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Medical Marijuana? - Page 5 - Carers UK Forum

Medical Marijuana?

For issues specific to caring for someone with mental ill health.
UK hemp farmers " Devastated " after being forced to destroy crop.

Oxfordshire farmers launch campaign against Home Office policy on hemp cultivation.

Two hemp farmers say they have been left devastated after they were forced to destroy 40 acres of the crop – the end product of which can be bought legally in high street shops.

Patrick Gillett and Ali Silk said the Home Office had ordered them to cut down their crop because they were no longer allowed to harvest it for cannabis oil, or CBD.

As they surveyed the Oxfordshire fields where their combine harvester tore up the hemp, the pair remained perplexed over the order to cease production at their cooperative farm.

Gillett and Silk are so incensed over what they believe was an unjust order from the Home Office that they have launched a national campaign to have the policy reversed.

“For three years we operated openly and always kept the Home Office informed over what we were doing,” Gillett said as he lifted one of the remaining stalks scattered around the field.

“It was devastating to have to rip the entire crop up just because the Home Office changed its guidelines. In fact, one of their guidelines is that any cannabis oil extracted from the hemp plant only contains 0.2% of THC [tetrahydrocannabinol, the substance that produces a psychoactive high], which we also stuck by and indeed were upfront with the Home Office. We kept them informed every step of the way when we started this business in 2015.

“It seems like we are being punished for being upfront and honest about what we were doing, when we took the decision to extract cannabis oil solely for medical, wellbeing purposes. Once we got started in 2016 after learning about CBD oil and how it was doing in America … we never hid it.”

Silk, who gave up a job in the City of London this year to pursue her dream of a more eco-friendly, organic lifestyle, said: “We are being banned from producing something organically, something which is also good for the environment by its carbon capture, that is available in shops on any British high street. You can go into health and wellbeing stores and buy CBD oil over the counter yet we can’t produce it here in these fields in England because the Home Office treats hemp like narcotics or firearms.”

Silk estimated that their company, Hempen, would lose about £200,000 as a result of the destroyed crop and while their overall projections for sales over the next few years were as high as £2.4m, she said it would be foreign hemp growers who would reap the benefits.

“Patrick and I worked it out that about £480,000 of our profits over the next few years would be taken away in tax. So that is a massive loss in tax revenue plus the foreign producers we can actually buy from, Swiss hemp farmers, will be the ones to benefit from the Home Office ban,” she said.

As the sun beat down on a slashed and stubbled field, Gillett said: “This is all very strange. No one in the Home Office up until the end of last year ever said to us: ‘Stop what you are doing, this is illegal.’ They allowed us to get started and then after a perfect year – wet spring and hot summer – we had a bumper crop which they made us destroy last Tuesday. It doesn’t make sense.”

A Home Office spokesperson said it did not routinely comment on individual licences. However, it is understood that Hempen never held a Home Office licence.

Silk and Gillett said they sought cooperation from the Home Office and wanted to be fully licensed “because any CBD oil we would produce would have been well within the legal guidelines of 0.2% THC”.

Gillett said Hempen had been in touch with farmers from Yorkshire to the Channel Islands in an attempt to build a national campaign to overturn the Home Office ruling.

“We need to persuade the government to take these decisions away from a department that deals with illegal drugs and guns, and put it in the hands of somewhere like the Department for Environment, Food and Rural Affairs. We need to get them to see the benefits of CBD and hemp in general rather than look upon it as a criminal matter.”
Watchdog declines to back NHS cannabis treatment for epilepsy.

Campaigners dismayed as Nice decides there is not enough evidence to prove it helps.

Medical cannabis cannot be approved for use in children with severe epilepsy on the NHS because there is not enough evidence to prove it helps, a watchdog has ruled.

The decision by the National Institute for Health and Care Excellence (Nice) dismayed campaigners and parents who said their children would suffer as a result.

But they took some hope from a review by NHS England. Like Nice, it said more trials were needed but said the children’s experiences on medicinal cannabis in the UK and abroad should be taken into account as evidence of how well the drug works.

Last year the law was changed so that medicinal cannabis could be prescribed legally after the parents of Alfie Dingley and Billy Caldwell, who both have treatment-resistant epilepsy, publicly defied the authorities to bring cannabis oil into the UK.

