New research reveals the true impact of meningitis, Meningitis Trust, United Kingdom

The Meningitis Trust is an inaugural member of the Confederation of Meningitis Organisations

New research has revealed that children who survive meningococcal disease (a type of meningitis) are:

  • five times more likely to have speech, communication and hearing problems
  • four times more likely to have mental health problems
  • six times more likely to have epilepsy
  • significantly more likely to have memory and IQ problems

The shocking findings have prompted the Meningitis Trust to launch a campaign to fight for the rights of the forgotten children who are currently suffering with the impact of the disease in the UK right now.

The ‘Meningitis Changes Futures’ campaign is calling for automatic assessments and appropriate educational support to become routine for every child who survives meningitis.
   
1 in 4 who survive will suffer some form of long-term after-effect. Many children may appear to have made a full recovery but are often left with psychological and neurological problems that may go unrecognised, as revealed by the research. These children can be left struggling at school and deprived of the educational support they need.

Sue Davie, Chief Executive of the Meningitis Trust, said: “Parents who have had to watch their child fight for their life when meningitis has struck now have to fight for their child to get the best chance in life.  Recognition of the needs of these children should be a right, not a lottery”.

Alex, 18, was bullied, rejected and taunted because he was different. As well as the physical after-effects, meningitis left its mark on his education. After months in hospital, he returned to school where he struggled to keep up. Teachers thought he was hard work in the class and would often ask other pupils to do the writing for him. 

He was promised support, this didn’t happen. The teachers were told they had to write down homework for Alex as the damaged caused by meningitis meant he could no longer remember what they told him. They hardly ever did this.

He was diagnosed as depressed and as a result his education was lost to meningitis. It’s too late for Alex, but the Trust is determined through its ‘Meningitis Changes Futures’ campaign that it will fight for every child affected so they aren’t forgotten as well.

Read more about Alex's story here.

People are being urged to sign the Meningitis Trust education petition today at www.meningitischangesfutures.co.uk.

About the MOSAIC* research project

In 2008, the Meningitis Trust commissioned a research project to investigate the true impact of meningococcal group B disease in children under 16 years. The study was undertaken by University College London/Institute of Child Health and is awaiting publication. This study (MOSAIC) aimed to measure the physical, psychological, social and economic burden of the disease. It has provided data that we can use to influence the care that children and their families receive following their experience of meningitis. The data has been used to support the introduction of future meningococcal group B vaccines.

The findings of the study have confirmed that meningococcal group B disease is associated with significant burden in survivors and their families. The following points highlight the need for regular follow-up and assessment of any child who has had this disease:

  • IQ - test score significantly reduced.
  • Memory - significant deficits in many aspects of memory.
  • Executive function - significantly poorer, resulting in reduced ability to organise and plan ahead.
  • Mental health disorder - four times more likely
  • Special Educational Needs (SEN) - significantly more likely to need additional educational support

More information

For more information about the Meningitis Trust and the Meningitis Changes Futures campaign visit the Meningitis Trust website.