South Wales teenager Bailey Williams has chronic seizures which result in him regularly being hospitalised.
His parents are fighting for him to be prescribed medicinal cannabis. They thought legislation introduced in November would enable him to access it. But Bailey has been turned down by both his neurologist and following a second opinion.
Home Secretary Sajid Javid said following the introduction of the new guidelines that specialist doctors in the UK could legally prescribe such products for patients with an "exceptional clinical need." Others forms of cannabis remain illegal.
Our reporter Emma Grant has been speaking to Bailey's mum Rachel Rankmore. She is one of 17 families across the UK currently being supported by the End Our Pain campaign group trying to get access to medicinal cannabis for their children who have epilepsy or other medical needs. But there are thousands of children with refractory epilepsy in the UK who could benefit from a prescription of medical cannabis.
Rachel says with every seizure a little bit of Bailey is taken away from them. She fears he will die if he doesn't get the treatment.
LISTEN to interview here:
Bailey was first diagnosed with epilepsy at two and a half years of age.
By the time he was Primary school age he was starting to show signs of learning difficulties as a result of the seizures and the side effects of the drugs he was taking
At age seven, Bailey was diagnosed with Lennox-Gastaut Syndrome (a severe form of epilepsy). His mobility started to deteriorate and he needed a wheelchair as he was suffering from drop seizures (when you fall to the ground and shake violently.
When he was 13 his condition got even worse - to the point that he was being hospitalised every week via ambulance - he needed 3 doses of rescue medicine - before he was loaded up with drugs in hospital. His parents were so desperate to help ease his symptoms - they started looking at alternatives - to reduce the horrendous side effects he'd been suffering from the drugs he was taking.
They decided to fund the purchase of CBD oil which has helped ease his symptoms over the past 4 years - but Bailey still has epileptic fits daily because it hasn't got the THC ingredient.
THC is in full extract cannabis medicine which was made legal for prescription by the UK Government on November the 1st 2018. The Williams family thought when that law was passed Bailey would be able to get access to the drug. But they have been turned down by their neurologist and following a 2nd opinion too.
To date no new NHS prescriptions have been issued by any medical teams across the UK. Gower MP Tonia Antoniazzi raised the matter at Prime Minister's Questions last week. Asking Theresa May why children have not been issued the medicine.
LISTEN to what Tonia Antoniazzi and Theresa May had to say here:
Bailey's family like many across the UK are now lobbying for the guidelines to change so that medical practitioners are able to prescribe without fear of losing their jobs. Doctors are currently relying on the R.C.P. and B.P.N.A. to provide guidelines in the absence of NICE guidelines which will come out at the end of this year. The guidelines say there is not enough evidence to prescribe the product.
What we have learnt is that some families are so desperate they are being forced to go overseas to get treatment - if you go to a neurologist in Holland and Spain they can prescribe medicine. Those issued a prescription can pick up the medicine from a pharmacy in the country. But if anyone is caught with it in their luggage entering the UK it will be confiscated and adults risk being sent to jail.
Alfie Dingley's fight to get medicinal cannabis brought the issue to the public attention last year. His high profile campaign resulted in him becoming the first patient in the UK to get the drug through a licence which was issued by his doctors in June last year. They were licensed to prescribe it for him. Then after the law change - the licence was no longer needed so he was issued with an NHS prescription.
His mum Hannah is ambassador for the End Our Pain initiative and has told us how the drug has changed her son's life. Next month Hannah will be meeting with MPs and presenting a petition to Downing Street.
LISTEN to interview here:
Campaign group End Our Pain is now urging people across the UK to write to their local MP. Over 49,322 have so far sent emails to their member of parliament. The petition will be handed to Downing Street next month. If you want to get involved too just click the link here: https://endourpain.org/