But doctors have been reluctant to prescribe cannabis-based medicines in the UK despite the rescheduling of the drug in November because of the lack of clinical trial evidence of its benefits and safety. Nice is calling for more traditional “gold standard” randomised controlled trials, comparing a group of people on medicinal cannabis with a similar group of people on other medication, to answer the crucial questions about safety and efficacy.

At the same time, NHS England published its review of the barriers to access to medicinal cannabis for patients. It agreed more research was needed but, as campaigners have argued, it suggested it should be possible to include evidence from the experiences of children and young adults already taking cannabis-based medicines.

It also recommended a network of children’s doctors to be set up to collect evidence and advice on difficult cases. Many doctors were unwilling to prescribe medicinal cannabis, it said, worried about the possible long-term effects on the brain particularly from longer term exposure to THC, the psychoactive constituent in cannabis responsible for “highs”. THC (delta-9-Tetrahydracannabinol) and CBD (cannabidiol) are the two constituents that have been most investigated for their medicinal value.

Nice also turned down Sativex, a cannabis-based medicine developed for multiple sclerosis, on the grounds that the price was too high. It said the drug was not cost-effective for the NHS and alternatives should be used instead.

Another cannabis-based drug, nabilone, was recommended in the draft guidance as an add-on treatment for adults with chemotherapy-induced nausea and vomiting, but only if other conventional licensed medicines do not work.

Prof Mike Barnes, the chair of the Medical Cannabis Clinicians Society, said Nice was wrong to want to assess medical cannabis on the basis of the same sort of trials used to approve conventional medicines.

Barnes, who is medical director of a chain of private clinics using medicinal cannabis currently advertising to recruit more doctors, said it had “failed to take into account alternative, valid sources of evidence” and he claimed the Nice committee was made up of people with negative views about cannabis. “Those with positive views were excluded from the process,” he said.

On the other hand, he said, NHS England had produced “a positive review that recognises the need for accepting different but valid evidence for the efficacy of cannabis as a medicine”.

Hannah Deacon, whose son Alfie Dingley is one of only two patients with an NHS prescription, said she was extremely disappointed with the Nice decision.

“There are hundreds of thousands of people using cannabis-based medicines across the world and it’s having an enormously positive impact on their health,” she said. “Many countries have legalised medical cannabis industries – America, Canada and other G7 countries – they see the evidence is good enough. The UK is insisting on reinventing the wheel for no reason and the people who are suffering are patients.”

She said she was supporting 20 families who were trying to get prescriptions from UK doctors and who could not afford to pay thousands of pounds to travel to Europe every month to get the medicine illegally.

The MS Society also said it was bitterly disappointed. “Nice’s 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,” said Genevieve Edwards, the society’s director of external affairs.

“MS is relentless, painful and disabling and yet not a single person with MS has benefited from medicinal cannabis being legalised nine months ago. The government and the companies behind Sativex need to make people with MS a priority. Together with Nice, they must get around the table immediately to make Sativex available. This depends on the manufacturers accepting a lower price for the medicine, as right now the cost is entirely unrealistic.”
Jersey grants licence to harvest hemp flowers for CBD oil.

Team of ex-firefighters given go-ahead to legally process crop for cannabidiol extraction.

Jersey has become the first place in the British and Irish Isles to grant a licence for farmers to harvest hemp flowers for cannabis oil.

A former Royal Marine commando and two former colleagues will be the pioneers who process hemp for cannabidiol (CBD) extraction.

The trio hit upon the idea six years ago when they were working as firefighters in Jersey. They had developed a substance called Hempcrete, a fire-resistant sustainable building material made from the woody core of the hemp plant.

They left the service and set up Jersey Hemp, which after three years in business was on Friday given a licence by the Jersey government for using hemp flowers to produce CBD.

David Ryan, Jersey Hemp’s chief executive, said they were delighted to get the licence. “It will allow us to supply products made using CBD with clear British Isles provenance to retailers and direct to the public. The market for CBD products is growing rapidly as it becomes increasingly recognised for its nutritional benefits and for general wellbeing.”

Ryan said the company had been using CBD in some of its products but until Friday they had had to import it from outside the British and Irish Isles.

“The fact that we can produce the oil for ourselves legally here in Jersey will massively reduce our costs now that we don’t have to import CBD anymore,” the ex-soldier said. “We can do it ourselves under one roof and then sell directly into the UK and beyond. It was a no-brainer to get the licence given that we were using CBD oil up until now but from foreign hemp farms.”

