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“Families have had enough of being unseen and unheard” – Campaigners react to landmark medical cannabis report

Campaigners have reacted to a landmark report published this week highlighting the impact of medical cannabis

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Parliament: Hannah Deacon and her son Alfie Dingley
Hannah Deacon and her son Alfie Dingley contributed to the report

Campaigners have responded to a report, which highlights for the first time, the desperation and anger of families trying to access medical cannabis in the UK.

Cannabis Health speaks to Dr Anne Katrin Schlag, head of research at Drug Science and campaigner, director of the Medical Cannabis Clinician’s Society (MCCS) and co-founder of Medcan Support,  Hannah Deacon about the findings and the potential for change.

Eleven families of children living with severe epilepsy contributed to the article, published this week by Drug Science, which focuses on the wider issues surrounding medical cannabis such as cost, access and benefits to patients and family life.

The collection of data shows huge problems, particularly in the breakdown of trust between patients and their doctors and the desperation and anger felt towards the current system.

It also highlights for the first time the impact that having a severely ill child has on parents, carers and the wider family and how medical cannabis has improved things.

Cannabis report

Campaigner and mum to Alfie Dingley, who has treatment-resistant epilepsy, Hannah Deacon helped to recruit the families included in the report.

Alfie, who received the first permanent license for medical cannabis on prescription in the UK, is now one of just three people who have been able to access a prescription on the NHS.

Hannah hopes the data will help more doctors to better understand that cannabis-based medications can be used safely for patients.

“We’ve been using cannabis now with Alfie for four years and I realised that what we are seeing is very valuable,” Hannah tells Cannabis Health.

“I saw my child being extremely ill and I was told by doctors that he may not live. We were told we would have to pump him full of steroids, which can cause heart failure, liver disease and psychosis. Then when Alfie stopped having seizures all the time, I thought, that’s amazing data. It’s evidence.”

She continues: “I didn’t realise that doctors don’t see that as evidence necessarily because it seems anecdotal. I even met a very well known doctor when we were trying to get the license who said that my son’s results were a placebo effect for me which is complete nonsense. He was having 150 seizures every week and spending most of his life in hospital, then he wasn’t.”

“I felt that data was really important and no one seemed to be collecting it. As a patron of Drug Science I approached them to ask if we could collect it. I was very lucky that they agreed to do that. It’s our children, our evidence.”

The study follows another more quantitive clinical analysis, published earlier his year by the charity, which found medical cannabis has a 96 percent chance of significantly reducing seizures in children with severe epilepsy.

This latest report focuses on the experiences and the human element of the medical cannabis system.

“It’s important to show the human element in this with the reduction of seizures and other issues around epilepsy,” said lead author of the report, Dr Schlag.

“We wanted to let the families speak about what they’ve experienced, what the issues are and what they are still experiencing. Hopefully, this will show how we can all work together to improve this situation.”

Dr Schlag continues: “It was very clear the kind of trauma the parents, families, carers and children are experiencing. There are so many issues involved in addition to the actual epilepsy so it’s important to have an article that can really show that.”

Article: A young boy and a girl hug in the back of the car.

Care for carers

The report highlights that the mental health of parents and carers, as well as siblings, suffered as a result of having a severely sick child in the family.

Many parents reported that they had suffered from depression, anxiety and post-traumatic stress disorder (PTSD) as a result of their child’s condition. This was often coupled with a lack of support.

“I remember a neurologist saying to me that his job was to keep my son out of the hospital. As far as they are concerned, as long as you are not in hospital then they are doing their job,” says Hannah.

“But Alfie was on a huge amount of drugs with horrendous side effects and still having seizures. He had very violent and erratic behaviour. He would always need someone to care for him.”

Hannah says she felt ‘unseen in society’ as she became a full-time carer for her son. She says that parents don’t expect to be full-time carers when they have children and that the reality causes a lot of trauma. She stresses that there was nothing on offer for parents experiencing the mental health difficulties included in the article.

“There is a huge amount of grief and of trauma,” she continues.

“We were never offered consistent NHS mental health support. As long as we were kept out of hospital then it didn’t matter what my son’s quality of life was like. It didn’t matter about mine or my family’s quality of life as it only mattered that we were not a burden to the NHS.”

Now that Alfie is no longer having seizures, Hannah has been able to return to work which has helped her to feel connected to society again. She explains the importance of the report lies in its ability to highlight the effect this has on the families involved.

This is an issue still neglected by policy-makers and excluded when it comes to discussions on benefits and risk assessments.

“This is why the report is so important because it highlights not just seizure reduction but the impact on finances, mental health and all the things that come with it,” she says.

“I feel that I’ve come into contact with many doctors that have a lack of empathy. I think that’s why using medical cannabis is such a patient-led force because poor families have had enough of being unseen and unheard. They want to do what’s right and to help their children to have a better quality of life.”

