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Medical Marijuana? - Page 4 - Carers UK Forum

Medical Marijuana?

For issues specific to caring for someone with mental ill health.
Cannabis oil mum : " I'm forced to live abroad to save my child. "


A mother who took her severely ill child to the Netherlands for cannabis oil treatment says she is now trapped living abroad.

Julie Galloway left Scotland with seven-year-old Alexa, who has epilepsy and a rare neurological condition, almost a year ago to live with relatives in Rotterdam.

She says she is still living out of a suitcase and her savings are almost gone - but she fears that returning home without the medication would put her daughter's life in danger.

Julie, from Cumbernauld in North Lanarkshire, said: "I feel like a refugee forced to live abroad to save my child.

"I have no other option. I miss my family. My mother, who has Alzheimer's, and my sister are in Scotland - but my child comes first.

"I want to come home but I am terrified the medication will be confiscated. I am struggling to pay for it and I know this can't go on forever."

A version of cannabis oil has been approved for use in the UK, but doctors have been unwilling to prescribe it for Alexa.

Medicinal cannabis is currently unlicensed so doctors can prescribe it only if a patient has a need that can't be met by licensed medicines.

Julie, 49, told the BBC Scotland news website that she decided to travel to the Netherlands last July to seek the treatment after watching her daughter deteriorate for six months.

She explained: "Alexa was diagnosed with epilepsy at the age of five. She also suffers from a rare neurological condition called Rett Syndrome.

"She was having seizures at home but then ended up in hospital."

Julie said that Alexa deteriorated "very quickly" on medication which was causing serious side-effects.

"I witnessed her lose basic skills - such as standing and drinking from a cup as well as walking - within weeks of being in hospital," she said.

"I knew the medication wasn't working but doctors kept her on it anyway despite her still having daily seizures."

Alexa was frequently taking rescue medication which was designed for occasional use. This suppressed her breathing and caused respiratory distress.

She suffered more than 850 grand mal seizures last year and spent seven months in hospital.

Julie did some research and heard that cannabis oil was being used by other children with epilepsy and Rett Syndrome.

" Showing interest in the world again "

However, she was unable to find a British doctor who could prescribe medical cannabis oil, so Julie and Alexa left for the Netherlands, where they are staying with family.

Alexa was taken to hospital after suffering a cluster of seizures. A doctor stopped her medication last November and prescribed cannabis oil.

According to Julie, within a week Alexa "started to show interest in the world again".

Now, living out of a suitcase in Rotterdam, Julie is trying to fundraise to afford the cannabis medication.

And she is calling for the NHS in Scotland to give cannabis prescriptions to children who need them.

She said: "Before, Alexa was having seizures of 20 minutes, where she needed oxygen and turned blue, needed hospitalised, and I thought she might die.

"Now they last about 20 seconds. They have dropped in frequency by about 60-70%.

"I feel like I can almost breathe again."

She added: "She has been on it for few months now and is slowly healing. She can drink from a cup again, and can stand and take a few steps.

"Cannabis is not a miracle cure, but it is certainly giving my child and me a better quality of life.

"We have some kind of normality when before we were walking on eggshells just waiting for the next seizure."

However, Julie said her savings were almost gone after paying £400 a month for the treatment.

She cannot work because she is caring full-time for Alexa, and knows she will be unable to afford the medication in the long-term.

Julie said that if she could get Alexa's condition stabilised in the coming months, she wants to return to Scotland to join the campaign to get the NHS to prescribe cannabis oil.

But she said she could not return to their previous existence.

"I would do anything "

"I could never go back to that - worrying she might die during every seizure.

"I would beg on the street to pay for her medication. I would do anything to help my child."

A Scottish government spokeswoman said: "We appreciate that watching any loved one suffer is heart-breaking, even more so when it is a child.

"The scheduling of cannabis-based products for medicinal use is reserved to the UK government and we welcome their recent decision to reschedule them, allowing specialist doctors on the GMC specialist register to prescribe such products where appropriate.

"We have issued guidance to clinicians, setting out what the regulatory change means in practice."

She added that the prescription of medication was a clinical decision.

What are the rules in the UK ?

The prescribing of cannabis-derived medicines has been allowed in Scotland, England and Wales since 1 November 2018.

However, medicinal cannabis is currently unlicensed - so it can only be prescribed if a patient has a need that cannot be met by licensed medicines.

It cannot be prescribed by GPs. This has to be done by a specialist consultant, for example in neurology or paediatrics.

One of the arguments against the use of the medication is that there have not been satisfactory drug trials to prove its safety and effectiveness.

As a result, it is rarely prescribed.

Epileptic teenager launches legal challenge over block to GP prescribing of medical cannabis.

" This is a road we did not want to take and tried every way we could to avoid it , " says mother Charlotte.