Current estimates are that annual sales of CBD products are worth £300m and are expected to rise to just short of £1bn by 2025.

The licence will allow Ryan and his colleagues to produce an estimated 30 to 40 tonnes of dry hemp annually. About 3% to 5% of the yield from their 30-hectare (74-acre) organic hemp farm will be for CBD.

Lyndon Farnham, Jersey’s minister for economic development, tourism, sport and culture, said: “Extracting Jersey-produced CBD will allow the island to take its place in this fast-developing sector, supplying controlled and reliable CBD products with strong British Isles provenance. Jersey has real potential in this area, and the issuing of this licence signals our clear intent to position ourselves as a centre of excellence in CBD production, research, genetics and intellectual property.”

Last month, two hemp farmers in Oxfordshire destroyed 16 hectares of hemp crop because the Home Office said they were no longer allowed to harvest it for CBD oil.

The farmers, Patrick Gillett and Ali Silk, have launched a national campaign to have the decision reversed and to force the Home Office to grant licences to other British farmers who want to cultivate the crop for CBD oil and other extracts. The pair stressed that the CBD oil they extracted from hemp was well within the Home Office’s legal limit of 0.2% THC – tetrahydrocannabinol, the substance that produces a psychoactive high.

Ryan said he sympathised with the farmers who had to destroy their crops.

He said: “We’ve just cut out first hemp flowers today and it’s a great feeling to know we now can make our own oil. We will be harvesting them from now until October.”
" Hundreds " seek private clinics for medical cannabis.

Since its legalisation in November 2018, there have been very few, if any, prescriptions for medical cannabis containing THC on the NHS.

And this has led some patients, with conditions such as epilepsy and MS, to pay up to £800 a month privately.

The government said it sympathised with families "dealing so courageously with challenging conditions".

Cheryl Keen has been trying to get medical cannabis on the NHS for her daughter Charlotte - who has brain damage and epilepsy - but has been refused twice.

And she had been told it was too expensive and she had not yet tried all the other available options, she said.

"Nothing has happened, nothing has changed [since the legalisation]," Ms Keen said.

"It's absolutely disgusting that anyone is having to pay to go private," she added - something she cannot afford to do.

Campaign groups say by not prescribing cannabis medicines with THC, the NHS is limiting treatment options for patients.

A review earlier this month by NHS England, however, highlighted a lack of evidence about the long-term safety and effectiveness of medical cannabis.

NICE said it was unable to make a recommendation about the use of cannabis-based medicines for severe treatment-resistant epilepsy "because there was a lack of clear evidence that these treatments provide any benefits".

And this has led to the introduction of private clinics.

Grow Biotech, which handles about three-quarters of all medical cannabis imported into the UK, said as of July it had received more than 100 requests for private prescriptions - of which about 60 had been fulfilled.

The new London branch of The Medical Cannabis Clinics has not yet opened but said it had 162 patients on its waiting list - with conditions such as epilepsy, Parkinson's, post-traumatic stress disorder (PTSD) and fibromyalgia.

"Everyone can get an appointment to come here but not everyone leaves with a prescription for cannabis," its director, Prof Mike Barnes, said.

"There are some conditions for which there is good evidence for cannabis to be useful, so you'd have to have one of those conditions - like pain, anxiety, or nausea and sickness in chemotherapy or epilepsy."

The clinic says consultations are carried out to ensure prospective patients have tried all reasonable licensed medication for their conditions and reached "the end of the road for treatment".

Prof Barnes described the service as a "lifeline for patients in need".

Prescriptions cost between £600 and £800 a month but Prof Mike Barnes rejected any suggestion the clinic was exploiting patients.

"This is the only way patients who are in significant need can get access to this medicine," he said.

Government " Failing patients "

A report last month by the Health and Social Care Committee said the hopes of patients and families had been unfairly raised when doctors were allowed to prescribe cannabis.

Labour MP Ben Bradshaw, who sits on the committee, told BBC News the government was "failing patients".

"If anything [since its legalisation], it's become more difficult for people to obtain it," he said.

"[The government] now has to put this right, by delivering on the promises that it's made to the patients."

The Department of Health said in a statement: "To support doctors prescribing these products, we have asked the National Institute of Health and Care Excellence (NICE) to develop additional clinical guidelines and are working with Health Education England to provide additional training.

