The families of children using medical cannabis to prevent seizures are asking MPs to make it accessible on the NHS ahead of a parliamentary debate led by Christine Jardine MP.

The End Our Pain campaign have urged the public to write to their local MP to encourage them to attend the adjournment. A petition in support of this campaign has reached over 650,000 signatures.

Liberal Democrat, MP Christine Jardine will call on Health Secretary Sajid Javid to ‘fulfil the promise’ he made in 2018. Despite medical cannabis being legalised in the UK in November 2019, there are only a handful of prescriptions on the NHS. Parents have been left paying up to £2000 for private prescriptions.

 

Campaigner and parent of Alfie Dingley, Hannah Deacon called for support: “We are lucky to have one of the NHS prescriptions for Alfie. Dozens of other families are having to fundraise up to £2,000 a month to pay privately for their medicine. That’s why I am determined to do all I can to help other families get their NHS prescriptions too.

“Even if you have helped me in a similar fashion in the past, I hope you will feel able to help me again. It takes just a few seconds and every MP that is motivated to attend adds more weight to our campaign.”

Petition and parliamentary debate

Campaigner and mum to Murray Gray, Karen Gray is hoping Sajid Javid will do the right thing and implement change. Speaking with Cannabis Health News, she said: “Christine Jardine, our MP, will be explaining to Sajid Javid why it’s important that he listens and implements a change, which will be a solution for all of us asking for our children’s cannabis oil medication to be prescribed through the NHS. It’s critical that the Health Minister listens and acts on the request. Our children’s lives are in his hands to do the right thing.”

A number of celebrities and politicians have also supported the campaign including Alastair Campbell, Sir Patrick Stewart, Joanna Lumley and Russell Brand. The former leader of the Green party, Caroline Lucas and leader of the Liberal Democrats, Ed Davey along with 70 other MPs have also voiced support.

The End Our Pain website allows users to search for their MP using their postcode. It before presents a template that can be sent to MPs asking for their attendance at the parliamentary debate

The template reads:

“It has been almost three years since the landmark decision on 1st November 2018 to allow cannabis-based medicines to be prescribed in the UK. However, nearly three years later, there still remains an almost total block on NHS prescriptions. Despite the high profile campaigns of families including that of the then 6-year-old Alfie Dingley which ensured the law was changed, only two other children have access to NHS prescriptions in addition to Alfie.

Instead, dozens of other families are forced to pay up to £2,000 a month for a private prescription for medical cannabis. Many of these families campaign under the End Our Pain banner and have seen a sustained reduction in the number of seizures and significant improvements in quality of life since their children started taking this medicine.

The prohibitively high cost of these private prescriptions has left many families reliant on fundraising to meet the monthly fees. The ongoing COVID-19 pandemic has rendered fundraising almost impossible and for many, the funds are running out. These families are now at emotional and financial breaking point.

In addition, the situation is now so dire that in a matter of weeks there will only be one UK paediatric neurologist prescribing privately for children suffering from severe epilepsy in the whole of the UK.

I’m asking you to support the End our Pain families and attend this debate to ensure these children are able to access this life-transforming medicine on the NHS. Having waited for so long already, time is running out for many of these families. Your support is essential to ensuring the Government establish an urgent solution to this crisis.”

Read more: New report on medical cannabis shows parents frustration and anger

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