This document outlines the background, aims, methods, and key findings of a study exploring factors in the care of children aged 17 years and younger who died prior to discharge or within 30 days of emergency or elective surgery. Some key points: - The study involved questionnaires to hospitals about their organizational structure and case reviews of 597 pediatric surgical deaths over 2 years. - Organizational findings included variability in clinical networks and policies around transfer, staffing, and facilities for pediatric patients. - Case reviews examined factors like pre-operative care, intra-hospital transfer, delays, consent practices, and end-of-life care. - Specific conditions reviewed included necrotizing enterocolitis,

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Method
Hannah Shotton

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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

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

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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

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

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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

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

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

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Data returns - organisational
 77% return rate

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Data returns – peer review

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Overview data - organisational

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Overview data – peer review

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Organisational Data
David Mason

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Workload

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Workload

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

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Networks

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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

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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.

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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

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Team working

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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.

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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.

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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

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

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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.

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

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Theatre scheduling

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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

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

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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.

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

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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

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Anaesthetic assistance
Specialised staffing

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Recovery staff
Specialised staffing

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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.

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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)

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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

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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.

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

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Acute pain management

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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

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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.

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Peri-operative care
Kathy Wilkinson

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Comparisons 1989, 1999, and 2011 reports
Publication date
Study duration
1989
1 year
1999
1 year
2011
2 years
Age (years,
inclusive)
0-9 0-15 0-17
Population Cardiac, Non
cardiac
Non Cardiac Cardiac, Non
cardiac
Deaths reviewed 262/295 112 378
Deaths
identified
417 139 597
%reviewed/
identified
62.8% anaes
70% surg
80% 63%

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Age and gender

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Location of death

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Diagnostic group

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Admission urgency

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ASA status

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Assessment of care

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Timing of admission and surgery

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Pre-operative
care

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Transfers

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Transfer for surgery

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Care during transfer

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Delays in transfer

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How long did transfer take?

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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.

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Time taken to decide surgery needed

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Who took consent?

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Should risk of death have been
documented?

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Advisor opinion-risk of death if not
documented

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Who took consent if death should
have been documented?

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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.

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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.

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Intra-operative
care

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Grade of operating surgeon

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Anaesthetic seniority

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Postoperative
care

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Initial level of care

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Days between surgery and death

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End of life care

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Discussions after death

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Morbidity and mortality meetings

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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.

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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.

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Specific Care Review
Michael Gough

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

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

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NEC - Gestational age

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

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NEC - Referral to paediatric surgeons

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

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NEC - Consent
Good practice: senior doctor

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NEC - Risk of mortality
Advisors’ opinion

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

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NEC - Quality of care

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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.

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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

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Congenital cardiac surgery
Quality of care

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Neurosurgery - Overview
 Trauma and non-trauma: 2nd 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

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

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Neurosurgery – Trauma
Quality of care

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

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

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Neurosurgery: Non-trauma
Grade of staff

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

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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.

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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

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

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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

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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

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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

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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

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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

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