This year Kirran Gill became the first UK patient to have her medical cannabis treatment funded by the Sapphire Medical Foundation. Here she tells Cannabis Health what it means to have hope again.
Kirran Gill’s life has been devastated by chronic pain.
After being diagnosed with rheumatoid arthritis in 2011, and a short time later fibromyalgia, she not only lost her quality of life, but a career that she loved – and a husband who vowed to be there in sickness and in health.
Now 38, Kirran has experienced health issues since her late teens and first noticed pain while at university, although it was never severe enough to significantly impact her life.
But after she was involved in a car accident – where another driver hit the back of her stationary car at 40mph – the pain became a constant.
“From that moment on I was in extreme pain,” she says.
“It was incredibly aggressive and difficult to control. It took a while to get a diagnosis and I had to be quite tenacious, but eventually the tests came back that I had rheumatoid arthritis.
“My rheumatologist believes that it had gone into remission but the car accident triggered it.”
A year later Kirran’s husband left her out of the blue and shortly after she was diagnosed with fibromyalgia.
In 2014, as her condition continued to decline, she was forced to give up her teaching job and was unable to work, struggling to do basic tasks such as housework or washing her hair.
“My body just couldn’t cope anymore,” says Kirran, who despite being prescribed a number of strong opioids was still left living with extreme pain on a daily basis.
It was her doctor who suggested she try cannabis, after she told him she had been trying CBD.
“I had always been quite conservative with regards to cannabis, but the fact that my doctor was suggesting it opened the door a little bit,” she says.
“I did a lot of research after that and continued to take CBD. When the law changed I thought there would be a chance for me to try it.”
But nothing changed for Kirran after November 2018. With no doctors prescribing on the NHS, she was among many patients still unable to access cannabis-based medicines.
“I couldn’t afford a private prescription,” she says
“It just wasn’t even an option for me.”
Kirran applied to the Sapphire Medical Foundation, which aims to cover the costs of medical cannabis treatment to help reduce financial barriers for patients.
In July 2020 she was selected as the Foundation’s first patient to successfully complete the grant making processes and a clinical specialist confirmed her eligibility for treatment with cannabis-based medicines.
“It meant everything,” says Kirran.
“The most important thing that it offered me was hope, the hope that one day I wouldn’t be in constant pain and I might be able to do things that ordinary people do, like walk around a supermarket.”
Since taking the medication Kirran has been able to sleep for longer than two hours at a time for the first time in 11 years.
She hopes it will help her manage the pain so she can reduce the amount of pharmaceutical drugs she has to take, having experienced the side effects of eight years of strong opioids.
“Although the opioids do remove some of the pain, they also have their own impact on my health,” she says.
“It was really important to be given an opportunity to see that maybe one day I won’t have to rely on them because there is a natural product out there that could do the job equally as well but with less side effects. That for me was and still is the real beacon of hope.”
She continues: “With me having a number of health conditions it is very much a journey. It’s not the case that I’m now pain free, but I’m hoping it will alleviate a great amount of my pain and will allow me to have a better quality of life.”
Kirran is also hoping she will be able to return to her work, after hearing the experiences of other medical cannabis patients through organisations and communities such as PLEA (Patient-Led Engagement for Access).
“Seeing the stories from other people who have used cannabis is really inspiring,” she says.
“That is my goal, that I will be able to return to teaching, because I desperately miss it.”
The Sapphire Medical Foundation is hoping to help other patients access medical cannabis, but with Covid restrictions preventing fundraising activities from going ahead this year, it is among many charities struggling to support those who need it.
“There are lots of people out there who are on tight budgets, particularly those who can’t work because of health conditions. It’s so important that those people don’t get forgotten about,” says Kirran.
“The people at Sapphire have been absolutely amazing. As far as I’m aware there is no other organisation out there that covers the cost of the prescription and the cost of the appointment.”
For Medical Cannabis Awareness Week, the Foundation launched its latest fundraising drive, with teams from across the industry challenged to walk, run and cycle the 550km distance from London to Holland. A journey many desperate patients and their families have made to access life-changing treatment.
“It’s hard for everyone at the moment and there are so many charities that are equally deserving, but for those of us whose quality of life has been severely impacted by the conditions it’s so important that there is hope,” adds Kirran.
“That’s what the Sapphire Foundation did for me, it gave me hope that one day I won’t have to live like this.”
To donate visit www.sapphirefoundation.co.uk/donations/mcaw2020
Case Study: Karate master avoids spinal surgery thanks to CBD
Suffering from acute back pain, John Casey was ready to undergo major spinal surgery until he started taking CBD two weeks before the procedure. He is now back to his active lifestyle – and still hasn’t had to go under the knife.
