Families’ letter to Prime Minister highlights ‘cruel inconsistencies’ in medical cannabis policy

Families have written an open letter to the Prime Minister pleading with him to remove  medical cannabis blocks.

The families of 25 children and young people suffering from severe epilepsy, have written an open letter to Boris Johnson urging him to intervene in their long running fight to secure NHS access to medical cannabis.

It comes after they learned that Mr Johnson sent a congratulatory letter to the mother of a child who is believed to be only the third person to receive an NHS prescription after a two-year fight.

In it the Prime Minister said he ‘sympathised deeply’ with those suffering from drug-resistant epilepsy and ‘completely understands’ the importance for patients to have access to the most effective treatments on the NHS.

Supported by the End Our Pain movement and leading UK epilepsy charity Epilepsy Action, on Tuesday 1 December, campaigner Elaine Levy will be outside Number 10 with a placard featuring a copy of the letter.

Elaine’s daughter Fallon, 27, who has a rare form of epilepsy, Lennox–Gastaut syndrome, has been successfully treating the condition with medical cannabis since 2018.

But the cost of funding a private prescription each month has placed a severe financial and emotional strain on the family.

Elaine is among a number of parents who are currently paying up to £2,500 a month for medical cannabis for their children – and with covid restrictions affecting fundraising, some are expected to run out of the medicine within weeks.

On behalf of the End Our Pain families, Jo Griffiths, whose son Ben, 11, has treatment-resistant epilepsy, said they felt ‘let down’ by the NHS and the Government.

“This is a matter of life and death,” she commented.

“When the law was changed on 1 November 2018 we all thought that our children too would be able to secure access to what we have proved is a life-transforming medicine for them, but it was not to be. We have fought tooth and nail for our children but have been comprehensively let down by the NHS and the Government.

“It’s all well and good for the Prime Minister to write a congratulatory letter to one family. If he can write such a letter, surely he can step in and help sort out what is a cruel and total failure in the medical cannabis policy.”

Jo added: “We have been told that the Government can’t use public money to help pay for private prescriptions until the NHS gets its medical cannabis prescribing house in order, so imagine our outrage when it appears that public money has been used in this way in Northern Ireland.

“If it can be done in one part of the UK, surely it can be done in the others too?”

Health Secretary Matt Hancock previously requested that the NHS undertake a review as to why NHS prescriptions weren’t flowing.

Published in 2019, one of the main recommendations was for an ‘alternative study’ –  or observational trial – to be carried out as a means of getting access to medical cannabis for these children at no cost to them.

It now appears this commitment has been taken off the table, with randomised controlled trials (RCTs) which would require them to undergo a high-risk ‘wash out’ period from their current medication, being developed by the National Institute for Health Research.

Campaign director of End Our Pain, Peter Carroll, said: “We agree there needs to be more trials, but these children are already on the medicine and it would be unethical and dangerous to take some of them off the medicine so that they could take part in full blown randomised control trials which require some patients to be on placebo.

“Only in Britain could we end up with a fantastic policy change to legalise access to medical cannabis driven by the families of severely epileptic children, only to find that families with severely epileptic children can’t access it. The situation is riddled with inconsistencies.”

Epilepsy Action has joined forces with the families to ramp up pressure on the Government, following the two year anniversary of the medical cannabis law change on 1 November 2020.

Simon Wigglesworth deputy chief executive for the charity commented: “We urge the Prime Minister to end the suffering of these families and work with them and MPs towards the same goal. There must be a way to access this treatment on the NHS for children with severe epilepsy.

“For many it is a treatment that is already reducing their seizures – something that they feel finally works for their child, after exhausting all other options. Their calls for change have gone on long enough. They have already waited for two years, they cannot afford to wait any longer.”