Meningitis aftercare report

Understanding

the experiences and support needs of adults with meningitis

A report of a survey of UK adults treated in hospital for meningitis in the last five years

April 2023

Bec Aeddi and Harriet Hay

picker.org

Picker

Picker is a leading international health and social care charity. We carry out research to understand individuals’ needs and their experiences of care. We are here to:

Influence policy and practice so that health and social care systems are always centred around people’s needs and preferences.

Inspire the delivery of the highest quality care, developing tools and services which enable all experiences to be better understood.

Empower those working in health and social care to improve experiences by effectively measuring, and acting upon, people’s feedback.

© Picker 2023

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Foreword

As a centre of expertise for aftercare and support in the UK, with over 35 years of experience, Meningitis Now know how devastating meningitis can be. Whatever the outcome, the physical and psychological impact of the disease is significant, with many people experiencing life changing after-effects and physical disabilities. Meningitis can change lives forever. People tell us that they leave hospital with little in the way of follow up and after-care. For those who are left with serious and devastating after-effects, navigating recovery can be complex, difficult, and ongoing.

This important national survey focuses on the recovery and outcomes of UK adults aged 16 and over leaving hospital after a recent experience of meningitis (viral and bacterial). In particular, the survey aims to understand people’s experiences of the hospital discharge process, including information provision, along with longer-term support needs. The survey also aims to highlight gaps in care and provide evidence to inform improvements to aftercare and support provision.

These aims are consistent with the World Health Organization (WHO) global strategy and plan to defeat meningitis by 2030, where one of their five pillars focusses on improving aftercare and support for people impacted by the disease.

We are delighted to have worked with Picker to deepen our knowledge and understanding of the aftercare and support needs of adults in the UK. We will use the results of this survey to drive the delivery of the highest quality after-care and support for all those who have experienced meningitis in the UK. This is the third successful study that we have carried out with Picker. The first explored the experiences of people following viral meningitis, and the second survey sought feedback from adolescents and young people about post-meningitis support.

We are grateful to everyone at Picker who has been involved in the development and implementation of the survey and this subsequent report. Our thanks go to all the individuals who took time to complete the survey and provide us with such valuable insight. This study would not have been possible without your support.

It is important to acknowledge that the COVID-19 pandemic has impacted the disease landscape, where the number of cases of meningitis and meningococcal disease decreased in recent years due to social distancing and other measures. Whilst the incidence of the disease is beginning to rise again, low numbers made recruitment into the study challenging.

Sincerely,

Bev Corbett Director of Information and Support at Meningitis Now

Executive Summary

Meningitis Now is a UK charity which focusses on supporting those affected by meningitis. A collaboration between Meningitis Now and Picker has explored the experiences and posttreatment care of adults aged 16 and over following a stay in hospital for meningitis in the last 5 years. A survey of UK adults ran from 15th September 2022 to 28th February 2023 (24 weeks) and received a total of 228 responses.

The survey focused on hospital discharge, recovery, and information provision and support during aftercare. Regardless of the cause of meningitis, analysis of the findings has highlighted gaps in follow-up care and support for adults with a recent experience of meningitis. Meningitis often results in people suffering from ongoing and multifaceted aftereffects, which impact many aspects of their lives. It is evident that many respondents do not feel they received enough information, nor were they directed to appropriate support services, despite reporting that they would have liked both.

The survey identified room for improvement in the following areas:

Improving awareness: Greater information provision at discharge for people who have suffered from meningitis and their family, friends and employers, would help to reduce the negative impact of meningitis on people’s social and financial wellbeing.

High quality information for staff: To support high quality aftercare, interventions such as discharge checklists and training resources (e.g. videos, leaflets) should be readily accessible for healthcare staff, in particular for GPs, to manage patient expectations and signpost to relevant information and support.

National guidelines: Meningitis Now should use the findings from this report to inform the national standardised guidelines for bacterial meningitis and meningococcal disease that are currently under development, and to advise on aftercare and support protocols for other causes of meningitis.

Regional differences: Further research is required to explore the regional differences in experiences of information and support provision for people who have suffered from meningitis in the UK

Holistic support: People who have suffered from meningitis should have access to holistic care and support to address potentially complex and multifaceted needs

Accessible care: Accessing care should be straightforward, and referrals should be timely and sympathetic. Healthcare staff should be proactive in ensuring the needs of the individual are explored.

Tailored support packages: Aftercare support packages should include both psychological and recovery support services, as appropriate to the individual. This should include directing people who have suffered from meningitis to charities at the point of discharge.

Further research: it is evident that more research is needed to explore aftercare information and support provision for people who have suffered from meningitis. Potential areas for further exploration include assessing the content and coverage of information and support; education and training gaps within health and social care professionals; and reasons for disparities in support and aftercare by different groups such as gender, age, region and cause of meningitis.

Background

Meningitis Now is an independent charity dedicated to building ‘a future where no one in the UK loses their life to meningitis and everyone affected gets the support they need to rebuild their lives’.

Picker is 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.

Meningitis Now collaborated with Picker to understand the support needs and care experiences of UK adults (aged 16 and over) leaving hospital after a recent experience of meningitis (viral, bacterial or another cause). The project aimed to explore experiences of the hospital discharge process and information provision, along with longer-term information and support needs of adults with a recent experience of meningitis.

This work aligns with the meningitis strategy of the World Health Organization (WHO)1 , where one of their five pillars focusses on improving aftercare and support for patients.

This report summarises the findings from a survey of adults with a recent experience of meningitis carried out by Picker, on behalf of Meningitis Now. It presents the results from the 32-question survey, and data from all UK respondents, unless otherwise stated. Findings from the survey are supplemented with frequency tables and sub-group comparisons (provided as separate documents)

1 WHO. (2021). Defeating meningitis by 2030: a global road map. Defeating meningitis by 2030: a global road map (who.int) accessed April 2023

Methodology

The aim of the study was to develop a questionnaire to help explore the experiences and support needs of the UK adult population with a recent experience of meningitis. The first qualitative stage informed the content of the questionnaire, followed by the development and implementation of a quantitative survey.

Qualitative Stage – Survey Development

The survey content was informed by qualitative research involving twenty participants: Five individual depth interviews, conducted remotely via Microsoft Teams.

An online asynchronous focus group with fifteen participants, held on Facebook.

Recruitment

To facilitate recruitment into the qualitative research, Meningitis Now and Picker posted recruitment materials on their social media channels, which included Facebook, LinkedIn, and Twitter. A £25 gift voucher was offered to all participants in return for their participation. A screening questionnaire was used to assess the eligibility of those interested in taking part. People were eligible if they: Were aged 16 or older

Had a UK hospital stay for bacterial or viral meningitis within the last five years, and Lived in the UK.