"The decision to prescribe unlicensed cannabis-based products for medicinal use is a clinical decision for specialist hospital doctors, made with patients and their families, taking into account clinical guidance."
Cannabis-based health products are going mainstream – do they work ?

A component in cannabis called CBD is claimed to help everything from Alzheimer's to anxiety. Despite a boom in sales, there's little evidence supporting the claims.

“IT WILL cure, eliminate or definitely help any disease,” an assistant in a shop just around the corner from New Scientist’s office in London tells me. Although these extraordinary claims aren’t made on the product’s packaging, the substance it contains is quickly gaining a reputation among consumers as a cure-all. Pain, anxiety, depression, cancer, psoriasis, Alzheimer’s, irritable bowel syndrome – you name it, someone somewhere is saying this substance will help.

This apparently miraculous compound is cannabidiol, better known as CBD, a component of cannabis. Growing health claims coupled with a relaxing of laws around the sale of CBD-containing products has seeded a surge in interest.

Despite the willingness of some to tout CBD’s curative powers, there is limited evidence to back up these bold health promises. “The range of claims is actually quite startling, and I don’t know whether to be worried or amused,” says Harry Sumnall at Liverpool John Moores University, UK.

Cannabis has long been suspected of improving health by those who use it. Since November 2018, UK doctors have been allowed to prescribe it in special cases (see “Medicinal cannabis”, below). The change in legalisation came after high-profile campaigning, including from parents whose children have a severe form of epilepsy that seems to respond to cannabis products. A growing number of US states have legalised the plant for medicinal and recreational use too.

The chemical in cannabis that gets people high is called tetrahydrocannabinol (THC). Products with more than 0.3 per cent THC are illegal in the US and products with any THC at all are illegal in the UK. But CBD is different – you do not even need a prescription to legally buy products containing it.

We don’t know all of CBD’s effects, but some claim that it can give the touted health benefits of cannabis without the high. As a result, CBD is rapidly becoming big business. The US market for CBD products in 2018 was estimated at nearly $1.5 billion. There are 1.3 million people using CBD in the UK, where the market is expected to be worth nearly £1 billion by 2025.

The recent explosion of CBD products in the US is partly due to the passing of a piece of legislation known as the Farm Bill in 2018. This legalised the growing of hemp and the selling of cannabis products with very low THC levels.

Companies have heavily marketed the supposed health benefits of these products and they have spread to the UK.

As a result, CBD can now be found in everything from face creams to shampoos and pet foods, sold in dedicated shops and health food stores across the UK, US and elsewhere. It is also a food trend, with bars and restaurants selling CBD-infused drinks, meals and desserts.

How much do we really know about CBD? One salesperson told me the products can work on so many different disorders because CBD will “regulate the cells” of my body. The evidence to support claims like this is lacking, to say the least.

Most of the early research into the effects of cannabis and its components focused on negative effects, says Ziva Cooper at the UCLA Cannabis Research Initiative in Los Angeles.

Lack of evidence

More recently, some studies have hinted that CBD and other chemicals derived from cannabis might be useful for treating chronic pain and other conditions. For example, CBD seems to improve some symptoms of schizophrenia in people who are already taking other medication, and trials based on giving a single dose of CBD suggest that it might help with anxiety, says Cooper.

But there is very little of the gold standard of evidence: randomised clinical trials comparing CBD to a placebo. Only Epidiolex, a drug with CBD as an active ingredient for children with severe epilepsy, has been approved for medical use in the US. It is currently being licensed for use in the UK.

As the drug has only been around for two years, the long-term effects are unknown, says Barry Gidal at the University of Wisconsin. “So far, nothing has cropped up, but it’s a new drug,” he says. “We’re going to have to watch it for a while and be vigilant.”

From the drug trial, CBD appears to be safe and isn’t addictive, but the UK’s National Health Service lists drowsiness, diarrhoea, rashes and an increased risk of infections as potential side effects.

There is also a lack of evidence on appropriate dosage, although salespeople are often willing to offer advice on how much of each product to use.

“70% of CBD products tested were contaminated with heavy metals”

“It’s all made-up stuff,” says Gidal. No one knows how much CBD will affect any one individual, or whether taking it in the form of a pill, spray or tea makes any difference.

