1. Aftercare and support for children after meningitis and septicaemia Laura Clark, Meningitis Research Foundation & University of Bristol

3. First member survey findings

4. Aftercare survey

5. Preliminary themes from parent interviews

7. Rationale for aftercare survey Questions from 1st member survey ? Why did people not receive hearing assessment within 4 weeks? ? Had access to aftercare improved? ? What types of support were provided for educational and behavioural and psychological problems? ?Which factors contributed towards needs being met/not met? Need for more recent experience of accessing aftercare services Shift in focus on aftercare rather than entire care pathway

8. Aftercare survey – 3 main aims Survey of parents of children who had meningitis and septicaemia between 2000-2010 to find out: - Which aftercare and support services parents felt were required - How satisfied parents were with provision and access to aftercare services -Which factors contributed to child’s needs being met/not met

10. Qualitative research One-to-one follow up interviews with 18 parents to gain an understanding of why they felt child’s needs were met/not met

11. Survey sample -215 parents from UK and ROI -Most children under 4 years old when ill -High reporting of after effects (nearly half of parents reported that their child had permanent after effects – bias in sample) -The median time since illness of responders was 6.5 years (IQR 4 years).

12. NICE guideline – bacterial meningitis and septicaemia in children 1.5.3 Offer a formal audiological assessment as soon as possible, preferably before discharge, within 4 weeks of being fit to test. 1.5.5 Children and young people should be reviewed by a paediatrician with the results of their hearing test 4–6 weeks after discharge from hospital to discuss morbidities associated with their condition and offered referral to the appropriate services.

13. Comparison of our sample with NICE guideline Hearing test within 4 weeks of being fit to test?

14. Comparison of our sample with NICE guideline Follow up appointment after discharge?

15. Aftercare and support services required -58% required at least 1 aftercare service and 41% required more than one -The highest need was for educational support, and over half of these did not feel they received enough. -Requirement for well integrated community care for rehabilitation in day-to-day activities (most needed physiotherapy, speech and language therapy and occupational therapy). -Although most people could access the most needed services (albeit with some difficulty), and most agreed the support they received was useful, many disagreed that they were happy with the follow up provided. This implies other factors than access to aftercare are important for parents.

16. Preliminary themes emerging from interviews “School have been brilliant” (when enough educational support has been provided)

17. Preliminary themes emerging from interviews “Routine health visitor helped a lot ”

18. Preliminary themes emerging from interviews “We were totally left on our own”

19. Preliminary themes emerging from interviews “Age holds everyone back – wait and see”

21. Just over 1/3 reported hearing assessment within 1 month and more than 1/3 not offered follow up

22. Educational support, physiotherapy, speech and language therapy and occupational support most needed

23. Most people could access the most needed services but many were not happy with the care received

25. More awareness of need for routine follow up appointments - with all involved in child’s development