Two years ago the government issued the UK’s first permanent medical cannabis licence to seven-year-old Alfie Dingley, who has a rare form of epilepsy.

A subsequent change in the law in November 2018 meant that medical cannabis products could be legally prescribed to some patients for the first time; but NHS prescriptions have not been forthcoming since.

Alfie’s mother, Hannah Deacon, has now written an open letter to the Government on the two-year anniversary of Alfie’s licence, urging the delivery of medical cannabis on the NHS.

“The change in law in 2018 raised the hopes of many other families. We felt every child and adult who had tried everything else may get the chance to use medical cannabis, to keep them out of hospital and improve their quality of life,” Deacon writes in her letter.

“For families and their suffering children, this optimism has now been replaced by abject despondency.”

Families looking for a prescription are forced to go through private doctors, costing thousands of pounds. The Covid-19 pandemic has left some families without a means to pay for private prescriptions, says Deacon.

“Together with End Our Pain campaign, I support many families every day who now must access this medication privately and fundraise to be able to pay for their children’s medicine. This fundraising has become impossible due to Covid-19,” Deacon’s letter states.

“Most families have a parent carer who cannot work as they must be on hand for their child full time and have lost all their respite and support during the Coronavirus outbreak.

“Only a few days ago we have seen a child in intensive care because her mother could no longer pay for her treatment.

“Living alongside Covid-19 for the foreseeable future will mean stark choices for these families. We need to make sure the needs of those with severe and enduring illnesses are not overlooked. This is about timely and early intervention, prevention and ensuring the right medicine is accessible.”

“Neither the government nor medical profession seem to able to agree on who should take responsibility for unlocking this stasis. Restrictive guidance from NICE and the BPNA, and a reluctance from the Government and the NHS means that not one new NHS prescription has been written in the last two years.”

Her letter, published on Friday, reads:

The 19th June is a transformational day for me – for some a good news story and a compassionate act from politicians – but life-changing for my son and me.

The unpredictability of his condition, frequency of his seizures and frustration of the inability of available medicines to help led to a daily fear that if the situation did not change, he might die.

Two years ago, today, medical cannabis was given to treat my son who suffers from refractory epilepsy – a condition caused by a non-inherited gene mutation PCDH19. This decision by the former Home Secretary Sajid Javid led to a key law change on the 1st November 2018 which enabled medicinal cannabis products to be legally prescribed to some patients across the UK for the first time.

For vulnerable families and their suffering children, this optimism has now been replaced by abject despondency. To the best of my knowledge access to medical cannabis on the NHS is totally blocked forcing families to fundraise to pay thousands of pounds a month for a medicine that is legal here. It also means that the health of patients is under threat. Covid-19 has merely exacerbated these health and economic inequalities.

This is a national disgrace.

Our story really began when Alfie had his first seizure at eight months old – something that was terrifying for both parent and child. From that day we continued to follow doctors’ advice, trying nearly 20 combinations of anti-epilepsy drugs, the ketogenic diet and immune therapy. The only treatment that helped stop his seizures was steroids. I can promise you that watching your child either seize repeatedly or try to get through the days in a haze of drug-induced side effects is horrendous for them but also the whole family.

Determined to find a workable alternative without the potent side effects, we went to Holland to use medical cannabis in 2017. This is when Alfie’s miracle happened. Medical cannabis stopped his seizures so much that his quality of life changed immeasurably. I came home and fought alongside the campaign group End Our Pain, to show the Government that there absolutely is a medical value to cannabis.

Following a face to face meeting with the Prime Minister, which led to Prof. Mike Barnes – a notable cannabis expert and campaigner applying for a license to prescribe on Alfie’s behalf, Alfie was issued with the first-ever permanent medical cannabis license on 19th June 2018 which secured his access to his medical cannabis type on the NHS. The subsequent change in law on the 1st November 2018, raised the hopes of many other families. We felt every child and adult who had tried everything else may get the chance to use medical cannabis, to keep them out of hospital and improve their quality of life.

But the reality is nothing of the sort. Neither the government nor medical profession seem to able to agree on who should take responsibility for unlocking this stasis. Restrictive guidance from NICE and the BPNA, and a reluctance from the Government and the NHS means that not one new NHS prescription has been written in the last two years.

I have spoken with parents of children who have profound challenges that could be improved by medicinal cannabis. They are at their wits’ end, and it is no surprise to find that some in this country resort to desperate measures.

Together with End Our Pain campaign, I support many families every day who now must access this medication privately and fundraise to be able to pay for their children’s medicine. This fundraising activity has become impossible due to Covid-19. Only a few days ago we have seen a child in intensive care because her mother could no longer pay for her treatment. Only due to an exceedingly kind donation can she carry on the treatment for a few more months and has managed to get her child home and safe for now.

Surely being the 6th richest economy in the world, and one of the most sophisticated democracies on earth with a world-leading state-owned and controlled health system means that the Government should never allow this to happen.

Most families have a parent carer who cannot work as they must be on hand for their child full time and have lost all their respite and support during the Coronavirus outbreak. Now, they may also lose access to the treatment that helps their children to have a much better quality of life and more importantly keep them out of hospital.

These vulnerable families are suffering in the most extreme circumstances and you have it within your power to help them today.

Living alongside Covid-19 for the foreseeable future will mean stark choices for these families. We need to make sure the needs of those with severe and enduring illnesses are not overlooked. This is about timely and early intervention, prevention and ensuring the right medicine is accessible.

The plight of our children and the need for medical cannabis is so much more than strategy, task forces, or policy announcements.

Today, I implore you to all come together and finally deliver appropriate access to medical cannabis on the NHS.

Hannah Deacon
Medical cannabis campaigner

#AlfiesHope