Skip to main content

Your petitions: Lee Booth's story

17 November 2016

Lee Booth started a petition calling for the meningitis B vaccine to be given to all children. The petition gathered over 820,000 signatures and Lee gave evidence before the Petitions and Health Committees ahead of a debate on the issue. Lee talks about his petition campaign.

Petition for Meningitis B vaccine

I started the Meningitis B petition after a trip to the doctors for my youngest daughters regular set of inoculations. I was aware that the MenB vaccine had just become available on the NHS and made enquiries about my daughter having it.

I was stunned when I was told my 6 month old daughter was "too old" to get it, and that only new-borns would be getting the vaccine. At this point I didn't really know much about meningitis, but I knew that it could be deadly. I went home and did some research and was horrified at what I found: my daughter, and therefore thousands of other young children, were at serious risk of dying or suffering life changing disabilities, even though a vaccine was available.

Starting the petition

I was aware of the petitions website, as I had signed a few petitions before, and decided that I would try and change the system so that no children would be at risk of this horrendous disease.

I started writing the petition, trying to be concise as well as factually correct. I hoped that I would raise awareness and bring it into the public eye – I never imagined how far it would go.

I started the petition on the 14 September 2015. Despite my best efforts to get it to go viral, it didn't. There were moments where I thought 'this is it', but the numbers didn't rise as fast as I'd hoped. I couldn't understand it, why were people not signing, it would potentially save children's lives I expected everyone to sign and support it.

The numbers rose month by month, I got excited when I started getting into the hundreds. I'd spent ages tweeting and posting on Facebook etc., but it really wasn't going anywhere. That was until the night of 13 February 2016, I remember it well as I was away for the weekend with my family, I said to my wife something's happening – the numbers were starting to climb faster than at any point since the petition started. I was contacted by members of a Facebook group of mums who had all had children in the same month; Faye was one of those children.

Faye Burdett

After chatting online to various members I became aware that Faye had contracted Meningitis B and was in a serious condition in hospital. Being a father and having children of a similar age, it really affected me. I started to think 'What if I'd started the petition earlier?', 'If more people had signed it would she any many others be so ill?'

Then the worst possible news came the next day, on 14 February that Faye died. I was devastated – I even felt guilty (as if it was my fault that I'd not done enough.) I'd never felt like this, let alone about someone I'd never met. From that point onwards, and after the pictures were released, the petition soared. People woke up to the dangers of Meningitis (B). I had a new drive, along with the Facebook group, we tweeted the world, and many of us got barred for sending too many Tweets. We needed people to realise there was a vaccine available to stop children dying.

The numbers were unbelievable, the petition reached 10,000 within days and 100,000 within a week; there were 50,000 signatures an hour at some times. The phone started ringing constantly, I'm not sure how as I'm ex-directory and had only given my number out once. Meningitis B became headline news, everywhere.

Media interest

It started off with local radio interviews, and then local TV, then I had to go into BBC Newcastle to do 12 radio interviews nationwide. Journalists were ringing up at all times, TV cameras wanted to come round, with very little notice. It got quite stressful at times; I didn't want to let anyone down, as the publicity was doing the petition wonders. It was hard though, working, being a father and doing all the media stuff! It became a bit of a joke between me and my wife as to who had been in touch that day, BBC, ITV, Channel 5, Sky News etc.

I'd been invited on a few TV shows, all in London and had to decline as I was the primary carer for my daughter, I just couldn't do it all. It was hard for my family during this time, as I had this as my primary focus. I attended Portcullis House to give evidence, there were media crews and reporters everywhere. I appeared live on Sky News, I don't know what had happened to the 'shy guy who shunned the limelight', but I just wanted to do the best I could for the campaign. The frenzy continued for weeks, thankfully some periods were quieter than others.

My second time to London was via Manchester where I'd appeared on BBC Breakfast with Mia's mum and dad, who gave a heart wrenching account of what had happened with their daughter. Listening to their story was very difficult, but it also gave me a renewed purpose and determination to persuade government that the rules should change and no more parents would suffer the heartache they had.

Meningitis B vaccine inquiry

I arrived in Westminster Hall and had a look round before going into the hearing, my heart was pounding and I felt overwhelmed. I knew what I had to do, but it was so far removed from my comfort zone. Seeing the parents of the children who died from Meningitis gave me the strength I needed. I hoped that whatever happened or what I said that I wouldn't let them and every other parent down. As I spoke the thought of my own children, Isabelle and Hannah, keep me going – I was doing it for them.

Despite all the evidence, not the mention the 823,00 signatures on the petition, the government rejected the petition. I was gutted, absolutely gutted! I thought: 'how can they ignore all that evidence?', 'how can they keep allowing our children to die and be dismissed so callously?' I wasn't expecting vast changes, but I had hoped for more than I got. The meningitis charities were dismayed, as were parents of children that had been lost or suffered meningitis. The JCVI did concede sometime later, that the meningitis B vaccine would be cost effective to be given to the under 2s, but there wasn't enough of the vaccine to implement it, bitter sweet!

After the inquiry

I was truly gutted by the decision, it didn't hit me until a few days later though. I had helped to save children's lives through awareness alone, for that, it had all been worthwhile. A new TV awareness campaign is due to be launched soon, and parents are paying privately to protect their children, where they can afford to do so. I feel for those that can't afford to, and hope that someday that may change. I have paid £500 to get my children vaccinated, which is an awful lot of money, but what price can you put on a child's life?

I would encourage anyone to raise a petition if they feel strongly about an issue. However, don't expect it to change the world, it will more than likely just raise awareness to your cause. Unfortunately cost seems to be the biggest barrier, even against saving children's lives.

Find out more

The Petitions and Health Committees launched a joint inquiry on the meningitis B vaccine in March 2016. The Committee held two public evidence sessions to hear from those affected by meningitis B and medical experts. The Committee also scheduled a debate on the petition in April 2016.

Get involved

The Petitions Committee looks back at what your petitions have achieved in its first year as part of UK Parliament Week 2016. UK Parliament Week is a programme of events and activities that connects people with the UK Parliament.

Image: Parliamentary copyright