On top of that, it isn’t clear how much CBD is in a product. When the UK Centre for Medicinal Cannabis, which represents the industry, sent 30 shop-bought CBD products for lab testing, it found that one item – a 30 millilitre bottle selling for £90 – contained no CBD whatsoever. Almost half the products had measurable levels of THC, making them illegal. And one had enough ethanol to be legally considered an alcoholic beverage.

“We don’t actually know what’s in many of the products that are being sold,” says Sumnall, as there is no specific body checking CBD products. “Because the CBD market is not regulated properly, we don’t really have any control over quality or content,” he says.

Several factors can influence how much CBD is in a product extracted from a cannabis plant. Levels can vary between batches from the same grower. There are only a couple of firms worldwide that supply standardised products certified for medical use.

Worse, CBD products could also contain potentially harmful heavy metals and pesticides. Cannabis plants are especially good at sucking these up from soil. Tests of 240 CBD products in the US suggested that 70 per cent were contaminated with heavy metals, as well as pesticides and toxic mould, according to a report from media outlet CBS Austin in May. Other media investigations have made similar findings, although the retailers dispute the results.

Another worry is that those who are unwell might be getting medical advice and treatment from people who aren’t qualified to give it. “The vernacular term in the US is the ‘budtender’,” says Gidal. “Who knows what educational background they have and they are making important medical decisions for you about the dose and what preparation you ought to be taking.”

I was tempted to try CBD to see what all the fuss is about. But with 10 CBD gummies costing £20, the price alone was enough to put me off. Given that I can’t be sure what is in the products – let alone their effects on my body and brain – I have decided I would rather not put my health in the hands of the budtender.

Medicinal cannabis

As of 1 November last year, doctors in the UK have been able to prescribe medical cannabis. But now they also face advice not to.

Draft guidance released last week by the National Institute for Health and Care Excellence states that cannabis products shouldn’t be offered to people with chronic pain or muscle spasticity, unless as part of a trial. It also says there isn’t enough evidence that these products work in severe epilepsy.

The guidelines, which are open to comments, will come as a disappointment to individuals who are already struggling to get a prescription for medical cannabis products. The UK produces more legal cannabis than any other country, but medical cannabis is still hard to come by. Some National Health Service trusts won’t pay for cannabis prescriptions, so some people may obtain them from private clinics.

The US landscape is even messier. At the federal level, cannabis that contains less than 0.3 per cent of the psychoactive component tetrahydrocannabinol (THC) is legal. Plants with higher levels are not.

Still, whether or not you can legally buy cannabis varies from state to state. Some have legalised medical cannabis; others have approved the drug for recreational use. Again, the list of conditions that can be used as a legitimate reason to buy medical cannabis varies by state.

“When states passed laws, those laws weren’t based on evidence – they were passed for political reasons,” says Ziva Cooper at the UCLA Cannabis Research Initiative in Los Angeles.
Medical cannabis costs family £4,000 a month to help teenager.

An epileptic teenager's family are paying thousands of pounds a month for privately prescribed medical cannabis because they cannot get it on the NHS.

The law changed last November so specialist doctors could offer cannabis-based medication.

But there have only been a handful of prescriptions because of concerns about safety and effectiveness.

Bailey Williams' parents, from Cardiff, said he has had fewer seizures since he has started taking the drugs.

But they said his next monthly batch is set to cost £4,000 and they are worried they will not be able to afford it long-term.

The 17-year-old's mum, Rachel Rankmore, said: "The last few months, he has started to speak, interact in conversation, play with his toys.

"He has a reduction in seizures, so he has a better quality of life.

"We'd got nothing left to lose, we just needed to try it."

Bailey has a rare form of epilepsy called Lennox-Gastaut Syndrome and he can have multiple seizures every day.

The cannabis oil he has been prescribed by a private paediatric neurologist in London is called Bedrolite.

That contains CBD and a small amount of THC - the psychoactive compound of cannabis.

Bailey's private prescription, which he was given in June, is specially imported from the Netherlands.

His father, Craig Williams, said: "If you were to purchase it direct from Holland, it's £150 per bottle.

"Because the UK have got to import it, you've got your importation fees, you've then got your pharmacy costs on top, so that same £150 bottle becomes £500, which Bailey needs every two-and-a-half to three days".

The family expect Bailey's October prescription to cost almost £4,000 as the dose has increased.

