I AM RESCAS

Four years on from the confiscation of my son Billy’s Medical Cannabis at London Heathrow Airport, patients are still going without much-needed Cannabis-Based Medicines, needlessly destroying the quality of life for many vulnerable patients and risking unnecessary deaths.

While the prescription of Medical Cannabis has been legal in the UK since November 2018, the process for obtaining an NHS-funded prescription is cumbersome, forcing many families to resort to expensive private prescriptions or even the black market.

Billy, who suffers from epilepsy and autism, changed the law on Medical Cannabis in eight days flat and was the first patient to be issued a Medical Cannabis license and the first to be prescribed the medicine by the NHS, following the confiscation of his Medical Cannabis by tearful customs officers at Heathrow Airport after Billy and I returned from Canada, where we had travelled to obtain his life-saving medicine after his GP in the UK was forced to stop prescribing it.

Within days of the medicines confiscation my little boy was once again experiencing violent seizures and was rushed to the Chelsea and Westminster Hospital where his NHS doctor notified the Home Office that Billy’s condition had moved to life-threatening. Thankfully Sajid Javid, the then Home Secretary, returned Billy’s medicine the next day and later that year, in November 2018, he changed the law to allow patients to be prescribed Medical Cannabis by specialist doctors (albeit with many hurdles and limitations in place).

Nearly four years later, Billy’s is one of 1,486 NHS-funded prescriptions for Medical Cannabis and, although many of these are repeat prescriptions to the same patient, 537 were issued by NHS doctors as Specials, showing the growing acceptance of Medical Cannabis within the NHS.

It is estimated that up to 60+ paediatric epilepsy patients are unable to access NHS-funded Medical Cannabis and are allegedly paying up to £2,000 a month for a private prescription. More widely, 1.4 million people are using black market cannabis to treat a medical condition.

I am offering my time and lived experience to affected families in the hope that your children can avoid the same hurdles that Billy faced in his six-year quest to receive NHS-funded Medical Cannabis. Today, four years on from the lowest point in Billy’s journey, I want to inform in-need families that:

1. A framework does exist, but is only available to those 18 years old or under:

The Refractory Epilepsy Specialist Clinical Advisory Service (RESCAS) was set up in 2020 to support paediatric neurologists when considering Medical Cannabis (and other new treatments) in cases of intractable epilepsy: following an assessment, its impartial recommendations are passed onto patients’ own doctor. I have first-hand knowledge that accessing Medicinal Cannabis through a RESCAS referral works because it was through this route that Billy had his NHS funding reinstated in October 2020.
https://www.england.nhs.uk/wp-content/uploads/2020/02/Refractory-Epilepsy-Specialist-Clinical-Advisory-Service-Specification.pdf

RESCAS’s remit is limited to patients under the age of 18, however, I am calling for this to be extended to all ages.

2. It is estimated that up to 60+ paediatric epilepsy patients in the UK are being privately prescribed Medical Cannabis:

I am inviting patients in need of NHS funding for their Medical Cannabis prescription to get in touch with me at the I am Billy Foundation (contact details below) for advice and assistance on the best way for them, given the uniqueness of their individual circumstances, to navigate the bureaucratic hurdles involved in obtaining an NHS funding.

3. In the absence of sufficient NHS provisions, private prescriptions are partly fulfilling patient needs, but at a huge personal financial cost – up to £ 24,000 per year.

To urgently ease the financial burden faced by patients, the I Am Billy Foundation has teamed up with a number of medical manufactures to gift paediatric epilepsy patients their medicines while they are going through the RESCAS process – it was through a similar arrangement that Billy was initially able to obtain his medicine prior to the approval of an NHS reimbursement.

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.

Charlotte x