Jeff Smith Labour MP for Mcr Withington stoiod up in the house of commons and told them how Alfie Dingley has not had a seizure in over 500 days thanks to his Cannabis medicine. Before having access to Cannabis medicines Alfie would suffer up to 150 seizures a week. His mother Hannah Deacon would have to witness these seizures, each one with the potential to end his life & she was powerless to stop them as Alfie was not responding to conventional medicines. Over 500 days seizure free and at 150 seizures a week means Cannabis has prevented well over 10000 seizure for this one boy.

How much more evidence will be needed before Cannabis can be accessed effectively by those who need it???

How many kids have lost their lives to preventable seizures while these governments (British, Irish and others) prevent access to this plant and the medicines which come from it???

Jeff’s contribution was then followed by Andy McDonald Labour MP for Middlesbrough who references professor Mike Barnes in saying “these kids have nothing to lose” by trying Cannabis. Andy later went on to continue to raise awareness of this situation when it called it a “Monumental Shame” that cannabis with a proven ability to help patients is still being denied to so many.

Andy also highlighted how these families who are so desperate to get effective access to cannabis for their sick children have been protesting, marching, & petitioning with such dignity and they should not be ignored.

End Our Pain is a group campaigning to help patients in the UK get much better access to cannabis. Their supporters include people like Russel Brand and Sir. Patrick Stewart. Despite the massive support behind this group more support is needed to help the many patients across the UK access cannabis in a fair and effective way. Cannabis is still not funded through the NHS for the majority of those who have been lucky enough to obtain a private prescription. This means these families are having to hand over 1000’s of pounds every month to have life changing prescriptions filled.

If you are in the UK and want to help this group you can email your MP using the link on the End Our Pains Website to Find your MP. Once your MP is found the following draft letter will be available. If you already know who your MP is then feel free to copy and paste the letter below or personalise it with your own experience and opinions too.

I hope something can be done very soon for all these patients as I do agree with End Our Pain when they say that “this Saga has dragged on for far too long” !

Draft Letter to MP

Ref: Please Urge the Prime Minister to Help Children with Severe Epilepsy

Body: As your constituent I’m asking you to contact the Prime Minister and urge him to support the families of children with severe and treatment-resistant epilepsy in their fight to access cannabis-based medicines through the NHS.

It has been three years since the law was changed to allow cannabis-based medicines to be prescribed in the UK. The decision followed high-profile campaigns by the families of two young boys with severe and treatment resistant epilepsy whose conditions have been dramatically improved by these medicines.

Despite the change in the law we are aware of just three NHS prescriptions for the cannabis-based medicines that played such a key part in this decision. Two of these prescriptions are for the young boys who were at the centre of the campaigns.

Many other families and carers of people affected by severe and treatment resistant epilepsy remain unable to access these products on the NHS. For them hope has turned to frustration and increasingly to despair.

The lack of NHS access has led to some families feeling forced to access these products privately at a cost of up to £2,500 every month. Many more are simply unable to afford a private prescription. Many of those who are currently accessing these products privately have seen a sustained reduction in the number of seizures and significant improvements in quality of life.

The prohibitively high cost of these private prescriptions has left many families to rely on fundraising to meet the monthly fees. The ongoing COVID-19 pandemic has made fundraising almost impossible and for many, the funds are running out. In addition, one of only two paediatric neurologists prescribing medical cannabis for these children is set to retire.

I’m asking you to support the End our Pain families and Epilepsy Action and write to the Prime Minister urging him to work with Ministers and the families affected to provide the support needed to ensure these children can continue to access treatments that work where so many others have failed.

Having waited three years, time is running out for many families. With your support we can find a much needed solution for these children.

Kind regards,

This letter was written by the End Our Pain team, make sure to give them a follow on social media so you can stay up to date and support their campaign. More patient stories can be found here

Thanks for reading this and for sharing it too.