Our boy needs medical cannabis to survive but NHS won’t let him have it
WITH every seizure little Charlie Hughes suffers, irreparable damage is done to his little body.
The three-year-old can fit up to 120 times a day, as he battles a severe case of epilepsy.
His 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 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 couple from Norwich say their son Charlie can’t talk or communicate, and needs constant care.
Specialists at Addenbrooke’s Hospital in Cambridge have prescribed the toddler six different types of medication, but not one has worked.
After researching options, Matt says they got in touch with Hannah Deacon, mum of Alfie Dingley - the first epileptic child to be legally given medical cannabis in this country.
With Hannah’s help the couple were able to give Charlie the drug - and were blown away when their son suffered no seizures at all.
Describing it as the “best day of our lives”, the couple told The Sun: “There was a sunny weekend and we went out for a walk, he didn’t have a single seizure.
“We looked at each other but we didn’t say a word, we didn’t want to jinx it.
“It was a huge relief, we were totally elated and just over the moon.”
Ali and Matt met in 2006 and married in 2013. Then four years later little Charlie was born in 2017.
We don't know what our son is like without medication
Ali Hughes
Ali said Charlie was born via C-section and after the birth he was kept in hospital for a few days.
“Everything was fine once we took Charlie home.
“But when he was around nine weeks old he started to do a funny movement and a few times his head hit my chest, I thought it was just head control.”
This happened on a few other occasions and the couple decided to take Charlie to A&E.
They were dismissed but the movements continued and they then decided to seek help from their GP who told them to take Charlie to hospital.
Ali said the movements were coming on thick and fast and doctors gave Charlie medication to help the movements subside.
“They gave him an EEG which showed that from 10 weeks old he had been poorly.
“We don’t know what our son is like without medication”.
Charlie had more tests and the family felt as though they were back on an even keel.
Then in January 2018 the seizures returned.
“It was horrible, I was just in tears the whole time”, Ali says.
“We were naive to think that because he had responded well - we thought he would still be ok.
"He had so many tests, they showed he didn’t have brain damage and his MRI was clear - he had a good chance of recovery.”
Charlie was then referred to the hospital in Cambridge where specialists assessed his diet, he was also given steroids - neither of which helped, Ali said.
In May 2019, the couple started to give Charlie, who suffers a form of epilepsy called West syndrome, Bedrolite and Bedica, at a cost of around £3,200 a month.
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.
But, unable to afford it, the family had to trial a different drug, which costs £1,200 a month in March this year.
Ali said while they’ve been lucky to be able to afford it until now, they cannot go on paying for the drug forever.
Devastated that Addenbrooke’s Hospital and Nice refused Charlie the chance at a “normal life”, the couple are determined to fight for their son.
“We are getting pushed from pillar to post,” Matt said. “What is the crux of it, what is stopping them?
Ali added: “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.”
In March 2018 the Government made it legal for doctors to prescribe medical cannabis to patients with MS and some forms of epilepsy.
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.
A Department of Health spokesman said the decision to prescribe medical 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 MS or hard to treat epilepsies, where clinically appropriate,” they said.
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“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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A Nice spokesman said it is “unable to comment on individual cases”.
They 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”.