The 51-year-old from Dover lives with spinal stenosis, a condition which causes bone to grow inside the spinal canal, applying painful pressure on the nerves.
He was diagnosed with the condition three and a half years ago with the pain becoming progressively worse and harder to manage over time.
John lives an active life. As a carpenter by trade and karate instructor in the evenings, his diagnosis came as a blow and caused major disruptions to his life.
His karate teaching became near impossible and he also experienced difficulties playing with his band, as singing caused pain throughout his pelvis, groin and legs.
“I really struggled,” John says. “It was really hard for me to carry on doing that kind of physical activity with my back locking up.
“I became very grouchy and down and it was getting to the stage where I couldn’t demonstrate [karate], and I couldn’t do my private classes. I was really struggling to turn up. It was difficult just walking the dog with my partner, I was hobbling around.”
As recommended by his doctor, John underwent spinal epidural injections a total of four times, which involved general anaesthetic, injections up through the spine and two days off work for recovery.
The first procedure was a big success, giving John three and half months of relief from the pain. Unfortunately, the following three procedures had less and less of an effect. The fourth and final injection gave him only a few days of respite before the pain returned.
“I don’t moan very easily but this pain was really, really getting me down to the point where I thought I need to have spinal surgery. I couldn’t carry on living with the pain. Being an active person, it was really destroying my life.
“It was the last thing I wanted but I decided that I had to book it in.”
John was introduced to CBD by a friend who was looking for a product for his wife who had recently undergone a leg amputation.
At this point, the pain was debilitating, and John was ready to try anything. Despite his scepticism about cannabis-based products, he ordered Canaxen’s 16% CBD oil and started taking the supplement just two weeks before his surgery.
“I was getting the pain every day and it was sometimes hard to walk. I took the first dose at midday and took a second dose under my tongue at about six o’clock before I finished work. I felt great,” he says.
“At first, I thought it must just be a coincidence, but then the next day there was still no pain. It was so much better than any of the epidurals I have ever had.”
John went to see his surgeon two weeks later and spoke to him about the effects that CBD was having on his body. He decided to cancel his operation.
Unfortunately, John hasn’t been able to return to his old karate training routine, however he still teaches regularly and is able to live without pain.
“CBD has given me a pain-free lifestyle,” John says.
“If I go and train, the pain comes back because I’m moving around a lot and pivoting the hip. I can do it for a couple of minutes before it affects me then I’m back to square one and the CBD won’t mask that.
“But it does take the pain away from my day-to-day life doing my job and teaching.”
John adds: “Who knows if the pain will return in the future, but at the moment, my body’s happy and I’m not in pain.”
Families’ letter to Prime Minister highlights ‘cruel inconsistencies’ in medical cannabis policy
Families have written an open letter to the Prime Minister pleading with him to remove medical cannabis blocks.
The families of 25 children and young people suffering from severe epilepsy, have written an open letter to Boris Johnson urging him to intervene in their long running fight to secure NHS access to medical cannabis.
It comes after they learned that Mr Johnson sent a congratulatory letter to the mother of a child who is believed to be only the third person to receive an NHS prescription after a two-year fight.
In it the Prime Minister said he ‘sympathised deeply’ with those suffering from drug-resistant epilepsy and ‘completely understands’ the importance for patients to have access to the most effective treatments on the NHS.
Supported by the End Our Pain movement and leading UK epilepsy charity Epilepsy Action, on Tuesday 1 December, campaigner Elaine Levy will be outside Number 10 with a placard featuring a copy of the letter.
Elaine’s daughter Fallon, 27, who has a rare form of epilepsy, Lennox–Gastaut syndrome, has been successfully treating the condition with medical cannabis since 2018.
But the cost of funding a private prescription each month has placed a severe financial and emotional strain on the family.
Elaine is among a number of parents who are currently paying up to £2,500 a month for medical cannabis for their children – and with covid restrictions affecting fundraising, some are expected to run out of the medicine within weeks.
On behalf of the End Our Pain families, Jo Griffiths, whose son Ben, 11, has treatment-resistant epilepsy, said they felt ‘let down’ by the NHS and the Government.
“This is a matter of life and death,” she commented.
“When the law was changed on 1 November 2018 we all thought that our children too would be able to secure access to what we have proved is a life-transforming medicine for them, but it was not to be. We have fought tooth and nail for our children but have been comprehensively let down by the NHS and the Government.