Article: A boy sits on a couch surrounded by toys

Medical cannabis report and education

Both Hannah and Dr Schlag hope the report helps to educate doctors on all of the benefits of medical cannabis.

Dr Schlag said: “This really contributes to opening doctors and nurses’ eyes,  as this is evidence. I think the article also highlighted that the goal of medicine is to alleviate suffering and it’s about improving the quality of life for patients. Reduction of seizures is the key aspect but this shows that there are other positive outcomes for the patients as well as for the families.”

She adds: “Our aim is to work to make a broad variety of cannabis-based medical products available on the NHS in the future. Step by step in providing this evidence we are hopefully making the progress that has been promised to patients since 2018 when it was legalised. The progress has been poor and we are working to improve that.”

Hannah is in agreement.

“It’s about hope. I hope doctors will take a look at this and the NHS approach,” she says.

“Cannabis is different [to conventional pharmaceuticals] and it’s about quality of life and reducing harm for people who have a chronic illness. I hope this report will go some way to help doctors understand this is a holistic approach of applying the medicine.

“The government promised that this would be widely available and that policy has failed. There are only three prescriptions for whole plant cannabis on the NHS. That’s not right or fair.”

Hannah adds: “I’ve seen the change in my son for four years since he has been on this medicine, I’ve only seen positive outcomes. That’s a good study that’s long enough to show that this is safe for him. Therefore it should be safe for many other people with epilepsy.

“I do believe things will change and reports like this will encourage doctors to prescribe because I think once a few prescribe in the NHS then the dam will break and that’s really exciting. It will only happen because of reports like this.”

Read more on this report

Read more: ‘We are asking for quality of life for our children”- medical cannabis report highlights anger and frustration of parents

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My daughter’s seizures reduced by 95% on medical cannabis – why is it not available on the NHS?

Clover Carkeet’s family have had to fight for her to maintain access to the treatment

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My daughter’s seizures reduced by 95% on medical cannabis
Emily Carkeet with her three-year-old daughter Clover

Three-year-old Clover Carkeet’s seizures have reduced by 95 per cent with medical cannabis – so why has her family had to fight so hard to maintain access to it?

Clover had her first seizure at just 12 weeks old. Doctors diagnosed her with infantile spasms, a ‘catastrophic’ form of epilepsy that is among the most brain-damaging conditions of its kind. 

Early signs of the condition were discovered when her mum, Emily Carkeet, was 30 weeks pregnant. 

She was told that Clover was missing the part of her brain that connects the left hemisphere to the right, known in medicine as the corpus callosum. 

Seventy five per cent of newborns with the condition will grow up to live completely normal lives, but sadly Clover is among the minority that develops neurological issues from early childhood.

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Like many children diagnosed with rare forms of epilepsy, Clover was started on a heavy dose of steroids which she took for six weeks. 

“It was a really awful time for us,” Emily recalls. “They made her extremely poorly. She was so upset and angry. She was basically just staring into space.”

After the steroids, Clover was started on a strong antiepileptic drug called vigabatrin, with her enjoying five months without seizures. The freedom gave her the chance to develop, and even learn to crawl.

My daughter’s seizures reduced by 95% on medical cannabis

Spencer, Emily and Clover Carkeet

Trying CBD

But it wasn’t just the vigabatrin that was aiding her recovery, Emily believes. 

When Clover was four months old, her parents began giving her tiny doses of over-the-counter CBD oil called Hayleigh’s Hope. In the early days of Clover’s diagnosis, Emily had connected with hundreds of families whose children suffered from similar conditions.

“I was always searching for the answers for Clover,” Emily says. 

“I found that the children who were taking some form of CBD all seemed to be developing fairly normally. Their seizures were well controlled and they were spending less time in hospital.”

She continues: “Every time we increased her dose she would learn something new, physically her development was ahead of some of her neurotypical peers, she crawled at nine months and walked at 13 months, all these things that they said she wouldn’t do.”

But after five months Clover relapsed and developed something called focal seizures. Despite increasing her pharmaceuticals, her condition worsened until she was having as many as 100 seizures a week.

95% reduction in seizures

At this point, Emily and her partner, Clover’s father, Spencer, were at a “crossroads”. Either introduce more pharmaceutical medication or pursue a CBD prescription.

“It became abundantly clear that what we could buy over the counter just wasn’t strong enough for her,” Emily says. 

“We were at a crossroads really; we could either add more meds… but we had made a vow in those early days that that was not what we wanted for her. We wanted to give her a chance to have a quality of life, and we believed the best chance of that was by staying as far away from heavy duty drugs as possible. 

“That’s when we decided to go down the prescription route.”

Clover met criteria and was able to access a legal prescription for medical cannabis in August 2020. By November, her seizures had dropped to just three or four per week – a 95 per cent reduction. 

