Campaigners call for more rare epilepsy patients to be given cannabis oil drug – Mirror Online
Health Secretary Matt Hancock was tonight urged to tear up red tape campaigners say is hampering prescriptions of medical cannabis for children with rare epilepsy.
There have been no new NHS prescriptions for full-extract cannabis oil since the medicinal use of the drug was legalised more than 18 months ago, it emerged this month.
Experts say strict guidelines make it difficult to get hold of the treatment on the NHS.
Full-extract cannabis oil imported from the Netherlands has continued to be prescribed on the health service to just two children with rare forms of epilepsy – Alfie Dingley and Sophia Gibson.
The Home Office handed them emergency interim licences in summer 2018 following a campaign.
Wealthy families denied the free medicine are thought to be paying about £2,000 a month to buy the drug through private prescriptions.
MPs from across the political divide have written to Mr Hancock “to raise serious concerns about the lack of availability of cannabis oil for patients who need it, 18 months after it was legalised for medicinal use”.
Their letter, seen by the Mirror, says: “The restrictive prescribing rules are forcing parents to pay thousands of pounds to get their children the medicine they need.
“Many are simply unable to afford it, leaving them helpless to prevent their children enduring awful seizures.”
Signatories include Labour, Conservative, Liberal Democrat, Scottish National Party and Green MPs.
Lib Dem home affairs spokeswoman Christine Jardine, who organised the letter, said: “Families have battled for years for doctors to be able to prescribe cannabis oil.
“Despite ‘winning’ this fight back in 2018, people – including young children – are still being denied access to this potentially life-changing treatment.
“This is a heartbreaking situation.
“The Government must trust doctors to do their job and use their judgement as to what’s in the best interests of their patients’ health.
“The red tape around prescribing medical cannabis must be lifted as a matter of urgency.”
A spokesman for the End Our Pain campaign said: “When the law was changed in November 2018 the hopes of many patients and their families were raised.
“But these hopes have been cruelly dashed.
“The number of prescriptions for whole-plant extract medical cannabis of the kind that was shown to be life transforming for the likes of Alfie Dingley, whose family led much of the campaigning work to secure the law change, is minute.
“These patients have been passed from pillar to post.
“Many have had to raise huge sums of money to access a medicine that is now legal here.
“We are strengthening our call on the Secretary of State to personally intervene and find a way to break this heartbreaking deadlock.”
A Department of Health and Social Care spokesman said: “We sympathise with patients dealing with challenging conditions and the decision on whether to prescribe medicinal cannabis is ultimately 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.”
Sources said specialist doctors were able to use their “clinical judgement to prescribe medicinal cannabis”.
The Government was supporting clinical trails to gather evidence on the use of medicinal cannabis, they added.
This article originally appeared here in https://www.mirror.co.uk/news/politics/campaigners-call-more-rare-epilepsy-22343167