‘Counting the Cost’ – Meningitis Awareness Week (15 – 21 September)

Guest Blog by Chris Head, Chief Executive, Meningitis Research Foundation

Meningitis kills and seriously disables more young children in the UK and Ireland than any other disease. Young adults are the second highest at risk group but people of all age groups can be affected as 17,500 members of Meningitis Research Foundation can testify. Globally meningitis kills an estimated 1,000 people every single day.

We estimate 3,400 people are affected by meningitis and septicaemia in the UK and Ireland every year. One in ten dies and a quarter of all survivors are left with life altering disabilities ranging from deafness and brain damage to amputations.

And our Counting the Cost study concluded the lifetime financial cost to society of someone seriously disabled by just one form of the disease, MenB, is up to £4.5m – and that’s not including any litigation costs which may also be paid.

It’s our charity’s annual Meningitis Awareness Week (15 – 21 September) and 215 families have signed up to share their stories in the media.  You can also read many more personal stories in our Book of Experience online www.meningitis.org

Robbie's new legs 2014Robbie Jones, who celebrates his 8th birthday during Meningitis Awareness Week,  and his mum Jill are among those sharing their story. He was just 21 months old when he contracted meningitis – losing both his legs and all his fingertips.  Since then he has grown in and out of numerous legs. His latest pair features his favourite football club – Manchester United. He is also learning to swim, and the joy that the freedom water brings him is clear to see. Jill says: “ We had heard about meningitis but never thought it would happen to our family and had never seen the effects it could have on survivors.”

But awareness is not enough. We believe the first line of protection is vaccination and everyone should be immunised with all available meningitis vaccines. To this aim we have invested £17.5m in 140 international and UK based meningitis research projects to support finding solutions for this devastating disease.

We have been marking our 25th anniversary this year and in that time we have seen meningitis and septicaemia cases halve.  Improved protection has played a major role; vaccines for Hib, MenC and 13 strains of pneumococcal meningitis and septicaemia are all now freely available and an EU licensed vaccine for MenB is available privately and has been recommended for use in babies in the UK by the Joint Committee on Vaccination and Immunisation (JCVI).

However the question of whether adolescents will be included has yet to be decided. The UK Government has agreed to commission a very large study to show whether vaccinating teenagers could prevent the spread of the illness.  This indirect protection for the whole population has been key to the success of MenC and other meningitis vaccines which is why we are urging the Government to ensure this study happens without delay.

And research into the effectiveness of the MenC vaccine is why the UK Government is currently running a MenC booster campaign for those starting university this year. Vaccine protection was proved to wane over time and with MenC cases spreading rapidly through halls of residence, the Government decided to act with a catch-up campaign for students up to age 25 and all those who have never been vaccinated for MenC. The booster campaign augments the dose now given to teenage children at 14 years of age and will run yearly until 2017.

This charity has been supporting the MenC booster campaign by freely distributing posters and symptoms cards to universities, colleges and secondary schools.   It’s is just part of our year-round symptom awareness raising work.

We encourage everyone to recognise the symptoms and act fast to save lives. Other initiatives include a Meningitis Baby Watch card distributed to around one third of all new parents by local health authorities, officially endorsed guidelines for medical professionals, handy sized symptoms cards, informative leaflets and a symptoms video presented by our Patron, the popular TV GP, Dr Hilary Jones. Our symptoms information online receives over 1m visits a year.

But we cannot be complacent. Great strides have been made but that doesn’t mean meningitis has gone away.   We believe protection is the ultimate answer to meningitis.  We welcome the JCVI’s recommendation for a MenB vaccine at 2,4 and 12 months and we will play an active role in making parents and carers aware,  but we want to see an adolescent catch-up programmes for older children and Government commitment to prevent rarer forms of meningitis too.

It’s been a roller coaster ride for 25 years but there is still a lot more to do.

For symptoms information and much more, visit www.meningitis.org

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