Today marks the fourth anniversary of the law change on prescribed medicinal cannabis. Something I wish we did not need to mark, the only reason we remember it is because families are still being failed every day by this broken policy.
On the 1st November 2018, the then Home Secretary Sajid Javid MP, said the Chief Medical Officers report, clearly showed that there is enough evidence to allow the re-scheduling of cannabis based products to allow clinicians on the specialist register to prescribe them for any condition on the NHS.
Sadly, this law change was all show, there have only been three prescriptions issued on the NHS, two of them, for Alfie and a little girl in Northern Ireland were before the law changed.
The Government and clinician governing bodies have had four years to make this work. Four years to look at research in a new way, accepting the benefit of Real World Evidence, like has been done in other instances when medical products are needed for seriously unwell patients. Why are products made from cannabis dealt with in such a different way? Why are children like Alfie, who are at the end of the road, when it comes to treatments that the NHS can offer, being left behind. Why if a medication made from cannabis might help can it not be prescribed, as an unlicensed medicine like many others are. Did you know IV paracetamol is not licensed to give to children, yet it is prescribed every day within our NHS.
I am not saying we do not need research, we absolutely do, we need to understand what products and delivery methods are best for chronically ill patients, but in the meantime, prescribing this unlicensed medicine has and would save lives. Yet our Government is determined to turn its back on some of our most vulnerable children and families and ignore all the issues we face. They do not want to save the NHS millions of pounds by keeping patients out of hospital it seems.
Because of all I have been through with Alfie, and watching my family crumble because he was so ill, I cant give up on this fight. He is now well, and has been over two and a half years seizure free. That means something to our family and to him. That means he can learn, play, and make friends. It means I can work, spend time with friends and family and be a better parent and partner to Drew. This is a social and economic issue too and that is why, I wont give up on trying to give the freedom and joy I have found, to other families.
Thank you for your support for Alfie and for my family and for all the families out there that need you to see them.
If you want to help, please bring this issue up with your MP, your work colleagues, your friends and keep telling people that this policy is broken and we need to do so much more to make it work for very sick patients. We have seen a political landscape in recent months, of turmoil, infighting and ego, when domestic issues such as this are ignored, why are these people running our country when it seems they have no care for what happens to many of its citizens, especially very poorly children. We must hold them to account.
Please also share my petition with all your network so we can try and get to one million signers. This is when we will present the petition again to parliament.
With love and best wishes
Hannah and Alfie
xx
Picture credit to CLC Portraits