1. 1

2. 2 Method Hannah Shotton

3. 3 Background  Many changes in the last 20 years  NCEPOD reports 1989/1999  Kennedy Report  NSF for children  Clinical and organisational change to healthcare provision for children  Specialisation and centralisation of children’s services

4. 4 Background  Less surgery in DGH  Concern regarding deskilling  Networks  Timing of study  Expert group

5. 5 Aims To explore remediable factors in processes of care of children 17 years and younger, including neonates, who died prior to discharge and within 30 days of emergency or elective surgery 1) Organisational structure of services 2) Quality of care received by individuals

6. 6 Objectives: Organisational  Facilities  Networks  Transfer  Management of the “older child”  Skills and competencies of staff  Policies & procedures  Team working  Theatre scheduling  Audit

7. 7 Objectives: Case Review  Pre-operative care and admission  Intra-hospital transfer  The seniority of clinicians  Multidisciplinary team working (involvement of paediatric medicine)  Delays in surgery  Anaesthetic and surgical techniques  Acute pain management  Critical care  Comorbidities  Consent

8. 8 Method  Hospital participation  Organisational questionnaire  Case ascertainment  Population  Exclusions  Data collection for 2 years

9. 9 Method  Surgical/Anaesthetic questionnaire  Case notes  Peer review

10. 10 Data returns - organisational  77% return rate

11. 11 Data returns – peer review

12. 12 Overview data - organisational

13. 13 Overview data – peer review

14. 14 Organisational Data David Mason

15. 15 Workload

16. 16 Workload

17. 17 Networks  ‘ Clinical network for children’s surgery’  Informal / formal  49% (96/194) of NHS hospitals included in a network

18. 18 Networks

19. 19 Structure and Function  51/107 were in informal networks without specific accountability or clinical governance arrangements  50/107 clinical leads and 46/107 undertook educational meetings  64/107 agreed policies for clinical care few of these included specific surgical conditions  28/107 hospitals held network based multidisciplinary team meetings  21/107 hospitals held network based audit morbidity and mortality meetings

20. 20 Recommendations  Clinical networks for children’s surgery There is a need for a national Department of Health review of children’s surgical services in the UK to ensure that there is comprehensive and integrated delivery of care which is effective, safe and provides a high quality patient experience. National NHS commissioning organisations including the devolved administrations need to adopt existing recommendations for the creation of formal clinical networks for children’s surgical services. These need to provide a high quality child focused experience which is safe and effective and meets the needs of the child.

21. 21 Transfer of children  93.3% (266/285) of hospitals had a policy  No policy in 10 DGHs, 4 UTHs and 1 STPC  Elements included in policy (259)  130 staffing arrangements  127 family support  188 communication procedures  74 equipment provision  95 transport arrangements

22. 22 Team working

23. 23 Recommendation  Transfer of children All hospitals that admit children should have a comprehensive transfer policy that is compliant with Department of Health and Paediatric Intensive Care Society guidance and should include; elective and emergency transfers, staffing levels for the transfer, communication procedures, family support, equipment provision and transport arrangements.

24. 24 Recommendation  Team working All hospitals that provide surgery for children should have clear operational policies regarding who can operate on and anaesthetise children for elective and emergency surgery, taking into account on-going clinical experience, the age of the child, the complexity of surgery and any co-morbidities. These policies may differ between surgical specialities.

25. 25 Clinical governance  53% of hospitals held audit and M&M meetings for children  4/26 hospitals with a >4000 operations/year did not undertake meetings

26. 26 Pre-admission assessment  80% (228/284) of hospitals had pre-admission clinics  Written information  90% (240/267) for surgery  56% (149/267) for anaesthesia

27. 27 Recommendations  Clinical governance and audit All hospitals that undertake surgery in children must hold regular multidisciplinary audit and morbidity and mortality meetings that include children and should collect information on clinical outcomes related to the surgical care of children.  Pre-operative assessment of elective paediatric surgical patients Hospitals in which surgery in children is undertaken should provide written information for children and parents about anaesthesia. Good examples are available from the Royal College of Anaesthetists website.

28. 28 Children’s operating theatres  9 hospitals of all categories that reported >4000 operations/year did not have dedicated children’s operating theatres

29. 29 Theatre scheduling

30. 30 Non-elective operating  “Out of Hours”  14/27 of STPCs children only emergency lists.  Of note five of the remaining STPCs undertook between 4,000 and 10,000 cases per annum

31. 31 Recovery  35% (99/277) children recovered not separately from adults

32. 32 Recommendations  Theatre scheduling for children Hospitals that have a large case load for children’s surgery should consider using dedicated children’s operating theatres. Hospitals in which a substantial number of emergency children’s surgical cases are undertaken should consider creating a dedicated daytime emergency operating list for children or ensure they take priority on mixed aged emergency operating list.

