A family’s campaign to get medical cannabis for their son’s epilepsy on the NHS has geared up, with support from South Ribble MP Seema Kennedy and Burnley MP Julie Cooper.
Joanne and Paul Griffiths, of Much Hoole, are lobbying for medicinal cannabis (CBD) oil to be prescribed on the NHS which they say has decreased 10-year-old Ben’s seizures from 300 a day to 12. However, despite having the backing of their son’s neurologist at Alder Hey, its usage was blocked by the hospital’s NHS Foundation Trust, so his parents have had to pay thousands at a time for the drug.
A member of South Ribble MP Seema Kennedy’s office has attended hospital meetings and Joanne is hoping she will help in the fight.
Joanne said: “We hope Seema Kennedy, who is the health minister, will help Ben as she is his local MP.
“We have the MP for Burnley, Julie Cooper speaking about Ben in Parliament too. She is a great support.”
A spokesman for Seema Kennedy's office said: “I have been working closely with the Griffiths’ family since July 2018 regarding their son, Ben. I have raised Ben's case personally with the Secretary of State for Health and Social Care, and Alder Hey Children’s Hospital to try and find a solution, and I will continue to assist the Griffiths’ family as their local MP.”
They have also joined forces with End Our Pain, a group of other parents and campaigners fighting for the drug to be widely available.
Joanne added she was bitterly disappointed when a recent parliamentary select committee report concluded Ben would not be eligible for a trial, which could take up to three years.
She said: “We asked Alder Hey why they would not give Ben the medication. They can see he has improved but until the trial is done, British Paediatric Neurology Association (BPNA) guidance won’t allow it.
"As part of the trial, they would want us to take Ben off the medication that is working and make him go back to 300 seizures a day with no medication and maybe start on a placebo. We wouldn't know what he was getting, so said no, as this would endanger his life.
“It is the trust blocking the medication because of the BPNA guidance, not the clinicians as they are eager to use it.”
Joanne is hoping a more indepth report by Matthew Hancock, Secretary of State for Health and Social Care, will provide more support for Ben and others in his condition. The review is expected to be published at the end of July.
She said: "Matt Hancock promised to help our children in March and he is yet to do so.
“I think he is impartial, but he can see that the law was changed so these medications could be prescribed but they are not being prescribed. I know of three children in the UK who have been allowed the drug free on the NHS after being granted a special licence to use it.
“I think he can see the pain this is causing families and children and wants to help.
"The MPs need to put pressure on him now to help our children and us as families."
The current cost for Ben’s medication stands at £4,600 but this is expected to increase to as much as £10,000 when the dosage goes up.
As a result, Joanne and Paul are busy fund-raising - and coupled with the campaigning, they have admitted it has taken its toll on the family, especially his twin, Adam, and four sisters.
Joanne said: “We are left spending every waking moment fund-raising to give our children quality of life and desperately writing letters, emails and lobbying Parliament for help.
“We are tired but have no option but to carry on in the hope that one day we may get the opportunity to make memories we can treasure forever.
“We don’t know how long we will have with Ben, so in case he doesn’t have a long life expectancy we want to do as much as we can. It is very consuming.
“Ben was lucky to enjoy his 10th birthday recently, as he went bowling and trampolining.”
To support Ben visit http://www.just4children.org/children-helped2019/boisterous-ben
To aid with fund-raising, local singer Connor Banks is selling £5 wristbands for Longton Live, which takes place on July 12 and 13.
To buy a wristband, which allows entry for both nights, call Connor on 07836513493.
Later on in the month, John Eccles, Scott Mckee and Chris Brooks from Hughes Electricals, in Ribbleton Lane, will have their chest waxed on Friday, July 26 to boost funds.
To make a donation to this, visit www.justgiving.com/fundraising/charitywaxingforben
The video is a compilation of Ben's seizures, being unable to walk and Ben after the medication