“Do the right thing Boris” – families’ plea to Prime Minister in full

The loved ones of children and young people with severe epilepsy have pleaded with the Prime Minister to help them access medical cannabis. Read their letter in full and write to your MP here:

More than 20 families, supported by the End Our Pain campaign and UK charity Epilepsy Action, have signed an open letter to Boris Johnson calling on him to ‘do the right thing’.

Many parents, currently paying up to £2,500 a month for their child’s prescription, are expected to run out of funds by the end of the year, in a situation they have described as ‘cruel’, ‘irrational’ and going ‘against the will’ of parliament following the 2018 law change.

They have now pleaded with the Prime Minister to provide financial support for private medical cannabis prescriptions or allow access on the NHS as a matter of ‘urgency’.

It comes after Mr Johnson sent a congratulatory letter to the mother of a child in Northern Ireland, who is believed to be only the third person to receive an NHS prescription in the UK.

Elaine Levy, whose daughter Fallon, 27, suffers from a rare form of epilepsy Lennox Gastaut syndrome, is today (Tuesday 2 December) outside Downing Street, holding a placard of the letter – in which he claimed he ‘‘sympathised deeply’ with those suffering from drug-resistant epilepsy and ‘completely understands’ the need for access on the NHS.

Speaking from Number 10, Elaine said: “It is brilliant that a boy from Northern Ireland has got his medicinal cannabis on the NHS, but what about the rest of our group from End Our Pain?

“I’ve sold my own home, another boy a month ago was told if you can’t carry on paying £2,000 a month we’re going to give him an end of life plan, this can’t go on.”

She added: “Boris, I’m calling you out now – do the right thing and pay for us which is what was supposed to be done for us two and a half years ago.”

Here’s the letter in full:

Dear Prime Minister,

We write to you as families impacted by severe life threatening epilepsy, all of whom are having to privately fund prescriptions for the medical cannabis that is keeping our loved ones safe. Despite the fact that at least three other children with similarly severe epilepsy have been granted NHS prescriptions, we remain unable to access this medicine on the NHS. Indeed, we understand that you personally wrote to the parent of one of those children recently welcoming their new care plan, which includes an NHS prescription for medical cannabis products, acknowledged as “the first of its kind in the UK”.

As you will know, the law was changed on 1 November 2018 to allow legal prescription of medical cannabis due in large part to the high profile campaigns of two families of children with severe epilepsy. Despite the change in the law we have been denied NHS access and passed from ‘pillar to post’. The lack of NHS access has left sorne families feeling forced to fundraise to cover the costs of private prescriptions. Some are having to raise up to E2,500 every month to cover the costs of these prescriptions. The ongoing COVID-19 pandemic has made fundraising almost impossible.

Many families had been waiting for an ‘alternative study’ to be set up as recommended in the 2019 NHS England ‘Barriers to Accessing Cannabis-Based Medicines in the NHS on prescription’ report. An alternative study was Intended to include those for whom randomised control trials (RCTS) are unsuitable, including children who are currently accessing cannabis-based medicines. This approach was reiterated by the Department of Health & Social Care publicly and privately.

It has recently come to light that this ‘alternative study’, widely understood to imply observational trials, is no longer being considered despite previous commitments and assurances.

We have pleaded with the Department of Health & Social Care to step in and fund our private prescriptions until the NHS starts to prescribe. They have so far refused. saying that it is not possible procedurally or legally. This is despite us providing them with information from our legal advisors, confirming that such a move would be legal and possible. We have also learned in recent weeks that the devolved administration in Northern Ireland has found a way to do this in at least one case.

Many of us will run out of funds by the end of this year. We are more than aware of what can happen when our children are unable to access their current treatments with many experiencing worsening seizure control often resulting in emergency department admissions and prolonged periods in hospitals.

We have heard countless reasons, some contradictory, about why it is not possible for us to be granted NHS prescriptions for our children. We have been told that more evidence is needed to ensure the type of medical cannabis we are talking about is safe. Despite this, the medical world is happy for it to be prescribed privately. Surely, if it’s considered safe to be prescribed privately, it is safe to be prescribed on the NHS?

Some NHS Trusts and CCGS have said it is their policy not to prescribe such medicines however at least one Trust and two CCGS have issued prescriptions. Along with all the other challenges we are currently facing it now seems we’re also up against a postcode lottery for NHS access.

Other parts of the medical establishment have said that we need more high-quality clinical evidence from RCTS. We agree that RCTS are needed in the longer term but they are simply not suitable for those of us whose children are already on these treatments. Participation in RCTS would require a process of ‘washing out’ to remove existing medicines from our children.

Given the positive outcomes that these treatments are providing we do not believe it is ethical or appropriate to stop and wash aut effective medicine to participate in RCTS that would require some to be given a placebo. This is simply not a risk we are willing to take and is an

issue that has been recognised by NHS England in their 2019 report.

We hope you will agree that the current situation is cruel, irrational and goes against the will of Parliament that changed the law in 2018 to help families like ours.

With the above in mind, we urge you to commit to working with Ministers and ourselves to find a way to provide financial support for the costs of private prescriptions or establish alternative access to these products through the NHS as a matter of urgency. The financial and emotional pressure of the last two years is pushing our families to the edge of ruin, we hope that with your support we can find a much needed solution.

Yours,

The End Our Pain families – Joanne & Paul Griffiths, Margi Huxley, Sam Fairlie, Karen & Stuart Gray, Elaine Gennard & Graham Levy, Lauren Abernethy, Dee Morris, Rachel Rankmore & Craig Williams, Julie Young, Ilmarie Braun, Ashley West, Emma Appleby, Katie Sullivan, Tannine Montgomery, Emma Mathews, Emma & Jason Smith, Charlene & Innes Londra, Julie Galloway, Michelle & Matthew Rice, Emily Howis & Spencer Carkeet, Laura Audley,

Lucy Richardson, Holly Malone, Benedict Lamb, Dr Callie Seaman, Matt Hughes, Debbie Forrest.

Write to your MP here: https://endourpain.org/find-my-mp/