The parents of two-year old Jorja Emerson, who applying for her to be granted a licence for medicinal cannabis to treat epileptic seizures, have said that “nothing has changed” since the Home Office announced doctors would be permitted to prescribe ‘cannabis-derived’ medicine.
In a post on Facebook, Jorja’s parents Robbie and Carly said: “Real change will only come when the Hospitals across the UK accept medicinal cannabis as a viable alternative to pharmaceutical drugs.”
They listed some of the responses that parents from Families4Access have had from hospitals when they have asked for an application to be made to the Home Office’s ‘expert panel’:
“Your child has the wrong type of seizures.”
“Your child needs to be in intensive care and only then we will consider Epidiolex.”
“THC is too Dangerous on a growing brain.”
“Pharmaceutical drugs are a better option, medicinal cannabis does not work.”
“You need to have been abroad first and tried it before we can put you to the panel.”
Jorda’s parents are keeping in regular contact with nine families across the UK and each one is fighting hard to get access.
They said being respectable to authority gets patients nowhere. “You can comb your hair and polish your shoes but if the hospital says no then the hospital says no!”
Outside of three high profile cases (Billy Caldwell, Alfie Dingley and Sophia Gibson) no one has been granted access in the UK.
Jorja’s parents said the rescheduling of cannabis-derived medicine would make “no difference if it happened tomorrow”.
“This is clinician led, and until people understand that the issue is with the Hospital Trusts and clinicians, then we will be still be here in this position in December and still no one will have been approved. Rescheduling only gives the clinician the opportunity to prescribe a medication, it does not mean they will – like many other cancer drugs that are legal but are not prescribed.
“So why are the hospitals not prescribing it and putting people to the panel? Possibly because of insurance – it states that the Trust has to take full responsibility. Possibly because they just do not know enough about medicinal cannabis to prescribe it. Possibly because panels like the Paediatric Neurology Society have written a letter telling people that it does damage on a growing brain. Possibly because nobody wants to upset the Pharmaceutical companies. Possibly because some of them genuinely do not know that they can put a patient through to the panel without being in intensive care or having a TV crew watching. Possibly because they just genuinely think it’s hocus pocus medication that does not work!
“But whatever the reason, it does not change the facts. And the facts are cold and hard hitting – no one in the UK has been put through the panel to date, that nine families in our group from opposite ends of the UK can not get access.
“We have been personally fighting the Trust for eight weeks to get access through Human Rights solicitors, and they continue to write rubbish and false statements and lie and worm and squirm around the topic as our two-year-old Jorja continues to suffer. This is the reality of what parents across the UK are dealing with.”
Robin and Carly said families would “unite and fight for access together”, adding: “We will continue to fight until such a time that proper UK guidelines are formed by the UK Government in order to prescribe medicinal cannabis to patients, until it is properly recognised as a medical drug alternative to traditional deadly pharmaceutical drugs.
“This must become health-led, hospitals and the trusts must be open to medical negligence if they continue to ignore the evidence and continue to block patients access to medicinal cannabis.”
The experience of Jorja, Robbie and Carly shows that the Home Office is doing little more than paying lip service to patients who need cannabis as medicine, while underfunded Hospital Trusts are clearly under pressure not to spend on the prohibitive costs of prescription.
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