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Charlotte Caldwell with her son, Billy.

Med Cann

Landmark Court Hearing Set to Decide Whether the NHS Should Cover Costs of Billy Caldwell’s Medicinal Cannabis

Billy, who suffers from severe childhood epilepsy, helped change the laws concerning medicinal cannabis two years ago after a successful media campaign, making national headlines. However, since medicinal cannabis was downgraded to allow for it to be prescribed, Billy’s original NHS prescription has been withdrawn.

Charlotte Caldwell, mother to Billy, who’s medical cannabis story changed the face of the law in the UK in November 2018, has a landmark court hearing in Belfast Crown Court on September 7, 2020. This case could have groundbreaking implications for Billy and other UK patients who are reliant on medicinal cannabis for their health.

Billy, who suffers from severe childhood epilepsy, helped change the laws concerning medicinal cannabis two years ago after a successful media campaign, making national headlines. However, since medicinal cannabis was downgraded to allow for it to be prescribed, Billy’s original NHS prescription has been withdrawn. Billy can now only get his medicine privately.

Charlotte Caldwell with her son, Billy

Before gaining access to medicinal cannabis four years ago Billy suffered hundreds of attacks throughout the day and night.

“I was told by doctors that we had exhausted all options. My heart was shattered. I remember lying in bed holding a drugged up Billy counting his seizures in an attempt to stay awake.

“Billy would be turning blue and suffocating. I was holding him, not knowing if I fell asleep whether he would still be alive the next day,” Charlotte recalls.

At Belfast Crown Court, a judge will decide if Billy’s human rights are being infringed upon and whether or not it is in his best interest that the Health and Social Care board fund his medicine. If the case falls in Billy’s favour he will then have the costs of his medicine covered by the Health and Social Care board.

Charlotte said of the court date:

“This is a route we did not want to go down as it is the last resort. For 13 months we have tried to find a resolution through the health department in Belfast. Now we will have to go through a full and comprehensive hearing on September 7 in Belfast High Court. This should not be anything a parent should have to endure to access life saving medicine for their child, it is beyond cruel. If this fails we have nowhere else to turn.” 

Billy has acquired two NHS prescriptions over the last four years but they were both withdrawn after a time. The first putting him into a critical life threatening condition in hospital. The second prescription was cancelled due to the fact that Billy had started puberty and had to be transitioned onto a new medicinal cannabis product. Charlotte was then forced to go to a private clinic in order to get medicinal cannabis for her son.

Embarking on this legal challenge, which started on June 1, 2019, was a last resort by Charlotte after the family had exhausted all other avenues of help for her chronically ill son.

“Two years after Billy changed the law we have not had any medicinal cannabis through the NHS and I’m still living in trepidation not knowing what the future holds.”

This case could be the last chance Billy ever has of ever obtaining the life-saving medicine he needs via the NHS.

“I feel like we’re standing on the edge of a cliff, we know the rock is going to collapse but we just don’t know when,” says Charlotte.

With thanks to Bill Griffin Media.

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