Stronger aftercare for adult meningitis patients urgently needed reveals national survey results.

Three quarters (74%) of adults who have experienced meningitis in the last five years still suffer with its after-effects and 94% experienced difficulties with some aspects of their lives because of meningitis according to a new survey launched today at the House of Commons.

The survey was a collaboration between charity Meningitis Now and Picker, a leading international health and social care research charity, who carry out research and evaluations to understand and improve individuals’ needs and their experiences of care. It explored the experiences and post-treatment care of adults aged 16 and over following a stay in hospital for meningitis in the last 5 years.

In a press release, Dr Tom Nutt, Meningitis Now CEO, says, “This survey mirrors what Meningitis Now has understood anecdotally for years – that critical care for meningitis is often very good in this country, but the aftercare needs significant improvement.

“Having faced and overcome terrifying diagnoses of meningitis, people need clear information and support to manage the challenges of living with after-effects.

“Without specialist support, or even basic information about how to manage their recovery, meningitis patients are being cast adrift. This not only impacts the person who has experienced meningitis, but their friends and family too. Meningitis doesn’t end after discharge from hospital, and the impact of the disease can be devastating and long-lasting.

“Meningitis Now has been responding to gaps in aftercare since our inception, and we continue to support anyone affected by meningitis by providing emotional, practical and financial support through a range of support services.

Key findings from the report include:

• 89% of respondents received no information or not enough before leaving hospital
• 71% of respondents were not directed to any support services but would have liked this.
• 86% of respondents did not receive any information or helpful information about what to expect when leaving hospital.
• Less than half of respondents were offered a follow up with either a GP or hospital doctor post discharge. A quarter of respondents had to arrange this themselves.
• Only 15% of respondents had been given helpful information about meningitis from healthcare staff.

The survey aims align with the meningitis strategy of the World Health Organization (WHO), a global roadmap to defeating meningitis through five pillars, one of which focusses on improving aftercare and support for patients. Other areas explored in the survey 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.

In response to the concerning results, Meningitis Now is calling for action. Specifically, the charity is seeking:

• Standardised, accessible information and signposting about all relevant services and support to be given to meningitis patients on hospital discharge.
• Better training for front-line NHS staff and GPs in meningitis after-effects, realistic recovery times and services that help people living with the impact of meningitis.
• For best practice in aftercare and support to be reflected in NICE Guidelines to ensure there is consistency in care across the UK.

Harriet Hay, Senior Research Associate at Picker, said: “The aim of this survey was to better understand people’s experiences of meningitis and provide evidence to inform and improve aftercare and support provision in the UK. This report shows beyond a doubt that follow up and aftercare for adults who have experienced meningitis is often inadequate. With these results, there is a powerful opportunity to listen, change future practice, and improve experiences of discharge from hospital, after-care, and support”