Parents of children with severe epilepsy yesterday accused doctors of blocking access to medicinal cannabis which could help save their lives.
In an open letter to the British Paediatric Neurology Association, which represents most NHS neurologists, the mothers and fathers of 35 youngsters called for an urgent review of their guidelines which fail to back the use of cannabis-derived drugs legalised by the Government last year.
Following an outcry over the cases of Billy Caldwell and Alfie Dingley, Home Secretary Sajid Javid announced in November a change in the law to allow UK doctors to prescribe medicinal cannabis for the first time.
The move was supposed to make access to the drug – which is anecdotally proven to reduce debilitating seizures and improve quality of life of children with severe epilepsy – much easier.
Cannabis has been found to dramatically reduce debilitating seizures for people with severe epilepsy
But, in reality, families say getting access to the drug is as difficult as ever.
This is because parents must secure the backing of their child's hospital consultant – often a neurologist – for the prescription.
To date, the BPNA has advised its members against prescribing medicinal cannabis – which contains low levels of the psychoactive substance THC – because they say not enough research has been done into it.
Neurologists fear they would also be clinically liable or could lose their jobs should problems emerge in years to come.
To date, six-year-old Alfie is the only child in England with a medicinal cannabis prescription on the NHS because it was issued as part of a unique application before the change in the law.
No parents have been successful in garnering the support of a medic to write a prescription since.
In the letter, to BPNA president Professor Finbar O'Callaghan, the parents accuse the BPNA of ignoring the law change.
They claim BPNA guidelines are based on outdated research carried out in the US on teenagers who smoked skunk weed, which contains much higher levels of THC than medicinal cannabis.
The BPNA insist allowing cannabis-derived drugs that have not been tested in the UK to be prescribed is dangerous and say a Government-backed trial is in the pipeline.
But it could be up to two years before the results are known – time that many children, whose development is being damaged and whose lives are at risk because of daily seizures, simply do not have.
Home Secretary Sajid Javid announced in November that the law would be changed to make it easier to get access to medicinal cannabis but families say it has not worked
In the letter to the BPNA, which has been signed by Alfie's mother, Hannah Deacon, and 34 other families, they state: 'Parents are desperate to help their children and should be able to rely to on their doctors to help us do this. Instead we are met by barriers and threats.
This is not acceptable. You are ignoring the law change and refusing to allow doctors to help our children.
'Furthermore, you appear to be ignoring the advice of Dame Sally Davis the UK Chief Medical Officer who recommended that it should be made available when asked by the Home Secretary. Where is the duty