Dad whose daughter died of meningitis B blasts Government for not vaccinating all kids against deadly brain bug
A MAN whose daughter died from meningitis - sparking a nationwide petition for more children to be given the vaccine - has accused the Government of complacency.
On the one-year anniversary of Faye Burdett's death, her father Neil said the Government has done "absolutely nothing" to raise awareness of the disease, despite promises to do so.
He also revealed that two-year-old Faye - who fought meningitis B for 11 days - mouthed the word "mummy" just before she died.
Mr Burdett and his wife Jenny made the heartbreaking decision to turn off Faye's life support last Valentine's Day after her body was ravaged by sepsis caused by meningitis.
They released photos of their dying daughter covered in a rash, prompting more than 820,000 people to sign a petition for the meningitis B jab Bexsero to be given to all children.
The Government has since refused to make the vaccine more widely available, saying it is not a good use of money.
Ministers have yet to release calculations on how vaccines are deemed to be affordable and have not yet launched a meningitis awareness campaign, promised by a former public health minister.
Speaking exclusively to the Press Association, Mr Burdett said the decision not to extend the vaccine to more age groups was "insulting and devastating".
He said he has heard nothing since appearing before MPs on the Petitions Committee last March.
The Government is being complacent and we feel badly let down. There is just this massive hole that children are falling into
Neil Burdett
"Children under five are vulnerable to meningitis and they can't tell you exactly what is happening," he said.
"They are solely reliant on their parents and carers to spot that something is wrong.
"We have been through something so terrible and we thought if we could stop it happening to other families, that's what we wanted to do.
"But since going to Parliament, we've heard nothing.
"If nobody in Parliament is going to take any notice and do something, who else is there?
"The Government is being complacent and we feel badly let down.
"There is just this massive hole that children are falling into.
"We feel like we were ushered out of the building and that was that. It's all been brushed under the carpet.
"The MPs there said they would keep pushing for an awareness campaign but we've heard nothing, not even from our own MP.
"It's not acceptable and it's not fair because children are still dying."
The grief felt by the Burdetts is made worse by the fact that Faye's meningitis was mistaken for a virus.
She was sent home from Maidstone Hospital but returned seven hours later.
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Mr Burdett, 38, said an investigation is still ongoing into what happened at Maidstone Hospital but he is critical of the process which sees hospitals carry out their own investigations when things go wrong.
He said: "This is a process where people are investigating themselves. The hospital is judging itself.
"This needs to be an outside, independent process."
Asked how he and his wife were coping, Mr Burdett said: "I don't think it ever gets any better.
"You learn to cope, you learn that you can do crazy things or push the self-destruct button, but none of that is going to bring Faye back.
"Every day we miss her, we talk about her. There's a huge hole in our lives that is never going to be filled.
"But we're also proud of her - because of the petition and because for 11 days she fought meningitis against the odds. That shows her strength and her fight."
Mr Burdett, a lorry driver, and his beautician wife Jenny, 36, spent every day at Faye's hospital bedside.
"She could hear and she could react," Mr Burdett said.
"Every morning I would sit with her and she would squeeze my finger.
WHAT IS MENINGITIS?
It can easily be mistaken for flu or a hangover in adults, but knowing the signs of meningitis can prove life-saving.
The deadly disease can affect anyone, but is most common in babies, young kids and young adults.
Meningitis causes an inflammation of the membranes that surround and protect the brain and spinal cord and can be triggered by bacteria or a virus.
If it is not treated quickly meningitis can develop in deadly septicaemia, or blood poisoning, that can cause permanent damage to the brain or nerves.
Around 3,200 people a year are diagnosed with bacterial meningitis and one in 10 die or are left with life-changing disabilities.
Viral forms of meningitis are less common and rarely life-threatening.
What are the key symptoms?
The symptoms of meningitis can develop very quickly, and include:
- a high fever – over 37.5 degrees (the average temperature)
- being sick
- a headache
- a blotchy rash that won’t fade when a glass is rolled over it
- stiffness, especially in the neck
- drowsiness, irritability or a lack of energy
- cold hands and feet
- seizures
In babies the symptoms can be slightly different, they may:
- refuse to eat
- be agitated and not want to be picked up
- having a bulging soft spot on their head
- be floppy and inresponsive
- have an unusual, high-pitched cry
- have a stiff body
Source: Meningitis Research Foundation
"Once, she opened her eyes and she looked around. She mouthed the word 'mummy'.
"We never heard her voice again because of the ventilator."
The couple made the heartbreaking decision to switch off Faye's life support after doctors told them her chance of survival was minimal.
The couple had already signed forms consenting to the amputation of both Faye's legs at the hips, one complete arm and the other arm just below the elbow.
"There was also the internal damage that sepsis had done," Mr Burdett said.
"Her kidneys weren't working and the list went on and on.
"She had fought so hard. Turning off the machine was the hardest decision we have ever had to make but it was the right thing to do.
"We've never regretted that decision."
The Burdetts plan to spend the anniversary of Faye's death quietly at home in Maidstone, Kent.
"We will go and visit her gravestone and take flowers," Mr Burdett said.
"We will light a candle for her as we do every night.
"Faye was a very happy girl who loved to run around. She loved painting and was very clever for her age, she was so bright and determined.
"Faye loved curry, I would make her chicken tikka masala and she loved it. She was such a happy little girl but that's the thing with meningitis - in the click of a finger, it all changes."
Mr Burdett also warned other parents not to give their child ibuprofen or paracetamol before taking them to the hospital or GP.
The couple gave Faye ibuprofen, which they believe masked some of her symptoms.
Last April, former public health minister Jane Ellison pledged to launch an awareness campaign for parents on the signs of meningitis and the Government agreed to release its cost-modelling for vaccines.
There is concern that the current model does not adequately account for the lifetime costs of caring with somebody left disabled by meningitis.
Bexsero is available on the NHS for babies aged two months, followed by a second dose at four months and a booster at 12 months.
Parents who wish to have older children vaccinated must pay privately.
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