Participants were screened out if they did not meet all these criteria. The screening questionnaire also asked for people’s age group, ethnic background and gender to ensure we invited a diverse group of people with a recent experience of meningitis to contribute. It also asked for their preferred participation method (focus group or interview).

Selected participants were sent a consent form and an information sheet to provide further information and what to expect should they take part. If they agreed to participate, they were asked to provide informed consent by completing the consent form and a researcher contacted them to arrange next steps. Participants were reminded that they could withdraw at any time and did not have to answer any questions that they were not comfortable with. As well as being detailed in the consent form, this information was reiterated at the beginning of the focus group and of each interview.

Focus group

The focus group lasted for 14 days. Two questions, as determined by a topic guide, were posted per week, with three days in between each posting. This scheduling was chosen to allow participants to fit participation in around their other commitments. Three of the four questions posted in the group were discussion-based; after the researcher posted the question in the group, participants were encouraged to reply to it by commenting on it, and to reply to other participants’ comments.

It was communicated to participants prior to the focus group that these questions should take an average of 20 minutes each to answer.

The final question was a poll, with response options based on participants’ answers to the previous three discussion questions.

As the group was held on Facebook – an essentially public forum used by nearly two billion people worldwide – several measures were employed to protect participants’ privacy:

- Using Facebook’s terminology, the group was made ‘private’ and ‘hidden’. The meant that the group’s content could not be seen by anyone outside of the group, and the group could not be searched for by non-group members.

- Participants were only added as group members once they had either privatised their existing profiles or created a new Facebook account with no identifying information on it.

- Each question and its responses were deleted after 3 days, to reduce the risk of data ‘leaking’ outside of the group.

- Clear and thorough communication to participants around the expectations associated with their engagement in the research process, including the requirement that their involvement in the study was contingent upon refraining from sharing any information discussed in the group outside of the group.

- Ensuring data was stored securely and sufficiently anonymised to comply with ethical guidelines, Picker’s standard working practices, and UK GDPR regulations.

Interviews

Each of the five semi-structured interviews was scheduled for an hour. A topic guide was prepared in advance and was referred to by the researcher throughout each interview to guide the conversation but was not distributed to participants. After consent was sought, participants were reminded that they were not required to answer any questions that they were not comfortable with, and that they were free to end the interview at any time without explanation.

Analysis

The findings from the qualitative stage were analysed for themes relating to the meningitis information, care, and support experiences of the participants. Insights from this stage informed the structure and content of the questionnaire and were particularly useful in ensuring that response options were relevant to survey respondents.

Quantitative Stage – Questionnaire

The findings from the qualitative stage were used in conjunction with Picker’s survey development experience, Meningitis Now’s understanding of the needs of those who have suffered from meningitis, and the Picker Principles of Person Centred Care2 to form a 32question survey:

4 screening questions

15 closed, single choice questions

7 closed, select all that apply questions

2 open-ended free text questions

3 demographic questions

1 further question asked respondents which month and year they had been admitted to hospital, to allow for a consideration of how data may have been influenced by the COVID-19 pandemic (March 2020 being the beginning of the first lockdown).

The questions asked in the survey aimed to provide a clear, holistic picture of the demand for and provision of meningitis care and support for adults in the UK, following their hospital stay.

The survey was hosted and made available to participants online via the survey platform Qualtrics and ran from 15th September 2022 to 28th February 2023 (24 weeks) No questions forced a response beyond the screening questions, and routing was used to ensure that respondents only saw questions that were relevant to them.

Eligibility

Respondents were eligible to complete the survey if they had been treated in a UK hospital for meningitis within the last five years, were over the age of 16, and lived in the UK. Screening questions were added at the beginning of the survey to ensure that respondents who did not meet the eligibility criteria were screened out. Respondents who had been admitted to hospital between two and five years ago were not asked about their experiences of being discharged from hospital, to ensure that issues with recall would not affect the reliability of the data. Instead, these respondents were asked only the questions regarding their more recent experiences of information and support within the last 5 years (at the point of responding to the survey, which was in field from 15th September 2022 to 28th February 2023, see above), as well as the freetext and demographic questions. All respondents were asked whether their responses could be used if they closed the questionnaire before finishing the survey. Two respondents who did not finish the survey declined this request, and so have not been included in this report.

Advertising

The survey was publicised on social media by both Picker and Meningitis Now, and targeted advertising was also used on Google, Twitter, LinkedIn and Facebook to maximise responses. Meningitis Now and Picker each posted blogs on their websites which explained the purpose of the survey, details about eligibility to participate and provided a hyperlink to take part. Meningitis Now’s existing mailing list and newsletter were utilised for further survey publicity.

For further details about survey publicity activity, please see Appendix 1

Ethics

The project underwent internal review, and it was concluded that ethical approval was not required for this project in line with the Health Research Authority guidelines. The project does not involve primary research with human participants and raises no material ethical issues.

Analysis of survey data

Data were downloaded from Qualtrics and cleaned, including steps to remove any participants who were ineligible to take part, or had not agreed for their data to be used if they had not fully completed the survey (see ‘Eligibility’ section above for details). Frequency tables for each survey question were generated, showing counts and percentages for each response option. Crosstabulations were also produced. Suppression rules were applied to the frequency tables and crosstabulations: a suppression threshold of 11 was used so where the number of responses (overall or by subgroup) were less than 11, data are not shown. This was both at an overall level and at a subgroup level.

The freetext comments were downloaded and responses to Q28 (What is the one thing you would change about meningitis aftercare and support in the UK?) were analysed. A researcher read the freetext comments and familiarised themselves with the data, before coding comments into themes.

About the respondents

Another cause of meningitis

Unsure of the cause

*Questions about gender and ethnicity have lower numbers of respondents. This is because they were asked at the end of the survey, by which point some respondents had closed the survey or simply chose not to answer.

Region

n=228

Northern Ireland

West Midlands (England)

East of England

London

North East (England)

Wales

East Midlands (England)

South West (England)

Scotland

North West (England)

Ethnicity n=206*

English / Welsh / Scottish / Northern Irish / British Irish

Any other White background

Any other Asian background

Any other Mixed / multiple ethnic background

African

White and Black Caribbean

White and Black African

White and Asian

Pakistani

Any other ethnic group

90% 2% 2% 1% 1% 1% <1% <1% <1% <1% <1%

Survey results

The information shown in the previous ‘About the respondents’ section details the demographics and characteristics of survey respondents. Almost three quarters of respondents answering the gender question were women (73%, n=152) and 27% (n=55) were men, and the majority of respondents described their ethnicity as White (90%, n=185)

Over half of respondents had suffered from bacterial meningitis (58%, n=132) compared with viral meningitis (35%, n=80), the remaining 7% being attributed to another cause or being unsure of the cause (Figure 1). A higher percentage of women responding to the survey contracted viral meningitis (35%, n=53) than men (29%, n=16) – see Figure 1. In terms of age group, the lowest age group (16-24 years: 62%, n=21) and the higher age groups (4574 years: 73%, n=74) were more likely to have suffered from bacterial meningitis than other age groups.