A severely epileptic teenager and his family have launched a legal challenge against the NHS and department of health in Northern Ireland over access to his cannabis-based medicine.

Charlotte Caldwell and her son Billy lodged papers at High Court in Belfast to contest the Health and Social Care Northern Ireland’s (HSCNI) decision to block GPs from prescribing the drug.

Billy has a rare form of epilepsy which causes him to have hundreds of seizures a year but after the 13-year-old began using medicinal cannabis oil prescribed in the US, the teenager was able to go for months at a time without a fit.

Ms Caldwell said that “in desperation and [with] nowhere else to turn” Billy had instructed the KRW Law firm to lodge the case in Belfast.

An urgent hearing is provisionally scheduled to be heard later this month.

“We have exhausted all other options and we are ourselves exhausted,” Ms Caldwell wrote in a post on Facebook. “This is a road we did not want to take and tried every way we could to avoid it. Sadly for Billy he was left with no choice.”

Billy’s case and that of other children with epilepsy, helped spark a change in UK law when the Home Office reclassified medicinal cannabis products to allow them to be prescribed by specialist consultants for conditions like epilepsy or multiple sclerosis.

But after it came into effect in November some estimates suggest fewer than 100 people have received prescriptions, with the lack evidence on safety and effectiveness from clinical trials a barrier to specialists’ prescribing.

Billy, who had the UK’s first medicinal cannabis prescription before a Home Office crackdown, has been receiving prescriptions privately from a consultant based in England.

But this requires his family to regularly fly over from their home in Castlederg, adding costs and disruption to their lives.

When Ms Caldwell found that their local GP was willing to prescribe the medicine under the direction of Billy’s consultant, a common practice in other areas of medicine known as a “shared care arrangement”.

However HSCNI’s interpretation of the law is that GPs cannot prescribe it in this way, and the legal challenge aims to clarify this point in law.

“The whole thrust of it is to localise Billy’s care because it’s unreasonable to expect he and Charlotte to keep travelling back and forth to England to get the prescription,” Anurag Deb, a legal assistant with KRW Law told The Independent.

“It’s a huge strain, with the stress of travel, and financial arrangements of having to stay over and have the prescription filled privately.”

“All of those considerations mean we are really pushing to get Billy’s care localised to his own GP.”

A spokesperson for the Health Department of Northern Ireland said it would be inappropriate to comment on the matter now a case has been lodged.
So much for the right hand knowing what the left hand is doing ???

Teagan Appleby : Epileptic girl's seized medical cannabis returned to mother

Family left " Exhausted and drained " by fight to secure access to drug.

A British mother who had medical cannabis for her severely epileptic daughter seized by Border Force officials has had the “life-changing” drug returned to her.

Emma Appleby, whose nine-year-old daughter Teagan suffers from a rare disorder which causes seizures multiple times a day, had a month’s supply of the drug confiscated at Gatwick Airport after flying back from the Netherlands on 6 June.

She was handed back the THC oil and cannabidiol (CBD) on Saturday, but said the experience had left her “exhausted and drained”.

Ms Appleby, from Aylesham in Kent, said: “All I want is the best for my daughter – medical cannabis has transformed her life.
What a surprise ... there's " Legit money " to be made ???

" They’re gentrifying it " : big money muscles in on the cannabis market.

At the Cannabis Europa conference this week, business interests will be well represented – to the dismay of veteran campaigners.

Later this week at London’s Southbank Centre, hundreds of people – mainly men, mainly suited – will gather in a lecture hall and in conference rooms to debate the medicinal merits of cannabis, with other events in the following days focusing on recreational weed.

Missing from the gathering will be many of those who smoke the drug, take it as an oil for their ailments or have felt the force of the law over cannabis prohibition.

Widening access to medical cannabis for patients, and how to go about it, will be central to the discussion at Cannabis Europa, the conference at the heart of European Cannabis Week. Since legalisation in the UK in June last year, there has not been one reported NHS prescription for full-extract cannabis oil, because of reluctance within the medical establishment. Nonetheless, a private market has emerged to service dozens if not hundreds of wealthy patients, prompting outrage among campaigners.

Figures you would usually associate with politics will stroll through the venues, such as the founder of industry body the Centre for Medicinal Cannabis (CMC), Steve Moore – a former David Cameron insider – and its policy lead Blair Gibbs, once an adviser to Boris Johnson as mayor of London. They are considered interlopers by seasoned cannabis activists, and are often the object of their anger on social media.

The founder of the Guido Fawkes political website, Paul Staines, who provides public affairs advice to the CMC, may also be in attendance, while the Spectator’s chairman, Andrew Neil, will chair a talk featuring Liberal Democrat MP Norman Lamb and Tory MP Crispin Blunt, who recently founded the new Conservative drug policy reform group.