33. 33 Hospital facilities  No separate provision in 1/3 of DGHs, 1/2 STPCs & UTHs

34. 34 Specialised staffing  13% (37/278) hospitals surgery undertaken on a site remote from the inpatient paediatric beds  6 hospitals (2 small DGH, 1 UTH, 2 PH, 1 SSH) no provision for paediatric medical support  10.3% (23/223) hospitals trainees from an adult only surgical specialty provided medical cover for inpatient children  8.4% (23/275) hospitals did not have at least one children’s registered nurse per shift on non critical care wards

35. 35 Anaesthetic assistance Specialised staffing

36. 36 Recovery staff Specialised staffing

37. 37 Recommendations  Specialised staff for the care of children Children admitted for surgery whether as an inpatient or an outpatient must have immediate access to paediatric medical support and be cared for on a ward staffed by appropriate numbers of children trained nurses. There is a need for those professional organisations representing peri-operative nursing and operating department practitioners to create specific standards and competencies for staff that care for children while in the operating theatre department.

38. 38 Management of the seriously ill child  18.5% (51/276) no policy for the identification of the sick child  56.4% (155/275) hospitals used track and trigger (paediatric early warning scoring)

39. 39 Resuscitation  15/277 hospitals no resuscitation policy that included children  3 DGH, 4 UTH, 5 PH, and 3 SSH  6 hospitals no onsite resuscitation team for any age of patient  3 DGH, 3 PH  16 hospitals no member of resuscitation team had advanced training in paediatric resuscitation  4 small DGH, 3 large DGH, 1 UTH, 2 PH 6 SSH

40. 40 Recommendations  Management of the sick child All hospitals that admit children as an inpatient must have a policy for the identification and management of the seriously ill child. This should include Track & Trigger and a process for escalating care to senior clinicians. The National Institute for Health and Clinical Excellence needs to develop guidance for the recognition of and response to the seriously ill child in hospital. All hospitals that admit children must have a resuscitation policy that includes children. This should include the presence of onsite paediatric resuscitation teams that includes health care professionals who have advanced training in paediatric resuscitation.

41. 41 Acute pain management  69% (137/198) of NHS hospitals had an Acute Pain Service

42. 42 Acute pain management

43. 43 Acute pain management  1/4 hospitals had APN for children  95% (264/ 277) hospitals routinely assessed pain and sedation  48% (131/273) hospitals provided regular education programmes  14% (38/272) hospitals did not have protocols for the management of postoperative pain

44. 44 Recommendation  Paediatric acute pain management Existing guidelines on the provision of acute pain management for children should be followed by all hospitals that undertake surgery in children.

45. 45 Peri-operative care Kathy Wilkinson

46. 46 Comparisons 1989, 1999, and 2011 reports Publication date Study duration 1989 1 year 1999 1 year 2011 2 years Age (years, inclusive) 0-90-150-17 PopulationCardiac, Non cardiac Non CardiacCardiac, Non cardiac Deaths reviewed262/295112378 Deaths identified 417139597 %reviewed/ identified 62.8% anaes 70% surg 80%63%

47. 47 Age and gender

48. 48 Location of death

49. 49 Diagnostic group

50. 50 Admission urgency

51. 51 ASA status

52. 52 Assessment of care

53. 53 Timing of admission and surgery

54. 54 Pre-operative care

55. 55 Transfers

56. 56 Transfer for surgery

57. 57 Care during transfer

58. 58

59. 59 Delays in transfer

60. 60 How long did transfer take?

61. 61

62. 62 Recommendation  National standards, including documentation for the transfer of all surgical patients, irrespective of whether they require intensive care need to be developed by regional networks.

63. 63 Time taken to decide surgery needed

64. 64 Who took consent?

65. 65 Should risk of death have been documented?

66. 66 Advisor opinion-risk of death if not documented

67. 67 Who took consent if death should have been documented?

68. 68 Recommendation  Consent by a senior clinician, ideally the one performing the operation should be normal practice in paediatrics, as in other areas of medicine and surgery. Documentation of grade confirms that this process has occurred.

69. 69 Recommendation  In surgery which is high risk due to co- morbidity and/or anticipated surgical or anaesthetic difficulty, there should be clear documentation of discussions with parents and carers in the medical notes. Risk of death should be formally noted even if difficult to quantify.

70. 70 Intra-operative care

71. 71 Grade of operating surgeon

72. 72

73. 73 Anaesthetic seniority

74. 74 Postoperative care

75. 75 Initial level of care

76. 76 Days between surgery and death

77. 77 End of life care

78. 78 Discussions after death

79. 79 Morbidity and mortality meetings

80. 80 Recommendations  National guidance should be developed for children that require end of life care after surgery.  Clinicians must make sure that appropriate records are made in medical notes about discussions after death. In addition it is mandatory that the name and grade of clinicians involved at all stages of are recorded in the medical notes and on anaesthetic and operation records.

