The Eleventh Hour, By Psy-23

Back in 2018, Billy became the first UK patient to be prescribed medicinal cannabis following an extensive and intense campaign, led by his mother, which resulted in the Home Secretary at the time, Sajid Javid, announcing a change in policy that would allow specialist clinicians to prescribe cannabis-derived medicines. Due to Billy’s severe epilepsy, he was deemed to be a special case and the proven positive impact that cannabis had on his quality of life was incredible.

In November of that same year, Charlotte and Billy went to Canada to undergo a new medical treatment involving cannabis as therapeutic medicine and, consequently, had the funding for his prescription in the UK discontinued. This meant that there would be no funding available to ensure a continued safe supply of medicine to keep Billy alive.

As a result of this unwarranted change of mind by health authorities in Northern Ireland, Charlotte Caldwell launched legal proceedings, which lasted almost 15 months, to challenge the decision that defied Billy from accessing the medicine he rightly deserved. Additional frustrations added insult to injury when Billy’s mother realized that the existence of the Refractory Epilepsy Specialist Clinical Advisory Service (RESCAS) which had been created to deal with this particular issue had not been effectively communicated with authorities in Northern Ireland. Understandably, this had the effect of delaying essential discussions which would pave the way for Billy’s future. Having been assessed at Great Ormond Street Hospital when funding was withheld, it was concluded and adamantly reiterated by the specialist RESCAS panel that it was essential for Billy to be provided with the prescription he required with immediate effect. In response to this recommendation, legal proceedings were dropped.

In spite of what seemed like a landmark moment in Billy’s story, the reality of the situation was that the Caldwells now found themselves in a state of limbo. His current prescription, which allows him to access the medicine he requires, was due to expire in September of this year and there had been no indication of when this would be reinstated. Regardless of the recommendations of the RESCAS panel, they are seen as nothing more than recommendations until they are put into action and brought to fruition.

On September 7th, Charlotte Caldwell wrote an open letter to the current Secretary of State, Rt Hon Matt Hancock MP, and Minister Robin Swann pleading with them to make good on their promises before it’s too late. In the letter she reminded them that the creation of ‘RESCAS [was] to help doctors in the NHS deal with complex cases such as Billy’s. [She] applaud[s] [them] for allowing the most eminent pediatric neurologists to convene to consider how best to help young people like [her] son’ explaining that ‘it would have been inconceivable only two years ago’.

She went on to outline the issues surrounding the fact that ‘one month after receiving the report [she] still [has] not received indication that anyone inside the government in Northern Ireland has done anything at all to implement its recommendation.’ Her frustrations and concerns as a mother are clear to see when she goes on to state that ‘RESCAS recommendation should have elicited an urgent response’ but she was instead left wondering and waiting to see if those responsible will make good on their promises. Pertinently, she posed the question: ‘What is the point of initiating a panel such as this, then receiving its clear recommendation and doing nothing in response?’

Asking them to consider their roles ‘not only as politicians […] but also as parents’, she outlined her expectations ‘to restore Billy’s prescription and care plan urgently, as Billy does not have the luxury of time’ explaining that ‘there was never any moral reason why the NHS withheld funding from Billy, [but] now no legal or clinical barriers exist’ either.

In a shocking revelation, Charlotte also revealed to us that one of the only outcomes from her successful RESCAS appraisal came in the form of a referral to Social Services who planned to visit her to investigate issues surrounding the safeguarding of her child. As you can imagine, this type of knee-jerk response only added insult to injury and Charlotte explained that she was ‘astonished that those responsible for Billy’s care found time to make a futile referral to the children’s safeguarding services, one that was instantly dismissed by social services, instead of putting in place a shared care plan for him.’

It’s hard to imagine what impact these unwarranted and hurtful referrals have had on someone who is only concerned with doing what’s best for her child, yet Charlotte Caldwell remained resolute in the face of adversity. She issued an ultimatum to both Matt Hancock and Robin Swann to personally intervene in this situation by Friday September 11th to ensure that Billy’s health is not put into further jeopardy because of their sluggish response and lack of appropriate action. In her own words: ‘ I find the health authorities disregard for my son’s health and wellbeing unbelievable especially in light of the recent recommendation of the RESCAS panel that his medicine be continued.’

Thankfully, her unfaltering dedication and drive to do what is best for her child for the past 15 months paid off and less than two days later, on September 10th, she received confirmation from the Northern Ireland Health Minister, Robin Swann, that Billy’s prescription is to be reinstated and fully funded by the NHS for the next four weeks. During this interim period, it has also been promised that a new shared care plan will be put in place to provide continued care for the foreseeable future.

This is wonderful news for Billy and Charlotte hopes that this paves the way for the future success of other patients in the UK who have, thus far, found countless hurdles blocking their path towards legally obtaining cannabis as medicine.

We at Weed World wish Billy and his family all the luck in the world for the future, after this long and arduous affair, and hope that these systems now support them efficiently and effectively.

Published and Written by PSY-23 in Weed World Magazine Issue 148

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