Have you ever been admitted to hospital in the UK for meningitis?

(If you have been admitted more than once, please think about the most recent time) - by gender

N.B. Not shown: 0 responses from 0 respondents who answered ‘Non-binary’, ‘A

not listed here’, ‘Unsure how to

Question 30. Also not shown: 7 respondents who answered that they had ‘another cause of meningitis’ and 9 respondents who said they were unsure of the cause.

Over half of those responding to the survey (53%, n=121) had been in hospital between 2-5 years ago, with 32% (n=73) between 3 months and 2 years ago and the remaining 15% (n=34) within the last 3 months of completing the survey.

It is difficult to compare survey respondent characteristics to the wider population of people who have had meningitis, as there are no available public datasets for all causes of meningitis. Cases of meningococcal disease in England – the most common form of bacterial meningitis – are published by the UK Health Security Agency (UKHSA). These are not broken down by gender. However, the dataset shows that in the years between 20182022, 819 people aged 15 or over contracted meningococcal disease in England (3) In their strategy, Meningitis Now estimates that before the COVID-19 outbreak, as many as 2,000 individuals a year contracted bacterial meningitis, with a further 6,000 contracting viral meningitis (4). As both the UKHSA and Meningitis Now have noted, social distancing

Figure 1 (Question 3, by gender): Asked to all respondents.

gender

describe myself’, ‘Prefer not to say’ at

measures introduced during the pandemic dramatically reduced the numbers of individuals contracting meningitis from most causes. However, these numbers are again rising (3,4)

This should be kept in mind when interpreting the results, given some of the differences between the two causes of meningitis, and how people experience their aftercare and support needs: both these examples suggest that further investigation and controlling for other contributing and potential confounding factors may be appropriate3

Additional notes about reporting

A grey colour has been used throughout to represent overall figures. Concurrently, responses are split into those from people who have had viral meningitis and those who have suffered bacterial meningitis. Responses from those who had viral meningitis are shown in orange, and responses from respondents who had bacterial meningitis are shown in blue. Breakdown responses from those whose cause of meningitis is either another or not known has not been displayed separately due to the low numbers but included in the overall response data.

Data were analysed by other groups such as age and region. Some charts are available in the Appendices. Full breakdowns are available in a separate excel spreadsheet entitled ‘P101785_Meningitis_Now_Frequency_Tables_For

client_FINAL’

A threshold for suppression of 11 was used – this means that for any questions or groups being compared that achieved under 11 responses, the data will not be displayed. Please be aware that even if the suppression threshold is exceeded, some response numbers are still relatively small and therefore the findings should be interpreted with caution.

Non-response options, such as ‘Don’t know / can’t remember’, are included in the overall response number. The total number of responses may vary between questions, as no questions beyond the screening questions forced a response, and some questions were filtered (i.e. only asked to a subset of respondents).

Questions that allowed additional freetext responses for questions 13, 14, 15, 17, 19, 23, 27 and 32 (‘Other: please state) have been supplied to Meningitis Now in a separate spreadsheet entitled ‘P101785_Meningitis Now Full Dataset_For client_FINAL’.

3 UK Health Security Agency, 2023. Invasive meningococcal disease in England: annual laboratory confirmed reports for epidemiological year 2021 to 2022.

https://www.gov.uk/government/publications/meningococca3l-disease-laboratory-confirmed-cases-inengland-in-2021-to-2022/invasive-meningococcal-disease-in-england-annual-laboratory-confirmedreports-for-epidemiological-year-2021-to-2022

4 Meningitis Now, 2021. Our strategy: Making a difference, every day. https://www.meningitisnow.org/support-us/who-we-are/our-vision-and-mission/our-future-plans/

Hospital stay

Question 4 asked survey respondents how long ago they were admitted to hospital for meningitis.

Question 4: just under half of respondents (47%, n=107) were admitted to hospital for meningitis less than 2 years ago. Fifty-three percent (n=121) of respondents were admitted to hospital between 2 and 5 years ago and these respondents were not asked subsequent questions about their time in hospital, due to potential issues with recall. See Figure 2

When were you admitted to hospital for meningitis?

Question 5: respondents were asked the date they were first admitted to hospital. This question was asked to see if there was the possibility of analysing data by COVID lockdown dates. However, responses were low and regional variation in lockdowns, complex: overall, 103 people responded to this question – 9 of these had been admitted to hospital before 2020 whilst the remaining 94 were after 2020.

The subsequent questions in the ‘Hospital stay’ section (Questions 6-11, inclusive) were only asked to respondents who were admitted to hospital in the last two years. Of the 228 total eligible respondents, 107 were asked questions about their time in hospital.

Question 6: of the respondents who had been admitted to hospital for meningitis within the last two years, 64% (n=65) had stayed for 7 days or more, whereas 36% (n=37) had stayed in hospital for less than 7 days. Those who had suffered from bacterial meningitis were more likely to have spent 7 days or more in hospital (86%, n=51) than those who had had viral meningitis (24%, n=8). See Figure 3.

Figure 2 (Question 4): Asked to all respondents.

How long did you stay in hospital for your meningitis?

Question 7: of the 101 respondents who answered about where they spend time in hospital, 31% (n=31) had spent time on more than one ward. Respondents who had been treated for viral meningitis were less likely to have spent time in an intensive or critical care unit (9%, n=3) than those who had been treated for bacterial meningitis (47% n=27). Conversely, respondents treated for bacterial meningitis were less likely to have stayed on a general ward (38%, n=22) than those treated for viral meningitis (53%, n=18) - see Figure 4.

Where did you spend time in hospital? (Please select all that apply)

Figure 3 (Question 6): Asked to all respondents who had stayed in hospital within the last two years

Figure 4 (Question 7): Asked to all respondents who had stayed in hospital within the last two years.

Leaving hospital

Only respondents who had been admitted to hospital within the last two years for meningitis answered these questions.

Question 8: only 11% (n=11) of respondents said they were given enough information to prepare them for their return home before leaving hospital (see Figure 5). Just under two thirds of respondents (60%, n=61) reported that they and their household had not been given any information but would have liked this. Those who had suffered from viral meningitis were slightly more likely to agree that they were not given any information but would have liked this (62%, n=34) than those who had suffered from bacterial meningitis (56%, n=59). No-one felt that information was not needed.

