Please help our son Charlie to access life saving medicine

by The family of Charlie Hughes

Please help our son Charlie to access life saving medicine

by The family of Charlie Hughes
The family of Charlie Hughes
Case Owner
We are the family of two year old Charlie who suffers from West Syndrome. We're taking legal action to make sure Charlie has access to the medicine he needs.
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The family of Charlie Hughes
Case Owner
We are the family of two year old Charlie who suffers from West Syndrome. We're taking legal action to make sure Charlie has access to the medicine he needs.
Pledge now

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Who are we?

We are the family of Charlie Hughes. Charlie is two years old and he suffers from a a rare epileptic condition called West Syndrome, which causes spasms and developmental delay. 

All we want is for Charlie to have access to potentially life-saving medication  but we have been refused due to guidelines produced by the National Institute for Heath and Care Excellence (NICE).

Despite being refused Legal Aid, we are determined to bring this case to court to ensure that Charlie and other children have access to the medicines they so desperately need.

Please donate what you can and share the page with friends and family. We need as many people as possible to hear Charlie's story and support us! 

Charlie's story

Charlie was diagnosed with West Syndrome at 10 weeks old. He has in the past suffered up to 120 spasms a day and his condition has been largely resistant to anti-epileptic medication.

His doctors have confirmed that Charlie’s seizures are causing damage to his developing brain and any treatment that is effectively reducing these seizures is reducing the damage being caused. Conversely, withdrawing any such treatment will likely result in further damage and could have life-threatening consequences. 

In May 2019 Charlie started taking two cannabis-based medicinal products, Bedrolite and Bedica, which were obtained from a private doctor. The drugs are manufactured in Holland according to the EU guidelines for good manufacturing practice (GMP). Since taking the drugs Charlie’s seizures have reduced to less than twenty a day and some days he is seizure free. There was also a significant improvement in his social and physical development. Charlie is happier, more alert, far more vocal, constantly babbling and began taking an interest in general plastic toys.

An electroencephalogram (EEG) in October 2019 provided objective evidence that the drugs are working, showing significantly reduced epileptic activity in Charlie’s brain.

Charlie’s NHS doctors accept that there has been a significant improvement in Charlie’s condition due to the cannabis-based products and say they would prescribe them if they could. However, the NHS Trust responsible for Charlie’s care says that the NICE Guideline on the prescription of medicinal cannabis prevents them from prescribing it. 

NICE say that their Guideline does not prevent prescriptions from being made, where it is clinically appropriate. But the way the Guideline is worded does not give doctors and NHS Trusts the confidence they need to prescribe the products.

Charlie’s MP Chloe Smith wrote to the Secretary of State for Health and Social Care Matt Hancock to ask how the situation could be resolved. Mr Hancock responded that he was “determined that patients should receive [cannabis-based] products where it is clinically appropriate”.

But the situation has not changed for Charlie; he is still being refused a prescription.

As a result they have to pay thousands of pounds a month to pay for the drugs privately. This is not affordable in the long term and they worry that they will run out of money, with life threatening consequences for Charlie. They feel they have little option but to bring legal proceedings in the form of a judicial review against both NICE and the NHS Trust.

At only two years old, Charlie has spent the whole of his life trying different medications. Finally, we’ve arrived at a treatment that will not only help his condition, but reduce any further damage to his brain. We are desperate to have CBMP’s approved. Every day that we don’t see justice is another day of suffering for Charlie.

How can taking legal action help?

We want to launch a judicial review, against both NICE and Cambridge University Hospital NHS Foundation Trust, to change the legislation that currently denies Charlie access and funding to medication. 

We want to challenge the failure of the NHS to prescribe what for Charlie is a life transforming, and possibly lifesaving, treatment.

Why this is so important?

This isn't just about our family. We're doing this for the other families who are forced to watch their children suffer without access to these crucial medicines.

The challenge is part of a wider campaign on behalf of other families affected by treatment-resistant epilepsy, who have also seen benefits from medical cannabis but are unable to access it on the NHS. The campaigning group ‘End Our Pain’, which helps secure legislation for access to whole plant medical cannabis for these families, who hope that this challenge will result in positive changes for them too.

Please donate - what you can- every little helps - and share this page far and wide on social media or via email and Whatsapp. We greatly appreciate your support for Charlie and our family!


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