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Paul Griffiths retweeted
“We need more evidence.”
That’s what we’ve been told for eight years.
Eight years of children and adults paying privately for medicines that have changed their lives. Eight years of asking the NHS to look at the evidence patients and families already have.
In 2019, we were promised that clinical evidence from patients already receiving medical cannabis would be collected.
Yet an internal @NHSEngland briefing from 2025 revealed that the national patient registry wasn’t working properly, with 84 outstanding access requests from NHS staff and consideration being given to closing it.
And now @DHSCgovuk (DHSC) has confirmed that not a single patient entry has been captured.
Children and adults with an unmet clinical need are still paying privately for their medicines because the NHS says it needs more evidence.
But how will we ever build the evidence base needed for NHS access when the NHS isn’t collecting it?
We have eight years of evidence.
We’ve done our part. Why hasn’t the NHS done theirs?
YOU CANNOT DEMAND MORE EVIDENCE WHILE FAILING TO COLLECT IT.
I have already called on the Prime Minister @andyburnham to finish the job started by the @Conservatives in 2018.
Today, I’m asking him to confirm that the national medical cannabis patient registry will not be closed and to fix the problems preventing the collection of NHS and private patient data, as promised.
After eight years, surely that isn’t too much to ask?
Don’t close the registry. Make it work.
#EndOurPain #ForgottenChildrenOf2018 #MedicalCannabis #NHSAccess
Paul Griffiths retweeted
💔 Remembering Sir Patrick Stewart (1940–2026)
Everyone at End Our Pain is deeply saddened to hear of the passing of @SirPatStew.
Known and loved by millions for his extraordinary career on stage and screen, Sir Patrick was also a supporter of End Our Pain and our campaign for access to medical cannabis for patients in desperate need.
We will always be grateful that he lent his voice and support to families fighting to access the medicines their loved ones so desperately need.
His kindness, compassion and willingness to stand alongside those fighting for change will not be forgotten.
Our heartfelt condolences go to his wife Sunny, his family, friends and all those who loved and admired him.
Thank you, Sir Patrick, for standing with us.
Rest in peace. ❤️
From everyone at End Our Pain.
news.sky.com/story/star-trek…
Paul Griffiths retweeted
The #BBUK reunion this year is gonna rival this for tv moment of the year.
Paul Griffiths retweeted
Eight years after medical cannabis was legalised, children with severe epilepsy are still being denied NHS access. Why hasn't the Government collected the evidence?
petition.parliament.uk/petit…
We need just over 3,000 signatures by tomorrow to find out.
#forgottenchildren2018
Paul Griffiths retweeted
Eight years after medical cannabis was legalised, children with severe epilepsy are still being denied NHS access. Why hasn't the Government collected the evidence?
petition.parliament.uk/petit…
We need just over 3,000 signatures by tomorrow to find out.
#forgottenchildren2018
Paul Griffiths retweeted
Do you care about disabled children like Ben?
If you do, please sign and share the petition.
petition.parliament.uk/petit…
For 23 years, Bedrocan grew the medicinal cannabis the Dutch Government supplied to patients around the world.
When the law changed in the UK in 2018, Bedrocan oils were imported for children with epilepsy. Support from the NHS and MPs was thin, and despite promises of a UK supply chain and research studies, by 2026 only 3 children had NHS-funded prescriptions. Other families pay for Bedrocan oils privately through clinics.
However, that supply is now under threat.
In 2024, the Dutch government announced a new framework for medicinal cannabis. Bedrocan’s contract to supply the Dutch government ended on 1 January 2026, but the new laws needed to allow it to sell directly are not expected until 2028.
As the politicians and regulators failed to act in time, Bedrocan’s Dutch company has now been declared bankrupt. Bedrocan’s plant is the raw material for Bedrolite and Bedica, the oils UK families rely on to control severe, treatment-resistant epilepsy.
A licensed UK pharmaceutical company has signed with Bedrocan to make, test and dispense these oils here. It cannot start without Bedrocan plant material, and the remaining stock is stuck in the Netherlands.
For @BenBoisterous , these oils are the difference between hundreds of seizures a day and a stable life. He is one of many. The @TheTimes reports that families fear supplies will run out before the new year.
On 13 October, @PaulFosterMP wrote to the Prime Minister for Ben’s mum, @JoanneGriffith5, and the endourpain families. He asks Ministers to talk directly to the Dutch Government, release the remaining stock and secure a lasting supply. Swipe to read the letter.
What you can do today:
1. Sign Joanne’s petition. petition.parliament.uk/petit…
2. Share this post and tag @andyburnham
3. Ask your MP to back the letter.
The petition closes on 21 October. At 10,000 signatures the Government must respond. At 100,000 Parliament considers it for debate. Every signature this week counts, for Ben and hundreds of other children.
@elonmusk please share and help
petition.parliament.uk/petit…
Paul Griffiths retweeted
Breaks my heart. @andyburnham
Please sign, confirm and share the petition: petition.parliament.uk/petit…
Last week, my son Adam sent me this screenshot. He had messaged Andy Burnham to ask for help for his brother.
Adam is Ben's twin. He wrote that Ben could lose the medication that stops him having hundreds of seizures a day. He wrote about seeing his brother in hospital, and staying up every night as a child hoping Ben wouldn't die.
He doesn't want to live through that again.
It broke my heart to read it.
The government forgets that this affects the whole family. Decisions about medicines are made with the patient in mind. Brothers and sisters are left out of the picture, and they are watching and waiting too.
Why should a child carry that fear into adulthood? Why should a family have to fight to keep the medication that keeps their son alive?
Adam is asking for something simple: to keep his brother by his side.