It has registered as a limited company with two directors from the Canadian recreational cannabis companies Supreme and Wayland, as accusations abound that the medical debate is something of a Trojan horse for multinationals jostling over future control of the UK’s multibillion-pound illicit cannabis market.

Few of the attendees will be stoners and adult patients, and many longtime campaigners who have risked the wrath of the law to supply patients are aggrieved they are being sidelined from what they see as top-down reform dictated by big business – often funded by tobacco money.

Greg de Hoedt – who vapes cannabis to manage symptoms of Crohn’s disease, which doctors said in 2010 would kill him within five years – founded the UK Cannabis Social Clubs in 2011 to provide safe spaces for patients and recreational users. He remains sceptical over the recent influx of cannabis entrepreneurs.

He believes the establishment has hijacked cannabis, and fears that a future recreational cannabis market dominated by corporate interests may lobby against the right for people to grow their own. “If they were in it for helping people, where were they 10 years ago when we were banging the drum?” he asks. “It’s extremely concerning seeing these hard-right figures trying to get involved with cannabis. They’re completely gentrifying it by attempting to persuade lawmakers that homegrown cannabis is unsafe.

“I fear we’re going to end up with a commercial cannabis market before people get the right to grow. They care about profit, not the people.”

However, the policymakers say the traditional campaigners had no plan, and that the politicisation and commercialisation of cannabis is an inevitable consequence of reform.

“They weren’t prepared to deal with this coming,” says Moore, who was chief executive of Cameron’s ill-fated “big society” initiative and admits to never having used cannabis in his life. “They weren’t organised, they had no political connections, nor media strategy – it was all a bit ad hoc. Plus, they’re always having arguments among themselves.”

He admits that it is hard for those activist groups to get a seat at the table. “They’re never going to have the size of these companies. Many are getting involved in the industry instead.”

Out of a job after the “big society” unravelled, Moore helped cannabis enthusiast Paul Birch – who made more than £200m from the sale of social network Bebo in 2008 – to establish a new political party, Cannabis Is Safer Than Alcohol, which fought the 2015 general election.

A year later, the pair founded a libertarian drug-policy thinktank, Volteface, in 2016. Fast-forward two years, and their canny, patient-led campaigning led to the legalisation of medical cannabis in June 2018.

However, De Hoedt claims Moore is not interested in patients, nor the small-scale growers who may still be raided, and points to Volteface’s sponsorship by MPX, a multinational cannabis producer.

Moore says it would be perfectly reasonable for people to grow small amounts for personal use within a regulated market, and is frank about both Volteface, where he remains an adviser, and the CMC’s business links.

“When I first got here three years ago, you’d have investor dinners with 15 people in Pall Mall: now there are more than 1,000,” he says. “There are many companies poised, no doubt.”

Ultimately, he argues, public-private partnerships are the best avenue for effective reform. “The bottom line is, if you live in a liberal democracy you’ve got to accept people will set up legal businesses,” he says. “They operate in a regulated environment.”
I use cbd all the time, I have Mh issues myself and my client uses it too,although not for MH issues
Idk if links are allowed here but the one I use is the 2000mg one from vedascbd.com
I like the peppermint flavour, tbh the actual taste of cbd is a bit too much for me, but the peppermint is nice. The Holland and Barrett one was awful tbh, I haven’t tried any others except for some thing my friend had but it was isolate so wasn’t as effective I think as the full spec. Might be worth checking it out anyway. Afaik seems isolate is a no go, don’t bother with it.
Not exactly the thread or forum for endorsements of commercial products.

The disadvantages of using any form of cannibas can be found earlier in this thread.

No two people react the same.

Never so apt ... to repeat that old saying here ... BUYER / USER BEWARE.
Chris From The Gulag wrote:
Mon Jun 24, 2019 6:34 pm
Not exactly the thread or forum for endorsements of commercial products.

The disadvantages of using any form of cannibas can be found earlier in this thread.

No two people react the same.

Never so apt ... to repeat that old saying here ... BUYER / USER BEWARE.
Oh god,I just read this back and realised how this sounds! I am so sorry, definitely not advertising or something, just joined and thought I’d add my input if it helps

And yes always be careful with what you buy,nothing is a miracle but I just thought it might help
If I can find how to edit my post I’ll take the link out
No need , Kelsey ... now said posting IS in context ?

Syd Barrett ... the rise and subsequent fall ... a " Role model " for all when considering the choices ???

The additional danger is from experimenting ... mainly recreationly as opposed to medically ... the " In " thing , the bane
of the 1960s ... especially if seeking something a little stronger ... and lasting longer.

