Understanding the Care Experiences and Support Needs of UK Adults Treated in Hospital for Meningitis
Meningitis can have a devastating and long-lasting impact on the lives of those who experience it – physically, mentally, socially, and financially. Despite this, adults treated in hospital for meningitis often face limited support once discharged. A new study published in the Patient Experience Journal explores these gaps in care and the unmet needs of people recovering from meningitis in the UK.
The research, carried out by Picker in collaboration with Meningitis Now, gathered insights from adults who had recently been treated for bacterial or viral meningitis. Using a mixed-methods approach, including in-depth interviews, an asynchronous focus group, and a national online survey, the study reveals wide variation in the information, aftercare, and support provided after hospital discharge.
Key findings include:
- Only 12% of respondents received helpful information about recovery before leaving hospital, while 80% said they would have liked this.
- 74% reported ongoing after-effects, most commonly fatigue, brain fog, and headaches.
- 71% were not directed to any support services, despite wanting help.
- Just 38% said they were always treated with empathy and understanding by care providers.
- Many respondents turned to charities or online platforms in the absence of formal support.
These findings highlight the need for more structured, person centred follow-up care, with improved information provision and better awareness among health professionals, employers, and families.
The study has already informed updates to NICE guidelines on meningitis aftercare and presents a compelling case for more coordinated, empathetic, and holistic support for adults recovering from this life-changing condition.
