“We’re asking for quality of life for our children” – medical cannabis report reveals desperation and anger

A new in-depth medical cannabis report from Drug Science highlights the anger and desperation of families experiencing the system in the UK.

The detailed report interviews 11 families who were participants recruited through the charity, End our Pain and its spokesperson, campaigner Hannah Deacon. The patients discussed a broad range of issues associated with medical cannabis including access, policies and its benefits.

The four most prevalent issues were concerned with regulation, benefits of medical cannabis and anti-epileptic drugs (AEDs). Patients also highlighted their anger and desperation in the relation to current policies.

Issues related to regulation and policy-making of medical cannabis in the UK are a major concern to families. Parents reported that they felt they were fighting an ongoing battle while dealing with the severe ill health of their children.

“It’s been a battle to get the medicine and it absolutely shouldn’t be”.

The difficulties lie in the current scheduling of medical cannabis as an unlicensed medicine and the challenges for clinicians in prescribing it. Even when clinicians have been supportive and attempted to prescribe, their efforts were blocked by hospital trusts. This makes it almost impossible to receive an NHS prescription for medical cannabis. The report showed only two of the patients are exceptions to this.

Confusion around medical cannabis guidelines

The parents viewed the current guidelines by the British Paediatric Neurology Association as too strict and that they prevent doctors from prescribing. They also added that this caused confusion around the guidelines while adding an unnecessary layer to the challenges of prescribing.

“They’ve said in the guidelines it states that I can’t do it because the guidelines won’t let me but as I said for the shared care agreement with your GP it doesn’t state it has to be an NHS paediatric neurologist, it just states it has to be a paediatric neurologist on the specialist register. At the moment I’m still emailing back and forward saying they are wrong about the guidelines.”

When individual doctors who were supportive attempted to help, they could be ostracised by colleagues.

“He was trying to support us with the cannabis but he was threatened with disciplinary from his supervisors and his trust.”

The problem of cost

As a result of the difficulties in prescribing, patients had to be treated privately at huge financial costs. The average cost is estimated at £1,800 per month which places huge financial strains on families. Two families had to sell their homes in order to continue accessing the treatment.

The Covid-19 crisis also placed an extra burden on families as it prevented offline meetings and as a result meant families turned to online events such as raffles to fund their children’s medicines.

The families were unsurprisingly, extremely disappointed with the current regulations and policies. After the legalisation in 2018, many of the families assumed they would have easier availability to treat their children. This has led to anger and resentment towards regulators, policy-makers and urgent requests for wider access.

Many of the parents said the CBMP option they were offered, which was usually Epidyolex, was not suitable to treat their child’s condition as it did not control their seizures. Many of the parents stressed the need for full-spectrum products and the importance of making a wider variety of medical cannabis products available. All of the parents agree that swapping from one medicine to another may not work was not a risk they were willing to take.

Two families had had to swap their Bedrocan products to another CBMP which had a negative impact on the seizure frequency of their children. This was due to importation issues from Holland. The cost and challenging regulations meant that families often travelled to the Netherlands for help. While some families were able to live short term in the country, others brought the medication back to the UK aware that this may cause a considerable legal risk.

This led to further psychological burdens for families. One family who travelled was refused treatment as “the doctor didn’t want to continue prescribing for all these English children”.

Anger

According to the medical cannabis  report, many of the families felt resentment towards the current system.

One commented: “It makes me so mad because they need to live a life in our shoes, you know, and then you know, I thought they won’t come back and say you can’t have it. You know when you find the medicine, it could alleviate some of that and it gets refused.”

While another said: “We knew we were coming to the end of the drugs and the neurologist said to us at that point my truck is empty. There’s nothing left to try.”

All families had tried a broad variety and different combinations of various AEDs without sufficient success and indeed, with major side effects, after which some families were asked to start a new cycle going through all the medications again.

Families felt their anger and desperation were heightened by challenging relationships with doctors. They felt frustrated and rejected as they weren’t listened to and their were anxieties dismissed.

This lack of trust in doctors also included the government and the pharmaceutical industry. Some parents raised active distrust that doctors did not have their children’s best interests at heart.

“They are supposed to have the best interests of the patients at heart and they do not, absolutely not- they’ve got the best interest of the pharmaceutical industry at heart- simple.”

Read the full report here

Read more: New patient group, NOPAIN to focus on addressing medical cannabis access issues