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Your Message 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.
By sending this message you agree to signing the End Our Pain petition and emailing your MP.