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Patient Voices: “I feel like I can plan for the future instead of having to take one day at a time”

Lex Wolfe shares how medical cannabis has allowed them to thrive while living with multiple health conditions

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Lex Wolfe was diagnosed with Ehlers Danlos syndromes in 2018

Introduced to cannabis while struggling with symptoms of Ehlers Danlos syndromes as a teenager, getting a prescription has allowed Lex Wolfe to plan for the future and thrive while living with multiple chronic health conditions. 

Lex Wolfe has just graduated from an undergraduate degree in forensic science. 

Now considering a Masters in biochemistry, this was unimaginable to their teenage self, who just a few years ago was struggling to make it through GCSE exams.

“I thought I wasn’t going to make it past high school in terms of education, I barely survived my GCSEs. Although I got good grades, it was exhausting,” says the 21-year-old.

“I didn’t think about whether I would go to sixth form or actually what I was going to do after school, I just needed to find a way of living that was comfortable.” 

After being diagnosed with autism spectrum disorder and depression and anxiety as a child, the classroom environment combined with symptoms of social anxiety meant that Lex struggled in school. But as a teenager they began experiencing physical symptoms too. 

“I started to notice that I was in quite a lot of pain – I shouldn’t have been in that much pain, it wasn’t normal,” they say.

“At the time I had hundreds and hundreds of trips to see doctors and other healthcare professionals but nobody could figure out what was wrong because I seemed to have a weird collection of symptoms.”

Lex says they tried everything for pain relief and was prescribed “hundreds” of pharmaceutical painkillers. 

“I was told it was growing pains, I was told that I was just being pathetic, that it was just normal aches and pains and I would grow out of it,” they add.

“They thought my pain might have been psychological.”

At the age of 15, Lex’s mum revealed she also lived with chronic pain. And she had been consuming cannabis for years to help with the symptoms. 

“It was my mum who first introduced me to cannabis,” says Lex.

“She turned around to me and said, ‘by the way, you’re not the only one with chronic pain – I struggle with it too’.”

“It was kind of a revelation, I felt relieved that I wasn’t the only one.”

Lex began accessing cannabis and says they “haven’t looked back” since. 

medical cannabis patient Lex Wolfe

“The first thing I noticed was that my anxiety levels were massively reduced. I was actually able to talk to people – if I wasn’t medicating this conversation wouldn’t be happening right now,” they say.

“I didn’t notice pain relief to begin with, it wasn’t until a couple of months later, when I decided not to take my prescription painkillers and see what happened. 

“It doesn’t remove my pain completely but it’s now at a level that is easy enough for me to manage. I can continue with life like a normal human being, whilst also not rattling because I’m full of pharmaceutical drugs.”

Lex’s family were always supportive, but they kept it a secret from school friends.

“I’d heard about how it was a bad drug, the typical stuff they tell you in school, but that kind of thing was never mentioned in my family, it was always just seen as a medicine,” they say.

“Even still, it was something I was always told to keep secret, because you don’t know how other people will react to it.”

When their friends discovered cannabis for themselves and began using it recreationally, Lex revealed that they had been consuming it medicinally for years.

“Although they found it a fun drug for the weekend, it was something I needed to live a decent life,” says Lex.

“My friends understood, to a certain degree, a lot of them had generalised anxiety and did experience some relief themselves, but the rest of the population just labelled me as a ‘stoner’.”

Lex was eventually diagnosed with Ehlers Danlos syndromes in 2018, nine years after the initial symptoms had begun. 

They asked their GP about the possibility of accessing cannabis on prescription, but were told as it was not available on the NHS there was no way of getting it.

“I knew I would clearly qualify for it and I asked if there was any way it would be available to me and was told no,” they explain.

“It wasn’t until I got so annoyed at the fact that I was buying off the black market and being put in an awkward position, that I started exploring whether I could find someone whom I could pay to prescribe it.”

Lex was eventually taken on as a patient at a private clinic in the UK and shortly afterwards was introduced to the patient-led organisation PLEA (Patient-Led Engagement for Access), of which they are now a member of the management committee.

“Interacting with the medical cannabis community has given me that support group, people to talk to who actually get what I’m going through,” says Lex. 

“You hear all the time that [cannabis] is an illegal drug, that it’s ‘bad’, but actually talking to people who also get relief from it for a wide range of conditions and knowing you’re not the only person, gives you the validation that it’s not just all in your head.”

