Alfie's Story
Hannah's story begins with her son Alfie's story. Alfie Dingley was the first patient in the UK to receive a permanent cannabis licence which meant his doctors could prescribe what was then a schedule one drug on the NHS.
Alfie experienced his first seizure at just eight months old and was admitted to hospital for nearly four months, spending time in intensive care before being transferred to Great Ormond Street Hospital.
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He lives with a very rare form of epilepsy called PCDH19 and at age five, Alfie's condition got worse. Alfie was admitted to hospital 48 times in 2016 as a result of his epilepsy being unresponsive to anti-epilepsy drugs, and received up to 25 doses of steroids a month.
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After trying various treatments, anti-epilepsy drugs, a ketogenic diet and immuglobulins, the only treatment that reduced his seizures was a steroid called IV Methyl Prednisone that can cause severe side effects, including mood swings, restlessness and headaches. Steroids can even cause organ failure.
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Discovering medical cannabis
In 2016, Hannah began to research other options for her son. "When doctors advised us on the dangers of Alfie's treatment, I needed to look into other options. I started to research epilepsy treatments and medical cannabis kept coming up – and felt confident that it was a positive option. I wanted to know that whatever happened, I had done everything I could to keep Alfie alive."
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After a series of setbacks, Hannah worked with Alfie’s doctors and was eventually given their support to take Alfie to Holland for treatment with medical cannabis where he was assessed and immediately prescribed with the treatment he so desperately needed – Bedrolite CBD oil. After five weeks of medical cannabis treatment Alfie experienced 17 days without a seizure – the longest amount of he had ever gone without experiencing one.
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"It was the beginning of our miracle. As time went by, we put up the dose of CBD and Alfie started to get better. We then added in a small amount of THC and he did even better. Treatment with cannabis oil has given Alfie a much greater quality of life and significantly reduced the number of seizures he suffers."
On 7th July 2018, Hannah became the first person to legally enter the UK with medical cannabis containing THC.
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Fighting for medical cannabis to be available on the NHS
Returning home, Hannah was ready to fight the biggest battle she had ever had – fighting for medical cannabis to be available on prescription for her son.
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Alfie's doctor was unfortunately unable to help due to the NHS Trust being unsupportive of cannabis. At this point, Hannah met Neurologist and Professor Mike Barnes. When Hannah told Mike about Alfie's story, he agreed to help.
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Alfie received the first NHS prescription for medical cannabis through a shared care agreement, approved by the Home Office on 19th June 2018. Prof Barnes worked in an agreement with Alfie’s GP to make sure the prescription was available to Alfie.
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"Mike stood forward when no one else would. He gave his time and expertise for free because he felt it was the right thing to do. He has now become a lifelong friend and we now work together to improve access to medical cannabis for patients across the UK."
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Prior to medical cannabis treatment, Alfie experienced more than 500 seizures a month. Now, Alfie lives a relatively normal, happy life thanks to medical cannabis treatment.
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