Free Medicinal Cannabis for Epileptic Kids on NHS Waitlist
Charlotte Caldwell's epileptic son Billy helped change the law on medical cannabis, and now she has secured free-to-access care for severely epileptic children. She is assisting families to save on private prescription costs of as much as £6000, equivalent to around eight months of treatment.
As many as 90 UK families applying for NHS funding for their child's treatment via the Refractory Epilepsy Specialist Clinical Advisory Service (Rescas) could have their medicinal cannabis paid for by the firms while waiting for a decision. A decision that can usually take as long as eight months.
"When Billy was being considered for NHS funding, I was fortunate enough to have his medical cannabis gifted by the manufacturer supplying it via a private prescription. Not all patients are as lucky as Billy, so I took up the mantle and asked the manufacturers for 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." -Charlotte Caldwell.
Rescas provides a much-needed route to NHS-funded medical cannabis, and other "alternative treatment" options, for refractory epilepsy patients under 18. It was founded in 2020 following a legal challenge brought against the UK Government by MS Caldwell.
Ms Caldwell's son Billy, now 17, used to have up to 100 seizures per day but now goes several months without having any. Althea, Canopy Growth and Cellen all manufacture medical cannabis products prescribed to epileptic children in the UK and have given the idea their full backing.
Since it was legalised in 2018, medical cannabis has been prescribed to 17,000 people in the UK for various conditions such as chronic pain, insomnia, depression and Parkinson's. However, the "stigma" remains, and many GPs are reluctant to prescribe it. Many potential patients are unwilling or too unaware to ask for it.
Ms Caldwell has asked cannabis manufacturers to supply free medicine to child epilepsy undergoing the Rescas process, giving them the same support that Billy received. Potential patients are advised to visit the I Am Billy Foundation website for further details and to register their interest.
"If your child is currently accessing medical cannabis for epilepsy via a private prescription, please 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." -Charlotte Caldwell.
Chief executive of medicinal cannabis Manufacturer Althea, Joshua Fegan, threw his full support behind the project stating, "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" have described the project as a remarkable achievement by a mother compelled by her desire to achieve equality for all children".
They are now calling for those clinics through whom the medications are delivered to show a similar commitment to those families in need and waive their fees. This would make the drug entirely free for these children at the point of use.
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Liz Filmer