Respondents who had left hospital within the 3 months before they completed the survey were more likely to say that had not been given any information but would have liked this (71%, n=24) than those who had left hospital between 3 months and 2 years ago (54%, n=37).

Before you left hospital, did you and your household get enough information to prepare for your return home?

Figure 5 (Question 8): Asked to all respondents who had stayed in hospital within the last two years.

Question 9: 17% (n=17) of survey respondents were directed to support services which they found either very or somewhat helpful before leaving hospital. Just under three quarters (71%, n=73) were not directed to support services but would have liked this, and this was most stark amongst the viral meningitis population (80%, n=28) compared with the bacterial meningitis group (66%, n=39). See Figure 6 for full details.

Respondents who had been in hospital within the 3 months before they completed the survey were more likely to report that they had not been directed to support services but would have liked this (79%, n=27), than those who had been in hospital between 3 months and 2 years ago (67%, n=46). This could suggest that signposting to relevant support services is declining

Before you left hospital, were you directed to any support services (such as from a physiotherapist, occupational therapist, social services or the voluntary sector)?

Yes, and this was very helpful Yes, and this was somewhat helpful

Yes, but this was not helpful

I was directed but I did not use this

No, but I would have liked this

This was not needed

Don't know/can't remember

Overall (n=103) Viral meningitis (n=35) Bacterial meningitis (n=59)

Figure 6 (Question 9): Asked to all respondents who had stayed in hospital within the last two years.

Question 10: 12% (n=12) of survey respondents were provided with helpful information about recovery expectations and management before they left hospital, however 80% (n=81) reported that they did not receive this information but would have liked this – see Figure 7.

Respondents who had been treated for viral meningitis were less than half as likely (6%, n=2) as respondents treated for bacterial meningitis (15%, n=9) to have been provided with helpful information about how to manage their meningitis recovery Those who had suffered from viral meningitis were more likely (85%, n=29) than those who had suffered from bacterial meningitis (76%, n=45) to say that they did not receive any information but would have liked this – see Figure 7

The proportion of respondents reporting that they did not receive any information about their meningitis recovery but would have liked this was higher amongst those who were in hospital within the 3 months prior to completing the survey (88%, n=30) than those in hospital between 3 months and 2 years ago (76%, n=51).

Figure 7 (Question 10): Asked to all respondents who had stayed in hospital within the last two years.

Before you left hospital, were you provided enough information about what to expect from and how to manage your recovery from meningitis?

Question 11: 46% (n=46) were offered a follow-up appointment after their stay in hospital for meningitis- see Figure 8

Respondents who had been treated for bacterial meningitis were more than 4 times as likely to have been offered a follow-up appointment with the hospital (52%, n=30) than those who had been treated for viral meningitis (12%, n=4). Conversely, respondents who had suffered from viral meningitis were more than twice as likely to answer ‘No, but I would have liked this’ (65%, n=22) than those who had suffered from bacterial meningitis (26%, n=15). See Figure 8 for full details, however, please take care with interpretating differences due to low numbers of respondents.

After your hospital stay, were you offered a follow -up appointment? (Please select all that apply)

Yes, with the GP Yes, with the hospital No, but I arranged this myself

No, but I would have liked this

This was not needed Don't know/can't remember

Figure 8 (Question 11): Asked to all respondents who had stayed in hospital within the last two years.

Overall (n=100) Viral meningitis (n=34) Bacterial meningitis (n=58)

This section was asked to all respondents as it focused on the meningitis-related information since leaving hospital. Questions related to information provided by medical staff, as well as information obtained through self-searching and subsequent contact with supportive organisations such as charities.

Question 12: 15% (n=32) of survey respondents had been given helpful information about meningitis by healthcare staff since leaving hospital – see Figure 9

Viral meningitis respondents were slightly more likely to say that they were not given information about meningitis by healthcare staff since leaving hospital but would have liked this (83%, n=63) than bacterial meningitis respondents (73%, n=94) – see Figure 9.

The percentage of respondents reporting that they did not receive any information from healthcare staff about meningitis after leaving hospital but would have liked this increased by age up to 55-64 years. More specifically, 60% (n=18) of 16–24-year-olds gave this response, compared with 84% (n=38) of respondents aged between 45 and 54 years and between 55 and 64 years (n=36). Those aged 65-74 years were the least likely to give this response (58%, n=7), although the total number of responses from this age group is low (n=12) mean that it should be interpreted with caution. For responses to question 12 by region, please see Appendix 2

Since you left hospital after being treated for meningitis, have healthcare staff (e.g. hospital staff or GP) given you enough information about meningitis?

Yes, and this information was helpful

Yes, but this information was not helpful

No, but I would have liked this This was not needed Don't know/Can't remember

Overall (n=220) Viral meningitis (n=76) Bacterial meningitis (n=129)

Question 13: 95% (n=210) of respondents have sought further information relating to meningitis themselves since leaving hospital. Of these, 65% (n=137) sought information from more than one place. The top three methods that respondents used to seek further

Figure 9 (Question 12): Asked to all respondents

information about meningitis were via internet search (73%, n=160), by contacting Meningitis Now (53%, n=116), and through the NHS website (42%, n=92) – see Figure 10

Responses to question 13 were relatively consistent regardless of meningitis cause, although bacterial meningitis respondents were slightly more likely to have contacted charities other than Meningitis Now (15%, n=19) compared to viral meningitis respondents (5%, n=4).

Figure 10 (Question 13): Asked to all respondents.

Since you left hospital after being treated for meningitis, did you seek further information or help yourself in relation to your meningitis? (Please select all that apply)

Yes, via internet search

Yes, I contacted Meningitis Now

Yes, I contacted charities other than Meningitis Now

Yes, I used social networking sites such as Facebook, Twitter and HealthUnlocked

Yes, I used the NHS website

Yes, other (please state)

No, I did not seek any help or further information myself

Question 14: 86% (n=180) of survey respondents were seeking more than one type of information when they sought further information about meningitis after leaving hospital. Figure 11 displays the types of information that survey respondents have sought since leaving hospital for meningitis, for example 90% of all respondents (n=189) had sought information about recovery expectations or management.

Figure 11 (Question 14): Asked to all respondents who sought further information about meningitis themselves

What information or help were you seeking?

(Please select all that apply)

Seventy-one percent (n=17) of respondents who had contacted charities other than Meningitis Now were looking for information about where to find support, compared to 53% (n=61) of respondents who had contacted Meningitis Now. Please refer to the separate excel spreadsheet (P101785_Meningitis_Now_Frequency_Tables_For client_FINAL) for further details.

