Free medicinal cannabis is to be donated to epileptic children in the UK
It comes after a mother campaigned for help for families facing large bills for privately-prescribed cannabis as they go through a lengthy application process for NHS treatment
Scores of epileptic children in the UK are set to receive free medicinal cannabis, after private firms responded to a Northern Ireland mother’s plea.
Charlotte Caldwell, from Co Tyrone, campaigned for help for 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 medicinal cannabis to children who are in that process.
Speaking to Sky News from her home near Castlederg, Ms Caldwell said the move “will make a huge difference to these families. At the moment, as we’re all aware, we’re in the middle of a cost of living crisis, and this is really going to relieve the financial burden on those families”.
Ms Caldwell’s son Billy, who lives with severe refractory epilepsy, was the first person in the UK to be prescribed medicinal cannabis after his mother embarked on an intensive campaign.
In November 2018, Sajid Javid, the then home secretary, changed the law to allow patients to be prescribed medical cannabis by specialist doctors.
Billy, now aged 17, receives a cannabis treatment three times a day, and his mother says it has reduced the number of seizures he suffers from around 100 a day to practically none.
“Billy’s doing incredibly well, it’s made a massive difference,” said Ms Caldwell.
90 families with epileptic children trying to access treatment
Around 90 families with epileptic children in the UK are attempting to access cannabis treatment on the NHS, but considerable hurdles remain.
They must apply for NHS funding of their child’s treatment via the Refractory Epilepsy Specialist Clinical Advisory Service (RESCAS), a process that can take as long as eight months. While they await for a decision, they face bills of thousands of pounds for the cannabis products.
In London, Maddy Barrindon-Amat is engaging with the NHS process for treatment for her 16-year-old daughter Mia, who has epilepsy. In the meantime, she’s had to take out a loan to pay for the drugs.
“Cost-wise we are paying about £780 every four weeks for the cannabis medication from a private clinic,” she said.
“When we realised that to get the cannabis products that we want and had to go privately, our friends and family chipped in and helped us out a great deal, and we then had to take out a loan to try and keep going.
“Our loan is slowly dwindling, so we really need to find another way of getting the cannabis products through the NHS.”
Ms Barrindon-Amat is hopeful she can avail of the free medicinal cannabis that Ms Caldwell has negotiated from the private manufacturers.
“If we didn’t have to worry about finding that money every four weeks to pay for a medication, it’d be a huge weight lifted off our shoulders.
“The NHS has been perceived as being very slow on the uptake for this. We’ve already got enough pressure, and we don’t need any more.”
NHS defends RESCAS process
A spokesperson told Sky News: “These are individual clinical decisions and many doctors and their professional bodies remain concerned about the limited evidence available on the safety and efficacy of these unlicensed products.
“We would encourage all manufacturers to engage with the UK medicines regulator’s licencing process, which would help provide clinicians with the confidence to use the products, in the same way they use any other licensed medicines that are recommended for use on the NHS.”
Families like the Caldwells are in no doubt about the positive impact medicinal cannabis has had on their children’s conditions, but understand the health service must take every precaution.
Until the system can become more streamlined, the move from the private sector to donate cannabis products has been described as hugely welcome, especially as the cost of living crisis continues to hit UK families.
