THE PATIENTS’ STORIES
On the 19th June 2018 Alfie Dingle who has severe epilepsy was granted the first long-term licence for the use of medical cannabis ever in the UK.
Alfie Dingley suffers from a rare form of epilepsy that causes him to have suffer severe life-threatening seizures, sometimes as often as 25 times a day. After much research into possible treatments for Alfie’s condition meaning he wouldn’t be subjected to steroid injections with serious side effects, the family found there to be a possible relief in the form of medical cannabis.
However, since the medicine is banned in the United Kingdom, Alfie and his family moved to Holland for treatment. Even though the medical cannabis was remarkably effective- Alfie went 24 days without a seizure- his family had to move back to the United Kingdom when money and insurance ran out. As Alfie’s seizures worsened and he had to be hospitalized, his mum Hannah begged the Home Office to grant Alfie a special licence which would allow him access to the medical cannabis in the UK.
No individual had ever been granted this licence before, and the Government refused. But after support from dozens of MPs and thousands of people from across the country, the family were able to present a petition with 37,000 signatories to No. 10. They met with the Prime Minister, who promised them that the Home Office could grant the licence on compassionate grounds. Finally, on June 19th 2018, after three long months of waiting, the Home Secretary Sajid Javid announced that the Government would grant Alfie the special licence to use the life-changing medical cannabis. Alfie and his family were finally able to enjoy the quality of life they deserve.
Alfie’s licence is the first ever licence for medical cannabis to be issued in the United Kingdom. On the same day that his licence was issued, Sajid Javid also announced that he was launching a review into medical uses of cannabis, opening the possibility that many more patients could soon gain access to life-changing medical cannabis.
On the 13th July 2018 Sophia Gibson who has severe epilepsy was granted the first long-term licence for the use of medical cannabis in the UK by the newly announced medical panel.
Sophia, from Newtonards, Country Down suffers from a genetic condition which causes frequent and dangerous fits that are not controlled by the medication available to her in the UK. In desperation her parents took her to Holland where she was treated with medical cannabis and her seizures reduced by around 80%. Whilst waiting for being denied access to her medication, Sophia suffered one of her most catastrophic seizures that led to her being in intensive care and put into an induced coma whilst her family were waiting to hear if she would be granted a licence.
Sophia’s mum told End Our Pain that:
‘’This decision is a life changer and a life saver for Sophia. But no family should have to fight this hard, for so long, for something that so obviously has a benefit. The fight has been exhausting but the relief is immense. Sophia has got a long-term licence for the use of Bedrocan whole plant medical cannabis oils, to be prescribed through the NHS by her UK doctors.
We hope that by following Sophia’s journey, other children and adults across the UK can access the same treatment without having to uproot their lives to travel or move abroad. Cannabis should be rescheduled and Doctors should be able to prescribe it.
Now Sophia can have her medicine her life will begin to improve and we can enjoy a more normal family life.
We hope we that the decision made today will pave the way for the many others who should have access to medical cannabis. We will continue to work to make it accessible for others and educate people on the use of medicinal cannabis so there isn’t a stigma or misconception surrounding it anymore’’.
In 2011 Callum was serving in the British Army when he lost both his legs in an explosion in Afghanistan aged 22. Callum, like thousands of other people across the UK, uses cannabis medically to ease his intense pain. But despite the evidence that has led 29 US states and many countries across Europe and the rest of the world to legalise access to medical cannabis, it remains illegal in the UK. So he is left in the terrible dilemma of having to suffer in silence or to break the law to access his medical cannabis. If you think that Callum should have the right to access medical cannabis through his doctor and pharmacy please sign the petition calling for UK doctors to have the freedom to prescribe medical cannabis in circumstances where they judge it will help their patients and for that prescription to be honoured at the pharmacy’.
Jacob is 29 years old and has been battling chronic and neuropathic pain for eight years. Born with a diaphragmatic-hernia and needing immediate life threatening/saving surgery, he then needed further corrective surgery after six months due to ruptures. In 2007 he was rushed to hospital after being found unconscious due to extreme pain and excessive internal bleeding. Urged to undergo invasive experimental surgery to access the problem he had adhesions and scarring removed from his abdomen and bowels. Since then he has struggled with intense pain,spasms, digestion and dietary problems and has relied on herbal cannabis as his sole source of relief. After trialling various antispasmodics and opiates which all incurred horrific side effects he was awarded trials on Nabilone and Sativex. He found that neither medication was effective in combating his symptoms so he is currently trying to get legal access to a medical cannabis option.