“We are broken, emotionally and financially”: Prime Minister urged to fund medical cannabis

The parents of a severely epileptic young woman will stand vigil outside 10 Downing Street on Friday to urge politicians to help fund their daughter’s medication. 

Elaine and Graham Levy’s daughter Fallon, 27, has suffered from a rare form of epilepsy, known as Lennox–Gastaut syndrome, since the age of four.

The couple will hold a vigil outside 10 Downing Street and the Houses of  Parliament on Friday 26 March on what is known as Purple Day – the global day for epilepsy awareness.

After years of exhausting all conventional treatments and suffering up to 200 seizures a month, the only treatment which has proven effective for Fallon is medical cannabis. 

She has accessed cannabis medicines privately since 2018, but despite the law change has been denied a prescription on the NHS.

After years of lobbying for access with the campaign group End Our Pain, the couple’s latest plea comes after they were told that the UK Government would not step in and help fund the private  prescriptions until there was affordable access through the NHS.

Elaine and Graham have been left “broken” emotionally and financially by the pressure of funding Fallon’s prescription, which at one point cost over £2,000 a month. 

In 2019, they were forced to sell their family home and move into Elaine’s sister’s flat. 

“‘We are broken, emotionally and now financially,” said Elaine.

“The sums of money involved are minuscule when set against the overall health budget, but for our children it’s about life and death.”

She continued: “Everyone involved from the Government and NHS say they want to help, but the months drag on and our families have not had any help. 

“Some of the doctors in the leading medical professional bodies constantly say that they want  more evidence that medical cannabis works and is safe, what they fail to acknowledge is that we have got the best evidence of all, that it works for our children. 

“They have been securing and administering it for over two years now with dramatic improvements in our children’s wellbeing. Some of the children have gone from being exceptionally ill to going over a year seizure free.”

Elaine Levy outside Parliament in December 2020.

Since medical cannabis was legalised in 2018, three children in the UK have been granted NHS prescriptions suggesting that the health authorities can find a way of prescribing if they choose to.

Families who have spent tens of thousands on their loved one’s medicines, have been urging Matt Hancock since January 2019 to step in and fund the private prescriptions as an interim measure until the NHS starts to prescribe. 

Despite detailed arguments explaining that it is legally and procedurally possible for the authorities to step in – including an opinion from a QC – the Government wrote to the co-chairs of the All Party Parliamentary Group (APPG) on Access to Medical Cannabis Under Prescription stating that they would not take action.

Speaking at Prime Minister’s Questions on Wednesday, Conservative MP Sir Mike Penning asked Boris Johnson for a meeting with one of the mothers whose child has an NHS prescription to explain that “children’s lives are going to be lost” under the current process.

 “Today, we have three children who have it free on the NHS, and about 150 children whose families have to beg and borrow and remortgage their homes so that they can pay about £2,000 a month,” said Mr Penning.

“I say to the Prime Minister that this is wrong. As a father, like I am, we would do everything possible for our families, and these families are doing everything possible for their children.”

SNP MP, Ronnie Cowan also raised the issue with Mr Johnson, stating: “Seventeen months ago on 23 October 2019, I stood in this place and asked you what you were going to do to get medical cannabis to children suffering from rare forms of epilepsy. You said to me that you recognised their “desperate difficulties”, and that you would take up the matter “personally” with me. Their difficulties are still desperate and you have not taken this up personally with me. 

“In the interim we have developed new medicines, distributed them around the country and given them to people who need them, free of charge. Why are we discriminating against these children? What are they—are they worth less than the general public?”

Mr Johnson said the Health Secretary was working to find a “permanent solution” to the supplies of Bedrocan imports from Holland which were affected by Brexit and pledged to resolve the issue to ensure the supply of cannabis-based products can be “made secure”.

Joanne and Ben Griffiths

But Elaine has pointed out that this is a “funding not a supply issue”.

Joanne Griffiths, the mother of a severely epileptic son and spokeswoman for the parents in the End Our Pain group, commented: “We have been  passed from pillar to post for nearly two years now since the law was changed in November 2018 to allow medical  cannabis to be prescribed. The situation is a complete mess. 

“The Secretary of State, the NHS and the leading doctors are all standing by and watching us have to fundraise thousands of pounds to secure access to the only medicine that helps our children.  

“Caring for a very ill child is incredibly tough in its own right. To have to fundraise thousands on top of that is intolerable. We’ve had to cope with the Covid restrictions on our fundraising. In desperation, we asked Matt Hancock to find a way to use Government and/or NHS money to fund our private prescriptions until the NHS sorts itself out.”