After-effects

Question 15: 98% (n=214) of survey respondents experienced after-effects of meningitis. Of these, 88% (n=192) of respondents experienced more than 2 after-effects, 55% (n=120) experienced more than 5 after-effects, and 28% (n=62) experienced more than 8 Just 2% of respondents (n=4) reported that they had not suffered from any after-effects.

Figure 12 shows the after-effects reported by survey respondents – overall and by type of meningitis The most commonly experienced after-effects overall were exhaustion / tiredness / fatigue (83%, n=181), brain fog or difficulties with thinking (72%, n=158), and headaches (71%, n=154).

Respondents who had had viral meningitis were slightly more likely (88%, n=66) to report that they suffered headaches as an after-effect than those who had had bacterial meningitis (60%, n=77). Conversely, bacterial meningitis respondents were more likely to report balance problems (49%, n=63) than viral meningitis respondents (29%, n=22), and were also more likely to report hearing difficulties or loss (47%, n=60 for viral compared to 23%, n=17 for bacterial meningitis). Speech and language difficulties, brain fog or difficulties with thinking, and exhaustion, tiredness or fatigue were similarly experienced by both groups. Please see Figure 12 for full details

What aftereffects of meningitis, if any, have you experienced? Please select all that apply.

Question 16: of the 214 respondents who had suffered after-effects, just under three quarters (74%, n=158) reported that they definitely still suffer from after-effects of their meningitis. This was slightly higher amongst those who had had suffered bacterial meningitis (78%, n=97) compared to viral (71%, n=53). See Figure 13 for full details.

Figure 13 (Question 16): Asked to all respondents who had suffered after-effects.

Do you still suffer from after-effects of your meningitis?

Yes, definitely Yes, maybe No Not sure

Chart shows question 16: Asked to all respondents who stated that they had suffered from aftereffects of their meningitis. Total responses = 214

Overall (n=214) Viral meningitis (n=75) Bacterial meningitis (n=124)

Question 17: 94% (n=201) of survey respondents experienced difficulties with some aspects of their lives because of meningitis. Of these, 80% (n=160) experienced more than 1 difficulty, 45% (n=91) experienced more than 3 difficulties, and 15% (n=31) experienced more than 5.

Figure 14 shows the types of difficulties that respondents had experienced – overall and by type of meningitis. The most frequently selected difficulties were ‘Everyday activities that people your age can usually do’ (69%, n=148), ‘At work’ (61%, n=129), and ‘Communicating, mixing with others, or socialising’ (51%, n=108).

Viral meningitis respondents were slightly more likely (69%, n=51) than bacterial meningitis respondents (59%, n=73) to experience problems at work. Conversely, those who had been treated for bacterial meningitis were slightly more likely to experience difficulties with communicating, mixing with others, or socialising (56%, n=70) than those who had been treated for viral meningitis (45%, n=33). Please refer to Figure 14 for full details.

Age comparisons indicated that respondents aged 16-24 were more likely to experience difficulties in education or training relative to other age groups. This age group was also the least likely to experience difficulties at work However, it is important to note that due to low response numbers, data from respondents aged 65 or older has been suppressed due to the suppression threshold applied to the data To see results by age of respondent, please see Appendix 3.

The most considerable differences in responses to question 17 by gender were:

‘Everyday activities that people your age can usually do’ (74%, n=112 of female respondents compared to 58%, n=30 of male respondents)

‘Your family and/or other close relationships’ (46%, n=24 of male respondents versus 36%, n=55 of female respondents)

Results by gender are available for all survey questions and has been provided in the separate Excel document, however these should be interpreted with caution due to low numbers of respondents.

Do you feel that meningitis and any associated after-effects have ever caused you difficulty with any of the following?

(Please select all that apply)

People’s attitudes to you because of your condition or after-effects

Communicating, mixing with others, or socialising

Your family and/or other close relationships

Any other activity (please state)

No difficulty with any of these

Figure 14 (Question 17): Asked to all respondents who stated that they had suffered from aftereffects of their meningitis.

Aftercare and support

A key aim of the survey was to understand the aftercare and support that is offered to and needed by people who have suffered from meningitis after they are discharged from hospital. All respondents were asked these questions.

Question 18: 21% (n=45) of survey respondents reported that they had been offered psychological support services. Differences by meningitis type indicated that over a quarter of bacterial meningitis respondents (26%, n=33) were offered psychological services compared to just 11% (n=8) of viral meningitis respondents – see Figure 15.

Comparisons by time since treatment indicated that 12% of respondents who had been treated within the 3 months prior to responding to the survey had been offered psychological support services since leaving hospital, compared to 18% of respondents who had been treated between 3 months and 2 years ago, and 25% of respondents treated between 2 and 5 years ago. Please see Figure 15 for full details. For results by region, please see Appendix 4.

Figure 15 (Question 18): Asked to all respondents

Since

left hospital after being treated for meningitis, have you been offered psychological support (for example counselling or other talking therapies)?

Question 19: overall, of the 36 respondents who were offered psychological support services and used them, 56% (n=20) had been offered NHS or social services – see Figure 16.

Who were these services provided by? Please select one only (if you used services from more than one place, pick the one that was used most recently)

Question 20: of the 36 respondents who were offered psychological support services and used them, 39% (n=14) had definitely seen these services as soon as necessary – see Figure 17

Did you see these services as soon as you thought was necessary? (n=36)

Figure 16 (Question 19): Asked to all respondents who reported that they have used psychological support services at question 18 (n=36)

Figure 17 (Question 20): Asked to all respondents who reported that they have used psychological support services at question 18 (n=36)

Question 21: of the 36 respondents who were offered psychological support services and used them, 42% (n=15) definitely found them helpful – see Figure 18

Figure 18 (Question 21): Asked to all respondents who reported that they have used psychological support services at question 18 (n=36)

Were these services helpful?

Question 22: 23% (n=50) of survey respondents reported that they had been offered support services to help manage their meningitis recovery – see Figure 19

The proportion of respondents who were offered support to help them manage their recovery was highest for those who had been in hospital for meningitis between 3 months and 2 years ago (29%, n=19). Just 9% (n=3) of respondents who had been treated within the last 3 months had been offered this support, and 24% (n=28) of respondents treated between 2 months and 5 years ago had been offered recovery support services.

Similar to psychological support services, more respondents who had been treated for bacterial meningitis (25%, n=32) were offered recovery support compared to those who suffered from viral meningitis (15%, n=11). Furthermore, viral meningitis respondents were more likely (70%, n=51) than bacterial meningitis respondents (59%, n=75) to report that they had not been offered this type of support but would have liked this -see Figure 19. For results by region, please see Appendix 5

Since you left hospital after being treated for meningitis, have you been offered support to help you manage your recovery (such as from a physiotherapist, occupational therapist, social services or the voluntary sector)?

