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  1. ITV Report

'They're putting our children's lives on the line' Parents of epileptic children call for action

Families whose epileptic children have been denied NHS prescriptions have submitted a handwritten request to the Prime Minister asking for urgent intervention.

The date marks six months since families like Rachel Rankmore and Craig Williams from Cardiff met with the Health Secretary face-to-face at an event held in Westminster.

Six months on, all ten families are still funding private prescriptions for cannabis oil.

Bailey has severe epilepsy which causes him to have seizures.

Parents Rachel Rankmore and Craig Williams from Cardiff joined other families in Westminster today in a silent protest asking the UK government to take action.

Families are doing a silent protest today to get the government to intervene. Credit: ITV

Their son Bailey has severe epilepsy which causes him to have seizures.

He sometimes has 100 seizures a day.

Bailey's parents pay for a private prescription of cannabis oil. Credit: Rachel Rankmore

After years of desperation, Bailey's parents felt they had ran out of conventional treatment options and turned to cannabis oil on a private prescription.

Bailey has experienced seizures from two and a half. Credit: ITV Wales

It's been horrific, horrific 10 years plus. He has seizures from two and a half. 15 years of his life have been taken away from him and ours because it has a grave impact on the whole family.

– Rachel Rankmore, Bailey's mum
Bailey has seizures from 2 and a half years old. Credit: Rachel Rankmore

They say that since he has been taking cannabis derived oil he is now able to play and have a relationship with his brothers.

Bailey's mum said "he's thriving."

Bailey's mum said since Credit: ITV Wales

He's a different boy, he's the boy we had seven years ago. He's playing, he's laughing, engaging in conversation and he's playing ball with his dad which he hasn't done in 10 years.

– Rachel Rankmore, Bailey's mum

But because they cannot get the oil prescribed on the NHS, they have to find their own way of funding it.

They are among 10 families of children with epilepsy who have been denied NHS prescriptions.

Bailey's parent and other families are having to find the money to pay for a private prescription. Credit: ITV Wales

We are all fundraising, some people are remortgaging their houses and other people simply cannot get hold of money to get a prescription. it's catastrophic. We can't just stop this medicine.They're putting our children's lives on the line.

– Rachel Rankmore, Bailey's mum

In a statement, the Welsh Government who's in charge of health in Wales said specialist doctors have been allowed to prescribe cannabis-derived products for medicinal use from November 2018, however they are only recommended for use in a very limited number of cases.

The primary concern of doctors will always be to ensure the safety of their patients. None of the cannabis products are a licensed medicine, which means none of them have passed the rigorous safety quality tests. They may pose greater risks to patients.

– Welsh Government statement

But Rachel said cannabis oil is Bailey's lifeline and for her family there is no going back.

Credit: ITV Wales