- Simply CBDGeschäft für Vitaminpräparate
- Callie BlackwellAutor/in
- Teesside Cannabis ClubGemeinnützige Organisation
Thank you to each and every one of you who wrote an email to your MP asking them to visit us this morning in London.
We had a huge cross party turn out which was amazing and so much support and common sense being spoken.
We took the petition to Number Ten Downing Street at 2:30 today and we were surprised to be invited in! We met with Sir Mike Penning, Minister Hurd and the Prime Minister came to see Alfie and assured us we would find a resolution with Minister Hurd.
...We have now been told that if our doctor applies for a license on compassionate grounds that they will expedite the process as quickly as possible. They can not assure us of the outcome which is frustrating but legally they can’t however we hope very much so that the outcome will be favourable as we have so much influential support now and also proven by doing the trial in Holland that Alfie needs this medicine desperately.
Thank you so much for your support. We still need to keep the pressure up until we actually get this license but we have moved closer to our goal today.
Much love 
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Alfie's Hope war live.
Alfie's Hope hat einen Link geteilt.
Thank you so much to Richard Branson for writing this piece and helping raise awareness of Alfie’s case. We need urgent action now!
We are so honoured that Joanna Lumley is supporting Alfie.
Take action NOW and write to your MP, urging them to meet with Alfie and his family in Parliament on 20th March. CLICK HERE: endourpain.org/find-my-mp/
Other news:
...Alfie had a seizure this morning. He had only one and he has recovered quickly thanks to the whole plant cbd oil but it is only ten days since his last this would not have happened if he’d had his thc oil prescribed. We are so grateful we have had the means, thanks to very generous people, to use this cbd oil but it should be available to him along with the thc oil on the NHS!
I have sent out an update on our change petition today asking everyone to please send a message using the end our pain link above, to your MP asking them to join us on 20th March at Westminster where we will be presenting our petition but also asking them to cut through the RED TAPE and urgently give Alfie his prescription.
Thanks for all your support we will win! 
❤️❤️💜💜
Thank you to everyone who have sent supportive and kind messages over the last day.
Alfie is home and safe. The presentation of his seizures is vastly improved since he's been on the whole plant cbd bedrolite which we are so thankful for and so happy that we can still legally give it to him here in the UK without it we would be in hospital far longer and his seizures would be greater in number and more severe. With the thc oil it's even better and he goes far longer without s...eizures. We need both components to give Alfie the best possibility of being seizure free.
We have had people offer us alternatives for which we are greatful and understand you desperately want to help Alfie. We are however determined to do this legally and get a prescription for both cbd and thc made by Bedrocan on the NHS. We are focused on doing this legally and we believe it will pay off.
We have many wonderful people working tirelessly behind the scenes to get the trial for Alfie's medication in place urgently and I believe it'll happen very quickly. We are so grateful to all of them who are helping Alfie so much.
We proved in Holland that this oil works for Alfie we did the trial under a Dutch neurologist who presented a report with the findings. It's a shame that this isn't acceptable but we have to move on and find a way forward urgently and I hope that the UK trial is put in place quickly. It is not an option for us to go back to Holland and why should we? Alfie's family are here and he wants to be with them that's part of giving him his quality of life.
We hope we get some good news soon. Keep getting everyone you know to sign our petition and send an email to their/your MP using the end our pain link. Both can be found on our page. I believe people power, the media support and all the MPs behind us will get us the right result.
Much love xxxx ❤️❤️
Please note this photo was taken in Holland not today. X
Good evening everyone. Thank you for all your support today. It’s been a tough day but all your messages have helped us through it. Alfie is doing better this evening so hopefully he’ll be home soon.
Please find below the links to our petition and our Just Giving page. I’ve had a few messages asking for this so I thought I’d share them again.
Much love 💜💜💜
https://www.facebook.com/alfieshope/posts/357081708102432
https://www.change.org/p/to-legally-use-whole-plant-medical…
Alfie's Hope war live.
We have just released the below press statement please share far and wide. My heart is breaking. Alfie needs your help, please share far and wide so he can access his medicine as quickly as possible. Much love 💜💜💜
6 year old Alfie Dingley in Hospital - Statement from his mother, Hannah Deacon
Reacting to her son's emergency admission into hospital suffering from a cluster of extreme life threatening epilepsy seizures, mother of 6 year old Alfie Dingley said, ' I am appealing ...directly to Amber Rudd, Nick Hurd and the other Home Office Ministers, to Jeremy Hunt and the Department of Health Ministers and to the Prime Minister herself to understand the urgency with which they need to act to help my beloved son survive and have the best life he can. To see him in distress in hospital with his life in danger yet again is traumatic and heartbreaking. My son is suffering. The medical cannabis based products Bedrolite and Bedica are the only ones which have worked to reduce the severity and frequency of his seizures. We need your urgent compassion and action now. Please don't stand by and let my son suffer or die unnecessarily.'
