Father of meningitis death girl accuses government of complacency

A man whose daughter’s death from meningitis sparked a nationwide petition for more children to be vaccinated against it has accused the government of complacency.

On the first 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.

Burdett and his wife, Jenny,, made the 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 declined 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 launched a meningitis awareness campaign, promised by a former public health minister.

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. “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.”

Faye’s meningitis was initially mistaken for a virus: she was sent home from Maidstone hospital but returned seven hours later.

Burdett, 38, said an investigation was still ongoing into what happened at the hospital but he is critical of the process in which hospitals carry out their own investigations when things go wrong. “This is a process where people are investigating themselves. The hospital is judging itself,” he said. “This needs to be an outside, independent process.”

Asked how he and his wife were coping, he 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.”

Burdett, a lorry driver, and his wife Jenny, 36, a beautician, spent every day at Faye’s hospital bedside. “She could hear and she could react,” he said. “Every morning I would sit with her and she would squeeze my finger.

“Once, she opened her eyes and she looked around. She mouthed the word ‘mummy’. We never heard her voice again because of the ventilator.”

Doctors told them Faye’s 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,” Burdett said. “Her kidneys weren’t working and the list went on and on. 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.”

Faye Burdett before (left) and after she contracted meningitis. Photograph: Meningitis Now/PA

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,” 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.”

Burdett 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, Jane Ellison, then public health minister, 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. Burdett said the government had promised to include a page on meningitis symptoms in the red book given to the parents of newborns, but this had also not yet been done.

A Department of Health spokesman said: “The UK is the first country in the world to have introduced a national Men B vaccination programme using Bexsero. We have made important progress, vaccinating more than one million babies since September 2015, in which time the number of cases in infants aged one and under has dropped by 50%.”

Public Health England has launched a separate campaign on sepsis. The charity Meningitis Research Foundation estimates that 400 cases of meningitis B among children up to the age of five could have been prevented if they had been given access to the vaccine.

Father of meningitis death girl accuses government of complacency

Only complacency can stop Nigeria – and Africa – from finally conquering polio | Oyewale Tomori

In Nigeria, if we’re diligent and careful, we may never see another child lose the use of their legs to polio.

Thirty years ago, millions of children went unvaccinated against a preventable disease that persisted and paralysed in nearly every country in the world. Since then, the number of unvaccinated children has dropped precipitously. While we still have work to do to ensure not even one child is missed, the biggest challenge Nigeria has to contend with now is complacency.

On 24 July 2016, Nigeria reachedtwo years without a case of wild polio. That is commendable. But if reaching this landmark has left many euphoric, total eradication would be historic. If Nigeria and the rest of Africa can make it to July 2017 without a case of polio, we will be officially polio free. To do this, we have to consolidate the progress we have already made, and vigorously invest in our collective capacity to contain and wipe out the disease wherever it may linger.

To banish polio from Nigeria and the rest of the continent, we must vaccinate every child. To miss even one would be to leave the door open for wild polio virus to return, or to risk outbreaks of vaccine-derived polio virus, a very rare form of polio that can emerge in under-immunised populations.

In Nigeria and across Africa, national governments have been instrumental in supporting this last-mile effort. So too have local civil society leaders, religious and traditional chiefs. All have been backed by the incredible commitment of the continent’s health workers. It is through these networks that we are able to quickly, aggressively and effectively respond to the last vestiges of polio in some of the most remote corners of the world.

Since President Muhammadu Buhari took office last year, he has clearly stated that he is committed to ending polio in Nigeria. Earlier this month, following a meeting with Dr Matshidiso Moeti, the World Health Organisation’s regional director for Africa, Buhari called for a reinvigorated approach to guaranteeing Nigeria’s polio-free status by prioritising public funding to health programmes and to innovative strategies that have enabled the country to immunise millions of children even in hard-to-reach and insecure areas. While national commitment is critical, state governors and local officials need to act on Buhari’s message. They must not only pledge to keep Nigeria polio-free, but also ensure all our children have access to the vaccines they need to protect them from killer diseases.

The health infrastructure built to eradicate polio need not disappear with the disease, either. The infrastructure and response mechanisms built to bring an end to polio can and should be repurposed into sustainable public health programmes and a functioning health infrastructure. We should care for our children with the same excitement we exhibit when bringing them into the world and not abandon responsibility to donors and international agencies.

Nigeria already has the opportunity to develop a great legacy. In the past two years, polio surveillance networks have been used to monitor and contain the 2014 Ebola outbreak, as well as responding to measles and rubella outbreaks throughout Africa.

Nigeria should also take the lessons learned from its emergency operations centres – which have been used to great effect for polio and were instrumental in stopping Ebola – to monitor and control disease outbreaks such as Lassa fever, and provide better health services to the large population of internally displaced people.

I know better than most that the obstacles that stand in the way of eradication are not to be discounted. The violent insurgency in north-east Nigeria has made routine vaccination exceedingly difficult in certain parts of the country, and finding and vaccinating children displaced by violence remains a major challenge. Nonetheless, the eradication of polio is not a luxury. We have come too far and invested too much to rest on our laurels.

Those who have dedicated their lives to improving public health are said to run on impossible idealism and a tenacious commitment to the greater good. Few of them are ever lucky enough to bring a definitive end to such a devastating disease. For all of the children whose lives have been irreparably damaged by an entirely preventable illness, let’s come together and call on our leaders at home and abroad to make polio a distant memory.

• Dr Oyewale Tomori is president of the Nigerian Academy of Science and chairman of Nigeria’s Expert Review Committee on Polio Eradication and Routine Immunisation

Only complacency can stop Nigeria – and Africa – from finally conquering polio | Oyewale Tomori