My fight for medicinal cannabis against a ‘wild west’ of private providers ...Middle East

Patients are being forced to rely on a “wild west” of private medicinal cannabis providers with a lack of research hampering families in getting the medicine they need, a campaigning mother has said.

Charlotte Caldwell, whose high-profile media campaign after her son Billy’s medicine was seized at Heathrow airport seven years ago led to a change in the law, said a lack of NHS availability of whole-plant medicinal cannabis is leaving families at the mercy of rogue operators.

As a baby, Billy suffered from a dangerous form of epilepsy that caused prolonged or multiple seizures – as many as 300 a day – but is now “thriving” according to his mother, enjoying activities like horse-riding and swimming, after securing a lifelong supply of whole-plant medicinal cannabis.

He is one of less than five people who receive the unlicensed treatment on the NHS as it contains THC, the chemical compound in cannabis that makes you high.

Caldwell says a lack of research is preventing tens of thousands of other patients from accessing similar treatment.

“It is seven years since Billy changed the law and there is no research being carried out in the UK in whole-plant medical cannabis,” Caldwell told The i Paper from her home in Castlederg, Northern Ireland.

“There are two trials starting this year – one by the British Paediatric Neurology Association for adults and children with epilepsy, which is fantastic and government-funded. However, we have tens of thousands of patients up and down the country with a wide spectrum of conditions – pain, ADHD – getting private prescriptions from around 50 clinics, the majority of them adults.

“They are receiving around 350 different products and they are unlicensed medicines: so there is no data behind them to say they are safe.”

Who gets medical cannabis on the NHS?

Medical cannabis is a broad term for any sort of cannabis-based medicine used to relieve symptoms, typically for adults and children with rare and severe forms of epilepsy, those with nausea caused by chemotherapy and those with muscle stiffness and spasms caused by multiple sclerosis (MS).

Only specialist clinicians can prescribe it. The NHS has handed out more than 24,000 prescriptions for licensed cannabis-based medicines since it was legalised in November 2018.

The types of medical cannabis available on the NHS are:

Whole-plant medicinal cannabis, which Billy is prescribed, is legalised for use in the UK but is not widely prescribed on the NHS.

As such, the private market has seen a rise in patients – a medical cannabis clinic in Westminster, Mamedica, said it had seen the number of patients increase from 250 to 2,750 in 2023, the BBC reported last year.

Caldwell believes manufacturers are shying away from research into whole-plant medicinal cannabis products, high in THC, due to the fact they are already selling the medicine on the private market.

This means treatments such as Billy’s remain unlicensed and therefore virtually impossible to get hold of on the NHS.

The I Am Billy Foundation that Caldwell now runs is inundated with stories from families who are struggling to access the right medicine or being forced to pay thousands of pounds for a private prescription.

Last year, private cannabis prescriptions doubled – reaching nearly 180,000 – according to the Care Quality Commission (CQC).

Experts say this is partly due to a crucial error in the medicinal cannabis legislation as the Bill made no distinction on the type of cannabis product which could be used. Instead, it only stated that the cannabis must be produced for “medical purposes”.

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Caldwell says this has provided a loophole for private clinics to sell cannabis, often in the form that is illegally sold on the street as a recreational drug.

“At the Foundation we hear two main problems on a daily basis: inconsistent supply of medicine that works for them, at a cost of hundreds of pounds a month from a private provider, and the quality of product,” Caldwell said.

“Patients are receiving medicine with mould from private providers, with no certificate of analysis that you would get from any NHS prescription, which states what is in the medicine and what potential side-effects you may get. So nobody knows what’s in some of these products. There is a poor standard of healthcare and follow-up support for many patients.

“The biggest barrier to patients getting an NHS prescription is the lack of research, trials and studies and the lack of consistent, quality supply of medicinal cannabis.”

Patients paying up to £2,000 a month

Such is the demand for medicinal cannabis that companies have even set up cannabis factories in the UK, each capable of growing millions of pounds worth of the plant every year. Estimates suggest the medical cannabis industry in the UK is now worth about £400m.

“Patients up and down the UK are paying anything from £200 a month to £2,000 a month. What we thought was going to be a lifeline for thousands of patients across the UK has really turned into a ‘wild west’ of bad practice,” Caldwell said.

“Patients deserve a medical cannabis system that puts safety andf science and compassion first, before commercial gain. We risk undoing years of advocacy and progress.”

The Government has asked the Advisory Council on the Misuse of Drugs to review the impact of the 2018 changes to the law and says it will give careful consideration to its findings.

NHS England and the National Institute of Health and Care Research has agreed over £8.5m in funding for two world first clinical trials relating to the use of cannabis-based products for medicinal use for the treatment of drug-resistant epilepsies and neuropathic pain due to chemotherapy.

A Department of Health and Social Care spokesperson said: “The NHS funds licensed cannabis-based medicines where there is clear evidence of their quality, safety, and effectiveness. It is the responsibility of manufacturers to seek the proper approval before a medicine can be made available for NHS patients.”

‘I was hounded until I refilled expensive prescriptions’

Ex-prison officer Callum Jones, 27, from Manchester has ADHD, PTSD, anxiety and depression. At one point, he was prescribed 12 different types of antidepressants as well as the highest legal dose of Concerta XL – a form of methamphetamine.

“I was being sick daily at school, struggling to function, and when I spoke up about it, I was told it was normal. Eventually, like so many others, I turned to black market cannabis to self-medicate because traditional medical treatments and services in this country were failing me,” he said.

“That changed in 2018 when I was able to access cannabis medically. For the first time I felt like I had some control over my life, but finding that care wasn’t easy.”

Jones now runs CannCare, a charity which provides advice on medicinal cannabis access. He said that accessing medical cannabis privately left him paying hundreds of pounds for multiple appointments and prescriptions but left him with “poor quality medicine”.

“This nearly broke me mentally – they would not stop calling me asking me to refill my prescriptions and schedule appointments with their clinicians. That’s unfortunately how some clinics treat vulnerable patients in this country – as pay cheques, not people.”

“The cost of most medications remains unaffordable for many. Patients who finally find a treatment that works still have to fight on a regular basis to access it.”

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