‘What about our children?’ ask End Our Pain parents

Campaigners welcomed the news that teenager Billy Caldwell will have access to his prescription on the NHS but now they are asking: ‘what about the rest of our children?’

Earlier this week it was announced that health authorities in Northern Ireland have signed off a shared care plan for 15-year-old Billy Caldwell – who has a severe form of epilepsy – allowing him to receive his medical cannabis prescription through the NHS.

It comes after two years of campaigning from his mother, Charlotte Caldwell who helped legalise medical cannabis in 2018.

Charlotte confirmed on Monday 19 October that a shared care arrangement has been signed off by health authorities in Northern Ireland, following a recommendation from the Refractory Epilepsy Specialist Clinical Advisory Service (RESCAS) – made up of leading paediatric neurologists – that his treatment be continued.

But just days before Billy and Charlotte received the news they had been waiting for for two and a half years, another UK family was told their pain was far from over.

Joanne Griffiths, whose 11-year-old son Ben also has intractable, drug-resistant epilepsy and at one point experienced up to 300 seizures a day, is one of several parents who are still being forced to fund thousands each month for their child’s prescription.

She also pursued a shared care agreement between Ben’s GP and the Greater Preston Clinical Commissioning Group (CCG) which would allow for his prescription to be available through the NHS – as is the case with eight-year-old Alfie Dingley and now Billy Caldwell.

Last week Joanne received a letter from the NHS Midlands and Lancashire Commissioning Support Unit (CSU) declining her funding request.

It stated that an Individual Funding Request Panel had agreed the case did not involve a shared care arrangement as even though Ben’s GP was ‘willing to provide oversight’ of his treatment, he is unable to prescribe it on the NHS.

It added that the fact that the CCG was being asked to fund a prescription provided by a private neurologist was ‘contrary’ to its policy that any additional private care must be ‘delivered separately from NHS care’ and no grounds for ‘clinical exceptionality’ were found.

“Billy deserves this medication that is giving him better seizure control just as much as Ben does,” said Joanne.

“He has the same condition and also receives his prescription from a private prescriber, but for some reason our requests have just been blocked every which way. We’re being greatly let down.”

Joanne feels they now have no choice but to pursue legal action.

“It screams to us that the only way you can get this through is by mounting a legal challenge or going through the media.

She added: “You can’t give it out to two children and not to others.”

Karen Gray is just one parent who can relate.

She is mum to eight-year-old Murray who has been seizure-free for 16 months on medical cannabis.

Despite this following a referral made by her neurologist, RESCAS recommended he be weaned off the oils.

Karen is also pursuing a shared care agreement between a private neurologist and Murray’s GP but has been told she is not able to appeal the RESCAS decision and may have to wait up to 12 months before his case is brought to the panel again.

“Clearly the way forward is a shared care agreement,” she added.

“This is excellent news for Billy and long overdue but what about Murray and the rest of our children? Why is an agreement between a GP and private neurologist allowed in some parts of the country but not others?”

When approached for comment Greater Preston CCG said they had nothing further to add.