Meningitis hero Steve is honoured

Published on: 31 Oct 2014

Meningitis Now founder Steve Dayman

THE MAN behind a national charity which has its roots in Downend has been honoured with a Pride of Britain award for his lifetime’s crusade to stamp out meningitis.

Meningitis Now founder Steve Dayman, 66, was driven to help others after losing his baby Spencer to the disease.

He set up Meningitis UK which was based at Cleeve Wood Road for nearly a decade before moving to bigger premises in Kingswood in 2011.

The charity is now even bigger after merging with Stroud-based Meningitis Trust in April and forming the UK’s largest meningitis charity.

Steve collected the Special Recognition award during a celeb-filled ceremony at Grosvenor House, London, on October 6.

Steve began his relentless, 32-year crusade after witnessing his 14-month-old son Spencer succumb to meningitis in 1982. 

He has been called ‘the father of the meningitis movement’, and raises millions of pounds towards preventative research as well as spreading awareness and travelling the UK meeting and inspiring affected families.

Steve, of Alveston, said: “It’s an absolute honour to be recognised on the national stage – I’m humbled, but the fight is bigger than one man.

“The honour is tribute to Spencer and the thousands of families touched by the trauma meningitis causes.

“Without my family and friends, it wouldn’t have been possible for me to make the contribution I have.

“I will not stop because I want the dreaded disease eradicated, so no one else feels the pain I and many others have felt.”

Steve, who received his statue from Labour Party leader Ed Miliband and his wife Justine, attended the evening with family, including wife Gloria.

Mr Miliband praised Steve’s “extraordinary courage and humility”, saying “It’s the true definition of courage, he’s a true hero. What he did is unimaginable, his response has been extraordinary.”

Steve, who received a University of Bristol honorary degree in July and MBE in 2010 for his work said: “It was an amazing evening – a surreal spectacle.

“There were so many inspirational award winners, and celebrities. The evening will stay with me forever – it was emotional to see my work rewarded.”

The award comes just after he helped press the Government to put the UK’s first Meningitis B, the form Spencer had, vaccine free on the NHS, subject to price negotiations with its manufacturer.

Steve also co-launched Stroud-based Meningitis Now, formerly Meningitis UK and Meningitis Trust, last year.

Meningitis Now chief executive Sue Davie said: “Steve thoroughly deserves his Pride of Britain award.

“His achievements over the years are vast and world-changing, and the amount of people he’s helped is innumerable. 

“He’s unrelenting, inspirational and many advances in the field wouldn’t have happened without him. We’re honoured to work alongside him.”

Spencer’s case “baffled” doctors and he died within 24 hours of admission to Southmead Hospital.

Steve said: “We were heartbroken and consumed by shock and emptiness – one minute he was here, the next – gone.

“I held Spencer – the devastation and void is something I’ll never forget.

“His death completely changed my life.”

Steve, then 34, remembers “tickling Spencer’s cheek to make him laugh – all the while unaware he was dying” – a thought that spurs him on. 

Spencer’s passing saw Steve, Gloria and a few friends start campaigning.

Steve remembers ‘experts’ of the time saying he would not see any meningitis vaccines in his lifetime.

But vaccines to combat Hib, Pneumococcal disease and Meningitis C are now free on the NHS.

The vaccine for Meningitis B, the most common form of bacterial meningitis in the UK, was approved for the NHS, subject to price negotiations, in March.

Steve said: “Initially, I was astonished by how little people knew about the disease, including the medical profession. It was startling to discover no leaflets, no charities and no help available.

“We felt alone – something had to be done because we wanted to protect others from the horrendous pain of losing a loved one.

“I wanted to do something Spencer would be proud of and never expected to make the strides we’ve made.”

Steve has been instrumental in publicising the ‘tumbler test’ in the UK after hearing a Norwegian scientist describe how holding a glass up to a rash could help detect meningoccoccal septicaemia.

Spots or a rash which do not fade under the pressure of a glass, is a medical emergency.

Steve said: “I saw the tumbler test and was amazed at how a simple glass could be used to help diagnose septicaemia, the blood poisoning form of meningitis.

“I was proud to promote the idea over here and am overjoyed it has become a lifesaving tool.”

Being fit, Steve took on charity marathon walks, which often involved 40 days walking on end and routes such as John o’Groats to Land’s End. 

The fundraiser has since raised more than £2 million from marathon walks alone, amassing over 12,000 miles.

It dawned on Steve that awareness would have had little effect in Spencer’s case, so in the late-1990s decided to dramatically change his crusade towards funding vaccine research.

He forged Bristol-based Spencer Dayman Meningitis UK in 1999, to primarily fund a £500,000 state-of-the-art research laboratory at the University of Bristol.

The Spencer Dayman Meningitis Laboratories officially opened in April 2002 and now houses a £2.5 million research investment.

Meningitis UK united with Meningitis Trust, which Steve also helped launch, in April 2013.

To donate to Meningitis Now or for more information, including the signs and symptoms of meningitis, visit www.meningitisnow.org.

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