DESPERATE parents of severely epileptic kids are being forced to sell their HOMES and fund-raise up to £2,000 a month for cannabis treatments as the NHS STILL won’t fund it.
Campaigners are still struggling to get NHS prescriptions for their drugs despite a law change last year to make it legal to help kids like little Alfie Dingley and Billy Caldwell try to have a normal life.
Heart-broken parents have told The Sun Online how despite the law being changed, the NHS is still dragging its feet on being able to help them fund the cost of cannabis based treatments.
Two cannabis based medicines have been cleared for NHS use – but many doctors have been reluctant to do so.
Instead they are having to turn to private doctors and raise the cash themselves.
They accused Boris Johnson and Matt Hancock of betraying them and breaking promises to help them.
They went to No10 on Wednesday to hand in their petition, and met MPs in Parliament to try and force action.
Some of the families are even considering taking legal action against individual NHS trusts to push through change.
One mum, Elaine Levy, has had to sell her own home to afford the costs of keeping her 26-year-old daughter Fallon stable and happy.
She had tried every drug available in the UK but the side effects “made her a human zombie” and she had no quality of life.
Fallon even had to use a wheelchair in case she fell over.
But she said that despite their plight, she was still struggling.
“Matt Hancock has ignored us, they’ve done bugger all,” she said.
“I can’t let her go back to how she was, but I’ve had to sell my home as I can’t afford this any more.
“It costs me £2,000 a month, and it works for her – my daughter is more important.
“The results have been phenomenal.
“Boris Johnson and the Health Secretary must set up the private fund they promised us now.
I can’t let her go back to how she was, but I’ve had to sell my home as I can’t afford this any more.
“Mr Hancock stood next to me in March and told me he understood what we were going through.”
She says her daughter is now “a different girl” and her IQ has gone up ten-fold now since going onto the specialist drugs.
But for ministers it’s “all about the money” and they can’t afford to wait any longer, she argued.
Karen Gray, from Edinburgh, told how her seven-year-old son Murray was having hundreds of seizures every single day at one point.
She told The Sun Online: “He we in hospital and being tube-fed.
“I thought he was going to die, it was an absolute nightmare.
“He’s been taking it for 11 months now and has been seizure-free for eight.
“He’s even back at school.
“But we need the funding for this now, it’s been a nightmare. We’ve been without income for a year and even had to fund-raise.
“There must be hundreds or thousands of other children suffering like this.”
He takes two forms of cannabis oil – CBD and TCT – to help control his condition – and has to get the medication imported in from Holland.
She said the amount the NHS has thousands of pounds in cash from not having to look after his sick son.
But she added: “You would sell everything to make sure your child stayed happy and healthy, wouldn’t you?”
The NHS won’t prescribe it until trials have been done – it won’t be for months to come at least, she thinks.
What is cannabis oil and is it legal in the UK?
CBD cannabis oil is a substance extracted from the cannabis plant by steam distillation.
Cannabis oil is usually consumed orally, and has a very distinct taste.
This low-concentrate version of the oil is available to buy in the UK and is not illegal.
Products are required to contain less than 0.05% THC.
THC (or Tetrahydrocannabinol) is the psychoactive component in cannabis that makes users feel “high”.
Two cannabis-based drugs that help with epilepsy and MS have been approved for the NHS.
Epidyolex is recommended for two rare types of epilepsy while the spray Sativex can ease muscle spasms in multiple sclerosis.
However, many have been reluctant to do so, citing a lack of guidance and costing concerns.
It has forced some families to buy the drugs abroad and bring them into the UK.
Joanne Griffiths, 44, from Preston, demanded the PM and Health Secretary step in urgently.
Her son Ben, who is 10, couldn’t even drink from a cup unaided before he started cannabis-based treatment.
Now he’s running around, communicating in school and his “life has been changed”.
Ben is “so much happier” but his parents still don’t have a normal life as they desperately try to scrape enough money to pay for his medication.
“They need to start paying for this like they promised,” Joanne demanded.
Who has £2000 a month on top of their mortgage, bills and everything else?
Mum Joanne Griffiths
“We can’t keep forking out for this, it’s not sustainable.
“It’s financially crippling us, paying £2,115 a month.
“Who has £2000 a month on top of their mortgage, bills and everything else?
“We just want to keep our kids alive and keep their seizures reduced.”
Matt Hancock said this morning the hold up for prescriptions was down to making sure the NHS gets “good value for money”.
“There have been problems on value for money grounds,” he admitted to the BBC.
“I am working very hard on this, I’ve been trying to move it forward but it’s moved more slowly than I hoped for.
“I totally understand the efforts of the parents, we’ve got to keep trying to make progress on this.
“But it comes down to the drug companies to make them in the right way.
“They need to come to the table on this.”
MPs have demanded he step up and do more.
Sir Mike Penning MP, co-chair of the All Party Parliamentary Group (APPG) on Access to Medical Cannabis Under Prescription said it was a “travesty that ‘It is a “these wonderful, loving caring families are having to resort to the courts to try and secure access to a medicine that was legalised way back in November 2018.”
He added: “The Secretary of State and the Prime Minister himself need to take this problem on. To end up in a situation in which a medicine is legalised, but then no-one can get it is ridiculous and cruel.”