Government urged to protect children’s vital medicine

Twenty families, each with a severely epileptic child, have urged the government to help ensure that their access to medical cannabis, which has transformed their children’s lives, is not shut off by COVID-19 restrictions.

The families, who campaign under the End Our Pain umbrella, have been fighting a long and frustrating campaign to secure NHS access to the medicine since its legalisation in November 2018.

However, there has been an almost total block on NHS prescriptions and the families have had to fundraise around £2,500 a month to pay for the medicine privately and import it from Holland.

Obscure importation rules mean that someone has to physically go and collect the medicine in person, a situation which is now threatened by restrictions on cross-border movements.

Additionally, the families are now struggling to fundraise as most fundraising initiatives usually involve some form of community interaction, a situation that is effectively banned under developing Government guidance aimed at suppressing coronavirus.

Hannah Deacon, whose son Alfie Dingley was at the forefront of the successful campaign to have medical cannabis legalised, said: “Our children are some of the most vulnerable in the country and our families are at breaking point and simply can’t take any more.

“We are overwhelmed with worry.  It surely can’t be beyond the combined resources and wit of the Government to help us.

“We desperately need some security of supply of the medical cannabis that is the only medicine that keeps our children relatively well.”

Jo Griffiths, spokesperson for the families and whose son Ben relies on medical cannabis, said: “We cannot wait any longer, for us this is the perfect storm. In the first instance, our children’s condition means they are extremely vulnerable to the virus. And now it looks like our ability to fundraise and get the only medicine that works for him brought in from Holland is being shut down.  For our children, this is potentially life and death.

“As an example, if my son or his friends deteriorate because we can’t secure access to his medicine it will mean 36 hours in intensive care, a service that is going to be under extreme pressure.

“And if you add in the possibility of our children being infected with coronavirus as well, the consequences are unthinkable.

A spokesperson for the End Our Pain campaign said: “The families that End Our Pain are supporting met with the Secretary of State for Health and Social Care exactly one year ago today when they travelled to Westminster to raise awareness of their plight.

“He promised them action and told them that he would help them. And we know that his team is working to unlock the problems within the NHS and we appreciate that.

“But given the severity of this situation he must assure these parents that their children’s medicine supply will be protected at such a distressing time. We are asking for common sense and compassion to prevail to protect these children.”