Family devastated by meningitis B accuse government of complacency over vaccines

Today marks 12 months since the death of toddler Faye Burdett. It might have been a very private anniversary for a family mourning their loss, but just 48 hours after their daughter slipped away, overwhelmed by meningitis B, her parents Neil and Jenny decided to release harrowing pictures of the two year old covered in a rash and ravaged by sepsis.

The images prompted more than 820,000 people to sign a petition for the meningitis B jab Bexsero, which is currently only available on the NHS for babies aged from two to five months, to be given to all children. However, a year on the Burdett family say little has been done despite promises from the Government that it would act to raise awareness of the disease.

Mr Burdett said: “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 and an investigation into her treatment is still ongoing.

“Every day we talk about her,” added Mr Burdett. “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, 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, but their public fight to expand the current vaccination system will continue. According to the Meningitis Research Foundation had the Bexsero jab been more widely available, 400 cases of the disease in under fives could have been avoided.

The charity has fed into a working group which was looking at the cost effectiveness of vaccinating older children, but the report which had been promised last year has yet to materialise and is unlikely now to be published until the summer.

Vinny Smith, chief executive of MRF, said: “Introducing the MenB vaccine for babies was a major step forward and we know it is already reducing cases in the under-ones. However, only about one quarter of cases occur in this age group.

“A report reviewing the lifetime value of vaccines was due in 2016, but red tape means that is now delayed. The government’s report needs to be published urgently and it needs to be open to scrutiny so that fairer decisions on vaccines can be made as quickly as possible.”

For more information on the MRF’s campaign go to meningitis.org/broken-hearts.