I AM Campaign

Charlotte Caldwell calls for medical cannabis manufacturers to “put their money where their mouth is” and offers to help families in need

Four years on from the confiscation of her son Billy’s medical cannabis at Heathrow Airport, patients are still going without much-needed cannabis-based medicines, needlessly destroying quality of life for many vulnerable patients and risking unnecessary deaths.

Charlotte Caldwell, mother of Billy, the epileptic boy who changed the law on medical cannabis and was the first patient to be prescribed the medicine by the NHS, has today called for manufacturers to ease the financial burden faced by families seeking NHS-funded medical cannabis treatment. Charlotte has also offered to provide free advice to families currently in situations like those experienced by her and Billy. While medical cannabis has been legal in the UK since November 2018, the process for obtaining an NHS-funded prescription is cumbersome, forcing many families to resort to expensive private prescriptions or even the black market.

Four years ago today, Billy’s medical cannabis was confiscated by tearful customs officers at London Heathrow Airport after Charlotte and Billy returned from Canada, where they had travelled to obtain his life-saving medicine after his GP in the UK was forced to stop prescribing it. Within days, Billy, as a sufferer of severe epilepsy, was once again experiencing violent seizures and rushed to the Chelsea and Westminster Hospital in London where his NHS doctor notified the Home Office that Billy’s condition had moved to life-threatening.

Thankfully, Sajid Javid, the then Home Secretary, returned Billy’s medicine the next day and later that year, in November 2018, he changed the law to allow patients to be prescribed medical cannabis by specialist doctors, albeit with many hurdles and limitations in place.

Nearly four years later, Billy’s is one of 1,486 NHS-funded prescriptions for medical cannabis. Although many of these are likely to have been repeat prescriptions, 537 were issued by NHS doctors as Specials, showing the growing acceptance of medical cannabis within the NHS. It is estimated that up to 60 paediatric epilepsy patients are unable to get NHS-funded medical cannabis and are allegedly paying £2,000 a month for a private prescription. More widely, 1.4 million people are using black market cannabis to treat a medical condition. By offering her time and lived experience to affected families, Charlotte hopes they can avoid the same hurdles that Billy faced in his six-year quest to receive NHS-funded medical cannabis.

Today, four years on from the lowest point in Billy’s journey, Charlotte wants to inform in-need families that:

1.  A framework does exist, but is only available to those 18 years old or under
• The Refractory Epilepsy Specialist Clinical Advisory Service (RESCAS) was set up in 2020 to support paediatric neurologists when considering medical cannabis (and other new treatments) in cases of intractable epilepsy; its impartial recommendations are passed onto patients’ own doctor, and it was through this route that Billy had his NHS funding reinstated in October 2020.
• RESCAS’s remit is limited to patients under the age of 18; Charlotte Caldwell is calling for this to be extended to all ages.
2. It is estimated that up to 60 paediatric epilepsy patients in the UK are being privately prescribed medical cannabis
• Charlotte is encouraging patients in need of NHS funding for their medical cannabis prescription to get in touch with her (contact details below) for advice on the best way to navigate the bureaucratic hurdles involved in obtaining an NHS funding
3. In the absence of sufficient NHS provisions, private prescriptions are partly fulfilling patient needs, but at a huge personal financial cost ofan alleged £24,000 per year
• To urgently ease the financial burden faced by patients, Charlotte is inviting medical manufactures to gift paediatric epilepsy patients their medicines while they are going through the RESCAS process. It is through a similar arrangement that Billy was initially able to obtain his medicine prior to the approval of an NHS reimbursement.
Charlotte Caldwell said: “While I am delighted that there is now a route to affordable and reliable medical cannabis treatment in the UK, I am saddened that it remains a complex and, at times, opaque process. Four years on from having Billy’s medicine confiscated from me at Heathrow Airport, I want to share the learnings from my experience with other families, for whom the journey need not be so fraught with complication, heartache, and vast personal expense.
“I am also calling on medical cannabis manufacturers, who do so well from private prescriptions, to ‘put their medicine where their mouth’ is by gifting medical cannabis to patients awaiting NHS funding. This would immediately relieve a huge financial burden faced by patients and their families, during which time I hope to help them navigate the complicated approval process.”
Dr. Jones, a consultant Paediatrician and part of Billy’s multidisciplinary medical team, commented:

“As a doctor, a parent, and a human being, one cannot fail to be stunned by the history of Billy’s relentless and violent seizures, as well as his extraordinary improvement when given medical cannabis. Billy has not only survived but is now thriving, in large part due to the experts at RESCAS supporting his multidisciplinary care and medical cannabis funding needs.

Oversight by RESCAS guarantees that patient assessments are made by the most assiduous and specialist paediatric neurologists in the country. Their expert insight enables patients to enter a clinical care pathway for medical cannabis, thereby ensuring best practice is always followed during treatment. The RESCAS route is available for hundreds of children and young people, just like Billy. Cannabis-based medicines can be lifesaving and life-enhancing, and RESCAS’s care pathways can profoundly optimise a child’s seizures and quality of life, while freeing families of the burden of funding medical cannabis themselves.”