Yes, and I used these services Yes, I was offered but I did not use these services

No, but I would have liked this This was not needed Don't know/can't remember

Question 23: of the 47 respondents who were offered recovery management services and used them, 77% (n=36) were provided services by the NHS or social care – see Figure 20. Please be aware that the following questions have low response numbers, therefore please interpret with caution.

Figure 19 (Question 22): Chart shows Question 22: Asked to all respondents.

(

): Asked to all respondents who reported that they have used support to help manage their recovery (such as from a physiotherapist, occupational therapist, social services or the voluntary sector) at question 22.

Who were these services provided by? Please select one only (if you used services from more than one place, pick the one that was used most recently).

Question 24: of the 47 respondents who were offered recovery management services and used them, just over two thirds (68%, n=32) saw these services as soon as they thought was necessary – see Figure 21

Figure 21 (Question 24): Asked to all respondents who reported that they have used support to help manage their recovery (such as from a physiotherapist, occupational therapist, social services or the voluntary sector) at question 22.

Did you see these services as soon as you thought was necessary?

and this was soon enough No, but I would have liked this No, but this was my choice

Figure 20

Question 23

Question 25: of the 47 respondents who were offered recovery management services and used them, 47% (n=22) definitely found these services helpful – see Figure 22

Figure 22 (Question 25 Asked to all respondents who reported that they have used support to help manage their recovery (such as from a physiotherapist, occupational therapist, social services or the voluntary sector) at question 22.

Were these services helpful?

Overall care

Questions about overall care allow for a holistic appraisal of care experiences in line with the Picker Principles of Person-Centred Care, which highlight essential components of care such as empathy and fast access to treatment.

Question 26: 38% (n=81) of survey respondents were always treated with empathy and understanding by staff providing them with meningitis care and support Bacterial meningitis respondents were more than twice as likely to report always being treated with empathy and understanding (50%, n=63) compared to viral meningitis respondents (19%, n=14) – see Figure 23 for full details.

Those who were in hospital for meningitis within the three months before they completed the survey were slightly more likely (28%, n=9) to report not being treated with empathy and understanding by staff, compared to 21% (n=14) of those who were in hospital between 3 months and 2 years ago and 19% (n=22) of those in hospital between 2 and 5 years ago. For results by region, please see Appendix 6

Overall (n=47) Viral meningitis (n=11) Bacterial meningitis (n=32)

Overall, have staff providing you with meningitis care and support treated you with empathy and understanding?

Question 27: 98% (n=208) of survey respondents felt that improvements could have been made to their overall experience of meningitis aftercare and support. Overall, the most commonly selected response options when respondents were asked what would have made their overall experience of meningitis aftercare and support better (see Figure 24) were:

more meningitis specific information (74%, n=156)

being referred to the right places (68%, n=144)

the GP having more access to information (64%, n=136) having more realistic recovery expectations (64%, n=135).

When asked what might have improved their experience of meningitis care and support, the top three most common responses for bacterial meningitis respondents were: more meningitis-specific information (79%, n=99) being referred to the right places (68%, n=85)

my GP having access to more information’ (64%, n=80).

The most commonly chosen options by viral meningitis respondents were: more realistic recovery expectations (76%, n=55) being referred to the right places (72%, n=52)

more meningitis-specific information (72%, n=52).

Figure 23 (Question 26): Chart shows Question 26: Asked to all respondents.

Viral meningitis respondents were slightly more likely than bacterial meningitis respondents to choose almost every response option for question 27 with the exception of ‘Better home arrangements’, ‘More meningitis-specific information’, ‘More help with financial support’, and ‘Quicker access to support’ – see Figure 24

Would any of the following have made your overall experience of meningitis aftercare and support better? (Please select all that apply)

Overall care (freetext)

This section summarises the key findings from analysis of the freetext data arising from the following open-ended survey question:

What is the one thing you would change about meningitis aftercare and support in the UK? (Q28)

There were 177 freetext responses to this question. The freetext data were cleaned to exclude unusable comments such as ‘okay’ and ‘no’. Three unusable comments were removed, leaving 174 usable comments for analysis.

The key themes emerging from analysis of question 28 are outlined below.

In hospital

Although the focus of the question is on aftercare of meningitis, a number of respondents spoke about poor care in hospital, where their support journey began.

‘Advice and information whilst I was in hospital’

Bacterial meningitis respondent

Information and misinformation

From discharge onwards, respondents noted a lack of information and signposting, showing a need for realistic information and advice relating to life after meningitis. People spoke of their frustration at having no understanding of what to expect following their meningitis and this included:

After-effects

What was and was not ‘normal’

The recovery process

Where to turn to for support (both physical and psychological) following their meningitis.

“Being given much more information about meningitis and what it really means for my health in the long term. It wasn’t explained to me what aftereffects that I would possibly suffer from, or the best way to deal with them.”

Bacterial meningitis respondent

‘‘An explanation on leaving hospital that recovery was going to take a long time with ups and downs.”

Viral meningitis respondent

Understanding and Awareness

“There is a significant disparity of understanding of meningitis and its impact (of varying degrees) across the medical profession. Having been seen by various professionals they had different understandings of the lasting impact and the potential recovery time.”

Viral meningitis respondent

Going some way towards explaining limitations in healthcare providers’ signposting and communication of meningitis-related information, some respondents indicated a lack of understanding about meningitis within the healthcare community, extending from diagnosis through to aftercare. One bacterial meningitis respondent simply wrote, “The NHS don’t seem to understand meningitis”

This was particularly felt in relation to GPs, often the first port of call for patients but also a point of contact once they had been discharged from hospital:

“For the GPs to take meningitis seriously…. Both at diagnostics (I was told my headache was the stress of Christmas coming…) and more support afterwards.”

Viral meningitis respondent

The plethora of misinformation and lack of awareness surrounding meningitis after-effects seemed to lead to healthcare staff attributing these to other life stages a patient may be experiencing, such as ageing or the menopause:

“Health professionals dealing with sight and hearing problems seem to not have enough knowledge of meningitis and it’s aftereffects. Was easy for them to brush it off and put my eye changes and hearing loss down to age.”

Bacterial meningitis respondent

Dismissal

Notably, a strong theme to emerge from the survey freetext data was the idea that viral meningitis is still viewed by many as a ‘short-term’ illness or ‘just a virus’:

“Healthcare providers don’t count viral meningitis as a serious illness so they dismiss it altogether, change in attitude through training would help.”

Viral meningitis respondent

“Support from the NHS or even Meningitis Now, people seem to think viral meningitis is not life changing and it is, 3 years on and I am still suffering and it effects my everyday life.”

