Epilepsy
Charlotte Caldwell fight for free medicinal cannabis for epileptic patients on NHS
Epilepsy in children will be provided free treatment by private medical firms if the families are on waiting lists with the NHS.
With the help of her epileptic son Billy, Charlotte Caldwell has helped change the law on medical cannabis, securing free-to-access care for epilepsy in children that could save up to £6,000 in private prescription costs.
In the UK, 90 families applying for NHS funding for their child’s treatment through the Refractory Epilepsy Specialist Clinical Advisory Service (Rescas), which can take up to eight months, may be able to receive their medicinal cannabis while they await a decision from the firms. Medicinal cannabis will not be gifted if a patient is refused treatment for any reason.
Ms. Caldwell said in an interview with the Independent: “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 Rescas 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.”
It used to be that Billy, now 17, had up to 100 seizures a day, but now he goes several months without having one. As a result of a legal challenge Ms. Caldwell brought against the UK government in 2020, Rescas was established. Refractory epilepsy patients under 18 can now access NHS-funded medical cannabis, as well as other “alternative treatment” options.
Epilepsy in Children: A long battle for Billy
Ms. Caldwell last month launched a new campaign to mark the fourth anniversary of Billy’s medical cannabis being confiscated at Heathrow Airport, which was the spark that led to laws being changed to allow doctors to prescribe it. Althea, Canopy Growth, and Cellen, who all manufacture medical cannabis for epilepsy patients in the UK, have given their backing to the new campaign.
Despite the fact that 17,000 people have now been prescribed medical cannabis in the UK for conditions such as chronic pain, depression, insomnia, and Parkinson’s, many are still using it illegally. Health officials continue to be reluctant to prescribe the treatment, claiming stronger evidence is needed before mass prescriptions are recommended.
As a result of Billy’s experiences with the Rescas process, Ms. Caldwell has called on more medical cannabis manufacturers to offer free medicine to children suffering from epilepsy. Patients are encouraged to visit the I Am Billy Foundation website for more information and to register their interest.
Ms. Caldwell said: “If your child is currently accessing medical cannabis for epilepsy via a private prescription, please do get in touch. While I am unable to guarantee every outcome, my promise to you is that, as a mother previously in the exact circumstances that you currently find yourself, I and the trustees of the I Am Billy Foundation will do all that we possibly can to support your child through the Rescas process, completely free of charge.
“Billy and I continue to lobby the other medical cannabis manufacturers and I am confident that this is just the start for wider patient access to medical cannabis via the NHS.”
In the Independent interview, Althea chief executive Joshua Fegan also 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.”
The trustees of the I Am Billy Foundation described the project as “a tremendous achievement from a mother driven by her desire to achieve equality for all children”.
They said: “What we now call for are those clinics through whom the medications are delivered to show a similar commitment to those in this great need and waive their fees so that the medication is genuinely ‘free at the point of use’ for these children and their families.”
