The first years of my son’s life were like something out of a nightmare – each week, he was suffering up to 150 debilitating seizures. Just before Christmas in 2015 when we received the news that Alfie, now five, had a non-inherited genetic mutation called PDCH19. Alfie may improve with age, we were told, but there was nothing more doctors could do to treat him beyond what they were already doing.
For the next five years, Alfie was either in hospital or, if he was not having seizures, their horrific side effects – not to mention those from the medication he was given. He became violent and aggressive; I was frightened to sit with him sometimes, knowing he was about to pull my hair or scratch my face.
But Alfie didn’t know what he was doing most of the time. Moving from screaming to crying in a matter of moments, he had no consistent quality of life. Neither did we – I was fearful for my daughter’s safety, I couldn’t risk leaving them alone with each other.
I spent long hours researching ways to treat Alfie’s epilepsy naturally – ways which at least wouldn’t provoke such awful, frightening side effects. Medical cannabis kept being mentioned, and I began to research how it works, and speak to parents across the world who were using cannabis for their children’s epilepsy.
We decided to move to Holland in 2017, due to cannabis not being available as medicine in the UK. There, We arrived home in February 2018 after a successful five months treating Alfie’s seizures.
“After much media and lobbying, my son became the first person in the UK to be issued with a medical cannabis prescription on the NHS.”
We then launched a campaign to persuade the Government to allow us to use cannabis medicine Alfie had received on the NHS. After much media and lobbying the campaign was a success, and in June 2018, my son became the first person in the UK to be issued with a medical cannabis prescription on the NHS.
This monumental moment gave thousands of families across the nation the hope that their children, like Alfie, might finally be able to access the life changing medicines they so desperately need.
Almost three years on, however, this couldn’t be further from the truth. Access to medical cannabis is still blocked at every single turn, so much so that some families pay upwards of £2,500 each month for private prescriptions to give their children a quality of life they deserve. These families never imagined their situation could get worse.
Sadly, they were wrong.
In December, the Department of Health, informed the medical cannabis sector – but sadly not to the parents directly – that medicinal cannabis prescriptions issued in the UK, whether privately or on the NHS, would no longer be lawfully dispensed due to the end of the Brexit transition period.
This was the worst Christmas present my family and the many others affected could have received. The devastating news told us that medical cannabis supplies from Holland would be terminated from 1 January 2021. With two weeks’ notice, we lost access to the only treatment which has drastically improved the lives of my son, and over 40 other severely epileptic children in Britain.
Snatching this away was a completely debilitating blow for parents who are already struggling to care for extremely poorly children. Alfie had an NHS prescription for cannabis medicines for two and a half years – how could anyone with any sanity, decide to subject my son to the pain he suffered before?
“Time after time, we and many other families have made desperate pleas to the government for urgent assistance. These have always been ignored.”
I understand the challenge of balancing public health with Brexit is huge, but for the Government to inform us right before the Brexit deadline that these prescriptions have been annulled is a vast underestimation of what they mean to our children.
Medicinal cannabis products are incredibly complex, and they cannot be interchanged easily – especially for patients with refractory epilepsy. Withdrawing our children’s treatment does not just mean picking something else up from the pharmacist instead. It is incredibly dangerous and risks the hospitalisation, maybe even death, of our children. There are no guarantees that other products would work, and Alfie’s clinicians have strongly advised against changing any medicines in his regime. It is simply unacceptable to even ask this of us.
Time after time, we and many other families have made desperate pleas to the government for urgent assistance. These have always been ignored. All we can do is remain optimistic that 2021 is the year our leaders recognise and alleviate our plight. It’s time to ensure safe access to the medical cannabis Alfie and others are prescribed, and finally deliver access to medicinal cannabis on the NHS to end the horrendous need for these families to raise thousands of pounds every month, just to keep their children safe.
Hannah Deacon is a campaigner and parent. Follow her on Twitter at @Hanseizuremum
Have a compelling personal story you want to tell? Find out what we’re looking for here, and pitch us on ukpersonal@huffpost.com