Viral meningitis respondent

However, some bacterial meningitis respondents reported similar dismissal of the severity and existence of their post-treatment symptoms:

“To be taken seriously by GP and not accused of faking it.”

Bacterial meningitis respondent

Expectation management

“I was made to feel like I should recover in a week or 2. It took me over a year to be any where near like myself. I would have wanted more information and support with recovery and healthcare providers to understand it more.”

Viral meningitis respondent

Many people reported being unsure what to expect of their recovery, in terms of both timescales and what they might experience. It was commonplace for respondents to describe being handed a sick note and told by healthcare providers that they would start to feel better again in 2 weeks’ time. This often was not the case, and this led to people feeling inadequate, rushing back to work, or concerned if what they were still experiencing was ‘normal’.

“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. At the very least, I wish they had pointed me in the direction of charities like meningitis now from the start.”

Viral meningitis respondent

Lack of Aftercare

“More follow-up by the hospital after discharge. I felt I was sent home and forgotten about.”

Bacterial

meningitis respondent

Beyond recovery expectations, misunderstandings of the severity and impact of meningitis appear to be reflected in a lack of contact between respondents and healthcare staff following discharge. Some survey respondents reported lack of follow-up offered to people who had suffered from meningitis following a stay in hospital. This could be in part due to the complexities of the disease and the multitude of after-effects that can be experienced, meaning there is no clear recovery pathway.

Highlighting these complexities, many respondents noted limitations to healthcare providers’ awareness of the emotional and psychological repercussions of meningitis, in addition to the physical effects. Alongside cognitive issues, a number of respondents mentioned fear and anxiety:

“Coping with the fear of life-threatening condition which also caused sepsis and having aftercare. I had good care in hospital but no one told me I would experience longer term issues like brain fog and psychological issues.”

Bacterial meningitis respondent

Other respondents reported feelings of isolation, due to the lack of support and awareness:

“To not be left alone with dealing with the after-effects. To have had physical and financial and emotional support after coming out of hospital to help with my recovery.”

Bacterial meningitis respondent

Poor continuity of care

“The specialists were fantastic, but at general practice level once I was basically past the worst (gp, physio, there was little understanding of my conditions post illness).”

Bacterial meningitis respondent

As mentioned, people who have suffered from meningitis often have multiple needs following their illness so may need to be seen by a number of different services such as audiology, optometry, and/or neurology. Some freetext responses indicated that referrals were lacking, and noted poor communication between departments, indicating poor care continuity. People were left having to explain their patient journey numerous times, and also that services were sometimes unsure why they were presenting as a patient:

“I was referred for a hearing test and they didn’t even know why.”

Bacterial meningitis respondent

Self-advocacy

Lack of post-treatment care resulted in several respondents feeling that they had to advocate for themselves in order to be seen.

“Make it mandatory for meningitis patients to be discharged with a care plan (without the onus on the patient to self-serve/have to entirely educate themselves about what care they need, or have to try and book appointments and chase waiting lists themselves).”

Bacterial meningitis respondent

“Consultants to Drs need to know more about meningitis..,very frustrating when they don’t….a lot is not understood about it….people are under the assumption that recovery is easy….its a long road…and sometimes you have to fight all the way to be seen by a certain consultant…I find they do not listen.”

Bacterial meningitis respondent

Holistic Impact

“More people need to be aware of the aftereffects and there needs to be more services available for support. It is viewed as a one-off illness when in fact it is life changing and long term.”

Bacterial meningitis respondent

Awareness is not only lacking amongst patients and healthcare staff: some respondents also referred to the need for support and awareness from their families, as well as employers and

universities. Although some people make a fast recovery, for many, meningitis is a very debilitating disease, with far-reaching effects:

Families and carers have little understanding of how to help or what the impact on day-to-day living will be;

Employers and places of study may also not have a good understanding of the disease and impact - and people who have suffered from meningitis are not equipped to facilitate this or advocate for their needs, as they have no concrete answers themselves;

Financial difficulties may arise from the impact of not being able to work for prolonged periods, or from needing home adaptations.

“The advice online from NHS is so wrong as it makes it sound like you will be well and fit again after 7 - 10 days and doesn’t mention that it’s life changing for some sort employers read that and friends and think you are faking!”

Viral meningitis respondent

There needs to be better education and training amongst providers regarding meningitis, from diagnosis through to aftercare. It can affect many areas including sensory, psychological and emotional, and physical (e.g. limb loss and neurological impact). For many, meningitis is, quite simply, life-altering.

“Support and advice, life is not the same, I’m not the same person I was. It needs recognition.” meningitis from another cause respondent

An additional freetext question was included in the meningitis survey:

Would you like to tell us anything else about your meningitis experience or provide further information about your responses to the questions? (Q29)

This question received a total of 120 responses which have been supplied in a separate excel spreadsheet entitled ‘P101785_Meningitis Now Full Dataset_For client_FINAL’.

Conclusions

This survey has provided a useful overview of the support and aftercare needs of people who have suffered from meningitis in the UK.

Key observations taken from the study:

Bacterial meningitis often requires more intensive treatment than viral meningitis and people tend to have a longer stay in hospital, due to its life-threatening nature (Question 6; Question 7)

However, regardless of the cause of meningitis, survey respondents reported room for improvement in aftercare – both in terms of information provision and support Viral meningitis patients were more likely to report a lack of aftercare compared to bacterial meningitis patients

Lack of care continuity begins at discharge from hospital (Question 8; Question 9; Question 10; Question 11) but extends beyond primary to secondary and tertiary care (Questions 12; Questions 18-25 inclusive).

Survey respondents reported ongoing and multifaceted after-effects of meningitis, which affect many aspects of their lives (Question 15, Question 16; Question 17; Question 28).

Many survey respondents turn to charities and the internet for meningitis aftercare support (Question 13; Question 14; Question 28).

People who have suffered from meningitis report room for improvement in being consistently treated with empathy and understanding by healthcare staff (Questions 26-28 inclusive).

Limitations of the study

Due to the recruitment approach used, the sample for the survey were self-selecting and therefore likely to be unrepresentative of the whole UK adult meningitis population. Respondents who were more engaged with the topic of aftercare and support might have been more likely to take part. To circumvent this, it would be necessary to amend the sampling method, such as taking a standardised and representative sample from healthcare provider patient lists. For some sub-group comparisons such as age group and gender, the respondent numbers are particularly low and therefore results should be interpreted with caution

Moreover, the overall number of respondents was fairly small despite a planned communications campaign to raise awareness of the survey and to invite people to take part Concerns about recall meant that respondents were only eligible if they reported having a hospital admission for meningitis within the last five years, and were only asked questions

about their stay in hospital if they had been admitted within the last two years. This was to ensure the survey captured recent experiences of care and support but also means that the population being recruited into the survey was limited and a contributing factor for the relatively low number of responses.

