But we didn’t stop there.
Research was conducted with those who had either contracted meningitis themselves, or who were close to someone who had. Through this research, our existing awareness and conversations with various people, including our young adult volunteers, Believe & Achieve was developed.
We have developed our knowledge and understand that there are positives and negatives for those who have experienced the disease, either personally or through someone close to them.
We’ve met those whose lives have taken on a meaning that wasn’t there before, who have become fearless taking on challenges they’d have never thought possible, and who have a passion and want to embrace what this change means.
But we also know that this isn’t everyone’s experience.
We have met those whose grief is overwhelming, who struggle in school because their needs aren’t being supported, who face daily problems that affect their emotional health as well as future opportunities and for whom life is painful - physically and emotionally.
Here are some figures from research findings:
- Young people who have had the most common type of bacterial meningitis are:
- Five times more likely to have a significant hearing impairment and five times more likely to have speech and communication problems.
- Significantly more likely to have deficits across all aspects of memory and have problems with organisation and planning.
- 1 in 5 of these children and young people will have anxiety and behavioural disorders.
- 1 in 2 of people impacted by meningitis and in education (or planning to be), have seen their education disrupted. Many have missed large chunks of school or university, or left education or employment altogether.
- 2 in 3 of people who were in work (or were planning to be) have seen their working lives disrupted in some way, negatively impacting on their future life chances, independence, quality of life, financial independence and sense of control over their life and future.
- 3 in 4 people said meningitis had affected them emotionally.
- Other after-effects of meningitis include headaches, loss of limbs, chronic fatigue, eyesight loss or impairment, epilepsy and balance problems or dizziness, as well as significant negative impacts on relationships and coping with everyday life.
(Research from Mosaic study (2012), Picker Institute (2013/14) and Meningitis and Me (2015))
Life after meningitis
Those impacted by meningitis may have matured beyond age, be competent and in control of their lives, or alternatively not be in control at all, grieving or have experienced trauma. They may have experienced negative effects on their education where they’ve missed out on key lessons, got into trouble or didn’t achieve qualifications. They may have felt loss in other ways too.
This is what people who have experienced meningitis had to say:
“I can't think on the spot at all, I forget words in the middle of my sentences and either stutter on them or try to describe the word. I have trouble answering simple questions sometimes and I get angry for no reason. I get really nervous and embarrassed when talking to people just in case I forget what I'm saying or mess up on a word, so I've been isolating myself recently.” - Freya
“It has been a really difficult couple of years for me, my sister and my daughters living our lives at such a young age without our parents or grandparents and now we are trying to rebuild our lives." - Becca
"Growing up I noticed I would get sick really often - a lot more than my friends, and this meant I had to take a lot of time off school." - Michelle
"I worry every day if I'll be like this forever and wonder if it's worth struggling on. It makes me sad that most times I go out and have a nice day like I used to, I'm bed-bound from exhaustion for a day after." - Freya