Meningitis Now staff member Andy Hopkinson

Survey hopes to bring improvements to meningitis aftercare and support

Andy Hopkinson | 21st September 2022

Can you help us understand the experiences and support needs of adults after meningitis?

Picker Institute Meningitis research project

We’re after your help please to be part of 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.

We’ve teamed up with the top research body the Picker Institute for the second phase of the survey, which starts this week and runs for six weeks. 

We hope the findings will also inform and help to improve our own support and information services for individuals and families.

Opportunity to influence future practice

Bev Corbett, our 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 are really pleased to be working with the Picker Institute on this important national survey. 

“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.”

Either bacterial or viral meningitis

Those aged 16 or over who have been in hospital with either bacterial or viral meningitis over the last five years can take part. If that’s you and you’re happy to help please click here to find out more.

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.”

Emotional and physiological impact

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? 

Visit to find out more. We’ll feedback on the survey findings when the data has been analysed.

Don’t forget our Support team is here for you if you need them, Find out more or contact our nurse-led Helpline on 0808 80 10 388 or email

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