Meningitis Now staff member Andy Hopkinson

Understanding experiences and support needs of adults after meningitis

Andy Hopkinson | 21st July 2022

Have you had a hospital stay for meningitis in the last five years? If so, we need your help please

Survey to understand experiences and support needs of adults with meningitis

If you’re aged 16 or over and have been treated in hospital for either bacterial or viral meningitis within the last five years, we’d like to speak to you about your experiences of care and support.

We’ve commissioned a survey with the Picker Institute, the international health and social care charity, who carry out research to understand individuals’ needs and their experiences of care. The survey will focus on the recovery and outcomes of UK adults aged 16 and over leaving hospital after a recent experience of meningitis, either viral or bacterial

In particular, it 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. 

Highlight gaps

The aim is to highlight gaps, such as the lack of follow-up care, and provide evidence to inform support provision. The aims are consistent with the new meningitis strategy of the World Health Organization (WHO), where one of their five pillars focusses on improving aftercare and support for patients. 

Other areas which we wish to explore include: 

  • The scale of the issue – is the lack of follow-up and support provision universal across the UK or is there variation depending on where you live? 
  • The emotional and physiological impact of meningitis, such as long-term tiredness and fatigue

Find out more

If you’re able and willing to take part in a text-based online focus group, please visit to find out more information. This focus group will inform the development of a national survey in the early autumn.

Those taking part will receive a £25 Love2Shop or Amazon gift voucher upon completion of the focus group, as a thank you.

Bev Corbett, our Director of Information and Support, said: “This will be the third time we’ve worked with the Picker Institute on surveys to inform and improve aftercare and support. The first explored the experiences of patients who had experienced viral meningitis and the second sought feedback from adolescents and young people about post-meningitis support.

“This work was originally planned pre-Covid-19, so it’s good that we’re now in a position to pick it up again, as we look to be recognised as a centre of expertise for aftercare and support in the coming years.

“If you’re able to help us by taking part we’d love to hear from you about your experiences.”

Visit to find out more and get involved.

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