The law on medicinal cannabis

Until last year, medical cannabis with THC was illegal in the UK.

On 1 November, all cannabis medicines were moved from Schedule 1 of the Misuse of Drugs Regulations to Schedule 2, to recognise there is evidence of benefit for some.

This month, the body that advises on best treatments, the National Institute for Health and Care Excellence (NICE) chose not to recommend the wider use of medical cannabis, because of a lack of clinical evidence. It is consulting on those findings and will publish final guidance in the autumn.

An NHS England review said the health service must support studies to gather evidence "as soon as possible".

The National Institute for Health Research is inviting bids for funding to carry out research into the medicinal uses of cannabis.

It means many people are turning to private clinics for medical cannabis.

The family has raised about £15,000 to fund the drugs.

Bailey's mum said they could not "keep effectively begging for money".

Cardiff and Vale health board said it acted in "the best interests" of patients and put them at the centre of "everything".

A spokesman said: "We have discussed the concerns the family have raised about the management of his condition.

"We will continue to work with the family."

The Welsh Government said no cannabis products had passed tests of the Medicines and Healthcare products Regulatory Agency.

A spokesman said: "Cannabis products may therefore pose unquantified and potentially greater risks to patients than licensed medicines."

The Department of Health and Social Care said there was "a clear consensus on the need for more clinical evidence."

It said the decision to prescribe "must remain a clinical one, made with patients and their families".

A spokesman said: "We will now carefully consider the NHS's findings, alongside the recently published Health and Social Care Committee report, to identify how we can better support clinicians in prescribing cannabis-based medicinal products where clinically appropriate."
Mother sells house to buy daughter's medical cannabis.

Elaine Levy says she has spent £30k on private supply despite prescriptions being made legal.

The mother of a severely epileptic woman has put her house up for sale after spending her family’s savings on private prescriptions for medical cannabis.

Elaine Levy, the mother of 25-year-old Fallon, who has Lennox–Gastaut syndrome, said she has been forced to sell up in an attempt to fund her daughter’s ongoing care after spending more than £30,000.

“We just can’t do it any more,” she said. “It’s been a year and three months but we’ve got less than a month’s medicine left and we’re now at the end of the road. Why am I having to beg when it was made legal last November?”

She said her daughter no longer needed a wheelchair after using full extract cannabis oil, after years of taking sedatives. “Her IQ has gone up and she now tells me where to go, it’s not a cure but the result is phenomenal.”

For patients with treatment-resistant epilepsy, the medicine is potentially life-saving but is not widely available on the NHS, despite doctors in England, Scotland and Wales being given permission to prescribe it last year. The growing financial burden has led families to fundraise and sell their possessions.

On Thursday nine families, supported by the campaign group End Our Pain, invoiced the Department of Health and Social Care (DHSC) for the £231,000 they have cumulatively spent on prescriptions. They did so after holding a silent vigil outside the department’s headquarters.

They then walked down Whitehall and delivered letters – including one signed by more than 100 MPs – to the prime minister urging him to personally intervene.

Outside Downing Street, parents chanted “medical cannabis stops our children’s seizures” and said they had saved the NHS money at their own cost.

“By us not calling ambulances, having stays in hospitals and being prescribed anti-seizure medicines, we must have collectively saved the health service thousands,” said Craig Williams, the father of 17-year-old Bailey, who has intractable epilepsy but recently caught a ball for the first time after courses of full extract cannabis oil reduced his seizures from 100 a day to one.

“But we still can’t access it without paying thousands ourselves. When they legalised it last year they gave us hope, but the system has failed us.”

The health service has not issued a single prescription for full extract cannabis oil since the Home Office acted to resolve several high-profile cases last year, according to campaigners. However, the medicines are available privately and there have been at least 100 prescriptions, which cost up to £4,000 per month.

A watchdog ruled last month there was not yet enough evidence to prove medical cannabis can help those with severe epilepsy, and there have been calls for observational trials to help establish its widely reported benefits.

The Liberal Democrat leader, Jo Swinson, said forcing families with sick children into a financially crippling situation was “appalling”.

“The government needs to work with the NHS need to find a way to get these children this life-transforming medicine not in weeks and months, but immediately.”

A DHSC spokesperson said: “Government is urgently working with the health system, industry and researchers to improve the evidence base to provide clinicians with further support and guidance on prescribing where clinically appropriate.”
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