Government says two weeks of access for nine-year-old Alfie Dingley to epilepsy care will end
The mother of a nine-year-old boy with a rare and serious type of epilepsy told how she worries her son might die after the government declared that the Netherlands’ deliveries of a life-changing cannabis drug would cease because of Brexit. The Department of Health and Social Care (DHSC) gave Hannah Deacon only two weeks’ notice that because of the end of the transition period,’ prescribed’ “They [the DHSC]said they understand our concern, but they can do nothing. She says she was not even directly notified by DHSC that she would no longer be able to get the drug she describes as “infuriating.” Instead, the letter went to pharmacies across the nation, who were told to advise on “alternative” prescriptions that would be “clinically suitable to convert patients How risky it is, that is.
So it’s totally inappropriate to say, ‘Yeah, you can move to another product, sorry, we can’t help,’
It’s really, very risky, and I’m very scared of what’s going to happen,” she said. “On Dec. 17, the letter was sent, so there was no time for us. We were very fortunate to have been able to secure drugs for a couple of months.
But that isn’t a lot. The lack of time we have, the lack of empathy, of care, is what really makes me mad.
My son is on a drug that works for him, so why are they trying to take it away? “Neurologist Mike Barnes, who led the battle with the Home Office to get Bedrolite prescribed for Alfie, accused the DHSC of a “stunning degree of ignorance” in believing that every cannabis product is the same, even though in each plant there are “147 different cannabinoids” in addition to terpenes that produce very specific medicinal properties.”
He had up to 150 cluster seizures a week by the time he was five, which landed him once a week in the ICU. “Sometimes he would have these seizures for three or four days and then he would have a massive inflammatory reaction with seizures so bad he would almost fly out of bed,” his mother says. He was diagnosed with a rare epilepsy condition caused by a gene mutation that codes f.
And then he has a very complicated inherited epilepsy that causes behavioral problems; he has autism. We don’t have a perfect existence.
Life is still not rosy, but his quality of life is incredible; in two years, he hasn’t been near a hospital,” she said. Barnes said the situation is “horrible.
“He said it was “not an exaggeration,” to say, to say, “not an exaggeration,