We won a victory for medicinal cannabis for all patients in the UK or so we thought: On 19th June 2018, after a hard battle, my son Alfie Dingley was finally permitted an NHS prescription to enable him to access prescribed medicinal cannabis for his epilepsy.

Alfie’s doctors received the first permanent schedule one medicinal cannabis license which enabled them to prescribe the medicine Alfie had received in Holland in 2017, under prescription. This fight not only helped my son, it played a big part in getting the law changed to allow access to medicinal cannabis medicines under prescription in the UK. Alfie then went onto receive the first legal NHS prescription without the need of a license, when the law changed in November 2018.  We hoped this landmark decision would pave the way for other children and patients to potentially benefit from this treatment on the NHS as well.  

Sadly, the reality is, there is only private or illegal access available to suffering patients.

Over the last five years, since Alfie and one other child received an NHS prescription in 2018, only one other child has received the same.
Alfie has just celebrated over 3 years seizure free, which has not only changed his life but that of our families who are now able to have a much more normal quality of life. 

Despite NICE clarifying specialist clinicians can prescribe advanced cannabis medicines, The British Paediatric Neurology Association (BPNA) guidance has taken a zero tolerance approach discouraging clinicians with engaging in conversations about prescribing these unlicensed cannabis based medications. Even promoting the use of brain surgery over the use of medicinal cannabis products!

The UK government's lack of action has left thousands of families of children with debilitating seizures with no choice but to seek access through private clinics which is hugely expensive and inaccessible to most or illegal means. It's time for the government to act now.

I’m co-founder and chair of Medcan Family Foundation, we are empowering families through Medcan Family Foundation's 5-point manifesto and we are asking the Government to act on this now.

We believe in creating equitable access to healthcare for families in need.

1.      Guidance
Doctors need clear clinical guidance to help patients effectively.
Lack of guidance leaves doctors blind, unable to respond to cases with certainty. Fortunately, there's a solution: that NICE urgently revise guidance to address successful treatment cases and implementing harm reduction access for families using illegal products.

2.      Education
Closing the knowledge gap in prescribing: Industry fund established for The Medical Cannabis Clinicians Society to provide education & mentorships. Clinicians often hesitate to prescribe, even when it's clinically necessary. But with the establishment of an industry fund, we're working towards providing unbiased education and mentorship for consultants to improve their prescribing knowledge.

3.      Cost
Tackling healthcare cost efficiency and supply issues is key to better funding for children's health. We are taking action with Health Economic Analysis of children’s healthcare and the benefits for the NHS.

4.      Evidence
Revolutionary cannabis study capturing real world data on patient safety and outcomes. The NHS Cannabis registry to be activated, aiming to create a world-class database on the use of medical cannabis. Initial results from the PhytoEpil study show promising outcomes and real-world data on patient safety and treatment effectiveness.

5.      Supply
Government program seeks to solve supply issues and boost domestic industry for paediatric epilepsy products. Import requirements are driving up costs and causing uncertainty in supply lines for vital products. A new government program aims to fast-track cultivation licenses for UK producers, encouraging innovation and benefiting those in need

Access to medicinal cannabis should not be blocked for children with epilepsy.

I have spoken to many clinicians who are supportive of prescribing unlicensed cannabis-based medicines, but they need the support from the Government and regulatory bodies to be able to support their patients with these prescriptions.  

In the short term we are asking the Government to provide funding to NHS Trusts and allow clinicians to prescribe these unlicensed medications whilst the bureaucracy is sorted out.

With the limitations and long timeframes of traditional research methods, real world evidence and observational data must be considered when assessing the safety of cannabis as a treatment for epilepsy. It's crucial that children have access to this treatment, without risking harm with a placebo.

Parents shouldn't have to fund legal medicine for their sick children privately.

With advanced medicinal cannabis on prescription, thousands of families could benefit while also saving the NHS money. Sign the petition to show your support.

The current policy has failed and it's time for the Prime Minister and Secretary State for Health to work with us on developing better access. We need NICE to accept the value of real-world evidence in this case and remove bureaucracy faced by clinicians who wish to prescribe it.

Every child deserves access to life-changing medication, let's make it happen.

We're calling on the NHS to provide unlicensed medicinal cannabis to children in need. It's time for every child to have a chance at a better life.

Sign the petition and spread the word to help children like Charlie Hughes (pictured) receive the treatment they need.