The following April, the family added the THC-containing oil Bedica to Clover’s course of medication, which is when the number of seizures fell “dramatically”.

“THC was the game-changer for her. She was sometimes going 10 days without a seizure,” says Emily.

“The biggest doubt for me was that THC might have detrimental behavioural and developmental effects, it worried me, but less than having her on a benzodiazepine, wired up to machines in hospital. As her mum I’ve always followed my gut instinct.”

My daughter’s seizures reduced by 95% on medical cannabis

Clover’s parents say THC was a “game-changer” for her

Battling the BPNA 

Despite Clover’s parents seeing a huge improvement in her condition and quality of life, the family faced losing her access to the medicine when her prescribing doctor was reported to the General Medical Council (GMC) last year. 

Although she doesn’t know the details of how it came about, the complaint was made shortly after Emily wrote to Clover’s neurologist in the NHS outlining her daughter’s positive response to cannabis-based medicines. 

The complaint, believed to have come from the British Paediatric Neurology Association (BPNA), centred around Clover’s age as at the time, at 17 months old, she was the youngest child in the UK to be prescribed the medicine. It stated that the doctor was not a neurologist and therefore should not be prescribing. 

BPNA guidance claims that cannabis medicines can only be prescribed in children with epilepsy by a paediatric neurologist. But this is not stated anywhere in current legislation. 

The case ended up being dismissed, with the GMC’s independent medical expert quoted during the review as saying the BNPA position is “probably not in the best interests of children”.

“Doctors sign a Hippocratic oath then they don’t do what’s best for their patients. It’s very negligent to deny these kids a medicine that clearly works for them,” says Emily.

“What I don’t understand is this necessity to throw so many drugs at them just because they’re licensed.

“In my opinion – and logic should rule here – if a child finds something that works, why would you then force them to go back and try all these other things that may be detrimental to them? I find this concept of using cannabis as a last resort absolutely crazy.”

Emily believes that the BPNA guidance on medical cannabis is part of the reason why NHS access is so limited for children with epilepsy.

“They complained about Clover and made no effort to speak to me about how she was doing at all. They don’t listen to us as parents, even though, when you’re a parent of a child with epilepsy, you become the expert on their condition,” she says.

“It’s just so wrong on so many levels.”

Emily and Spencer, with Clover, on their wedding day recently

A “constant juggling act” 

Clover is doing well developmentally and starting to communicate more as she reduces her prescription drugs, something Emily puts down to the medical cannabis. 

“I had read about neuroprotective benefits from cannabis and genuinely think that because she’s had it in her life since she was so young, it’s probably protected her brain,” she says. 

“We’ve never seen any regression from any of her seizures and I honestly think it’s the cannabis we have to thank for that.”

She attends nursery and Emily has been able to return to work. Something which has been a lifeline in funding Clover’s prescription, which currently costs around £1,000 a month. 

Emily and Spencer are able to fundraise, but still pay £600 each month out of their own pockets. Emily describes the situation as a “constant juggling act”.

“I feel an extreme pressure to be working more than I am because we have this prescription to pay for,” she says.

“The person who suffers from this is Clover because she doesn’t get as much of her mum as she needs.”

But despite their struggles, Emily feels lucky they have access to the treatment when so many families in the UK are unable to obtain a prescription even privately. 

There is currently only one paediatric neurologist prescribing for children with epilepsy in the UK, and he is not currently taking on any new patients. 

“There are so many parents who are desperately trying to get this medicine, because they see the results,” she adds.

“It’s an injustice that they can’t access it.”

 

Home » Advocacy » “Families have had enough of being unseen and unheard” – Campaigners react to landmark medical cannabis report

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Cancer survivor reveals how medical cannabis “saved his life”

Barry Freeman swapped his pain medication for medical cannabis.

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A US cancer survivor has shared how medical cannabis helped him manage debilitating pain and stop his usage of multiple medications.

Texan cancer survivor Barry Freeman – who also suffers from PTSD – introduced medical cannabis into his treatment plan in 2019 and has since eliminated the consumption of dozens of pain pills while experiencing a drastic reduction in symptoms with no side effects.

In 2015, a time he describes as “the worst year of his life,” Barry lost his son and received a stage-four colorectal cancer diagnosis.

After being initially turned away by multiple doctors due to his terminal diagnosis, Barry underwent 37 rounds of chemotherapy and radiation treatment. He finally achieved remission in 2017 but his cancer treatment’s lasting effects combined with emotional distress led to continued symptoms of chronic pain, anxiety and panic attacks.

“I was in a very dark place that year. Living with cancer and losing my son caused severe depression on top of a barrage of physical symptoms that made my life miserable,” Barry said.

Barry then sustained a debilitating shoulder injury in 2018, exacerbating his condition and leading to a prescription of 12 pain pills per day. It was then his physician recommended medical cannabis as a treatment option.

