US states, and is decriminalised in a further 15. 

Last week a report from MPs on the Commons health committee called for a government consultation on decriminalising drug possession for personal use.

It said there had been a fall in drug use overall, especially among young adults, and that cannabis use was falling while cocaine use was rising. The vast majority of drug deaths involve opiates.

Met commissioner Dame Cressida Dick has said that cannabis possession is “not the highest priority crime”. The Met uses a “three strikes” rule of a warning, then a fine, with arrest a last resort.

 

Mr Khan, who has admitted smoking cannabis during a trip to Amsterdam “a long, long time ago”, said there was a “clear link” between the rise in the market for drugs and the rise in violent crime across the UK.

A City Hall report last month revealed that more than 4,000 Londoners, some as young as 11, had been drawn into “county lines” drug-dealing. The National Crime Agency says heroin and crack cocaine are the most common drugs supplied by county lines gangs. 

Liberal Democrat mayoral candidate Siobhan Benita has called for cannabis to be legalised. Mr Khan’s move could be seen as a way to dissuade liberal-minded Londoners from voting for her in next May’s mayoral elections.

Mr Khan said he strongly supported calls to make cannabis available for medicinal use and said the Government needed to move much quicker to relax the “overly strict laws” in this area. He added: “As the Evening Standard’s campaign on this issue has demonstrated, attitudes are slowly but surely changing in Britain.”

https://www.standard.co.uk/news/london/sadiq-khan-time-for-cannabis-rethink-to-cut-violent-crime-a4276306.html

 

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