Medical Cannabis under Prescription: Children with Epilepsy

Ian Byrne Excerpts

Wednesday 3rd November 2021 Westminster Hall

[Ian Byrne (Liverpool, West Derby) (Lab)]

It is an honour to serve under your chairship, Ms Bardell. I thank the hon. Member for South Leicestershire (Alberto Costa) for securing this incredibly important debate and for his extremely powerful contribution. I am also grateful for the other contributions that we have heard, especially that of my great friend, the hon. Member for Middlesbrough (Andy McDonald).

I pay tribute to those of my Liverpool, West Derby constituents who are living through the devastating consequences caused by the lack of access to medicinal cannabis. I pay tribute to the families, their friends and all those in our community who have campaigned relentless for those people. They should not have to fight that hard and they should not have to endure so much. It was a real privilege to meet some of the campaigners at the End Our Pain event. One of my constituents wanted to be there, but it is extremely difficult for her to be away from her child at the moment—their time together is so precious.

I was proud to sign End Our Pain’s letter to the Prime Minister and Secretary of State yesterday, which asked for immediate action to find a way to help the families with children with severe epilepsy, who continue to be denied NHS access to medical cannabis, as we have heard so powerfully so far. I know that the Minister was listening intently, and I can see the empathy in her eyes. I urge her, on behalf of my constituents, to take immediate steps and do whatever it takes to help these families. I ask that the Minister intervene to help adults who require access to medical cannabis under NHS prescriptions. I spoke to some families yesterday. There are siblings going through the same unimaginable pain. I am happy to discuss this at any time with the Minister.

The law was changed on 1 November 2018 to allow access to medical cannabis under prescription. This brought hope to many families. In my first meeting after becoming an MP in 2019, I spoke to families and they had an air of optimism. They thought there was change coming, but the reality three years on, as so eloquently put by the hon. Member for South Leicestershire, is that only three NHS prescriptions have been written for whole-extract cannabis oil. Families are having to raise £2,000 a month to buy this medicine privately.

We need to remember that we are in the middle of a pandemic, so funds that those families had raised previously had gone. The people I spoke to yesterday were talking about mortgaging or selling their house, doing whatever they can to raise the money. Tragically and heartbreakingly, there are families who believe that this medicine will help their child, but they will not put the child on it because of the limitations to starting the process and having to take the child off, as well as the financial issues. I cannot imagine what is going through their minds.

My constituent Lauren wrote to me last night. Although I cannot do full justice to everything she put in the email, I would like to impress on the Minister just some of what she is going through and what she is asking from the Government. She says:

“My time together with my son is precious, and I shouldn’t have to keep fighting. I want to make memories for whatever time we have left. In March NICE reiterated their guidelines about prescribing medical cannabis and these guidelines are certainly not being enacted. The Health Secretary must help now before it’s too late. Allow GPs to prescribe, and if that can’t be done instantly, then establish an emergency fund for the children already benefiting from private prescriptions.”

Lauren is a truly awe-inspiring mum and campaigner, like many I met yesterday. Her asks are simple and need to be listened to. Families are being pushed from pillar to post, and this injustice cannot continue. The interests of patients should be put first, and the system must start delivering the enormous benefits that this medicine can offer.