“Medical cannabis saved my life,” he continued.

“I felt more relief than I’d ever felt through any pain pill. I could feel the calming effect of the medication come over me. I feel better than I did at 45-years-old. Emotionally and physically, it’s extraordinary to be here now and feel this way after being so sick.”

The Compassionate Use Program (CUP) was enacted by the Texas legislature in June 2015, allowing for the first legal use of medical cannabis products by patients with intractable epilepsy.

It was not until the program expanded in 2019 to include terminal cancer, all forms of epilepsy, autism, multiple sclerosis, spasticity, ALS and hundreds of neurodegenerative disorders that patients like Barry became eligible to access medical cannabis.

Following the 2021 session, the programme expanded to include all cancer patients and those suffering from PTSD.

Barry was provided with cannabis by Texas Original Compassionate Cultivation , a licensed medical cannabis producer that works across the state.

Morris Denton, CEO of the company, believes that more still needs to be done to improve access for patients in Texas.

“Barry was ineligible for life-altering medication for almost four years after his initial diagnosis,” Denton said.

“No one should have to endure a delay in treatment for symptoms that medical cannabis is proven to relieve. This is why continuing to expand the Compassionate Use Program matters.

“There are thousands of Texans who can and should be benefitting from the power of medical cannabis now and our team is dedicated to expanding the CUP to include each of them.”

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Growing “appetite” for medical cannabis among UK clinicians

Over 300 health professionals have signed up to learn more about medical cannabis.

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Growing "appetite" for medical cannabis among UK clinicians
The Medical Cannabis Clinicians Society (MCCS) now has revealed it now has over 300 members.

Over 300 health professionals have signed up to learn more about medical cannabis in the UK since 2019.

Just two and half years after its launch, the Medical Cannabis Clinicians Society (MCCS) now has revealed it now has over 300 members, as it prepares to launch a series of in-person events this year.

Over 300 clinicians, including specialist consultants in a wide range of specialisms, GPs, nurses and allied health professionals, are now active members of the society, sharing best practice, learning from each other, and accessing regular expert support. 

Bosses say this growth demonstrates the “appetite” of health professionals to learn more about this “life-changing” medicine.

Fibromyalgia: A banner advert for the medical cannabis clinic

Throughout 2022, the MCCS executive committee is planning to hold five in-person events across the UK, offering attendees a practical introduction to medical cannabis and CBD. 

The first events will take place in Manchester on Thursday 12 May and Belfast on 1 June, followed by sessions in Edinburgh, Cardiff and London before the end of the year. 

Further events are expected to take place in Liverpool, Newcastle, Bristol, Birmingham and Dublin in 2023.

Open to clinicians, medical students, scientists, researchers, professionals and patients curious about medical cannabis and the current state of prescribing, evidence and availability in the UK, the events will take place from 6.30pm for two hours, with networking and a panel Q&A for attendees following the speakers. 

Prescribing doctors from the executive committee will be joined at each event by society chair, Professor Mike Barnes, as well as medical cannabis patients.

Sativa Learning’s Ryan McCreanor and Volteface’s Katya Kowalski, will also present education opportunities and research insights. 

Professor Mike Barnes, chair of the Medical Cannabis Clinicians Society said:  “The growth we have seen in our membership over the last two and a half years demonstrates the appetite the UK’s clinicians have to learn about this life-changing medication. 

“With significant restrictions meaning that only Specialist Consultants can prescribe, little to no cannabis education for medical students, and the fact that medical cannabis is only available via privately prescribing doctors, the number of clinicians choosing to educate themselves and access support via the Society should be noted by leaders in the health service and in Government.

“Our programme of events, which will see us visit Manchester, Edinburgh, Belfast, Cardiff and London this year, and Liverpool, Newcastle, Bristol, Birmingham and Dublin in 2023, are a fantastic opportunity for clinicians and medical students particularly to learn the facts about this treatment and practical steps to prescribing.”

Hannah Deacon, executive director of the Medical Cannabis Clinicians Society, added:  “The Medical Cannabis Clinicians Society believes that everyone who could benefit from medical cannabis should have access to it. Our mission is to give clinicians access to evidence, training, expert guidance, peer support and licensed product information so they can prescribe life-changing medical cannabis treatments to all patients in the UK, on the NHS. 

“The Society is an expert-led, independent, not-for-profit community, dedicated to bringing this safe, legal and effective medicine to people living with chronic conditions.” 

The first event will take place at The Midland Hotel in Manchester at 6.30pm on Thursday 12 May. 

Dr Niraj Singh, consultant psychiatrist from The Medical Cannabis Clinics and executive committee member of the MCCS, will share his experience of becoming a medical cannabis prescriber. 

Prof Barnes will explore the history and evidence for medical cannabis.

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