Lex wolfe

Lex continues: “Having a regular prescription has made a massive difference, knowing that I’m going to have my medication when I need it and not have to worry about whether my dealer has it in stock, or whether it’s going to make me anxious because it’s got terpenes in that I’m sensitive to. Having consistency has done wonders.”

But although Lex says they are currently paying less than they would on the street, the high costs of private prescriptions are still unsustainable.

“Even with the subsidisation [through Project Twenty21] it’s not really feasible,” they say.

“I can afford it, but if I pay for my prescription I can’t do other things like going out and seeing friends.”

And even as a legal patient, Lex has experienced stigma from people assuming they are using cannabis to “get high” due to their age, as well as from doctors with a lack of knowledge around how to treat trans and gender non-conforming patients.

READ MORE  Half of US breast cancer patients use cannabis alongside treatment

“I often get comments around the assumption that I am using cannabis to get high instead of as a medication,” Lex admits.

“In terms of gender identity, many of the doctors in the industry have no idea how to treat trans and gender non-conforming people in terms of effect on hormone and qualification for gender conformation surgery.”

Whilst studying for their degree, Lex convinced their tutors to let them research cannabinoids for an undergraduate thesis and authored a paper on how cannabinoids could be used in modern medicine to treat a variety of physical and psychological conditions.

They hope to work in the industry one day and would like to help further the conversation around the role of cannabis in mental health treatment. Data from Drug Science’s Project Twenty21 shows that after pain, anxiety is the second most common condition for which medical cannabis is prescribed.

“A lot of the conversation around cannabis is centred around conditions such as pain, MS and epilepsy, we do need to talk more about how it can help with your mental health problems too,” adds Lex.

“I now feel like I’m able to plan for the future rather than just having to take everything a day at a time.”

Read more from our Patient Voices series here

Want to share your story with Cannabis Health? We’d love to hear from you. Contact sarah@handwmedia.co.uk

Advocacy

Medical Cannabis Awareness Week returns with call for real world evidence

Three years since the law changed supporters call for regulators to consider real world evidence

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medical cannabis flower tolerance break
Medical Cannabis Awareness Week returns from 1-7 November

Medical Cannabis Awareness Week will return to mark three years since the law changed, with a fresh call for regulators to consider real world evidence and ensure fair access for patients. 

Led by patient advocacy group, PLEA (Patient-Led Engagement for Access), Medical Cannabis Awareness Week takes place in the first week of November and brings together patients, doctors, supporters and stakeholders across the sector to raise awareness of the plea for fair access to medical cannabis.

Medical Cannabis Awareness Week logo

On 1 November 2018, medical cannabis was made available on prescription in the UK. Three years on, only three prescriptions have been issued by the NHS.

Out of desperation, patients are now funding private prescriptions and up to 1.4 million patients are forced to turn to illegal methods. 

Patients unable to afford and access treatment are suffering due to the fear, stigma and financial barriers preventing them accessing this safe, and potentially life-changing, treatment. 

The first Medical Cannabis Awareness Week to take place last year saw over 50 speakers and 1500 live attendees, with 60,000 people reached. 

This year, taking place from 1-7 November, Medical Cannabis Awareness Week 2021 aims to highlight the real need for real-world evidence in evolving access to this new treatment, calling for fair access to medical cannabis treatment on the NHS.

Patients from across the UK will be sharing their stories about the life-changing impact of medical cannabis and their difficulties in accessing a prescription.

medical cannabis patient Gillian Flood

Medical cannabis patient, Gillian Flood

Gillian Flood, member of PLEA’s Management Committee who is prescribed medical cannabis for fibromyalgia and PTSD, commented:“Life before and after cannabis medicine really is like night and day, before constant pain left me feeling hopeless and depressed, unable to function, trying all different medications, dealing with awful side effects. After, well, I feel like me again, I can enjoy a meal, go for a walk, sleep and manage my pain better while having a clear head.

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“While all this is amazing the financial cost bring a whole new anxiety around how I afford my medicine, every month I struggle to pay for it, I don’t want to go back to my life before, not now I know I don’t have to suffer so much, there is a relief available, my plea is that this medication becomes available through the NHS so no patient has to endure the pressure of trying to fund a private prescription.”

