Bedrolite is the only medicine that has worked for Bailey Williams so far (Picture: Media Wales)

The family of a teenage boy with a rare form of epilepsy are struggling to pay £4,000 for cannabis oil which stops him having hundreds of seizures a day.

They’ve raised £15,000 through fundraising events but Bailey Williams’ parents know they wont be able to keep on asking for money forever.

Now they are calling on the NHS to start writing prescriptions for Bedrolite so they don’t have to go to pay out of the nose to get it privately.

Bailey, 17, has been suffering from epilepsy since he was two and has had some distressing seizures which have made him fall to the ground and turn blue.




In a bid to stop him suffocating against his pillow in the night, his parents have to sleep in the same room as him every night.

Bailey often turns blue and goes into a ‘complete comatose state’ afterwards (Picture: Media Wales)

Some hope emerged for Bailey, from Cardiff, after a change in the law in November meant medicines containing Tetrahydrocannabinol (THC), the psychoactive ingredient in cannabis, became available for prescription from specialist doctors.

But it is still not available on the NHS, meaning Bailey’s parents have to pay thousands to a neurologist in London for the medicine, which he takes three times a day.

They say they tried as many treatments and drugs over the years but that this one is the only one making a difference.

The first prescription in June cost £2,000 but it is likely to go up to £4,000 in September and should last him a month.

Bailey’s condition started getting worse at the age of seven and he was diagnosed with a rare form of epilepsy called Lennox–Gastaut syndrome, reports WalesOnline.

His family cannot keep on fundraising for the £4,000-a-month medication (Picture: Media Wales)

His mum Rachel Williams said her son sometimes makes screeching noises, shakes his whole body or fall to the floor during his seizures.

She said: ‘He’ll turn blue and be in a complete comatose state afterwards where he can’t walk or talk or do anything.’

Rachel says the medication he is now on now enables him to play with his dad and brother which was ‘very emotional to see’.

She called on the NHS to start providing prescriptions so families do not lose out on the effective medication because of their bank balances.

Rachel added: ‘It’s really frustrating because the law has been changed but it’s not being actioned on. People have said it’s not about money but it clearly is.

‘We can’t keep asking people for help, we can’t keep begging for money. We might have to end up remortgaging our house, because we cannot go back to the way things were before we started on this medication.’

Bailey’s quality of life has drastically improved since taking the drug (Picture: Media Wales)

A wider use of cannabis medicine is yet to be recommended by the National Institute for Health and Care Excellence (NICE), which is set to issue final guidelines in November.

A Department of Health and Social Care (DHSC) said ‘more clinical evidence’ is needed on the benefits of cannabis-based medicine prescriptions.



A spokesman for the government department said: ‘We will now carefully consider the NHS’s findings, alongside the recently published Health and Social Care Committee report, to identify how we can better support clinicians in prescribing cannabis-based medicinal products where clinically appropriate.’

The Welsh Government said no cannabis medicines have passed ‘rigorous safety and quality tests’ and said prescriptions are a matter for doctors.

They warned the products may pose ‘unquantified and potentially greater risks to patients than licensed medicines.’

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