Epileptic children to be gifted cannabis from private clinics while on NHS waitlist

August 25, 2022

Good news for families who have children on the eight-month long waiting list for medicinal cannabis to be prescribed on the NHS; leading cannabis campaigner Charlotte Caldwell has persuaded medicinal cannabis firms to gift the expensive treatment to children while they wait for the NHS to make a decision.

Charlotte’s son Billy was the first person in the UK to be prescribed medicinal cannabis after she led a campaign called I am Billy. The media pressure from the campaign resulted in a change to the law in November 2018 for cannabis to be prescribed by specialist doctors in the UK. Billy was suffering from up to 100 seizures per day before he began his NHS-funded cannabis-based treatment for his severe refractory epilepsy, he can now go months without having one. 

The NHS however, has been slow to adapt and as of February 2022, only three patients were receiving cannabis-based treatment on the NHS. This is where Charlotte Caldwell stepped in and put out a call to arms for private cannabis companies to bridge the gap and offer treatment for free to struggling families of children suffering from refractory epilepsy. 

Speaking exclusively to i news, Charlotte said, “During the period when Billy was being considered for NHS funding, I was fortunate enough to have his medical cannabis gifted by the manufacturer who was supplying it via a private prescription. Not all patients are as lucky as Billy, which is why I took up the mantle myself and went to the manufacturers to ask them to help. I am delighted to secure such a potentially life-changing outcome for fellow paediatric epileptic patients.

“We can’t guarantee that these kids will be successful through the RECAS process, but they’re going to get between six and eight months’ medicine gifted to them which will relieve the financial burden for a while in these hard times. And then hopefully have the long-term NHS funding if their case is successful.”

The service that decides if a patient should receive cannabis-based treatment via the NHS is called the Refractory Epilepsy Specialist Clinical Advisory Service (RECAS). If RECAS decide that cannabinoid-based treatment is not appropriate for the patient the firms will cease the gifted supply to the patient. 

The businesses Canopy Growth and Althea, who are producers, suppliers and exporters of cannabis, and Cellen who supply and manufacture cannabis-based medicines, and also support the NHS with their MedCanHub software platform, have all agreed to back Charlotte Caldwell’s plea for firms to step in to provide the urgently needed stop-gap of free-to-access care of up to £6000 worth of treatment, which is the equivalent to eight months of treatment. 

Chief executive of cannabis manufacturer Althea, Joshua Fegan said, “We are passionately committed to improving patient medical cannabis access pathways in the UK. We hope that our support for the foundation will benefit many patients just like Billy, and that it leads to further enhancements of NHS funding programmes for medical cannabis.”

From Canopy Growth, General manager Paul Steckler said, “Supporting and facilitating patients’ access to medical cannabis is a critical element of Canopy Growth’s vision to unleash the power of cannabis to improve lives. I’m proud that through our Spectrum Therapeutics medical division, we are able to provide compassionate access to patients that require these medical cannabis products while continuing to advocate for the critical regulatory advancements in Europe that will further improve access to high-quality medical cannabis products in the near term.”

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