How you can get involved

There are several ways supporters can get involved, with virtual events taking place each day, aimed at patients, doctors, supporters and anyone else with an interest in medical cannabis.

Join patients, advocates and organisations to help raise awareness, address the stigma and call for change by sharing a video or audio clip or written post of your PLEA on social media using the hashtag #MCAW2021. 

Have a conversation about medical cannabis. Ask questions, and connect with medical cannabis supporters, patients, and allies via the #MCAW2021 hashtag on social media.

Help spread the word about fair access to medical cannabis treatment by writing to your MP.

Abby Hughes, chair of PLEA commented: “Having witnessed the transformation of quality of life for many patients like myself, it is hard to accept that the only access many have to medical cannabis treatment is through the private sector. Why is there enough evidence for a private pain consultant or psychiatrist to prescribe unlicensed cannabis medicines, yet the same treatment is not afforded to patients via the NHS, which was created to provide universal, comprehensive and free health care?

“With only three NHS prescriptions having been issued three years on from Sajid Javid’s promise to make medical cannabis treatment accessible, my plea for Medical Cannabis Awareness Week 2021 is that the real need for real world evidence is explored and accepted in evolving access to this new treatment.”

We’ll be sharing more details of all the events and how you can get involved in the coming days. 

For full event listings and to access resources for patients, doctors and supporters visit www.pleacommunity.org.uk/mcaw

READ MORE  "BPNA rules deny safe treatment for children"– clinicians write open letter to Sajid Javid

 

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Cannabis and driving – Calls for urgent law reforms to protect patients

A new report highlights the myriad of issues facing medical cannabis users on the road. 

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Campaigners are calling for urgent reforms to driving laws

Campaigners are calling for urgent reforms to legislation around cannabis and driving as patients risk criminalisation.

A new report, published by the Seed Our Future campaign, highlights the myriad of issues facing medical cannabis users on the road. 

The group, which lobbies for the decriminalisation of cannabis, is calling for the removal of THC from Section 5 and reverted to Section 4 of the Road Traffic Act 1988 (RTA), where evidence of impairment would be required to convict.

Following an amendment to the RTA in March 2015, any driver who is stopped by the police can expect to be swabbed and if THC is identified, a blood test is enough to secure a conviction. 

This means that anyone who has consumed cannabis within the last few days – or has been subject to passive smoking – may be over the zero-THC limit and at risk of prosecution, regardless of whether there is evidence of impairment.

According to the report, the effects of THC have generally gone after two to four hours when inhaled, longer when orally ingested. And the research conducted by Seed Our Future has found no cases of any serious vehicle accidents which conclusively shows cannabis as the primary cause.

Patients facing criminalisation

Although patients who hold a legal prescription have a right to a medical defence, this is not always taken into account and those who are unable to afford one are being criminalised and having their licences removed without any evidence of driving impairment, argues the report.

In 2021 alone, Seed our Future has supported four people with legal cases in relation to cannabis driving offences. All four suffer from long-term conditions and fit the criteria for obtaining medical cannabis prescriptions, with one holding a legal prescription at the time and two accessing one shortly after arrest. 

In all cases, the subjects had taken cannabis several hours before driving and there was no evidence of any sign of driving impairment. 

According to the report, in 75 per cent of the cases, the police had “no idea” that the law had changed regarding medical cannabis in 2018.

Seed our Future claims that the inclusion of cannabis in Section 5 of the RTA was based on “political and financial  motivations” and not “conclusive road safety data”. 

The report concluded:  “The concept that a laws exists which leads to a criminal record, fines and a driving disqualification  without any evidence of the defendant being a risk to road safety, whom  with all likelihood is practicing their inalienable human right to health by utilising globally recognised essential medicine risks jeopardising the fabric and integrity of the judicial system and exposes the incompetence of the police force in being able to gather evidence sufficient to constitute criminal intent.”

Calls for standardisation

Guy Coxall, the groups founder is also asking for standardisation of labelling for medical cannabis prescriptions and health practitioner advice in regard to guidance for driving.

He has called on the Cannabis Industry Council to ensure all importers of cannabis-based products have the correct labelling, in line with UK regulations, and all practitioners provide advice to patients in line with guidance from the Medical Cannabis Clinicians Society (MCCS).

