Longton boy Ben Griffith's new hope for cannabis medication as health group reconsiders prescription funding decision

Ben Griffiths, from Longton, 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.

His family have faced an ongoing battle to secure access to his medication from Holland, and to find a way to pay for it after the Greater Preston Clinical Commissioning Group (CCG) decided not to fund it.

Despite the law change around long term licences to use medical cannabis in the UK 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.

Ben's family say without the medicine he would constantly be in hospital, costing the NHS tens of thousands of pounds a time.

His mum, Joanne, and dad, Paul, attended an Individual Funding Request Appeal Panel hearing via Microsoft Teams in July, to fight the CCG's decision to decline funding for the medicines, which are called Bedica and Bedrolite

Writing to them with the outcome of the hearing, Ian Cherry, chair of the Panel, said the members had to consider whether the correct policies had been followed when determining Ben's eligibility for funding.

He added: "Members concluded that based on the information submitted to the IFR appeal panel it was not clear whether the IFR Panel had fully considered all the germane information relating to the application for funding.

"In particular, it was agreed that the cost benefit to the local health economy of Ben's current treatment, the evidence to Ben's exceptional response to treatment and of the demonstrable improvements to his condition, required further consideration given the difficulties (the family) had had in accessing NHS funding for Ben's prescription.

"The Panel therefore concluded that...the IFR Panel may not have given sufficient weight to the information provided and may not have interpreted the policy decision correctly in relation to the prescribing of the medication.

"Therefore the IFR Panel agreed that the IFR Panel may not have made a decision that was reasonable, based on the evidence before it.

"I am writing to inform you that the case will now be reconsidered by the IFR Panel at the earliest opportunity."

The family also has been trying, without success, to discuss their situation with South Ribble MP Katharine Fletcher.

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