The saying goes that it's funny how time flies and the past few years seem to have passed by even more quickly than usual.

All across the globe there continue to be some hugely positive steps towards a more open and understanding approach to the way that cannabis can be utilized to help people suffering from a wide range of ailments and conditions, and it sometimes feels too good to be true when you look at the great effect cannabis is having for millions of people. The improving recognition and constantly evolving awareness of the medical community's (and their ruling governments, of course) attitude towards cannabis as a form of treatment has opened up new avenues for people, many of whom had previously found themselves losing hope of ever establishing a better standard of life because of serious illness or life-threatening conditions. For many of us, hearing about the dedication and success of people in a similar situation can be truly inspiring but the reality of actually accessing cannabis can be very far removed from what people had hoped for.

It's hard to believe that it's four whole years since we first heard of the traumatic experience of Charlotte Caldwell and her severely epileptic son, Billy, that they suffered at the hands of customs officials at Heathrow airport. As I'm sure you'll remember, Billy and his mother became key figures in the fight for cannabis as medicine in the UK after Charlotte shared their story. Billy had suffered endlessly with a severe form of epilepsy which left him ravaged by intense seizures, each of which could potentially be fatal. Doctors were at a loss when it came to finding a suitable treatment for Billy's condition and even told Charlotte that she would be wise to prepare herself for the impending loss of her beloved child. Unwilling to accept that there was nothing else that could be done, she instead invested her time and efforts into investigating any possible alternatives to what had been tried before.

By July 2016, Charlotte had managed to establish contact with a world leading epileptologist in Los Angeles and Billy was given a number of diagnostic tests. Following the analysis of the results he was referred to a medical cannabis expert who prescribed CBD-based, whole-plant, full-spectrum oil to begin microdosing. Once Billy was eventually moved on to a combination of this with a THC-A based cannabis oil,  it became clear that it was the only thing that could potentially help him. His once rampant seizures were massively reduced in terms of frequency and severity and suddenly he was able to live a much more comfortable life. In February of 2017, he was given his first NHS prescription from his GP in Northern Ireland but by May 2018 the doctor was instructed to stop prescribing to Billy.

Following on from her tireless campaigning (including walking from Ireland to London with Billy to raise awareness and funds to support her son's treatment), in 2018 the family had made arrangements for Billy to receive a prescription of medical cannabis from Canada which had been proven to be effective for Billy's type of epilepsy. Sadly, on the 11th June 2018, they were stopped at customs after getting off the plane with the cannabis oil. It was confiscated by officials regardless of the fact that they had documentation to prove that this was officially authorized by the government. Without his medicine, Billy's epilepsy was unable to be controlled effectively and violent seizures returned leaving him in a critical condition and close to death. Fortunately, after a doctor informed Sajid Javid of the dire situation, the Home Office authorized Billy to access his prescription of medical cannabis. This was a landmark moment in relation to the prescription of cannabis by doctors in the UK as Javid then announced that he was using Billy's case to change the laws surrounding medical cannabis.

In the time since, Charlotte has remained vocal and driven in her support for the cause of not only Billy but other families who find themselves in dire need of help. Once the dust had settled on the incident at customs, Charlotte challenged the Irish government and the governing bodies for the health service in Northern Ireland to recognize that Billy's case highlighted a number of other issues in the wake of him receiving his medicine on prescription. By October, there were issues with the effectiveness of his medical cannabis and they returned to Toronto to investigate what could be done. Whilst in Canada, the new laws in the UK were brought in to effect and this had the unexpected consequence of limiting Billy's access to medicine in the UK as it changed the limitations on issuing cannabis to children. Essentially, this meant that the family were exiled and could not return home as it meant that Billy would not be able to receive any treatment that worked.

After four months, a private doctor in the UK stepped in to offer a prescription which could legally be fulfilled, and the family returned home. During this time, Charlotte was in close contact with Matt Hancock who introduced a new branch of the NHS called the Refractory Epilepsy Specialist Advisory Service (RESCAS) in the hope of helping more children like Billy. After a lengthy process lasting more than 18 months, Billy eventually regained his right to an NHS prescription via RESCAS. In an incredible show of goodwill and good faith, the company who produced his £800-per-month medicine gifted it to the family at no cost throughout the entire application process.

While this was obviously fantastic news for Billy and his family, their travels and discussions with people they came to know online meant that Charlotte had become increasingly aware that these issues effected far more people than she had previously realized. Charlotte felt that she couldn't limit her knowledge and experience to only helping her own son, so she set her sights on creating a support network to advise and guide other families towards accessing the cannabis that could save their child's life. While this has been successful in its own right, one key issue continues to plague those in need: money.

Following in Billy's brave footsteps, almost 1500 NHS-funded prescriptions have been issued in the UK. As the medical community learns more about cannabis as a potential form of treatment we seen a greater level of confidence when it comes to suggesting its use. Unfortunately, there are families who have been authorized to use cannabis to treat their children but without the offer of funding. When you consider that the average cost of getting a prescription for cannabis filled independently costs up to £2,000 per month, it's easy to imagine how difficult this has made life for people who have to accrue impossible debts in order to help control the suffering of their children. Charlotte believes it is time for the systems to catch up with the needs of the patients and she celebrated the anniversary of the customs seizure by sharing information with those who need it most whilst calling on those responsible to do more to help.

Her key messages include references to the assistance which can be offered by RESCAS in informing doctors of the legitimacy of cannabis, but she also believes that there should be no limit on the maximum age of potential patients. Currently, the RESCAS remit is only available to those under the age of 18 and Charlotte wants it to be extended to adults. Moreover, she is calling for an end to the crippling financial burdens associated with treating people in this way and she urges anyone who needs help and advice to contact her and her associates. Perhaps the most significant note at this point in time is her plea to the manufacturers of medical cannabis to have mercy on those in need by 'gifting' them their medicine whilst their applications for NHS funding are processed, potentially saving desperate families £24,000 each year.

Over the years she has worked closely with experts in various fields along with politicians, the police and a multitude of people who want to offer their support and expertise in any way they can. There is no denying that cannabis has saved Billy's life and the testimonies of those who have worked with Charlotte and Billy pay testament to the incredible progress that has already been made. Sadly, for far too many people there are endless bureaucratic hurdles to navigate and the impact of our current cost-of-living crisis is not likely to make their lives any easier, even if they are successful in acquiring authorization to use cannabis to treat themselves or their children. Charlotte knows that they have achieved a lot in a relatively short space of time, but she hopes to help a lot more people as she continues to fight for a better tomorrow for all.

https://iambilly.uk/

Written and Published by Psy-23 in Weed World Magazine Issue 159