Additionally, there is likely to have been an overall reduction in meningitis rates in the UK between 2020 and the start of 2022, due to social contact restrictions and lockdowns as part of Covid-19 pandemic measures. Although rates of meningitis have started to again rise, a lower number of respondents from the sampling period will likely to have contributed to a reduced sample pool.

However, the survey does offer a poignant insight into the experiences of the UK adult meningitis population, and points to some interesting areas for further exploration.

Recommendations

Whether caused by a virus, a bacterial infection, or another unknown cause, the after-effects of meningitis are widespread and affect more than physical wellbeing. In this survey, respondents reported suffering social and financial difficulties within both a long and short-term context, many of which might be interrelated. For example, difficulties with communication and socialising, as well as societal attitudes, may impact work or education, which may in turn affect finances. The recommendations from the survey findings are as follows:

Greater information provision at discharge for people who have suffered from meningitis and their family, friends and employers, would help to reduce the negative impact of meningitis on people’s social and financial wellbeing. More than half of all meningitis respondents felt that being able to direct their friends and family to information about their condition would have made their overall experience of meningitis aftercare and support better. Information should be accessible for all. This information would hold the greatest legitimacy and benefit if it were to come from medical sources.

Meningitis Now should produce an evidence-based discharge checklist for healthcare staff outlining guidance to help manage patient expectations, along with signposting to support and information provision. High quality information should be accessible to all healthcare staff but particularly GPs and should consider the limited time that is available to them. In addition to checklists, best practice in meningitis aftercare could be supported with additional resources like leaflets and training videos for staff, and readily available information online from the NHS.

Meningitis Now should use the findings from this report to inform the national standardised guidelines for bacterial meningitis and meningococcal disease that are currently under development, and to advise on aftercare and support protocols for other causes of meningitis. These guidelines should help educate and therefore alleviate some aspects of impact on meningitis sufferers’ long-term wellbeing.

When medical staff are unaware of the impact of meningitis on peoples’ lives, they are unable to provide or signpost them to appropriate support and care that meets their needs Regardless of meningitis cause, both psychological and recovery management support services are needed Those who have suffered from meningitis should have holistic support available to them when they need it and know how to access it. When this support is accessed, everyone should be treated with empathy and respect Further education may be needed amongst health and social care staff about the long-term impact of meningitis and the associated care and support requirements to ensure they can successfully deliver and provide this. In addition to further education, there needs to be accessible care with defined

pathways or options for those who’ve suffered from meningitis, who may have varied and differing needs:

Care should be accessible both at the time of being diagnosed with meningitis and beyond; people should not face additional difficulties when engaging with aftercare, such as needing to explain to providers why they are there. Moreover, those who have had meningitis should not feel that they need to ‘fight’ to access this care. Referrals should be timely and sympathetic to the needs of patients, and providers should be proactive in ensuring that needs are explored. Continuity of care is vital.

Standardised aftercare support packages should include both psychological and recovery support services and should direct people who have suffered from meningitis to charities, from the point of discharge Staff should engage in dialogue with patients at treatment, which should then be followed up to ensure their ongoing care and support needs are met.

Further research

The limitations discussed earlier indicate that more research is required to fully understand patient experiences of meningitis care and support in the UK. However, the results of this study provide ample indicators of the direction that future research efforts could take, including:

Exploring the relationship between specific after-effects and information and support needs

Assessing information and support provision priorities

Identifying education and training gaps amongst healthcare professionals

Understanding the reasons for disparities in information and support provision and needs across different groups including age, gender, regions, and cause of meningitis.

Final statement

While there are some limitations to this study, the results reflect the lived experiences of the 228 respondents to the survey. Meningitis affects a small proportion of adults, but its impacts on the lives of those who have suffered from it are immeasurable. Our final recommendation is that the results of this study are read with a consideration of the incidence, rather than the prevalence, of the disease; everyone deserves the best possible person-centred care, always.

Appendix 2: Information provision (Question 12) by region

Since you left hospital after being treated for meningitis, have healthcare staff (e.g. hospital staff or GP) given you enough information about meningitis?By region

Q12

Don’t know / can’t remember

This was not needed

No, but I would have liked this

Yes, but this information was not helpful

Yes, and this information was helpful

East Midlands (England) (n=20)

South East (England) (n=32)

Northern Ireland (n=*)

Yorkshire and the Humber (n=*)

London (n=18)

Wales (n=19)

North West (England) (n=31)

East of England (n=15)

Scotland (n=25)

North East (England) (n=17)

West Midlands (England) (n=11)

South West (England) (n=21)

Appendix 3 : Difficulties (Question 17) by age

Do you feel that meningitis and any associated aftereffects have ever caused you difficulty with any of the following? (Please select all that apply)

Q17

(Question 18) by region

Appendix 4 : Psychological support provision

By region

Since you left hospital after being treated for meningitis, have you been offered psychological support (for example counselling or other talking therapies)?

Don’t know / can’t remember

This was not needed

No, but I would have liked this

East Midlands (England) (n=19)

South East (England) (n=32)

Northern Ireland (n=*)

Q18

Yes, and I used these services Yes, I was offered but I did not use these services

Yorkshire and the Humber (n=*)

London (n=17)

Wales (n=19)

North West (England) (n=30)

East of England (n=15)

Scotland (n=25)

North East (England) (n=15)

West Midlands (England) (n=11)

South West (England) (n=21)

Appendix 5 : Recovery support provision (Question 22) by region

Since you left hospital after being treated for meningitis, have you been offered support to help you manage your recovery (such as from a physiotherapist, occupational therapist, social services or the voluntary sector)?By region

Q22

Don’t know / can’t remember

This was not needed

No, but I would have liked this

Yes, I was offered but I did not use these services

Yes, and I used these services

East Midlands (England) (n=20)

South East (England) (n=32)

Northern Ireland (n=*)

Yorkshire and the Humber (n=*)

London (n=17)

Wales (n=19)

North West (England) (n=30)

East of England (n=15)

Scotland (n=25)

North East (England) (n=15)

West Midlands (England) (n=11)

South West (England) (n=21)

(Question 26) by region

Appendix 6 : Empathy and understanding

Q26 Overall, have staff providing you with meningitis care and support treated you with empathy and understanding?By region

East Midlands (England) (n=20)

South East (England) (n=32)

Northern Ireland (n=*)

Yes, sometimes

Yorkshire and the Humber (n=*)

London (n=17)

Wales (n=19)

North West (England) (n=30)

Yes, always

North East (England) (n=15)

East of England (n=15)

Scotland (n=25)

West Midlands (England) (n=*)

South West (England) (n=21)

Notes

Notes

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