July 23, 2018


Charlotte Caldwell, mother of epileptic Bill Caldwell, has written to Northern Ireland Chief Medical Officer Dr Michael McBride asking him to provide clarity over the workings of the Home Office medicinal cannabis expert panel after experiencing weeks of chaos, confusion and obfuscation in Northern Ireland. 

"There's no escaping that I have been the most high-profile applicant, on behalf of my son Billy, yet I'm not actually clear as to whether Billy's application has been heard. The process can only be described as being chaotic and Kafkaesque: I have asked several executives at both Belfast Trust and the Northern Ireland Department of Health as to what the current status of Billy's ongoing medication provision is: we have 23 days' worth of meds left, and we don't yet know what will happen after that. 

"Quite simply, Michael McBride has ignored every single communication we have sent him. Somebody has to get a grip. Now is the time for whatever is blocking clear communication to be put aside." 

Charlotte Caldwell wrote: 

"Dear Dr McBride, 

"I am writing to you as the mother of a child with profound special needs, and on behalf of Families 4 Access, a campaign group of parents in the same position. 

"I am inviting you to consider the contents of this communication in your position as Chief Medical Officer for Northern Ireland but also as the chair of the expert panel convened by Home Office Minister Nick Hurd MP to consider applications made by senior clinicians to prescribe cannabis-based medicines. 

"The creation of the expert panel was announced in the House of Commons 48 hours after I was granted an emergency licence which allowed medicine - confiscated by UK Border Control four days earlier - to be ferried from the vaults of the Home Office into the hands of paediatric neurologists treating Billy at the Chelsea and Westminster Hospital. 

"This medicine, which has been subject to clinical trial, was prescribed at Sick Kids in Toronto, the second largest paediatric research hospital in the world. 

"Billy's condition, and the consequent media attention that my campaign generated, always made it likely that he would be an early applicant to the panel, indeed, that was the express wish of the clinicians treating him in London. 

"Three weeks ago my doctor at Chelsea and Westminster Hospital handed me a printed copy of an email exchange between senior clinical staff there and their equivalents at the Belfast Trust. The intent was clear; that the Belfast Trust would make an application on Billy's behalf to the expert panel you chair. 

"On this basis I decided to return to Northern Ireland leaving behind the exemplary care Billy received at the Chelsea and Westminster Hospital but also the staff there who were 

open and engaging and fully prepared to do their utmost to make sense of often confusing administrative processes and guidelines. 

"I trust it is not too late to deploy a World Cup metaphor but this has been something of a game of two halves. In London, openness, speed, compassion and empathy were the order of the day notwithstanding the fast-moving backdrop. It felt that people were doing all they could to move things on and to get to grips with the complex situation. 

"I am afraid the contrast with my experiences in Northern Ireland could not be greater. 

"Back here confusion and obfuscation reigns. I still really don't know what has happened to the Belfast Trust's application to the expert panel. Last weekend I sought clarity from numerous officials regarding its status. Every simple question posed was responded to by a complicated and evasive answer. 

"It seemed that the deadline for making a submission to your first panel - 1230pm on Thursday, July 12, 2018 - was missed, but no one could admit it. There was then some talk of an emergency reconvening of your panel last Monday, July 16, 2018, but that was never confirmed. I have since received various calls often with contradictory information. At no point have I received a simple email setting out the status of the Belfast Trust's application on behalf of Billy. 

"By last Friday night this reached farcical levels when having made the personally reasonable request to administer Billy's medicine at home - instead of having two nurses make two x two hour round trips a day to administer it - I was asked to apply for a possession licence which I was told could be downloaded via the Department of Health website. 

"No such application form exists. Indeed the Chief Executive of the Belfast Trust, Martin Dillon, was adamant that this was the required application to be used. This application makes multiple references to business information required and none at all relating to patients and conditions. 

"I appreciate that this is a very new process and that it has been initiated with some haste, but as things stand the application process is untenable without a significant investment in staff training, the appointment of dedicated managers to oversee the administration of licences, and an unequivocal commitment to transparency with parents and patients alike. 

"As of today I have 23 days' supply of Billy's anti-epileptic seizure medicine left and despite news of various licences being granted I am unclear how Billy will be treated thereafter. 

"I am very clear that I am not alone. Families 4 Access has already shared similar stories with the Home Secretary, and face-to-face with Nick Hurd on his invitation. 

"The government's commendable response last month is now being exposed to reality, and it is turning into a Kafkaesque one for me and others. 

"As the chair of the expert panel and in your role as Chief Medical Officer for Northern Ireland I urge you to urgently intervene on behalf of the parents of very sick children to ensure that the process you oversee is henceforth expedited by competent people in a spirit of openness. 

"It is time to bring this chaos and confusion to an end."