Dozens of parents whose children are suffering from severe and rare intractable epilepsy will gather at Parliament to condemn what they describe as a “failure” of Government policy.
It has been three years since medical cannabis was first legalised in November 2018, yet parents across the UK are still facing difficulties with NHS access.
There are only three NHS prescriptions issued for the type of medical cannabis that has helped to transform the life of then six-year-old, Alfie Dingley.
The families, many of whom campaign under the End Our Pain banner, are forced to pay privately for their medicine which has proved to be transformative for their children. The children’s cannabis-based medications have drastically reduced their seizure rates and improved their quality of life. However, the cost of the medications has led the families struggling to raise up to £2,000 a month to treat their children.
Parliament event
To mark the anniversary, every MP has been invited to attend a parliamentary event to highlight the ongoing crisis. The parents will also display a digital poster van outside Parliament which will show the physical transformation of many of these children since they started taking medical cannabis.
The families will also walk to Number 10 Downing Street to directly appeal to the Prime Minister, Boris Johnson.
Joanne Griffiths, whose son Ben is still denied an NHS prescription and who helps coordinate the other affected families, said “Our families are at the end of their tether. We have done everything we can possibly do. We have marched, petitioned, lobbied Parliament and met with Health Ministers countless times, yet three years on we still cannot access the NHS prescriptions for the medicine our children are reliant on.”
She added: “In 2018 we thought our problems were solved and that the Government would support our children. Yet here we are in 2021 struggling both financially and emotionally and continuing to be passed from pillar to post by both the Government and the NHS. As parents, all we want is to keep our children safe.”
Hannah Deacon, mother of Alfie Dingley said: “My son is lucky enough to be one of only three children in the UK with an NHS prescription for the type of the whole plant extract medical cannabis that has been life-transforming in cases of paediatric epilepsy.”
She added: “From having up to 150 life-threatening seizures a week, he has now gone over 500 days without a single serious seizure. Every child with severe intractable epilepsy deserves this opportunity. That’s why I am continuing to call on the Government and the NHS to work to solve this crisis. It is a total injustice that three children have access to this medicine, while others do not know when their money will run out.”
Parliamentary protest
In the last three years, the families have been faced with a series of obstacles in their quest for NHS prescriptions, including the failure of an initially encouraging internal NHS review published in August 2019.
These difficulties have persisted despite recent clarification from NICE, following a threatened high-profile legal challenge from one family, that there is no recommendation against the use of whole plant extract medical cannabis products in appropriate cases of paediatric epilepsy.
Campaigners have presented a number of temporary solutions to tackle the growing crisis including interim funding of private prescriptions, the establishment of an access fund and the commissioning of an alternative observational trial. This would help the families to access cost-free medications but so far, this has not been accepted but by the Government. The Government have failed to offer any other solutions.
Tonia Antoniazzi MP, co-chair of the All-Party Parliamentary Group for Access to Medical Cannabis Under Prescription, commented: “The situation we find ourselves in today is a complete and utter disgrace. The Government have failed to help the very children they pledged to support back in 2018. As co-chair I have written to the Prime Minister and the new Health Secretary Sajid Javid and have received no reply. Three years have passed since the law change. These children do not have time to wait a day longer. The Government have the power here to make a positive change and for every second they choose to do nothing, lives are needlessly being put at risk.”
Cannabis Health News will be joining the families at Parliament to highlight the failure of government policy and ask for better NHS access. You can follow our coverage on our Instagram and Twitter
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