Medical Cannabis under Prescription: Children with Epilepsy

Andy McDonald Excerpts

Wednesday 3rd November 2021 Westminster Hall

[Andy McDonald (Middlesbrough) (Lab)]

It is a pleasure to see you in the Chair this afternoon, Ms Bardell. I pay tribute to the hon. Member for South Leicestershire (Alberto Costa) for securing this debate, for his articulate and forensic analysis, and for the coherent account we have heard from him.

It is three years since we were able to celebrate the change in the law that should have helped the children and families we have been hearing from this week. Sadly, after three long years, they are no further forward. As we have heard, since 2018, only three NHS prescriptions have been issued for the type of medical cannabis that was shown to be so life-transforming for the likes of the then six-year-old Alfie Dingley, whom the hon. Member spoke of earlier. It was Alfie and his mum who were at the forefront of this campaign. They and many others achieved the change in the law that they had all worked so hard for.

Heartbreakingly, while the law has changed, it has not been properly implemented and utilised for those crying out for help. Families have been left at breaking point emotionally and financially, having to find up to £2,000 a month to pay privately for this medicine. I cannot begin to imagine how on earth these loving parents cope with such massive monthly costs— £2,000 a month is the equivalent of an additional and very substantial mortgage. In fact, it would dwarf many people’s mortgage payments. Not even we MPs on over £80,000 a year could cope with that. How on earth can we expect those families to withstand such huge costs, simply trying to keep their children alive and free from the ravages of seizures by accessing a known and proven prescriptive solution?

That these families cannot secure NHS prescriptions for their children, when it has been proved beyond any doubt that cannabis is efficacious, is a monumental shame. The campaign group that the hon. Member mentioned, End Our Pain, rightly said that this saga has dragged on for far too long. Those families have petitioned, marched and campaigned with such dignity. They should not and must not be ignored.

The new Secretary of State for Health and Social Care was pivotal in the change in law when he was Home Secretary. I urge him and his Department to give effect to that change and remove all barriers to getting medical cannabis to those patients. The campaigning families will do whatever it takes to help Government remove any barriers to doing the right thing and give them and their loved ones access to medical cannabis as they would any other therapeutic drug.

We lost our 16-year-old son to epilepsy over 15 years ago. I do not know whether medical cannabis would have helped him, had we even known about it then, but I will do everything I can to assist these families in their determination to get the medication that their children need. The memory of seeing our beloved Rory locked in status; to hear my wife scream for me to get an ambulance; to see the paramedics come upstairs to his bedroom; to hear the consultant in the hospital tell us that we better call a priest; and to hold my child as he died is something that I never want any of these families to suffer. I beg the Government to do the right thing and remove whatever barriers there may be and guarantee them access to this life-changing, life-saving treatment.

--- Later in debate ---

[Maria Caulfield]

These are clinical decisions. No one is saying that these products are not safe, but there is not the evidence base to get the licence. The MHRA does this for every single medicine, not just medicinal cannabis.

I want to set out how we can get to a place where we can get these drugs licensed and clinicians will feel confident in prescribing them. We recognise that, for many children, these drugs improve their quality of life—individuals have reported improvements—but without that research evidence base, the MHRA will not give a licence. The MHRA is an independent body—it is not controlled by the Government—and the clinicians will take advice and guidance from it. We may agree or disagree with how the MHRA licenses a medicine, but that is the process for all drugs. It is not just the MHRA—no country in the world has licensed this product. The Food and Drug Administration has not; the European Medicines Agency has not; the MHRA has not. The solution is in pushing the clinical research needed for a licence to be granted, which would open up prescribing for clinicians around the country.

[Andy McDonald]

Do the Minister and the MHRA not recognise that there is an abundance of practical evidence from the families who have scrimped and saved and raised money through charitable activities to fund the administration of the drug, and that it works? Surely that is persuasive. These families have not got time to wait for the research that the Minister is talking about, and I am yet to hear anybody tell me what harm would be done if that drug were to be given to those who need it and want it.

[Maria Caulfield]

There are concerns, particularly around the THC element, that there could be some effect on the developing brain and on heart conditions. Research is needed not just on the effect of the drugs, but on their safety.

I want to point out that the Government have made funds available for good-quality research. That does not have to be done by the manufacturers; it can be done by charities, clinicians or researchers. A range of people can come forward to carry out clinical research. The MHRA—