County Durham family forced to pay £1k a month for epileptic daughter's cannabis treatment

Three years ago, a change in the law allowed doctors in the UK to prescribe medicinal cannabis.

Those eligible to receive the treatment range from adults suffering from MS to children with severe epilepsy - children like Marley-Rose Boulton from Fishburn in County Durham.

Since March 2021, six-year-old Marley has been given a daily dose of cannabis oil in combination with standard anti-epileptic drugs.

According to her parents, Kat and Justin, the treatment has been life-changing.

Marley is also autistic and used to suffer from severe balance issues. According to Kat, Marley's mood, behaviour and balance have significantly improved since the treatment began.

But immeasurably improving Marley's life has come at an immense financial cost for the family and others who have been forced to access the treatment privately.

The law change should have meant the drug was available on the NHS - but three years later families are still having to pay out of their own pocket to the tune of roughly £1,000 a month.

Campaigners say just three prescriptions have been issued. Their petition - to 'Stop Denying Patients Access to Medical Cannabis on the NHS' - has garnered over 650,000 signatures and will be presented to 10 Downing Street on Tuesday 2 November.

Parents walked to Downing Street today to raise awareness of the issue and urge action be taking.

The Boulton family have felt the financial impact so severely that they were unable to afford travelling to London to join the protest.

Marley's school and the Fishburn community has rallied together to help fund the treatment. But, according to Justin, the family are "financially broken".

"[We're] completely on the teetering edge of the abyss and we’ve got two other kids," he said.

Kat believes the lack of accessibility to be the result of "the connotations of the word 'cannabis'".

"This is a health issue, it's not just a money argument," she said.

"Why are we restricting access when we have clinicians that our willing to prescribe in the private sector? Why aren't we able to transition some of this knowledge, some of this expertise into the NHS?"

Marley and her sisters Melody and Maya

A Department of Health and Social Care spokesperson said: “Our sympathies are with all patients and families dealing with rare and hard to treat conditions. The government has already changed the law to allow specialist doctors to prescribe cannabis-based products, where clinically appropriate and in the best interests of patients.

“Licensed cannabis-based medicines are funded by the NHS where there is clear evidence of their quality, safety and effectiveness.”

Peter Carroll is director of the End Our Pain campaign, Which organised the protest and supported the petition. He said he no longer wants to hear expressions of sympathy.