“Glimmer of hope” for funding of children’s medical cannabis prescriptions

Those on the frontline say they feel optimistic about the actioning of a short-term solution to help fund children’s private prescriptions.

For the first time there is a “glimmer of hope”, say campaigners, that those in Westminster are listening to the calls of families fighting for fair access to medical cannabis.

Campaigners gathered in London on Tuesday 2 November to ask the Health Secretary Sajid Javid to “urgently intervene” to help families fund children’s medicine.

Three years since the landmark law change on 1 November 2018, only three prescriptions have been issued on the NHS.

As a result families are forced to fundraise and even sell their homes to cover the costs of private prescriptions, up to £2,000 a month.

Parents presented a petition to Downing Street calling for an emergency compassionate fund for patients which would ease the burden on families, while a more permanent solution is reached.

This would allow time for the gathering of evidence needed to allow for medical cannabis to be more widely available on the NHS.

Now MPs and long-standing supporters of the families, say they believe the Health Secretary is listening and hope that a short-term solution could be announced in the near future.

Tonia Antoniazzi, Labour MP for Gower and co-chair of the All-Party Parliamentary Group for Access to Medical Cannabis Under Prescription, told Cannabis Health she feels they could see a result following two debates in the House of Commons this week.

“Three years ago the law changed and Sajid Javid made it possible for children with intractable epilepsy to have prescriptions, unfortunately it has only resulted in three being made available by the NHS,” she said.

“We thought the fight was over, but it isn’t and we’re still battling. Now Javid is the secretary of state for health, I hope he’s listening and I think he is. I feel very positive about it and I’m hoping that after the two debates this week we will have a result and hopefully in the short term we can have the prescriptions which are currently out there, funded by the NHS.”

Ms Antoniazzi’s co-chair, Tory MP, Alberto Costa led a debate in Parliament on Wednesday highlighting the issues accessing life-changing medical cannabis prescriptions. 

A second, led by Ronnie Cowan of the Scottish National Party, will take place on Thursday 4 November. 

Life-changing medicine

Parents, who have been fighting tirelessly for NHS access to what has been “life-changing” medication for their children, feel let down by a catalogue of failures in government policy.

“We’re asking Sajid Javid to urgently intervene to set up a compassionate fund, or or do anything in his power to help all of us and our children,” said Joanne Griffiths, mother of Ben, 11. 

“Every single child has shown an individual need for this medicine. Our children are the evidence, they need a policy in place for them to be able to access this.”

Karen Gray, whose son Murray has been seizure-free for two years, has a letter written by his now retired paediatric neurologist, advising that GPs should be allowed to prescribe for Murray and other children in his position.

“We’re here to ask Sajid Javiid to intervene, based on our clinician’s decision and the letter that she wrote to him to say that our GP should be prescribing,” said Karen.

“Murray spent 240 days in status in hospital, no NHS medication was helping him. He’s now been seizure free on medical cannabis for two years, he’s absolutely thriving.”

Emily Howis, joining the families for the first time on Tuesday, told us that cannabis has drastically reduced the number of seizures her two-year-old daughter, Clover, has.

“She was diagnosed with a very rare genetic disorder when she was three months old and severe intractable epilepsy is one major part of that. She got to the point where she was having 50 to 100 seizures a week,” said Emily.

“Once we started Bedrolite her seizures went down to five to six a week and since adding another oil with more THC in it, she’s down to one every six to nine days. 

Emily added: “She is doing fantastically well, cannabis has been life-changing for her, she’s doing all the things that a normal two and a half year old does.”

Nineteen-year-old Bailey Williams, is now able to lead a more independent life, something his mum, Rachel Rankmore, had never imagined would be possible.

“Bailey goes out to the community now with his carers, he’s enjoying days out to cafes, riding his adapted bike and he’ll be going to a bungalow fully adapted for him in the spring,” Rachel said.

“He’s saying he wants his own home and doesn’t want his mum and dad around anymore.”

She added: “It’s given him his life back. We never in our wildest dreams even thought about Bailey’s future like that, we just assumed that he was always going to be with us.”

A glimmer of hope

Over the last three years, patients have faced a series of obstacles to accessing prescriptions, including the failure of an initially encouraging internal NHS review published in August 2019.

Despite a clarification from NICE earlier this year that there is no recommendation against the use of whole plant extract medical cannabis products in appropriate cases of paediatric epilepsy, theGovernment has yet to provide a solution for these families.

Campaigners are now cautiously optimistic that things could change.

Peter Carroll, chair of End Our Pain, the lobby group which represents the families, said he felt the events this week had been a “great success” and he was “hopeful” that they would see some action soon.

He told Cannabis Health: “My feeling from the grapevine in Westminster and Whitehall, is that the cumulative build up of pressure is actually getting through and whilst I wouldn’t over emphasise it, I do for the first time feel a slightly stronger glimmer of hope that people are listening and I’m hopeful that we’ll get at least some sort of action soon.

“This is a long, hard road. It’s emotionally draining for the people concerned, in this case, the families. I know that it’s sometimes easy to read too much into things but for the first time, I think it feels slightly more optimistic than usual, that people are listening.”