A mother who fought for the NHS to prescribe her son medical cannabis oil to help prevent 500 epileptic seizures a month has died, aged 45.
Hannah Deacon, from Kenilworth, Warwickshire, successfully campaigned to have the law changed to enable children like her son Alfie to access the Class B drug on the health service.
A statement on her website read that she died on Tuesday surrounded by her loved one after a ‘short and brutal illness’.
It added she was ‘remarkable, determined, tenacious, and fiercely compassionate’.
‘Her fight to find treatment for her son Alfie’s rare and severe epilepsy led to a breakthrough that changed his life and ultimately changed the law.’
The announcement comes weeks after Mrs Deacon stepped down from the Medcan Family Foundation, a charity that helps families access cannabis medications, citing health reasons.
Her son Alfie, who used to have 150 seizures a week, became the centre of a campaign to enable patients to access cannabis oil when he was just seven.
Mrs Deacon championed the movement in 2018 after discovering Alfie’s condition dramatically improved after taking the medication in the Netherlands, where it was legal.
In 2018, Hannah campaigned to have the laws around prescribing the medicinal cannabis changed. A statement on her website read that she died on Tuesday surrounded by her loved one after a ‘short and brutal illness’
Alife would end up being the first patient in Britain ever prescribed the drug on the NHS.
Speaking in 2022, she said Alfie, then 10, had been free from seizures for two years since using the drug.
The statement on her website paid tribute to her work, stating she ‘went on to transform the lives of thousands of patients and families, never stopping in her work to push for better access, better care, and a better understanding of medical cannabis’.
It added that her loss to the family was ‘impossible to put into words’.
‘More than anything, Hannah’s most proud and important role was being a mum.’
Alfie experienced his seizure at just eight months old.
The family found themselves at a loss as doctors could not detect what was causing his seizures, which were putting him in hospital around 50 times a year.
Eventually, at the age of five, Alfie was diagnosed with PCDH19.
Hannah Deacon, from Kenilworth, Warwickshire, successfully campaigned to have the law changed to enable children like her son Alfie to access the Class B drug on the health service
This is a severe refractory epilepsy condition meaning it doesn’t respond to medications normally prescribed to treat it.
Speaking in 2022, Mrs Deacon recalled: ‘We were told by our then neurologist that he may get better with age and there’s nothing else we can do.’
While Alfie was given drugs to help manage the condition these came with ‘severe side effects’.
Mrs Deacon said: ‘He was always either having hundreds of seizures or was at home with me as his full-time carer. He was hitting, punching and kicking me, screaming, not sleeping – there was just no quality of life for him.’
‘I just thought at that point well no, I’m not going to accept that, I’m not going to accept that I just hope for the best and hope he doesn’t die.’
After research and speaking to other parents with epileptic children, Hannah raised funds to travel to the Netherlands in 2017, where medical cannabis oil is legal, so that her son could benefit from the treatment.
Mrs Deacon said she saw an immediate improvement in Alfie – and his seizures came down to just one a month.
But when forced to return home and come off cannabis oil, Alfie’s condition immediately deteriorated.
Since the campaign proved to be a success, Alfie has been living a normal and happy life
This launched his mother’s tireless campaign to get medicinal cannabis prescribed on the NHS which in 2018 was successful.
While the law changed, getting the same type of cannabis oil on the NHS that Alfie received remains a challenge.
Earlier this year the BBC reported that fewer than five patients have been prescribed what is known as ‘full-spectrum’ cannabis oil over the past six years.
This is an unfiltered product that also contains tetrahydrocannabinol (THC) the psychoactive component of cannabis.
While cannabis oils without THC are available on the NHS many families claim only the ‘full-spectrum’ version helps combat the seizures their loved ones suffer.
Families have reported smuggling supplies into Britain or ordering the oil illegally online without a prescription in a bid to get their loved ones the drug.