Alfie has started a new cluster of seizures only 15 days since the last one. He is now in hospital and being given the IV steroids which his UK Consultant has warned will be life threatening. He has now had two clusters since his return from Holland on 12th February, and the cessation of him being given three drops each day of Bedica oil (containing 2% THC). This is exactly what his Dutch Paediatric Neurologist warned of in her clinical report. This compares with one or two mild seizures per month when he was taking the Bedica oil. So the frequency of his seizures has doubled.
This situation is causing Alfie and his family immense distress. His parents fear that his condition will deteriorate further and his life will be at risk.
The family were given a strong indication that the Home Office is willing to help and that they would consider providing the necessary licence for a trial of the medical cannabis that dramatically helped him when administered under medical supervision in Holland. There have been moves underway to progress this in a meeting of the agencies concerned. In their appeal, the family are asking that the meeting now be given the highest priority and take place by Tuesday next week latest. The family are prepared to travel to Holland at a moments notice to get the medicine now if necessary.
Alfie's Hope hat Ben Rockes Veranstaltung geteilt.
My amazing school friend Ben has organised an event to climb up Snowdon to support Alfie’s Hope.
I hope it will be a great day of celebrating what an achievement we’ve all made together! 💜💜💜
Good Evening everyone.
I was interviewed today by Emily from ITN about Alfie and our story so far. It will be aired tonight at 10pm on ITV.
Please watch and give us some support.
...Please can you share the below link with all your friends and ask them to lobby their MPs. We also have a petition at change.org I have included the link below.
Thank you for all your support.
Much love 💜💜💜
Please use this link https://endourpain.org/find-my-mp/ to get your local MP to back Alfie’s campaign and, if you haven’t already, sign the petition on www.endourpain.org
https://www.change.org/p/to-legally-use-whole-plant-medical…
Thank you to each and every one of you from the bottom of our hearts. We are so overwhelmed with the love and support we’re receiving from everyone.
Please keep sharing our pinned post or this one so people can email their MP to raise this subject with their MPs. The link to End our Pain and the petition is below.
We need to keep the pressure up and we hope that a solution is found urgently for Alfie.
... Much love 
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https://endourpain.org/find-my-mp/
https://www.change.org/p/to-legally-use-whole-plant-medical…
I’m on Jeremy vine today at 1230. Please listen, call in, show your support. Together we’ll make this happen! Much love xx
Just to let you know I’ll be on BBC One news at 8am and the Today program on radio four today.
Wish me luck!
Xxxx
Thank you so much to our supporters new and old we appreciate you all so much and your belief in what were trying to do to save our son from a horrendous life.
I just wanted to clear up some confusion there is about what we’re using with Alfie. He is using a whole plant cannabis cbd and thc oil made by Bedrocan. Bedrocan is now the world’s first producer of medicinal cannabis to be compliant with the European Medicines Agency’s good manufacturing practice (GMP) standards. Who...le plant cannabis gives the user all the cannabanoids and terpenes which are needed to give an anti seizure effect in hard to control epilepsy.
We tried Charlotte’s Webb and Hayleighs Hope which are hemp oil before we travelled abroad to ensure we’d done all we could in the U.K. before we made the life changing decision to go. Unfortunately it didn’t work. The oil in Holland and Barrett is also hemp oil so is not appropriate for Alfie. Hemp oil can be helpful for many people so I’m not saying don’t try it but it just doesn’t work for Alfie.
Much love 💜💜
End our Pain are supporting our fight to get Alfie the medication he needs (whole plant cannabis cbd and thc oil) on the prescription from the NHS.
Please follow the link below which enables you to send an email to your MP to raise awareness of Alfie’s case and many others like him to have a prescription for medical cannabis on the NHS. There is also an End our Pain petition which we urge you to also sign.
Thank you to everyone who is supporting us and believes in what we’re... doing.
Much love 💜💜
Please use this link https://endourpain.org/find-my-mp/ to get your local MP to back Alfie’s campaign and, if you haven’t already, sign the petition on www.endourpain.org
