Joanne Griffiths believes her son could die without the life-changing cannabis oil treatment.
Joanne Griffiths, 43 of Much Hoole, Preston, has been protesting outside polling stations today calling on constituents to put pressure on MP Seema Kennedy.
The Preston mother raises more than £1,300 per month to secure three small bottles of cannabis oil (CBD) on a private prescription for her 9-year-old son Ben in order to alleviate the 300 seizures he can suffer daily due to his Cerebral Palsy.
Doctors at Great Ormond Street Hospital previously told the parents that Ben’s violent fits could kill him but a recommended dose of CBD treatment gave him a new lease of life, reducing the seizures and possibly saving the 9-year-old’s life.
But Ms Griffiths can’t get a prescription on the NHS which would hugely reduce her costs and she has been appealing to MP Seem Kennedy, who is also the Under Secretary for Health, and the Health Secretary Matt Hancock for almost a year to have a one-to-one meeting regarding this issue – but to no avail.
“They are failing me and my son as constituents,” she said.
“Seema Kennedy now works with the Health Secretary Matt Hancock, she sees him everyday but we she has not bothered to get back to me about a meeting.
“She can open the village teapot but she can’t pick up the phone to talk to me.
“I am making constituents aware of our situation and asking them to write to her.”
Soon Ben’s dose of Cannabis oil will need to be increased, causing Ms Griffiths’ monthly costs to rise to £2,500, causing more expense to the Griffith household and their five other children.
Previously, Ms Griffiths met with Mr Hancock calling on changes to be made to the prescription of cannabis-based medicinal products from the NHS.
At the meeting in March, Mr Hancock said: “At the moment the CBD is still going through the tests and in a few months time it will be available in the normal way on the NHS.
“But I totally understand that several months time is not good enough for your children.”
Ms Griffiths says she has been unable to secure a meeting with Mr Hancock or Ms Kennedy since then, despite repeatedly trying to contact the MP.
Her campaign to get an NHS prescription for the drug began when the Alder Hey Children’s Hospital refused to provide Ben with the CBD treatment which Ms Griffith’s claims due to guidelines from the British Peadiatric Neurology Association (BPNA).
The association does not recommend prescribing “non-licensed cannabis-based products” other than Epidiolex, a cannabis-based treatment that contains less than 0.2% Tetrahydrocannabino (THC) compared to the 2% in the CBD treatment.
THC is the psychoactive part of cannabis and Ms Griffiths believes it is the stigma surrounding the drug that causes so much issue with it being prescribed.
Ms Griffiths said: “There is no law that needs to be changed, the law has already changed, it is just this guidance that is being taken literally by the trust.
“This isn’t just about me and my son, it’s about making sure it is available to lots of other families who have had to smuggle the drug in illegally, to pay thousands for it, as we have, or just watch their loved ones suffer.”
She continued: “There is stigma but it’s like I say to people, if you are hurt you can be given morphine to kill the pain, it doesn’t make you a druig user because it is being used medicinally.
“It’s exactly the same with Cannabis-based products.”
The South Ribble MP claimed that she had raised Ben’s case with Mr Hancock personally but did say that the final judgement for prescription should lie with NHS staff.
She said: “I have been working closely with the Griffiths’ family since July 2018 and have raised Ben’s case personally with the Secretary of State for Health, and Alder Hey Children’s Hospital to try and find a solution.
“I will continue to assist the Griffiths’ family as their MP.
“However, I am clear that NHS medical professionals should, in all cases, be able to make the final judgement about which drugs are prescribed to their patients.”