The Story So Far
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2011
Hannah and Drew welcome the birth of Alfie.
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2012
In the spring of the following year, Alfie experiences his first cluster of seizures.
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2016
By 2016, the clusters have become weekly.
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2017
Alfie is administered a wide range of medications in an attempt to control the seizures.
Anti-epileptic drugs do not help him and only steroids stop his seizures, but have a terrible negative impact on his quality of life.
The family is traumatised by Alfie’s condition and the constant fear that any one of his seizures could prove fatal, as he always stops breathing.
Desperate, Hannah researches alternative treatments. This culminates in her learning about medical cannabis and taking Alfie to Holland, where access to medical cannabis is legal. There, he is administered this medicine and within days, his condition begins to improve. -
2018
As funds run out, the family is forced to return to the UK where access to medical cannabis is not allowed.
Hannah joins forces with campaigners calling for the legalisation of access to medical cannabis under prescription.
Together they mount a comprehensive and intensive political and media campaign. There are many ‘ups and downs’ along the way. Numerous MPs and Members of the House of Lords lend their support. Celebrities including Sir Patrick Stewart and Joanna Lumley add their voices to the campaign. Hannah and Alfie’s story dominates the media headlines. Other families in similar situations join the fight. -
June 2018
By June 2018, the pressure finally starts to pay off. Alfie is granted a special licence enabling him to be prescribed the medical cannabis he so desperately needs. He is granted an NHS prescription for the medicine.
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November 2018
The law is finally changed to legalise access to medical prescriptions under the direction of a specialist doctor.
The hopes of many other families with children and young people similarly affected by drug-resistant epilepsy are raised. They hope that they too will be able to access medical cannabis on an NHS prescription.
However, despite a positive report by Dame Sally Davies, within weeks, it becomes apparent that as a result of extremely tight guidance from the NHS, the GMC, NICE and various medical bodies, nearly all these families are denied an NHS prescription.
Rather than not get the medicine, many are forced to raise up to £2000 a month to pay for it privately. Significant improvements in their condition are recorded. -
2018 - 2025
Tens of thousands of adult patients benefit from the law change and receive private prescription for a range of conditions.
Private clinics spring up, but no new regulations are put in place.
Despite so much changing, the original cohort of families with children affected by drug-resistant epilepsy who did so much to change the law are left having to fund raise to pay privately.
Despite Alfie having the benefit of an NHS prescription, Hannah dedicates a huge amount of time to trying help these families. She continues to raise their plight in parliament, to the Government and across the media. She never gives up on her pledge to keep fighting for them and becomes a nationally recognised figure. -
2025
Tragically, Hannah is struck down by cancer and dies in 2025 at the age of just 45.
This campaign is in her honour and is carrying on her call that those other families should be helped, not obstructed and should not have to pay privately for the medical cannabis essential for their children. -
2026
Partly in her memory, the Hannah Deacon Campaign for Access to Medical Cannabis is established to secure Government funding for an observational trial for the cohort of children and young people already recieving medical cannabis treatments.