A couple are having to pay a ‘small fortune’ for medicinal cannabis for their epileptic daughter as the treatment is unavailable on the NHS.
Little Clover Carkeet, 22-months, has severe epilepsy which sees her sometimes suffer hundreds of seizures a week.
Parents Emily and Spencer claim medicinal cannabis, prescribed through a private clinician, literally changed Clover’s life and she now endures one to three seizures a week.
But the treatment is unavailable on the NHS and the family fear they could run out of the expensive Bedrolite oil they currently import from Holland – if post-Brexit medication laws do not change.
Emily Howis and Spencer, from Frome, Somerset, are now campaigning to make the treatment more readily available.
Desperate Emily, 36, said: “At the moment it’s costing about £750-a-month.
“It changes all the time because we’re constantly tweaking her dose to find the best seizure control for her. But that will get more and more and more as she gets bigger.
“You pay for more medication as the child increases in weight.
“Some of the families we know are paying almost 2,500-a-month. It’s a shocking amount of money. They’re paying almost the same as a mortgage.”
Emily and Spencer only have 10 weeks’ worth of Bedrolite oil – which Clover takes twice a day morning and night – left.
The Dutch Government has announced they will no longer recognise prescriptions as a result of Brexit leaving Clover without her much needed medication unless something changes.
Emily added: “The government claim to be trying to sort it out, but at the moment we have about 10 weeks of oil left.
“We are waiting for a shipment to come in that would last us another three months, but we don’t know if it will arrive.
“We know of 42 children that take Bedrolite. They are all at risk. It’s not easy to change oils – they’re all completely different.
“There’s hundreds of compounds, one strain may work for one child and another could be completely useless. It’s dangerous and life threatening.”
The law around medicinal cannabis products changed in 2018, allowing doctors to prescribe them under certain circumstances.
But the number of NHS prescriptions is low, with Emily adding there are currently only three children taking NHS prescribed medicinal cannabis for epilepsy.
Emily and Spencer have subsequently joined a campaign called ‘End Our Pain’, with other parents to get easier access to the medication on the NHS.
A press release from the campaign said: “In a letter sent out on the 15th December to all UK importers, clinics and several patient groups, the Department of Health & Social Care (DHSC) have stated that due to the end of the transition period prescriptions issued in the UK can no longer be lawfully dispensed in an EU Member State.
“This letter is yet another devastating blow to these families, who already experience the difficulties of caring for very sick children.
“Time after time, the ‘End Our Pain’ families have made desperate pleas to the Prime Minister, the Health Secretary and the NHS for urgent assistance, but their needs continue to be ignored.
“The termination of medical cannabis supply from the Netherlands to the UK, is a matter of life and death for these children. It’s imperative that the Government act now to help reach a solution and help these families.”
A statement from the Department of Health and Social Care said: “We sympathise with patients dealing with challenging conditions and the decision on whether to prescribe medicinal cannabis is rightly one for clinicians to make.
“Since the law changed, two cannabis-based medicines have been made available for prescribing on the NHS for patients with multiple sclerosis or hard to treat epilepsies, where clinically appropriate.
“This follows clear evidence of their safety, clinical and cost effectiveness.
“However, more evidence is needed to routinely prescribe and fund other treatments on the NHS and we continue to back further research and look at how to minimise the costs of these medicines.”