Meningitis patients left struggling from lack of aftercare

Many people struggle to recover their lives after meningitis – including trying to stay in work – because they fail to receive adequate support once discharged from hospital, a report has warned.

The report, commissioned by the charity Meningitis Now, has found almost all – 94% – of people who contract meningitis find it negatively affects their home, work and social lives. However, three-quarters of respondents said they were not signposted to support services before leaving hospital.

Headaches, brain fog, fatigue and memory loss were the most reported after-effects, with many respondents saying they were living with two or more effects.

The vast majority said they did not receive helpful information on leaving hospital and were left to manage the effects of meningitis alone. Less than half of respondents were offered a follow-up appointment with either a GP or hospital doctor post-discharge.

The report was conducted by the health and social care research charity Picker, and surveyed 228 people with a recent meningitis experience in the UK. Key findings from the report include:

• Nearly nine out of 10 (89%) of respondents received no information or not enough before leaving hospital.
• Nearly three-quarters (71%) said they were not directed to any support services but would have liked this.
• Similarly, three-quarters (74%) reported they “definitely” were still suffering with after-effects and almost everyone (94%) had experienced difficulties with some aspects of their lives because of meningitis.
• Eight out of 10 (86%) did not receive any information or helpful information about what to expect when leaving hospital.
• Less than half were offered a follow-up appointment with either a GP or hospital doctor post-discharge. A quarter had to arrange this themselves.
• Only 15% said they had been given helpful information about meningitis from healthcare staff.
• Just a fifth (21%) were offered psychological support yet as many as two-thirds (68%) would have liked this type of support.
• Nearly all (98%) felt improvements could have been made to their overall experience of meningitis aftercare and support.

One respondent told Picker: “More people need to be aware of the impact of meningitis and there needs to be more services available for support. It is viewed as a one-off illness when in fact in many cases it is life-changing and long term.”

Another said: “Consultants and doctors need to know more about meningitis. People are under the assumption that recovery is easy but it’s a long road. You have to fight all the way to be seen.”

Dr Tom Nutt, Meningitis Now CEO, said: “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,” he added.

More than half of the survey respondents said they wanted better information for their families, more realistic expectations of recovery times, more referrals to support, more meningitis-related information and their GP having access to more information.

One respondent said: “I wish the full extent of the condition and recovery had been explained to me, as misinformation from doctors was a huge factor in me trying to rush back to normal life.”

The charity is calling for standardised, accessible information and signposting about all relevant services and support to be given to meningitis patients on hospital discharge.

It is also recommending that better training be given to frontline NHS staff and GPs in meningitis after-effects, realistic recovery times and services that help people living with the impact of meningitis.

Finally, it is calling for best practice in aftercare and support to be reflected in National Institute for Health and Care Excellent guidelines to ensure there is consistency in care across the UK.