Frome family’s plea to Prime Minister to end fight for NHS access to medicinal cannabis

THE parents of a 20-month-old child that lives with severe epilepsy, have joined a campaign to appeal for access to “life transforming” medical cannabis on the NHS. 

Emily Howis and Spencer Carkeet, parents of Clover Carkeet, are one of 25 families that have written an open letter to the Prime Minister pleading for him to intervene in their long running fight to secure NHS access to the medical cannabis that is proving to be “life transforming” for their children.  

Medical cannabis has been legally available via the NHS since November 2018, but the End Our Pain Campaign, which is supported by Epilepsy Action, say that it is thought that only three people have received an NHS prescription.

The Frome family have said that they pay almost £700 a month for their daughter’s cannabis prescription, whilst  the End Our Pain Campaign has said that some families are having to pay  up to £2,500 a month for private prescriptions.

Clover’s mother, Emily , told Frome Times, “The End Our Pain campaign has been relentlessly fighting for NHS access to medical cannabis on behalf of children like our daughter, Clover. Clover was diagnosed with Aicardi Syndrome at three months old, and suffers from intractable epilepsy that has not responded to pharmaceutical medication. 

“Medical cannabis gives Clover the best seizure control she has ever had, without the horrible side effects of conventional medicine. As a result, she is happy and bright, and doing incredibly well. We pay almost £700 a month for her cannabis prescription, and this cost will only increase as she grows bigger. NHS access or funding is an absolute necessity for us and so many other families.”

The families have been moved to write to the Prime Minister following news that he wrote a congratulatory letter to the mother of a child who it is believed has become only the third person to receive an NHS prescription after a two-year fight.

Co-ordinator of the families that are campaigning under the End Our Pain banner, Jo Griffiths,  added, “This is a matter of life and death.  When the law was changed on 1st 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.  But 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.

“Another inconsistency is that 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.  We were told that this wouldn’t be possible.  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?”

As a result of pressure from MPs across the House, the Secretary of State requested that the NHS undertake a review as to why NHS prescriptions weren’t flowing. The review reported on its findings and recommendations on 8 August 2019. 

One of the main recommendations was that there should be an ‘alternative study’ undertaken (an observational trial) as a means of getting access to medical cannabis for these children at no cost to them.  However, it appears this commitment has been taken off the table.

Epilepsy Action deputy chief executive Simon Wigglesworth said, “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.” 

Peter Carroll, campaign director of End Our Pain said, “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.  Some medical professional bodies are saying there isn’t enough evidence that it’s safe.  But it’s seen to be safe enough to be prescribed privately, so why not on the NHS?  Others say we need more trials.  We agree.  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.  Quite rightly, the NHS offered a more suitable observational trial – but this has evaporated.  Others argue that medical cannabis is too expensive.  But many of these children are now off the very expensive pharmaceutical drugs that have been part of their lives for years, often with debilitating side effects and many now go months without the need for hospitalisation, all of which saves money.”

For further information about cannabis-based medi-cines and epilepsy, people can visit: epilepsy. org.uk/ involved/campaigns/cannabis. To find out more about End Our Pain’s campaigning work, visit: endourpain.org

Picture: Emily Howis with Spencer Carkeet and their daughter Clover.