A couple has accused the Government of paying ‘lip service’ to the families of seriously ill children after their son was refused the right to use medical cannabis.
Ilmarie and Alex Braun are desperate to secure help for Eddie, three, who has a severe form of childhood epilepsy.
They are among a handful of parents who have applied for a licence to use medical cannabis after the Government set up an expert panel to deal with such cases in June.
The move followed outcry surrounding the care of Billy Caldwell, 13, whose parents said he needed the drug to control his epileptic seizures.
However, concerns have grown over the panel’s requirements amid complaints that parents were finding it too hard to get help.
All applications need the backing of the patient’s doctor and hospital trust, but many medics are fearful of taking on the clinical liability.
Of those parents who have managed to secure such backing, only three children have been approved for a licence in as many months, and all of them have already been treated abroad with medical cannabis – which is currently illegal in the UK.
The Brauns, from Chester, were viewed as a test case because Eddie has not been treated overseas.
So far he has only received cannabidiol (CBD) oil, which does not include the slightly higher levels of the psychoactive ingredient THC that is in medical cannabis oil. With the exception of CBD oil, almost all cannabis-related products are illegal under the Misuse of Drugs Act.
However, following the case of Billy Caldwell, the Home Secretary Sajid Javid announced that specialist doctors would be able to prescribe medical cannabis on the NHS by autumn. Until then, such cases are reviewed by a panel of experts.
Yesterday Mrs Braun revealed that she and her builder husband had been left ‘devastated’ after their application was turned down.
She accused ministers of ‘playing to the crowd’ following Billy’s case, and said the application process was ‘so difficult and restrictive’ that she feared few will succeed.
Mrs Braun, 42, a full-time carer for her son, said: ‘We were given so much hope by the Government that this panel would be able to help Eddie and other children get an alternative treatment. Now it turns out that all they were doing was paying us lip service.
Following the case of Billy Caldwell (pictured with his mother, Charlotte), the Home Secretary Sajid Javid announced that specialist doctors would be able to prescribe medical cannabis on the NHS by autumn
‘We’ve dedicated months to a complex, exhausting application process, which was never going to succeed. It has only served to add to our stress as a family living with a child with complex needs.’
Mrs Braun said their rejection letter made it clear that their application had not met ‘pre-determined’ criteria and the panel ‘did not appear to have really considered Eddie’s individual situation’. She said the experts appeared to have focused on the dangers of THC, without considering the benefits small doses could provide.
A spokesman for the Home Office said they ‘sympathised’, but could not comment on individual cases.