A landmark court hearing is set to decide whether the NHS should cover the cost of a patient’s cannabis medicine.
Charlotte Caldwell, whose son Billy relies upon medicinal cannabis to keep him alive, has a landmark court hearing in Belfast Crown Court on September 7, 2020 to decide whether the NHS will cover the cost of his cannabis medication. This case could have groundbreaking implications for Billy and other UK patients who rely on medicinal cannabis.
Billy, who suffers from severe childhood epilepsy, helped change the laws concerning medicinal cannabis two years ago after a successful media campaign. However, since medicinal cannabis was downgraded to allow for it to be prescribed, Billy’s original NHS prescription was withdrawn. The result was that Billy can now only get his medicine privately.
A life changing court case
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,” recalls Charlotte. “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.”
The judge will decide if Billy’s human rights are being infringed 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Billy has acquired two NHS prescriptions over the last four years but they were both withdrawn. The first time 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 him.
Embarking on this legal challenge, which started on June 1, 2019, was a last resort by Charlotte after they had exhausted all other avenues of help for her chronically ill son.
Caldwell said: “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.