Lesley Hart from Hereford is calling for greater awareness about meningitis and describes what the disease has done to her during Meningitis Awareness Week.
Lesley is 40 and she luckily survived meningitis nearly ten years ago but she has been left with many after affects, some of which have worsened as time has gone on.
During Meningitis Awareness Week, Meningitis Research Foundation (MRF) have published a report on the potential consequences of meningitis. The report comes as vaccine coverage in babies under one year old has declined.
MRF is raising awareness of how meningitis costs lives and can lead to disability with a new survey into awareness of health consequences.
The national survey of 2000 adults found that only a minority of the population understand the possible long term consequences of meningitis.
MRF are encouraging people affected by meningitis to share their stories and call for improved support.
Although the majority of the people surveyed in the West Midlands (66%)
know that meningitis can kill, many are unaware that meningitis can leave people with many serious and lifelong health effects.
Just one in ten of people surveyed in the West Midlands (11%) knew deafness was a common after effect of meningitis, despite it being a leading cause of acquired hearing loss. Nine in ten (91% ) also underestimated or didn’t know the number of people that could be left with severe impairments from meningitis.
Nine in ten of people surveyed (93%) underestimated or did not know the full cost of severe meningitis; MRF estimates the costs to the state for a severe case of meningitis to be in the region of £3 to 4.5m over the lifetime of the survivor.
Without effective support, people can struggle. Lesley trusted her instincts and contacted the health services as although she had her usual migraine symptoms, dislike of light, and nausea, usually Lesley’s migraine improved. Lesley was admitted to hospital and at one point her parents were told she had six hours to live.
Lesley said: “‘Meningitis is an infection that I never thought I would get, it tried to do its worst but I beat it.
I truly believe it was my instinct that kept me alive and to go to hospital and the right person was in charge of my care. It is to be feared and it continues to get me down every now and then but then I remember how lucky I am to have survived and can tell my story.”
“My after effects are wide and varied including a brain injury, short term memory problems. I can struggle with holding information and I have tinnitus. I have nerve damage and I don’t feel hunger or thirst. I struggle to keep my feet warm. My skin grows funny on my feet and so have deep tissue dermatitis.”
“When I was discharged I did not receive aftercare automatically, I have had to fight for every single appointment. Once referred to the brain injury team though they were amazing. It was great that somebody, finally listened to me.”
During MRF’s Meningitis Awareness Week the charity is highlighting how people can be affected by the disease. CEO of MRF, Vinny Smith said: “While many are aware that meningitis costs lives, fewer people know about the damage the disease can do to people’s long term health and their future. The cost to people can be immense, and sadly some never fully recover, so the right support is essential.”
“MRF is here for everyone affected by meningitis. We’re calling for ongoing support from specialist care services, although we know some people receive excellent post-meningitis care, we want that help to be available to all. MRF-funded research has shown how important effective aftercare is to quality of life, that’s why we have a free support services. Those who contact our support team tell us it is vital for their recovery and helps them feel less isolated.”
“We are also working with the World Health Organization and partners to finalise the first ever global roadmap to defeat the disease, and improve support for people who have been affected.”
MRF also asked supporters about their views on the specialist aftercare they had received. Out of 184 individuals who responded, 64% felt dissatisfied or very dissatisfied with assessment for long-term effects of meningitis; 61% felt dissatisfied or very dissatisfied with information they were given on long term effects of meningitis and 68% were dissatisfied or very dissatisfied about their post-discharge recovery review.
Download the free report or donate to help fund MRF’s support services, research and campaigning by visiting meningitis.org