Dozens of epileptic children in the UK are to receive medical cannabis for free, after private companies responded to a Northern Ireland mother’s plea.
Charlotte Caldwell, from Co Tyrone, has campaigned to help families facing large bills for privately prescribed cannabis as they go through a lengthy application process for NHS treatment.
Now, three private manufacturers have agreed to donate medical cannabis to children in the process.
Speaking to Sky News from her home near Castlederg, Ms Caldwell said the move “will make a huge difference for these families. Right now, as we all know, we are in the midst of a cost of living crisis and this really It’s going to ease the financial burden on those families.
Billy, Mrs. Caldwell’s son, who lives with severe refractory epilepsy, was the first person in the UK prescribed medical cannabis after your mother embarked on an intensive campaign.
In November 2018, Sajid Javid, the then Minister of the Interior, changed the law to allow specialist doctors to prescribe medical cannabis to patients.
Billy, now 17, takes a cannabis treatment three times a day, and his mother says it has reduced the number of seizures he has from around 100 a day to virtually none.
“Billy is doing amazingly well, he’s made a huge difference,” said Ms Caldwell.
Charlotte Caldwell and Billy, age 12 (left) in 2018
90 families with epileptic children trying to access treatment
Around 90 families with epileptic children in the UK are trying to access cannabis treatment on the NHS, but considerable obstacles remain.
They must apply for NHS funding for their child’s treatment through the Refractory Epilepsy Specialist Clinical Advice Service (RESCAS), a process that can take up to eight months. As they await a decision, they face bills of thousands of pounds for the cannabis products.
In London, Maddy Barrindon-Amat is involved in the NHS process for the treatment of her 16-year-old daughter Mia, who has epilepsy. In the meantime, she had to take out a loan to pay for the drugs.
“In terms of costs, we are paying around £780 every four weeks for cannabis medicine from a private clinic,” he said.
Charlotte and Billy Caldwell
“When we realized that in order to get the cannabis products that we wanted and we had to go private, our friends and family pitched in and helped us a lot, and then we had to take out a loan to try to move forward.
“Our lending is slowly going down so we really need to find another way to get cannabis products through the NHS.”
Ms Barrindon-Amat is hopeful that she can take advantage of the free cannabis that Ms Caldwell has negotiated with private manufacturers.
“If we didn’t have to worry about finding that money every four weeks to pay for a drug, it would take a lot of weight off our shoulders.
“It has been perceived that the NHS is being very slow in accepting this. We already have enough pressure and we don’t need more.”
The SNS defends the RESCAS process
A spokesperson told Sky News: “These are individual clinical decisions and many clinicians and their professional bodies remain concerned about the limited evidence available on the safety and efficacy of these unlicensed products.
“We encourage all manufacturers to participate in the UK medicines regulator’s licensing process, which would help give clinicians the confidence to use the products, in the same way they use any other recommended licensed medicines.” for use in the NHS”.
Families like the Caldwells have no doubts about the positive impact medical cannabis has had on their children’s conditions, but they understand that every precaution must be taken by the health service.
Until the system can be further simplified, the private sector’s move to donate cannabis products has been described as very welcome, especially as the cost of living crisis continues to affect UK families.
