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Desperate mother faces getting life-changing drug for her epileptic daughter on the NHS delayed by the general election
Elaine Levy was considering a hunger strike outside No.10 before the election was called
November 1, 2019 11:49
Elaine Levy was considering a hunger strike outside No.10 before the election was called
November 1, 2019 11:49A desperate mother faces having the chance of getting a life-changing drug for her epileptic daughter on the NHS being further delayed by the general election.
Elaine Levy is facing having to sell her house – and was even considering staging a hunger strike outside Downing Street – over the cannabis-based drug that costs £2,500 a month privately.
Now, the election on December 12 means a promise by Health Secretary Matt Hancock to make the drug available to her daughter Fallon must be put on hold by rules that restrict what the Government can do during campaigns.
“I’m extremely stressed out,” said Ms Levy. “It’s absolutely criminal that we’re sitting here a year [since medical cannabis was legalised].”
The drug that Ms Levy’s daughter Fallon uses – which contains trace amounts of psychoactive chemical THC associated with giving a high – has been prescribed on the NHS for two sufferers of epilepsy, after a high-profile campaign last year. Ms Levy said: “Why give it to two people in the UK [but not others]?”
In March, Health Secretary Matt Hancock told Ms Levy and other members of the End Our Pain campaign that their children would have access to medicinal cannabis on the NHS “in several months”.
“In several months’ time it will be in the normal way available on the NHS, but I totally understand that several months’ time is not good enough for your children. I get that,” he said during a campaign event in Westminster.
“What I’m hearing from you is that you have got clinicians who have signed this off and they’re then being prevented.”
It was reported in April that he had asked NHS England to investigate and address “barriers to clinically appropriate prescribing” of medicinal cannabis.
NHS England released a report in July, which recommended a study of the effects of the children already using cannabis-based medicine in July. Ms Levy claimed that report had been “on [Matt Hancock’s] desk” since then and that he had not acted upon its recommendations. The funds for the drug to be made available on the NHS have yet to be approved and the clinical study has yet to go ahead.
NICE – the body that recommends drugs for prescription on the NHS – ruled against prescribing the drug in August, saying there was not enough research into the long-term effectiveness of the drug in treating epilepsy.
Under parliamentary regulations, when parliament is dissolved for an election, ministers are restricted in their powers, so that their actions cannot unduly affect the outcome of the election. Government bodies are supposed to delay decisions until after the election.
As such, it is unlikely that any decisions on the drug will be made until Christmas.
A Department of Health and Social Care spokesperson told the JC: “We sympathise with those families dealing so courageously with challenging conditions.
“There is a clear need for more evidence to support prescribing and funding decisions and we are working hard with the health system, industry and researchers to improve the knowledge base available.”
Fallon Levy's JustGiving page can be found here.
