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Over one million patients eligible for new medical cannabis exemption card

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A groundbreaking new scheme will protect over one million UK patients from arrest and prosecution.

Over 1 million British adults will be eligible to apply for a medical cannabis exemption card from November 1, designed by patients with the backing of senior police officials.

Cancard was conceived by Carly Barton, the first UK patient to receive a private prescription for medical cannabis and a prominent advocate for law reform.

The card has been created for people who suffer from conditions that private healthcare clinicians have been prescribing for since 1 November 2018.

Such treatments are currently unavailable in the NHS and remain beyond the means of all but a few patients.

However, around 1.4 million adults are regularly using cannabis for its therapeutic effects and living in constant fear of police prosecution.

While there is no breakdown of how many medical cannabis patients face criminalisation, Carly says she hears from several people a day in distress and fear of being arrested.

“Everyday I get patients messaging me in distress about their interactions with the police. That’s not because the police have done anything untoward, the police are doing what they feel is their job,” she said.

“We all know that stress and anxiety can perpetuate chronic health conditions, making symptoms much worse. It’s the fear that stops people from doing things such as going to the shops because they can’t take their vaporizer.

“There is an issue with patients being arrested, but what we’re trying to address is the fear and how to help build that community spirit between the patients and the police.”

The scheme has been backed by the Police Federation representing every rank and file police officer in the country, with a working group that includes senior officers from organised crime and the National Police Chiefs Council.

It also highlights the difficult position that frontline police officers are confronted with when enforcing possession offences since medical cannabis law changed in November 2018.

Detective Chief Inspector Jason Kew of Thames Valley Police said: “We are dealing with people in severe pain, being found in possession of a substance which is actually medically proven and prescribed to other people, if you can afford it, but not available on the NHS.

“No one wants to see a patient in custody, that’s that’s definitely not the role of the police, so the card is a brilliant mechanism to help my colleagues dealing with the situations they will face.

He added: “There are various schemes available throughout the 43 police forces that deal with cannabis very differently, this will provide a consistent approach to the medicinal user. It also will change the intervention from a punitive, prohibitive intervention to a health based, more sympathetic outcome.

“What we’re dealing with here is not a criminal, we’re dealing with a patient and this card will highlight that from the outset.”

However, Simon Kempton, a serving Dorset police officer and member of the National Board of the Police Federation of England and Wales, stressed that the scheme is not a ‘get out of jail free card’.

“I joined the police to help vulnerable people and to lock up criminals, not to arrest and criminalise patients and people in pain. We’re brought into this difficult area where the police officer wants to do what is seen as the right thing but is also afraid of not doing their duty,” he said.

“This isn’t a get out of jail free card, it helps me to do my job and keep patients out of the criminal justice system.

“Police officers can use their discretion in these circumstances – if someone’s driving a vehicle and they’re under the influence of cannabis, I have a wider role to protect the public – but Cancard gives us that confidence to say I’m dealing with a patient, not a recreational user.”

Conservative MP Crispin Blunt, chair of the APPG for Drug Policy Reform, has also shown his support for the scheme.

He commented: “Despite the law change in November 2018 very few of the estimated 1.4 million people in the UK who consume cannabis for medical reasons have a prescription and thus face prosecution for treating their illness.

“This is a wretched situation both for patients who constantly fear a knock on the door from the police and for the police themselves who are in the unenviable position of having to arrest the sick.”

Referring to the case of a former constituent and sufferer of Guillain Barre syndrome, who was prosecuted for the possession of cannabis just two months ago, he continued: “These prosecutions are happening. This gentleman was in his mid 40’s living with his mother and a former teacher, who had given up work after becoming progressively disabled by his condition.

“No one appears in the decision making chain to take any notice of what his conditions were as to why he chose to consume it to relieve the symptoms of the neuropathy coming from his condition.

“That is why we need an operational police policy. Across the country, supported by a system like Cancard.”

Those eligible will be able to apply for the holographic photo ID card which has been developed in collaboration with GPs and is verified at the patient’s surgery. It will allow them to identify themselves to police as verified medicinal cannabis patients, as well as giving them access to an open source legal defence provided by Cancard should they require it.

Patients will be able to register interest in the scheme as of Wednesday the 9 September so that they can be one of the first to officially apply on 1 November, 2020.

“Cancard removes stigma and offers patients the opportunity to speak to their GPs openly about any use of cannabis for medical intent,” practising GP said founder of the Primary Care Cannabis Network Dr Leon Barron.

But he warned that there is still work to be done to tackle stigma among medical professionals.

“Fortunately there are now a growing number of GPs who are recognising the value of cannabis for therapeutic purposes and are supportive of their patients who choose this alternative treatment pathway,” he added.

“There’s a lot of work to do in terms of educating doctors and opening up prescribing so that these patients can  be seen in clinics or GP surgeries and be prescribed regulated, safe medical products.”

For information on Cancard visit www.cancard.co.uk

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‘NHS asking children to come off meds for clinical trials could kill them’

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Parents have warned that ‘washing out’ their children’s medication to enter into clinical trials could put their lives at risk.

