On World Meningitis Day, a new data portal shows true global impact of meningitis

A new tool known as the Meningitis Progress Tracker, launched on World Meningitis Day, shows that in 2017 alone, over 42 million years of healthy life were estimated to have been lost around the world as a result of meningitis and neonatal sepsis due to ill health, or early death.

Meningitis is a serious and deadly disease. Mike Davies, 60, became ill with meningococcal meningitis and septicaemia at Christmas 2017. He said, “My wife Julie and I had just moved to Brighton. We had just about unpacked all the removal boxes when it was time to get the Christmas decorations out.

“And there I was, wrapping one last present on the afternoon of Christmas Eve when I began to get colder and colder. Climbing into bed didn’t help. When I finally came downstairs I looked like a ghost with blue lips.

“My family insisted on the trip to The Royal Sussex County hospital where the fantastic NHS clicked in. A&E became triage and quickly became the Intensive Care Unit. They took over my vital functions.

“My son Rory counted 26 tubes or lines sticking in me. I was diagnosed with a bacterial infection – but which bacteria? A rash appeared on my face. The rash did not blanch. The bacteria was meningitis.

“Julie and Rory were taken to a room in the early hours of Christmas Day and told that I was not responding to any of the medication, and that I was unlikely to make it.

“Rory made sure he said everything he wanted to me. When they held my hand I could not feel it. My hands and feet were dying.

“I spent 10 weeks in Intensive Care - that’s 70 days and nights on the edge of survival with incredible staff giving incredible care.

“During this time I began to look forward (yes, looking forward) to having my hands and feet amputated. Legs went one week - hands the next. The hands took seven hours alone.

“Then I had weeks of recovery and wound healing.

“I had a further two and a half months in rehabilitation at Queen Mary's hospital in Roehampton, learning to walk again on prosthetic legs. The place has a great community of fellow patients to inspire each other - the day I was able to walk into lunch, no wheelchair this time, was such a lift for everyone.

“My message to anyone who has amputations would be not to give up. I’ve had a lot of challenges to overcome but learning to do something again for the first time is a huge deal.

“I have since walked three miles on my prosthetic legs and I now drive myself in an adapted car.

“It’s amazing what you cannot do without hands but also amazing what you can. Problem solving becomes an art. My fabulous wife Julie made a wrist-strap to hold a stylus that even today enables me to type, one key at a time, on the computer.

“Without using prosthetic hands I am able to feed myself using a wrist strap for cutlery. I can even hold a pint of beer.

“I have a genuinely renewed zest for life demonstrated in the many talks I have been invited to give to medical students, experienced NHS staff and to school pupils.

“For a long time I had to have my blood detoxified three times a week at dialysis in hospital as my kidneys were so badly affected, but I could have died. With the NHS’s help I survived.

“I feel in quite a positive place in my mind about the challenges I still have to overcome. Support from other people has been key. I am a lucky man.”

Understanding the true global impact of meningitis is tricky because much of the data available for each country and type of meningitis is based on estimates and the data comes from a variety of different sources. The Meningitis Progress Tracker brings together these estimates for the first time to help tell the story of meningitis globally.

Between 20-40% of people who survive meningitis or neonatal sepsis are left with impairments such as hearing loss, brain damage or amputations. Sadly the tracker shows that rates of disease and disability are highest in countries where access to services is poor.

A new support service for people affected by meningitis or septicaemia

Meningitis Research Foundation who created the tool are taking action to provide better support and aftercare to everyone affected by meningitis.

The charity will be launching a new digital support service, funded by The National Lottery Community Fund, thanks to National Lottery players, which will enable people who have experienced meningitis to provide help and advice to those more recently affected through a series of videos.

Meningitis Research Foundation is also working with health experts, including the World Health Organization, to create a Global Roadmap to Defeat Meningitis by 2030 and this will include a focus on aftercare and support for people and families affected by meningitis.

Rob Dawson, Director of Support at Meningitis Research Foundation said, “Meningitis is a deadly disease that strikes without warning and for the first time we are seeing just how much it is impacting people around the world. To see that 42 million years of healthy life has been lost is shocking.

“Some people affected tragically lose their lives, and for family and friends left behind, bereavement can mean life will never again be the same. Many people who survive have to adjust to life changing impairments.

“Our new digital support service will connect the meningitis community so that they can more easily share their experiences and learn from each other about overcoming many challenges caused by meningitis impairments or bereavement.”

World Meningitis Day is run by the Confederation of Meningitis Organisations (CoMO) - #AfterMeningitis