Longton twin's emotional plea to Prime Minister on behalf of his poorly brother

Adam Griffith's letter coincides with the third anniversary of a landmark decision when former Home Secretary Sajid Javid granted a six-year-old boy, Alfie Dingley, the first individual long term licence to use medical cannabis in the UK.

His brother Ben Griffiths was born with a form of cerebral palsy which leads to him having up to 300 epileptic fits a day and he usually wears a protective helmet.

Since taking a form of Dutch cannabis medicine, it has drastically reduced his fits to between none and five.

Despite the law change in June 2018, there have been only three NHS prescriptions issued for other similarly affected families, with the rest - including Ben's family - having to scrimp and borrow to pay privately for the medicine at a cost of around £2,000 a month.

Campaigners say currently there is a near total block on NHS prescriptions for the type of medical cannabis that was shown to be life transforming for the youngsters,

Ben's mum Joanne, who helps co-ordinate the other affected families as part of the End Our Pain campaign, said: "Parliament obviously wanted patients such as our children severely affected by epilepsy to have access to medical cannabis. Why else would they have changed the law?

"But we are now in a situation in which the law has been changed, but we can’t access it on the NHS. This is despite the NHS carrying out its own detailed review into the blockages in August 2009.

"We have marched, petitioned, lobbied Parliament and met Ministers on a number of occasions. But all we get is warm words and hand wringing but no actual progress. "Every part of the system blames every other part and we get passed from pillar to post."

Another British child, Thomas Braun, whose brother also suffers epilepsy, will stand outside Number 10 Downing Street on Wednesday with a copy of his own letter to the PM.

His brother Eddie has severe, complex epilepsy and can suffer up to 100 different seizures a day.

Alfie Bingley's mother, Hannah, has also written to the PM urging him to intervene, and outlining the "transformational effect" having an NHS prescription has had on her son .

In her letter she writes: ‘It soon became clear that the legal change was, however, well intentioned, a complete failure, with families still denied access to an NHS prescription at every turn’ and ‘I implore you to listen, not just as our Prime Minister but as a fellow parent. You and you alone have the power to make this right’.

Peter Carroll. Director of End Our Pain, said, ‘This situation is bizarre and cruel. The Government legalised a medicine, but hardly anyone can get it. Surely it can’t be beyond the wit and capability of one of the largest health services in the world to sort this out?"

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