The parents of children with severe, life-threatening epilepsy say that insisting that they come off their medication to take part in NHS trials is ‘unethical’.

It comes after the Department of Health appears to have reversed its position on observational trials, insisting that randomised control trials (RCTs) are held before medical cannabis is made more widely available on the NHS.

Following a review into the lack of access held by the Government department last year, the NHS proposed two RCTs and an observational study.

This would take into account the cases such as eight-year-old Murray Gray, who has been seizure-free for 17 months since taking medical cannabis.

A programme of two randomised controlled clinical trials is now being developed by the National Institute for Health Research, with ministers insisting this is the ‘best course of action’ to build evidence.

These trials would require participants to undergo a ‘washing out’ period beforehand, during which they would have to come off their current medication.

Joanne Griffiths, whose son Ben, 11, has treatment-resistant epilepsy has seen his condition improve significantly since he obtained a private prescription last year.

However, her local NHS trust and leading children’s hospital, Alder Hey Children’s NHS Foundation Trust, refuses to prescribe the medication until these trials have been carried out.

During a meeting last year lead neurologists and hospital bosses said they were ‘keen’ to be involved in upcoming trials.

However, Joanne was told that Ben and other children who have already had access to THC products, will be offered a ‘wash out’ period to be eligible for the study.

“Asking these children to wash out their current medicines could kill them, it’s putting their life at risk,” said Joanne.

When Ben was on epidiolex – a drug containing CBD which is prescribed for severe epilepsy – he was having up to 300 seizures a day and was ‘near death’.

“I wouldn’t swap my child from something that is working to something that possibly won’t,” she continued.

“It’s unethical what they are asking us to do.

“We’ve managed to reduce every single one of Ben’s antiepileptic drugs that were not working to control his hundreds of seizures. The only thing that is stopping him having seizures right now is cannabis, if we were to remove that from his system he could go back to having hundreds of seizures and could die.”

Elaine Levy’s daughter Fallon, 26, has been taking medical cannabis since 2018. She saw an instant deterioration in her condition when she tried a cheaper oil to help manage the costs.

“Taking these kids off their medicine they could end up being blue-lighted to hospital, they could die or they might just go back to smashing their head against the floor again,” said Elaine.

“They can’t do that to these children and young adults whose lives have been changed so dramatically thanks to medical cannabis.”

She added: “The whole thing is just astonishing, it’s just the hippocratic oath. You can’t take a person off of something that is working for them and then give them a placebo instead.”

More than 30 cross-party MPs have now signed a letter to Health Secretary Matt Hancock calling for him to release emergency funding to help families cover the costs of prescriptions until they become available on the NHS.

A spokesperson for Alder Hey Children’s NHS Foundation Trust said they could not comment on individual cases.

They said: “Alder Hey is at the forefront for children’s health research and is a founding partner of the NIHR Clinical Research Network for Children. The Trust will continue to engage in supporting any new, well designed and robust clinical trials that investigate the role of cannabis-based medicinal products in drug resistant paediatric epilepsy.

“All studies take into account safety considerations for all potential recruitment candidates and the safety of all patients remains paramount.”

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First Medical Cannabis Awareness Week launches in the UK – how you can get involved

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The first Medical Cannabis Awareness Week is calling for access to NHS prescriptions two years on from the landmark law change.

Taking place from 1-8 November 2020 the inaugural Medical Cannabis Awareness Week (MCAW) will bring together patients, doctors, advocates and organisations to call for fair access to medical cannabis on the NHS.

On 1 November 2018, the law changed to allow UK patients access to medical cannabis. But since then, only a handful of prescriptions have been issued by the NHS.

Patients are struggling to fund private prescriptions – costing several hundreds of pounds a month – and up to 1.4 million people are forced to turn to the illegal cannabis market.

Most patients prescribed medical cannabis live with chronic pain, neurological or psychiatric conditions, such as fibromyalgia, multiple sclerosis, epilepsy, anxiety & PTSD – yet many continue to face stigma in their day-to-day lives and from healthcare professionals when trying to access this treatment.

Launched by PLEA (Patient-Led Engagement for Access) – a community of medical cannabis patients and advocates – throughout the week patients from across the UK will share their stories about the life-changing impact of medical cannabis and their difficulties in accessing a prescription.

Individuals and organisations from across the sector will take part in online events including a tour of a legal cannabis growing facility, and conversations with patients and doctors.

PLEA advocacy director Lucy Stafford took addictive opiate-based painkillers nearly every day of her teenage years to cope with the debilitating symptoms of the connective tissue disorder called Ehlers Danlos Syndrome.

“I had to drop out of school and live with the horrendous side effects. I was a shadow of myself,” she said.

“When I was prescribed medical cannabis, it changed everything. I’ve learnt to walk after years using a wheelchair and now attend university – I’ve got my life back. All patients in need should have the same chance to live a better quality of life – we need NHS access.”

The PLEA Community will host MCAW during the first week of November each year.

As part of the awareness week, people are encouraged to talk about medical cannabis with  their friends and family, record and share their own story, write to their MPs and even play medical cannabis bingo (have you been called a stoner when talking about your medicine? Has anyone ever suggested you’re just after a legal high?)