( I was fortunate enough ... and sadden by ... watching " Both " Syds on stage ... a true loss to music at that time. )
Doctors not prescribing medicinal cannabis due to lack of clinical trials.

Commons’ health committee warns patients’ expectations are being disappointed.

High expectations among the public of the benefits of medicinal cannabis are being disappointed because doctors are unwilling to prescribe it in the knowledge that there is little evidence to stand up some of the claims, according to MPs.

A House of Commons health select committee inquiry says the hopes of patients and families were raised when the government agreed to reschedule medicinal cannabis to make it more available in the light of “the distressing cases of Alfie Dingley and Billy Caldwell” – two children with severe epilepsy whose parents said only the drug gave them respite from seizures.

But adequate clinical trials to prove the effects of medicinal cannabis in epilepsy and other conditions have not been carried out. Without that evidence, few doctors are willing to write a prescription.

The Royal College of Physicians told the committee that “there is a perception that CBMPs [cannabis-based medicinal products] work in areas where there is little or no evidence and some patients feel they are being denied access to an efficacious drug”.

Dr Sarah Wollaston MP, chair of the health and social care committee, said: “Although the recent changes to government policy were welcomed, there was a failure to communicate what this would mean in practice for the availability of medicinal cannabis.

“Expectations were unfairly raised that these products would become widely and readily available, and there needs to be far clearer communication that this is not the case.”

The rescheduling by government, from schedule 1 to schedule 2 of the Misuse of Drugs Act, makes it far easier to carry out trials into medicinal cannabis. The committee is concerned, however, that some pharmaceutical companies are reluctant to maketheir products available for research.

Trials, said Wollaston, “would build a stronger evidence base so that patients can weigh up any risks and benefits of treatment. At present there are too many gaps in the evidence to allow most forms of medicinal cannabis to be licensed for use and approved by Nice [National Institute for Healthcare Excellence].”

The government-funded National Institute for Health Research has called for research proposals that it could fund. The committee recommends that intractable childhood epilepsy should be a priority.

Dr Amir Englund, researcher in psychopharmacology at King’s College London, said patients who had exhausted other options could be given some medicinal cannabis products as part of a post-licensing trial. But, he warned, “an important issue to address is the one of exaggerated claims of cannabis as a treatment for various conditions which circulate online and in news articles.

“For instance, clinical trials have found that a number of patients with epilepsy become seizure-free on medical grade CBD, however this only happens to roughly 5% of patients – which naturally becomes the focus of news stories. The other side of the coin is that some patients in these trials drop out either because they felt no improvement or were experiencing side-effects.”
Cannabis oil : Girl's medicine confiscated at Stansted Airport.


The mother of a girl with epilepsy said her child is at risk of "becoming comatose" after her medical cannabis oils were seized at a UK airport.

Tannine Montgomery said Indie-Rose, 5, had seizures and panic attacks before starting to use the oils 14 months ago.

Ms Montgomery, 30, said she was stopped at Stansted on Friday returning from the Netherlands, where she buys the oil with a prescription from her UK doctor.

She urged Health Secretary Matt Hancock to "sort this crisis out".

Campaigners claim just two NHS prescriptions for medical cannabis, which contains the psychoactive ingredient THC, have been issued since the government announced last year that doctors can prescribe such products.

'High risk of death'

Although Ms Montgomery, from Clare, Suffolk, has a private UK prescription to treat Indie-Rose's Dravet syndrome, she says it is cheaper to travel abroad to stock up on the oils.

"To obtain a special import licence would cost us £4,500 per month as opposed to the £1,500 we pay for the drug at the moment," she said.

"Seizing this medicine is condemning my lovely daughter to becoming comatose, wracked by seizures and to be at high risk of an unnecessary death.

"For the love of God, this medicine is legal in the UK and I have a full lawful UK prescription for it."

Although it is illegal to import cannabis oils without a special licence, Ms Mongtomery said UK Border Force officials have in the past let her into the country with the drug.

Ms Montgomery said of Mr Hancock: "We know he has the report on his desk from the NHS setting out why the system for NHS prescriptions is blocked.

"Every day he doesn't act on it is a day of interminable suffering for mothers like me.

"For families like us it's too much to bear the frustration of knowing that there's something that can transform the lives of our children but we are blocked from getting it."

Since the law was changed in 2018, parents have found they cannot easily access the medicines without paying thousands of pounds for an import licence.

In addition, many doctors cite a lack of official guidance as a reason for refusing prescriptions.

Peter Carroll, from the campaign group End Our Pain, added: "This is truly shocking. The law was changed last November so that patients who could benefit from medical cannabis could be prescribed it here.

"Indie-Rose's parents have a lawful UK prescription for this medicine. The recent report from the Health and Social Care Select Committee specifically said that the harassing of families at the border should stop."