81. 81 Recommendation  Confirmation that a death has been discussed at a morbidity and mortality meeting is required. This should comprise a written record of the conclusions of that discussion in the medical notes.

82. 82 Specific Care Review Michael Gough

83. 83 Specific care reviews  Specialist Paediatric Surgery  Neonatal surgery: gastroschisis, exomphalos  Necrotising enterocolitis (NEC)  Congenital Cardiac Surgery  Neurosurgery  Trauma (including head injury)  Non-traumatic illness

84. 84  20 th century disease  7% of low birth weight (500-1500g) babies  20-30% mortality  enteral feeding  microbial colonisation  Management:  Prevention  Early recognition  Responsible for 1/3 rd deaths in this study NEC - Overview

85. 85 NEC - Gestational age

86. 86 NEC - Management  Medical GI rest, antibiotics, TPN  Surgery Worsening blood tests X Ray signs Perforation  Much uncertainty

87. 87 NEC - Referral to paediatric surgeons

88. 88 NEC - Inter-hospital transfer  84/103 transferred  5/71 deteriorated during transfer  Transfer delayed in 9

89. 89 NEC - Consent Good practice: senior doctor

90. 90 NEC - Risk of mortality Advisors’ opinion

91. 91 NEC - Surgery Operating surgeon: 93/103: consultant; 4/97: senior trainee or staff grade; 4/103 NK

92. 92 NEC - Quality of care

93. 93 Recommendations  This survey and the advice from our specialist Advisors have highlighted the difficulties in decision-making during both medical management and the decision to operate in babies with NEC. A national database of all babies with NEC might facilitate this aspect of care and generate data upon which to base further research.

94. 94 Congenital cardiac surgery Overview  Data difficult to analyse  149 recognised procedures  UK Central Cardiac Audit Database: 36 more commonly performed operations 12 interventional procedures 2% 30-day mortality  19/54 deaths: hypoplastic left heart syndrome  Safe and Sustainable

95. 95 Congenital cardiac surgery Quality of care

96. 96 Neurosurgery - Overview  Trauma and non-trauma: 2 nd largest group  Review of Children’s Neurosurgery Services  National standards/models of care  Local provision versus access to specialist surgery  Establish an expert workforce (research, clinical)  Specialised support services  Assess centres  Agreed standards  Sustainable high quality service  Networks of local and specialised services

97. 97 Neurosurgery - Trauma deaths  Head injury: 19/25 trauma deaths  12/25 ≥ 15 years of age

98. 98 Neurosurgery – Trauma Quality of care

99. 99 Neurosurgery - Trauma Transfer delays  Delay in 5/10 cases where this could be assessed

100. 100 Neurosurgery: Non-trauma Quality of care  Peaks during infancy and teenage years  Majority related to haemorrhage or tumour

101. 101 Neurosurgery: Non-trauma Grade of staff

102. 102 Neurosurgery: Non-trauma Delays  Referral 3/34  Transfer 6/33

103. 103 Recommendations  Urgent completion of the “Safe and Sustainable Review of Children’s Neurosurgical Services” is required with implementation of the appropriate pathways of care that this is likely to recommend.  This should be followed by a further audit to ensure compliance with national standards and models of care for all children requiring neurosurgery.

104. 104 Specific care review  Similarities: transfer, delays, consultant input  Necrotising enterocolitis vulnerable population, increasing numbers, surgery appropriate for few, predetermined mortality collaborative research (prevention)  Cardiac surgery transferred semi electively very low mortality (1989: 193/295, 65%)  Neurosurgery emergency surgery, deficiencies very apparent S & S review crucial to improve care pathway

105. 105 Autopsies 1999 “Extremes of Age” 2011 “Are we there yet?” Has anything changed?

106. 106 Autopsies 1999  22 cases  “generally good”  Coronial cases:  Not enough histopathology  Reports “too brief”  Less than half autopsies by paediatric pathologists 2011  49 cases  All except one done by paediatric pathologists or neuropathologists

107. 107 What has changed?  Children are now seen as ‘special’  Autopsies are now the remit of specialist paediatric pathologists  Tissue sampling undertaken – despite the Human Tissue Act 2004  Coroners want specialists in this specific area

108. 108 What has changed?  Virtually all the autopsy reports were ‘excellent’  Benefit to families, clinicians, coroners & public health  Many reports were perhaps too detailed  Cost implications here?  If only adult autopsies were generally done as well

109. 109 Summary  NCEPOD has presented a wide ranging review of the organisation and delivery of children’s surgical services  Overall the peer review demonstrated a good standard of care  There is room for improvement both in hospital service provision and clinical care

110. 110 Summary  There is a need for children’s surgical services in the UK to be organised in a comprehensive and fully integrated fashion  National leadership is required to ensure networks are fully developed  Existing national standards for children’s surgery and anaesthesia requires rationalisation

111. 111