'Without this my son will die': Parents pay £2,000 a month for medicinal cannabis for epileptic son
ITV News Granada Reports journalist Emma Sweeney went to meet Ben and his parents
The parents of a boy who spends £2,000 a month on on life-saving cannabis treatment for him say the successive governments have failed in their promises to prioritise children in need.
Ben Griffiths, 15, has severe epilepsy and suffers from life-threatening seizures, but is unable to access medicinal cannabis on the NHS.
The family has been forced to pay up to £2,000 a month for six years, for private prescriptions to secure the medication that is crucial in preventing Ben's seizures.
Ben's mum Joanne said: "It was hell. These seizures would sometimes last hours.
"If we went to the beach we would take a tent with us, so that he could recover and lie down.
"He had no quality of life. He was scared to walk on the concrete."
Until five years ago, Ben could have a hundred epileptic seizures every day, but since medicinal cannabis was legalised in 2018, his life has dramatically changed, for the better.
Ben's dad Paul said now Ben's seizures only last a few seconds, and some days he may have no seizures at all.
"The medicinal cannabis has been completely life-changing," he said.
"Ben went four and a half years without being taken to hospital. But straight away when we went a day without the medicine, we were straight back in hospital."
"Without this my son will die.
"I have to pay £2,000 every single month to keep my son alive."
Joanne and Paul are calling on the government to provide better access to cannabis-based medicine.
They say there are some families who are accessing medicinal cannabis through the black market, as they cannot afford to pay for it privately.
They joined families in a similar position at Westminster Hall in Parliament, on 5 November, where they called on Wes Streeting MP, the Health Secretary, to meet them.
Their own MP, Ribble South's Paul Foster, was there to lend his support.
The Labour MP said: "Young Ben can't survive without the cannabis he is taking.
"The fundamental principal of the NHS is that the medication should be free at the point of need and I'm more determined than I have ever been to end Ben's pain and to get him the medication he needs."
It is an aim shared by Ben’s parents who say they too will keep going for as long as it takes.
NHS England said: "Many doctors and professional bodies rightly remain concerned about unlicensed products for which there is limited safety and efficacy evidence available, and manufacturers are encouraged to engage with the UK medicines licensing process in order to seek a licence and provide doctors with the confidence to use their products."
A Department of Health and Social Care spokesperson said: "Licensed cannabis-based medicines are routinely funded by the NHS where there is clear evidence of their quality, safety, and effectiveness.
"The NHS is taking an evidence-based approach to unlicensed cannabis-based treatments to ensure they are proved safe and effective before they can be considered for roll out more widely."
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