Please sign and share so it is seen.
Paul Griffiths retweeted
Please sign, confirm and share the petition: petition.parliament.uk/petit…
Last week, my son Adam sent me this screenshot. He had messaged Andy Burnham to ask for help for his brother.
Adam is Ben's twin. He wrote that Ben could lose the medication that stops him having hundreds of seizures a day. He wrote about seeing his brother in hospital, and staying up every night as a child hoping Ben wouldn't die.
He doesn't want to live through that again.
It broke my heart to read it.
The government forgets that this affects the whole family. Decisions about medicines are made with the patient in mind. Brothers and sisters are left out of the picture, and they are watching and waiting too.
Why should a child carry that fear into adulthood? Why should a family have to fight to keep the medication that keeps their son alive?
Adam is asking for something simple: to keep his brother by his side.
Please sign and share so it is seen.
Paul Griffiths retweeted
Children with severe, treatment-resistant epilepsy have been left without NHS options for specialist medicines since 2018.
Families are calling for the government to fund an observational trial so evidence can be gathered and access improved.
The petition needs 10,000 signatures by 21 October for a government response.
Please sign and share:
petition.parliament.uk/petit…
Paul Griffiths retweeted
🚨 MPs Speak Up as Children with Severe Epilepsy Face Losing Essential Medicines
Today, @RNBlake MP stood up in Parliament to raise the plight of her constituents affected by the Bedrocan medicinal cannabis supply crisis. She has also written to Health Minister @YvetteCooperMP seeking urgent action.
@PaulFosterMP has written to Prime Minister @andyburnham at @10DowningStreet calling for immediate intervention with the Dutch Government to protect the continued supply of these life-changing medicines.
We have also asked Paul to submit an Urgent Question in Parliament to protect his constituent, @BenBoisterous , and the other children and adults whose severe, treatment-resistant epilepsy makes changing their established medicines extremely risky.
After eight years of fighting for access, these families now face the possibility of losing the very medicines that have transformed their lives.
We cannot allow another avoidable medical crisis.
💜 YOU CAN HELP TODAY!
📢 Share this post to raise awareness.
✍️ Sign our petition in bio calling for the promised observational trial for the Forgotten Children of 2018. petition.parliament.uk/petit…
📧 Email your MP today and ask them to support urgent government intervention. MP letter in comments.
Find your MP and send a letter here:
endourpain.org/find-my-mp/
Read our open letter to the Prime Minister:
endourpain.org/open-letter-t…
These children have waited eight years for NHS access. They cannot afford to lose the medicines keeping them well.
#forgottenchildren2018 #EndOurPain #Epilepsy #PatientSafety #Bedrocan
Paul Griffiths retweeted
@andyburnham please don’t let my child die. You have children, what would you do if it was your child that needed this medicine to stay alive and enjoy life. You could help Ben today.
Today, End Our Pain families are calling on @andyburnham to support our urgent appeal for Government intervention to protect the supply of medicinal cannabis oils for children and adults with severe, treatment-resistant epilepsy.
After eight years of fighting for access and overcoming repeated supply difficulties, we have secured a UK manufacturing solution. However, developments in the Netherlands now threaten the continued supply of the essential raw materials needed to produce these medicines.
For children whose seizures have finally been brought under control, another interruption could have devastating consequences.
We urgently need the UK Government to engage with the Dutch Government to protect continuity of treatment before another avoidable crisis occurs.
#EndOurPain #forgottenchildren2018 #MedicalCannabis #Epilepsy #PatientSafety
Paul Griffiths retweeted
We have 6,448 signatures and need just 3,552 more by 21 October to secure a Government response.
🙏 Please spare 30 seconds to sign, confirm the email link and share with your friends.
petition.parliament.uk/petit…
Thank you so much for your support. 💜
Paul Griffiths retweeted
Purple Day for Epilepsy Awareness! 💜 Meet Murray, a brave boy with Doose Syndrome, now seizure-free and thriving in school after fighting for vital cannabis oil treatment. Let’s advocate for access to care for all! #PurpleDay #Epilepsy #HopeForChange
intractable.org.uk/epilepsy-…
Paul Griffiths retweeted
The aftermath of having a seizure is sometimes described as experiencing post-workout pains and can cause sufferers to feel muscle aches. So, to replicate that feeling, we are challenging you to participate in our “100 miles to stop 100 seizures” campaign
justgiving.com/campaign/100m…
Paul Griffiths retweeted
Alf, diagnosed with epilepsy 8 years ago, faces severe seizures and hasn't been to school since March 2023. We're fighting for access to medicinal cannabis, which could transform his life. Read the full story below.
#PurpleDay2025 #EpilepsyAwareness
intractable.org.uk/donate-1
Paul Griffiths retweeted
Whether you're a seasoned runner or a beginner, this is your chance to get active, challenge yourself, and make a difference. Sign up to raise funds for charity while improving fitness and spreading awareness about epilepsy. Every step can change a life!
justgiving.com/campaign/intr…
Paul Griffiths retweeted
💜 Today, we celebrate Purple Day for Epilepsy! Ben's seizures dropped 98% thanks to medical cannabis. He’s thriving, but access in the UK is limited. We fight for change with other End Our Pain parents! #PurpleDay #EpilepsyAwareness
intractable.org.uk/epilepsy-…
Paul Griffiths retweeted
Today is #PurpleDay! 💜 A global grassroots event to increase worldwide awareness of epilepsy. To get involved, please visit:
@epilepsysociety
@MedcanFamily
@epilepsyaction
@youngepilepsy
@IntractableUK
@EpilepsyInst
To donate, volunteer, and educate yourself and others.