THE PARENTS of a toddler who can fit up to 100 times a day have pleaded with Health Secretary Matt Hancock to help them secure medical cannabis for their little boy.
With every seizure Charlie Hughes' body suffers irreparable damage as he battles a severe case of epilepsy.
The three-year-old's desperate parents say there is a drug that could change, even save, Charlie’s life – but the NHS won’t prescribe it.
Ali, 38, and Matt Hughes, 40, have now penned an open letter to Mr Hancock urging him to help their family and others in the same situation.
The Sun previously reported how the couple from Norwich had been granted permission by the High Court to challenge the “barbaric” decision by Nice – the medicines watchdog – to deny their son the “life-changing” drug.
The family were able to obtain a private prescription for two cannabis-based medical products called Bedrolite and Bedica to help treat their toddler's West Syndrome.
Since taking these products his spasms have reduced by around 85 percent.
The prescription is entirely legal but the family have been unable to get it on the NHS, meaning they have shelled out thousands of pounds for the drugs.
Ali and Matt previously said they were lucky to be able to pay for the drugs – but that they wouldn't be able to do so forever.
Speaking to The Sun last month they said: We can’t afford to keep paying for the treatment privately.
“Something has to give. Does a child have to die before they do something?
“It’s not just Charlie we are fighting for, it’s other children and their futures too.”
The restrictions on prescriptions are due to guidelines laid out by Nice.
On November 1 2018 the law changed so that doctors could prescribe medical cannabis – despite this hardly any prescriptions have been given.
As the second anniversary of the legal change approaches, Ali and Matt have requested a meeting with Mr Hancock to ask the Department of Health and Social Care to "step up" and help their child.
The letter reads: "Our experience is that everyone we have encountered in the system has huge sympathy for our child, but no one will step up and help him.
"There is confusion and fear baked into the system and Charlie, and all children like him, are bearing the risks and the costs.
"We are asking you to step up: Please help our child. Each month that goes by causes our personal financial circumstances to become more precarious and is a continuing strain upon everyone in our family.”
What is West Syndrome?
West Syndrome is a form of epilepsy and is also known as infantile spasms.
In the early stages of the condition, a child's fits are likely to be brief and infrequent, making it hard to diagnose, according to Epilepsy Action.
Due to the pattern of attacks and the distinctive cry a baby lets out, it can be mistaken for colic.
A baby suffering an infantile spasm will tend to suddenly bend forward, their legs and arms stiffening.
Sometimes a baby's arms will be flung outwards, and they will tend to affect both sides of the body equally.
A seizure tends to last one to two seconds, before a pause and then another spasm. This is in a child's early years and this can increase in frequency as they get older.
They tend to happen in "runs" or "clusters", and they can cause permanent brain damage.
The danger of the condition lies in the fact it can go undetected for so long.
The only drug currently licensed in the UK is Epidyolex, for the treatment of two types of childhood epilepsy, Dravet syndrome and Lennox-Gastaut syndrome.
Charlie’s condition – West syndrome – is not on that list, and as a result doctors are unable to prescribe the drug to him.
A judge at the High Court has now granted the family permission to take Nice to a judicial review.
The family had previously been raising money for a Crowd Justice campaign but have since been granted legal aid.
In the letter to Mr Hancock the family states that "they are not wealthy people and need an NHS prescription".
They added: "We understand that you would not be able to discuss the judicial review with us and we do not want or expect to do so.
"We recognise that the court in that case will not re-write the guidelines itself.
"We remain many steps away from resolving this so that our family can get on with our lives."
NICE published guidelines last year that state research is still limited and of low quality “making it difficult to assess just how effective these medicines are for people with epilepsy”.
In a statement the Department for Health & Social Care said: “We sympathise with patients dealing with challenging conditions and the decision on whether to prescribe medicinal cannabis is ultimately one for clinicians to make.
“Since the law changed, two cannabis-based medicines have been made available for prescribing on the NHS for patients with multiple sclerosis or hard to treat epilepsies, where clinically appropriate. This follows clear evidence of their safety, clinical and cost effectiveness.
“However, more evidence is needed to routinely prescribe and fund other treatments on the NHS and we continue to back further research and look at how to minimise the costs of these medicines.”
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