“It’s all well and good for the Prime Minister to write a congratulatory letter to one family. If he can write such a letter, surely he can step in and help sort out what is a cruel and total failure in the medical cannabis policy.”
Jo added: “We have been told that the Government can’t use public money to help pay for private prescriptions until the NHS gets its medical cannabis prescribing house in order, so imagine our outrage when it appears that public money has been used in this way in Northern Ireland.
“If it can be done in one part of the UK, surely it can be done in the others too?”
Health Secretary Matt Hancock previously requested that the NHS undertake a review as to why NHS prescriptions weren’t flowing.
Published in 2019, one of the main recommendations was for an ‘alternative study’ – or observational trial – to be carried out as a means of getting access to medical cannabis for these children at no cost to them.
It now appears this commitment has been taken off the table, with randomised controlled trials (RCTs) which would require them to undergo a high-risk ‘wash out’ period from their current medication, being developed by the National Institute for Health Research.
Campaign director of End Our Pain, Peter Carroll, said: “We agree there needs to be more trials, but these children are already on the medicine and it would be unethical and dangerous to take some of them off the medicine so that they could take part in full blown randomised control trials which require some patients to be on placebo.
“Only in Britain could we end up with a fantastic policy change to legalise access to medical cannabis driven by the families of severely epileptic children, only to find that families with severely epileptic children can’t access it. The situation is riddled with inconsistencies.”
Epilepsy Action has joined forces with the families to ramp up pressure on the Government, following the two year anniversary of the medical cannabis law change on 1 November 2020.
Simon Wigglesworth deputy chief executive for the charity commented: “We urge the Prime Minister to end the suffering of these families and work with them and MPs towards the same goal. There must be a way to access this treatment on the NHS for children with severe epilepsy.
“For many it is a treatment that is already reducing their seizures – something that they feel finally works for their child, after exhausting all other options. Their calls for change have gone on long enough. They have already waited for two years, they cannot afford to wait any longer.”
Mum’s urgent plea for daughter’s medical cannabis
Mum and prominent campaigner Vera Twomey has pleaded with the Irish government to continue access to her daughter’s medical cannabis.
Vera whose daughter Ava Barry, 11, has a severe form of epilepsy known as Dravet syndrome has called on Ireland’s Prime Minister Micheál Martin and Health Minister Stephen Donnelly, to help secure the delivery of her medical cannabis prescription.
Before the outbreak of Covid-19, Vera and her husband Paul were travelling to The Netherlands every 12 weeks to buy medication and bring it back to Ireland for their daughter, who has been taking it to control her seizures for the last four years.
Due to the coronavirus lockdown and travel restrictions the Health Service Executive (HSE) have arranged for the importation and delivery of Ava’s medication, along with 40 other patients who are prescribed under individual licences.
Now Vera has revealed that the HSE has confirmed in writing that this arrangement will stop once the restrictions are lifted.
She fears that being forced to travel overseas every few months would put her at risk of contracting the virus which could be fatal for her daughter, whose immune system is compromised due to her condition.
“Ava has taken medicinal cannabis to control her seizures for the last four years. She has responded very well, and considering the serious outcome for Dravet Syndrome patients, it is clear that medical cannabis has saved her life,” said Vera, who once walked from her home in Cork to Leinster House in Dublin in protest to ask former health minister Simon Harris for help in her fight to gain access to medical cannabis.
“The HSE have told us, in writing, that the arrangement will cease once covid restrictions are lifted.
“My daughter has a compromised immune system and there exists a real danger that either Paul or I would contract covid-19 while travelling and bring it back to our daughter. It could cost Ava her life.”
Vera says she has been attempting to contact Stephen Donnelley since he became Minister for Health in June 2020, but only this week received a response from his private secretary – with no offer of a date or time.
“We have little time or interest in being fobbed off as we have been by previous ministers,” she continued.
“Travelling to The Netherlands in Covid times is unacceptably dangerous for our daughter’s wellbeing and the HSE have set a precedent by arranging importation and delivery of the medication. This arrangement must continue.”
Despite the legalisation of medicinal cannabis under The Medical Cannabis Access Programme in Ireland last year, only two products have been approved for use in the scheme, with many patients forced to travel to access their medicine.
“We need a permanent solution that works and that does not cost us, or the state, more than it should, said Vera.
“Right now, delivery is imperative and it must continue no matter what level of lockdown we’re under.”
She added: “Our priority is for our family members and our children who need security of access. Micheál Martin and Stephen Donnelly need to implement change as a matter of urgency.”
Cannabis Health has contacted the Department for Health and Stephen Donnelly’s office for comment.
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