An Update on the Issue

My daughter Hannah Deacon, who set up this petition, died last year. I promsed her I would carry on her fight for  children with life-threatening, drug resistant epilepsy, for which so many people signed this petition. Please help me to live up to that pledge by taking a moment to sign my new parliamentary petition here: https://petition.parliament.uk/petitions/759240

For more details on our new campaign, visit:  https://www.hannahdeaconcampaign.co.uk/

After a long fight, in 2018, my grandson Alfie Dingley helped change the law regarding medical cannabis, and with that came, hope for thousands of families across the UK.  Alfie became the first child to receive an NHS prescription for medicinal cannabis to treat his severe epilepsy. His doctors were granted the first permanent Schedule One licence, and when the law changed that November, we believed this would open access for others. But it didn’t.  Only two other children in the UK, have received an NHS prescription. Alfie is 14 now and seizure free for nearly seven years.

Today, 35,000 children in the UK live with uncontrolled seizures, because the licenced pharmaceutical drugs don't work for them. About 40 families have been able to raise the money to buy medical cannabis prescriptions privately. Surely, this isn't how this country works. Can you imagine how that feels, watching your beloved child having seizure after seizure knowing that the next one could kill them and that if you could afford it or could live in another country, there is a treatment that could reduce or even stop their seizures, but your child can’t have it, because those things are beyond your reach? How traumatic and heart breaking, not just for parents but for grandparents, aunties, uncles, cousins, friends and above all siblings. Probably 350-500 thousand people devastated by this situation. Surely all these children should be given the chance to try a treatment that has proved to be safe and effective with no awful side effects.

There is a way forward to introduce the necessary changes in a careful and controlled way, as Hannah proposed. 

1. Guidance – NICE must urgently update guidance to reflect successful cases and give doctors clarity  and confidence to prescribe.
2. Education – Establish a national programme to support clinicians with unbiased education and mentoring.
3. Cost – Fund  the research  our campagn is requesting, to show how NHS access can improve outcomes and significantly reduce NHS costs.
4. Evidence – Focus on what is best for patients, step out of the strait jacket of current procedures and Invest in innovation and adaptive clinical trials to speed progress and better reflect real patient benefit.
5. Supply – Fast-track UK cultivation and production and streamline imports to secure supply and lower costs.

What is lacking is the will of our Parliament to implement those changes. So please

• Read  and share our web site
• Sign and share the Parliamentary petition. 
• Sign and share  this  Change.org petition and  tell the story of half a million UK citizens devastated by the present siuation 
• Watch the video below which will give you an idea of the trama those families suffer. ALL TOLD was made by Medcan Family Foundation, a charity Hannah co-founded to suport and educate parents.                                                              Together, we can raise a noise that will change the future 
                                                               Maggie Deacon, Mother, Grandmother and, now, Campaigner