That same month Ben joined the referral waiting list for
Bedrocan, and in March he was seen by a doctor who
agreed it was the right course of treatment.
Parents Joanne and Paul were then told they needed a
“It just feels like
I’m banging my
head against a
brick wall. Those
in control need
to work with us,
but it feels like they’re
working against us.”
second opinion.
“He couldn’t even drink at that point, we were managing
to only get about 20ml of fluid in him a day and he was
really deteriorating quickly.”
Finally, a ray of hope. The family had a second opinion
from The Portland Hospital in London and after waiting
for the administration processes, Ben started taking the
medication in April.
But the prescription was private, meaning the family had
to fund the cost.
Using their savings, funds raised by charities and taking
money out of their business was the only way his parents
could maintain this quality of life. But that money pot will
soon dry out.
“The price in the UK is honestly horrific compared to the
price in Holland and we can’t keep sustaining spending
this amount of money.”
The family, like so many others, have been told an NHS
evidence supporting cannabis based medicines.
Joanne was advised to remove Ben from Bedrocan to give
him a wash-out period, and then later admit him into the
medication’s randomised controlled trial in a few months.
“I said to them, ‘Why would I do that?’ to remove him from
this medication and put him back into a stage of hundreds
of seizures a day, just after he’s had this taste of freedom, is
just barbaric.
“The children on this trial could die if they’re put back
into a state of hundreds of seizures, that amount of brain
activity could kill them.”
Taking part in a discussion with the Alder Hey Children’s
NHS Foundation Trust, campaigning with the End Our
Pain group and pleading with doctors has still left the
family with no sustainable solution.
“There are a lot of issues surrounding medical cannabis.
Unfortunately, you end up on this big merry-go-round
where everyone is blaming each other, and you never get
anywhere.
“It just feels like I’m banging my head against a brick wall.
Those in control need to work with us, but it feels like
they’re working against us.”
prescription can’t be issued because of a lack of trials and