In this session the committee heard evidence from the Burdett family, parents of Faye; Claire Timmins, who lost her son Mason in 2013; ex England rugby player Matt Dawson, whose son Sami recently contracted the disease; and Lee Booth, who started the petition last year after his daughter was deemed too old to have the vaccine on the NHS.
Our chief executive, Sue Davie, also attended the session to support the families involved. She said: “Today is all about the families who find themselves victims of this devastating disease. We find ourselves, once again, full of admiration for the parents who have the courage to share publicly their meningitis experience in such a way.”
“This is particularly true of Jenny and Neil Burdett, who only weeks ago lost their daughter Faye.”
“These brave families represent the thousands of people who have been affected by meningitis in the UK and the 820,000 plus people who signed the petition calling for vaccination to be extended.”
“We welcome this hearing - and the one next week at which we will be giving evidence alongside medical professionals - and hope that the evidence provided by the families today will encourage MPs to represent the views of their constituents in the forthcoming debate.”
Following giving evidence to the committee, Jenny and Neil Burdett asked Meningitis Now to issue the following statement.
“We decided to release Faye’s pictures on social media to back the Meningitis B vaccination campaign and quite simply because we witnessed our 2-year-old daughter going from an extremely fit and healthy child (never been to the doctors) to fighting for her life in the space of a few hours. We were not even aware of the MenB vaccine - if we were, like many families, we would have been trying to get it privately."
“We believed that Faye would survive and we would have been happy if she had, even with multiple amputations such as arms and legs. And yes - we simply did not want to lose her - as long as she didn’t die. It was at this point that we actually felt passionate about making people aware that the vaccine existed. We knew that both our life and more so Faye’s, had changed forever and that we never wanted to picture another family sitting by their child’s bed watching their tiny child fight so hard to remain on this earth; willing them to live in any way possible – this image has changed our life.”
“After Faye died we knew that we had to raise awareness, and if showing even a very small amount of her suffering made that happen, we were willing to do so. Meningitis is a word that puts fear in every single parent’s heart; we saw that for ourselves in the Evelina Children’s Hospital, when other parents would enquire what was wrong with Faye. They were genuinely frightened when we said meningitis.”
“What we would like to see as a result of this petition, is for at least children aged up to 5 to be vaccinated. Why? Because, like Faye, they are unable to communicate what they are feeling. Faye couldn’t say she had a headache, that her body ached, or that she was generally unwell. As her parents we had to guess, and guessing is not good enough with meningitis. We need to protect our children, not just the 30 or so like Faye that die each year, but the 400 plus that are maimed for life; those that will battle as a result of having meningitis. We feel so much for those children and their families. Our fight with meningitis stopped when Faye died. For those at risk, the threat of this disease is ongoing and what better reason could there be to vaccinate?”
Jenny and Neil Burdett
The Burdett’s local MP, Helen Whately MP, added: “Neil and Jenny have been so brave giving evidence to Parliament today, so soon after losing their daughter - their determination to raise awareness of meningitis B is inspiring. When I met them a few weeks ago I said I would do all I could to help, and I will speak up for them when Parliament debates the vaccination programme.”
“I’m proud that the UK is the first country in the world to vaccinate babies against this terrible disease, but I will be pressing ministers to look again at vaccinating older children and doing more to raise awareness of symptoms, as quick treatment can be the difference between life and death. I know the Government takes this issue very seriously; when I asked David Cameron about it at a recent Prime Minister’s Question Time he agreed that we need to look at all the evidence carefully.”
“I have also met Meningitis Now, which is doing important work supporting bereaved families, as well as making sure that everyone – teachers, parents and health professionals – recognises the symptoms of meningitis. With all this work going on I'm optimistic about reducing suffering from meningitis B in future.”
Helen Whately MP