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It states: “Patients, on higher THC products especially, should be warned not to drive or operate heavy machinery whilst under the influence of side effects of a cannabis product… Like any other medications that may cause impairment, do not drive or operate a vehicle if feel impaired or are unsure if you feel impaired and follow your physician’s advice.”

Coxall said:This lack of standardisation places a number of UK patients in danger of criminalisation and penalties.

“We would also like to see discussions surrounding basic educational programmes for Police Officers, CPS solicitors and Judges to update on legislative changes and provide information to reduce stigma and medical and financial discrimination against medical cannabis users/patients, as identifying ways of protecting medical cannabis users who are at present unable to afford private medical prescriptions until availability is made accessible on the NHS.”

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GMC must address “serious concerns” over BPNA guidelines on prescribing medical cannabis

An open letter has been signed by more than 30 parents and carers of children with intractable epilepsy

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Ben Griffiths, 11, who suffers from treatment-resistant epilepsy

Dozens of parents whose children rely on medical cannabis have written to the General Medical Council (GMC) outlining their concerns about the blocks to access.

More than 40 parents and carers of children who are prescribed medical cannabis to treat conditions such as intractable  epilepsy have signed an open letter to the GMC outlining a number of issues.

Earlier this week, 50 medical professionals issued a letter  from the Medical Cannabis Clinician’s Society, expressing their concerns over the British Paediatric Neurology Association (BNPA) guidelines on prescribing unlicensed cannabis medicines.

The letter, which was published in the Times,  claims that the guidelines play a part in denying medical cannabis treatment for children with epilepsy, many of whom have had their lives significantly improved it.

It includes a comment from an expert witness in a case brought to the GMC by the BPNA, reported as stating that: ‘The BPNA position that only paediatric neurologists should initiate treatment is not supported by other national guidance, and probably not in the best interests of children, as it may impede debate and research into the appropriate use of Cannabidiol (sic) in refractory epilepsy’.

In response the parents of these children say they felt moved to write directly to the GMC to express “serious concerns”.

In the letter they stress that they feel the guidance issued by the BPNA plays a significant role in preventing doctors from prescribing.

It states: “The quote from the GMC expert witness highlights that the BPNA guidance is ‘not supported by other national guidance’.

“From our knowledge of these matters, we believe that this other national guidance may well be that from NHS England, NICE and indeed, to some extent, your own.

READ MORE  Half of US breast cancer patients use cannabis alongside treatment

“If a professional medical body is producing guidance that is ‘probably not in the best interests’ of the patient cohort at issue, surely that matter should be investigated and then appropriate steps taken to ensure that the guidance in question is corrected?

GMC must address families denied access

Ben Griffiths, 11, who suffers from treatment-resistant epilepsy, and mum Joanne.

Speaking with Cannabis Health, Joanne Griffiths, mother of Ben, 11, who suffers from treatment-resistant epilepsy, said: “We felt moved, as a group of parents and carers with loved ones affected by intractable epilepsy, to write to the GMC to ask that they address what we believe to be serious concerns relating to the BPNA position on the prescription of medical cannabis following the recent article in The Times.”

Joanne added: “This is clearly extremely concerning and needs to be addressed. The almost total block on NHS prescriptions is causing untold huge emotional and financial distress to our families.”

Open letter

The parents also highlight the ‘dramatic’ benefits of medical cannabis for these children, but says that the lack of prescriptions on the NHS means parents are facing the ‘daunting and emotionally and financially draining’ burden of finding the money to fund the medication privately.

The letter states: “Without exception our loved ones have shown very significant improvements in their symptoms following the administration of medical cannabis.

“In many cases, the improvements could more accurately be described as ‘dramatic’ with children who were suffering up to hundreds of seizures a day and being rendered semi-comatose due to the effects of conventional pharmaceutical drugs being able to lead almost normal drugs.

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“However, since the law change, to the best of our knowledge, there have only been three NHS prescriptions for whole-plant extract medical cannabis for cases of paediatric epilepsy. The rest of us have had to face the daunting and emotionally and financially draining burden of having to find up to £2,000 a month to fund the medicine privately

“Raising this money is a massive challenge in normal times. During Covid, it has been impossible.”

The parents have now called on the GMC to address their concerns, stating that failure to do so may mean doctors may be “unwittingly failing” in their ethical duty to patients.

The letter is open for other parents to sign and can be accessed through the Boisterous Ben Facebook page or Twitter.

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