Shock death of campaigning mother who triggered change in cannabis laws for epileptic kids
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.
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.
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.
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.
Hashtags
Try Our AI Features
Explore what Daily8 AI can do for you:
Comments
No comments yet...
Related Articles
The Independent
3 hours ago
- The Independent
Chancellor unveils £6bn NHS funding after health-centred spending review
Some £6 billion will be spent on speeding up testing and treatment in the NHS, Rachel Reeves has announced, after she placed the health service at the heart of Government spending plans. The Chancellor unveiled the investment, which includes new scanners, ambulances and urgent treatment centres aimed at providing an extra four million appointments in England over the next five years, after Wednesday's spending review. The funding is aimed at reducing waiting lists and reaching Labour's 'milestone' of ensuring the health service carries out 92% of routine operations within 18 weeks. In the review, Ms Reeves set out day-to-day spending across Government for the next three years, as well as plans for capital investment over the next four years. The NHS and defence were seen as the winners from the settlement, as both will see higher than average rises in public spending. This comes at cost of squeezing the budgets of other Whitehall departments and experts have warned tax rises may be needed later this year. The Chancellor and Sir Keir Starmer both sought to portray the review as a 'new phase' for the Government, following the criticism Labour has faced during its first year in power, including over cuts to winter fuel allowance. Ms Reeves claimed the NHS had been 'put on its knees' as a result of under-investment by the previous government, adding: 'We are investing in Britain's renewal, and we will turn that around.' The new £6 billion investment will come from the capital settlement for the NHS and will also help to speed up diagnoses with scans and treatment available in places such as shopping centres and high streets. The scale of day-to-day spending for the NHS is akin to an extra £29 billion a year. In a broadcast interview on Wednesday evening, Ms Reeves said the Government was 'confident' it could meet its pledge to reduce waiting lists after the boost to NHS spending. But while health and defence have benefited from the review, the Home Office, Ministry of Housing, Communities and Local Government, Department for Culture, Media and Sport, Department for Transport and Department for the Environment, Food and Rural Affairs are all in line for real-terms cuts in day-to-day spending. The Foreign Office is also in line for real-terms cuts, mainly as a result of a reduction in the overseas aid budget, which was slashed as part of the commitment to boost defence spending to 2.6% of gross domestic product – including the intelligence agencies – from 2027. Ms Reeves acknowledged 'not everyone has been able to get exactly what they want' following Cabinet squabbling over departmental budgets. She said 'every penny' of the spending increases had been funded through the tax and borrowing changes she had announced in her first budget. The Chancellor also insisted she would not need to mount another tax raid to pay for her plans, but experts warned the money for the NHS might still not be enough and the Government is under international pressure to boost defence funding further. Paul Johnson, of the Institute for Fiscal Studies, described the hospital waiting times target as 'enormously ambitious', adding: 'And on defence, it's entirely possible that an increase in the Nato spending target will mean that maintaining defence spending at 2.6% of GDP no longer cuts the mustard.' At a summit later this month Nato members will consider calls to increase spending to 3.5% on defence, with a future 1.5% on defence-related measures. Steven Millard, interim director of the NIESR economic research institute, said the Chancellor's non-negotiable fiscal rules, coupled with the 'small amount of headroom' in her spending plans, meant 'it is now almost inevitable that if she is to keep to her fiscal rules, she will have to raise taxes in the autumn budget'. Elsewhere, policing leaders warned forces may need to make deep cuts after their settlement was announced. The spending review provides more than £2 billion for forces, but ministers have acknowledged some of that 'spending power' will come from council tax hikes.
Scottish Sun
3 hours ago
- Scottish Sun
Addiction to ketamine rises eight-fold in a decade as powerful tranquiliser becomes popular with Gen Z
Doctors say heavy use can cause liver disease and permanently damage the bladder and kidneys GENERATION K Addiction to ketamine rises eight-fold in a decade as powerful tranquiliser becomes popular with Gen Z DOCTORS have sounded the alarm over an eight-fold rise in ketamine addiction in a decade. The powerful tranquilliser is popular with Generation Z because of its relatively low cost, experts say. Advertisement 1 Addiction to ketamine has risen eight-fold in a decade, experts have warned Credit: Getty Clinics in England treated 3,609 people of all ages for addiction last year, eight times more than 426 in 2014, figures reveal. Ketamine, also referred to as 'K' or 'Ket', numbs pain and can cause a trippy high. Dealers sell it in powder form for around £20 to £40 a gram compared with £40 to £60 a gram for low-quality cocaine. Doctors say heavy use can cause liver disease and permanently damage the bladder and kidneys. It is linked to constipation, depression and loss of mental sharpness. Advertisement Many medics fail to understand how addictive it can be, an NHS report said. Led by Dr Irene Guerrini of the South London and Maudsley NHS Trust, it called the drug's prevalence 'concerning'. It said: 'As ketamine use increases, more individuals are seeking treatment for addiction. 'Long-term use can seriously harm both physical and mental health, diminishing quality of life, affecting personal relationships and impairing academic or professional performance.' Advertisement Dr Guerrini called for stricter guidelines on how the NHS uses the drug and more funds for treatment and prevention. Ministers are considering uprating 34878330from a Class B to Class A drug.
The Sun
3 hours ago
- The Sun
Addiction to ketamine rises eight-fold in a decade as powerful tranquiliser becomes popular with Gen Z
DOCTORS have sounded the alarm over an eight-fold rise in ketamine addiction in a decade. The powerful tranquilliser is popular with Generation Z because of its relatively low cost, experts say. Clinics in England treated 3,609 people of all ages for addiction last year, eight times more than 426 in 2014, figures reveal. Ketamine, also referred to as 'K' or 'Ket', numbs pain and can cause a trippy high. Dealers sell it in powder form for around £20 to £40 a gram compared with £40 to £60 a gram for low-quality cocaine. Doctors say heavy use can cause liver disease and permanently damage the bladder and kidneys. It is linked to constipation, depression and loss of mental sharpness. Many medics fail to understand how addictive it can be, an NHS report said. Led by Dr Irene Guerrini of the South London and Maudsley NHS Trust, it called the drug's prevalence 'concerning'. It said: 'As ketamine use increases, more individuals are seeking treatment for addiction. 'Long-term use can seriously harm both physical and mental health, diminishing quality of life, affecting personal relationships and impairing academic or professional performance.' Dr Guerrini called for stricter guidelines on how the NHS uses the drug and more funds for treatment and prevention. Ministers are considering uprating 34878330from a Class B to Class A drug.
