If you’ve been in hospital with either bacterial or viral meningitis over the last five years and if you were 16 years of age or older at the time, we’d like to hear from you. Please click below to take a survey to improve Meningitis care and treatment.
One of the myths of meningitis is that it’s a disease that only affects babies and young children. In fact, meningitis can strike anyone at any time and around half of all cases of meningococcal disease occur in adults. It can kill in hours, have lifelong implications for those who do survive, and have serious health, social and economic consequences.
And it’s not just meningococcal disease. Adults also experience meningitis caused by other organisms.
Despite significant progress in recent years, meningitis still strikes fear into the hearts of many. It develops rapidly, leaving someone with little time to seek the treatment they need to survive.
For those who do survive, they live with the consequences of meningitis, including the need for the right support and aftercare to cope with physical and intellectual disabilities. Many people do not realise that meningitis and neonatal sepsis are the world’s leading cause of severe intellectual disability, and that meningitis is the leading infectious cause of severe hearing loss.
That’s why this World Meningitis Day (5 October) – Race to Defeat Meningitis –at Picker, we’re pleased to be working with UK charity Meningitis Now on an important national survey, which we hope will help to improve the aftercare and support provided to people who have been diagnosed with meningitis and have spent time in hospital. The insights from the results will also work to ensure that people who experience meningitis receive care that is responsive to their needs and preferences, which is an essential pillar of person centred care
We’re looking for you to join us in the race to defeat meningitis by helping us understand your experiences of meningitis and your support needs following it.
Those who have been in hospital with either bacterial or viral meningitis over the last five years and were 16 years of age or older at the time, can take part. If that’s you and you’re happy to help, please click here https://bit.ly/meningitissurvey2022 to find out more.
Bev Corbett, Meningitis Now’s Director of Information and Support, said: “This is a wonderful opportunity to influence future practice and have your say on what would improve your experience of discharge from hospital, after-care, and support.
“We know that follow up and aftercare for adults who have experienced meningitis is often inadequate. Therefore, this survey will help us better understand people’s experiences and provide evidence to inform and improve aftercare and support provision in the UK.
“If you’re able to help us by taking part we’d love to hear from you about your experiences.”
Bev added: “In particular the survey will aim to understand experiences of the hospital discharge process and information provision, along with the longer-term information and support needs of adults with a recent experience of meningitis.
“The aim is to highlight gaps, such as the lack of follow-up care, and provide evidence to inform support provision.
“These aims are sympathetic with the meningitis strategy of the World Health Organization (WHO), where one of the five pillars focusses on improving aftercare and support for patients.”
Other areas which will be explored include the emotional and physiological impact of meningitis, such as long-term tiredness and fatigue; the scale of the issue and whether a lack of follow-up and support provision is universal across the UK or if there is variation depending on where you live?
World Meningitis Day takes place each year in October and is an initiative of the Confederation of Meningitis Organisations (CoMO). It brings together people from all over the world to highlight the need to raise awareness of meningitis, its signs and symptoms, the vaccines that are available, and that it is an infection that needs global attention and effort to be defeated.
Join your voice with ours so we can defeat a terrible, yet largely vaccine-preventable infection. Join us this World Meningitis Day in the race to defeat meningitis.
Find out more about meningitis and the work of Meningitis Now on its website at www.MeningitisNow.org
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