Matt Lawson, https://www.thecannaconsultants.co.uk/

If medicinal cannabis manufacturers had invested funds into a fit for purpose study in children with epilepsy instead of funding partners to continue to lobby and criticise the government and medical profession we could have been in a much better position four years on. Those vulnerable and chronically ill children would most likely be having their medication funded by NHS. Instead, a two-tier system has evolved with medicine for the rich but not the poor. 

Steve Oliver, https://www.thecannaconsultants.co.uk

Many should be hanging their heads in shame and a little scratching of the surface exposes a lobby for recreational use and no commitment to the clinical trials that are required for not just children but those of all ages. Self-medication with cannabis is an entirely different beast to real clinical evidence. We are at the willow tree position of the aspirin and while many wish to chew the bark, drink the sap and smoke the leaves, there is an opportunity to truly unlock the medicinal benefits of this incredible plant. We have the opportunity to understand why it helps so many and we owe it to patients to produce an affordable, consistent and high-quality medicine.

Patient story – Mike Machin, Father of Joseph Machin

Joseph has had Lennox-Gastaut Syndrome, a life-threatening form of epilepsy, from birth. Now aged 22, he has tried countless medications. None of them have worked; many made his seizures worse. 

After reading Billy Caldwell’s story, we discussed medical cannabis with Joseph’s epilepsy specialist in Hull, who was totally against the idea, stating there was insufficient clinical trial data to justify a prescription. As a last hope, we contacted Charlotte Caldwell, who helped us to find a private clinic to prescribe the medical cannabis at a cost £900.00 per month. We made the decision to self-fund the prescription for Joseph, taking on significant credit card debt, in the hope of it giving him some relief. 

I can honestly say that the improvement has been staggering. Joseph went from having around 150 severe life-threatening seizures a month, to 15 to 20 seizures a month.  His seizures are shorter, and his recovery time is much faster. He is much calmer and his sleeping pattern has dramatically improved – a first in 22 years.  

This medication has been life-saving. However, NHS support is not available due to Joseph’s age. 

We struggle to find the money to self-fund: Joseph’s mother and me are living on one meal per day just to continue funding Joseph’s medicine. We never use our heating, and our other two children – aged 14 and 12 – miss out on important experiences like days out with their friends. This treatment is already available on the NHS for under-18’s – why shouldn’t this be extended to adult sufferers like Joseph?

Patient story – Cheryl Keen, Mother to Charlie Keen

Charlotte (Charlie) is 33yrs old and has undiagnosed severe learning disabilities. She developed seizures around age 16. We don’t know why: maybe due to several bad falls or puberty. What started off as 3 seizures in the first year gradually deteriorated to a seizure every 3-5 days. Each seizure knocked Charlie out for days on end, and physically debilitated her for days afterwards. We spent all our time in “rehabilitation” from each seizure, just trying to get back to “normal” before the next one hit – and mostly failing. 

The seizures had a drastic effect on her demeanour and well-being, and gradually took away her ability to walk. We tried many anti-epileptic drugs over several years, which left her lethargic, even unresponsive at times; severely agitated, upset and unable to sleep through the night. 

I started researching medical cannabis after seeing Billy Caldwell’s story on TV. In Jan 2020 Charlie became the first adult epilepsy patient to obtain a private prescription for medical cannabis in the UK via a private clinic. Her prescription consisted of Broad-Spectrum CBD, and a minute amount of THC to be added in after titrating the CBD up to a reasonable dose if the seizures were still unmanageable. 

We noticed significant improvement with this. However, I was unable to work due to caring for Charlie 24/7 during the pandemic. As I received no financial support whatsoever from the government, the cost of around £1200 per month became nothing short of impossible. 

In spring 2021, Charlie’s NHS Neurologist managed to secure her an NHS-funded prescription for Epidiolex. Charlie has had incredible results, through a combination of this and a small amount of THC via her private prescription. 

In addition to the reduction in her seizures – by at least 50-60% – her demeanour has improved greatly. She is far more aware, far cheekier, and she no longer suffers from the severe distress she used to in busy, noisy public places. We never used to go shopping, or even to a supermarket, due to the distress it caused her. Now she appears to love it all. 

The THC private prescription costs £80.00 per month. To some people that is not a lot of money, but to me, as a single mother, who cannot work due to caring for Charlie, it is a huge amount. Following the rise in the cost of living, I have had to cut back on my own food intake and find myself living on boiled eggs alone, just so as I can continue to fund the medication that is undoubtedly keeping Charlie well. 

I am ever so grateful to the NHS for providing funding for her Epidiolex, but she also needs the THC funded. I join Billy and Charlotte in their call to Sajid Javid to extend RESCAS to over 18 year olds, so Charlotte can continue to live life to the full.