“It’s time to end the inequality and ensure everyone who needs it has the opportunity to benefit from medical cannabis treatment,” said Abby Hughes, PLEA outreach director.

“During MCAW, we’re calling for fair access, we’re promoting medical cannabis education for all and we’re directly addressing the stigma faced by patients. We want people to have conversations about cannabis, ask questions and be open-minded.

“Cannabis medicines are changing people’s lives around the world. In the UK, people are forced to pay privately, and it’s not right. Medical cannabis is keeping children with severe forms of epilepsy alive, and it’s allowing people with chronic illnesses and conditions to live normal lives.”

PLEA advocates for quality of life with medical cannabis, enabling patients to access their medicine free from stigma, geographical inconsistencies, and financial barriers and supports research into the safety and efficacy of cannabis-based medicinal products, to enable evidence-based prescription for all.

Dr Mala Mawkin, head of market development at Cellen Health and advisory board member at PLEA added: “Even though doctors have been able to prescribe Cannabis based Medicinal Products since 2018, healthcare professionals are still not equipped with the knowledge and tools to prescribe in the UK.

“We have made huge progress to be able to have pharmaceutical-grade THC/CBD medicines for patients that are cheaper and safer than the illicit market. The next steps are to invest in research, medical education and address the stigma faced by patients.

“Events during MCAW are here to show patients and healthcare professionals it is essential to talk openly about medical cannabis to address the unmet clinical needs of people living with chronic conditions.”

You can join advocates and organisations to share your PLEA on social media using the hashtag #MCAW2020

Follow @PLEA_community on Twitter and Instagram.

For more information and full programme visit www.medicalcannabisweek.org.uk

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How Europe’s first medical cannabis tracking app could revolutionise care

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An innovative medical cannabis app has launched in the UK and it’s putting patients front and centre of their care.

Launching on Tuesday 27 October, Eva is a new platform to help patients consuming cannabinoid medications manage their symptoms and capture critical data on the safety and effectiveness of medical cannabis.

The app has been developed by digital therapeutics company Alta Flora and allows patients to record symptoms, medication consumption and quality of life through their phone.

It includes features for patients to add and track symptom severity and medication use –  with functionality for multiple symptoms and medicine routes of administration, such as dose and formulation.

It also allows users to explore trends through interactive tools and assess their quality of life using validated scales and questionnaires, with a clinically valid framework used by NICE (National Institute for Care and Excellence).

It has been designed for use by all patients, however they access their medication.

Alta Flora’s research found a range of challenges facing patients considering medical cannabis as a treatment, including a lack of data of medical cannabis products, stigmatisation within the healthcare system and a lack of access to prescribers and products.

Commenting on the launch, Gavin Sathianathan, CEO and founder of Alta Flora, said: “It has been two years since cannabis was made legal for medical purposes in the UK and since

then, access to these life-changing medicines for patients has barely improved.

“This failure largely rests on a lack of data, the absence of which deprives doctors and

clinicians of the confidence to prescribe it as a treatment.”

Gavin told Cannabis Health that patients who were tracking their symptoms and consumption were then able to have more open discussions about cannabis with their doctors.

“The nature of cannabis medicines means that the patient is required to listen to their own body –  it’s not a standardised thing that you can just get from a doctor, it requires patient-centric tools for us to understand and that’s what we are trying to build,” he said.

“Those patients who took that data to their clinicians found they were engaging with their doctors in a way that was educating them and they were able to have less stigmatised conversations.”

Eva also includes tools for researchers to organise studies within their organisation, such as clinics who want to capture data on their own patients.

“The future of healthcare is patient-centric care. The voice of the patient is becoming much more important, they have a seat at the table now,” he said.

According to Gavin the evidence base produced by Eva will serve both patient and industry needs and could play a key role in providing much-needed data for the safety and efficacy of products, ensuring wider acceptance of medical cannabis.

“We’ve got some really motivated patients who often, after trying lots of different medicines have found that cannabis does work and want to contribute data to improve access for patients in the UK,” he continued.

“We’ve got an opportunity to build a data set to help clinics, prescribers and regulators, understand the impact of cannabis on patients symptoms and quality of life in a lot more detail.”

Gavin also hopes the platform could also be used to track the effectiveness of CBD products on pain, anxiety and sleep,

But Eva’s potential expands beyond cannabis – particularly in a post-pandemic era, he says.

“When we shared what we were doing with academics and researchers it became clear that this idea of instrumenting in real-time the consumption of medicines is valid beyond cannabis,” Gavin added.

“In a post-COVID context, we’re thinking much more about preventative medicine and staying well.

“We’ve had enquiries from the psychedelic space and for monitoring medication used to treat conditions such as diabetes and ADHD.”

Academics from leading UK charity Drug Science have played a role in design, and content from a range of organisations including the Medical Cannabis Clinicians Society, Primary Care

Cannabis Network, MedCannID, PLEA, and CPASS is integrated into Eva.

The service is fully GDPR compliant and will include patient safety monitoring features

and real-time reporting dashboards for clinicians.

Eva is available to download on the Android store. The iOS version will be available from early December.

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