National Confidential Enquiry into Patient Outcome and Death Enquiry 2011: Clinical networks needed

27 October 2011

News release from NCEPOD:

National Confidential Enquiry into Patient Outcome and Death Enquiry 2011: Clinical networks needed to improve quality of care for children undergoing surgery

The largest case-based study into children who died after surgery has found that there was room for improvement in the care of 26% of patients despite the considerable advances made since the national enquiry's first report in 1989.

The report, entitled ‘Are We There Yet? A review of organisational and clinical aspects of children's surgery', comes from the National Confidential Enquiry into Patient Outcome and Death (NCEPOD) - part of the Clinical Outcome Review Programme commissioned and managed by the Healthcare Quality Improvement Partnership (HQIP).

Read the full report >>

The study is the first that includes a wide-ranging organisational survey of hospitals carrying out surgery on children, is now calling for UK-wide clinical networks to enhance the quality of the care that these children receive.

Co-author, NCEPOD Clinical Co-ordinator and Consultant Paediatric Anaesthetist, Dr Kathy Wilkinson expressed concern that care could have been better in over a quarter of the children in this study. She stressed that "it is important to note how much improvement has occurred in children's surgery with 71% receiving good care. However, there still much to be done to improve care for the rest of these patients".

The report reviewed the time taken between the decision to transfer sick children with complex health needs and their admission to a specialist centre for surgery. Dr. Wilkinson stated: "In many cases the transfer of these critically ill children from district general hospitals to specialist paediatric centres took more than six hours to organise and implement. Whilst this is often to be expected, perhaps to allow for stabilisation, Trusts must be better prepared to admit, assess and, when necessary, transfer these children as quickly as possible. Documentation about the transfer should be included in the case notes." She added: "There needs to be national standards for the transfer of children who require surgery and hospitals must develop robust policies for this."

Parents and carers of the children in this study were often provided with limited information about the diagnosis and treatment resulting in inadequate consent procedures. Worryingly, the report also found that there was little discussion and documentation about the risk that a child might die following surgery, and when this became inevitable end-of-life care planning was often lacking.

Co-author Dr David Mason, NCEPOD Clinical Co-ordinator and Consultant Paediatric Anaesthetist, commenting on the organisation of children's surgery, said: "I was concerned to find that only half of the hospitals in our review were part of a clinical network which is the model that has been recommended to provide comprehensive care for children's surgery."

NCEPOD also found cases where hospitals lacked adequate numbers of children trained nurses to provide immediate care for sick children when admitted, and that many hospitals did not have appropriate systems in place for the management of pain following children's surgery. Dr Mason also emphasised the need for track and trigger guidelines for sick children in order to escalate care to senior clinicians when a child's condition deteriorates: "It is disturbing that one in five of the hospitals we looked at did not have a policy to identify particularly sick children and to manage them appropriately. We need to ensure that there are nursing and medical staff with the appropriate skills to look after these very sick children, including staff with experience to manage acute pain."

Two-thirds of deaths were in infants under the age of one year, many of whom had been born prematurely. Just under half of the premature group were suffering from necrotising enterocolitis (NEC), a severe condition affecting the gut in very small babies. The condition is becoming more prevalent as younger babies survive due to advances in neonatal care. Reviewing the findings of post-operative care, Professor Michael Gough, co-author and NCEPOD Clinical Co-ordinator in Surgery, commented that "the UK is leading on a new study into preventative measures to protect babies from developing NEC. Nevertheless when NEC does occur there is considerable uncertainty about the best methods of treatment and all those involved in the care of these babies need to work together to reduce the mortality of the condition". He called for a more collaborative approach to research in this area.

Key Findings

Surgery

• 66% of deaths occurred in very sick babies under one-year-old, and 63% of these infants were born prematurely.
• 1/3 of all deaths were in infants with necrotising enterocolitis (NEC).
• 2/3 of children were transferred to a specialist tertiary paediatric centre for surgery.
• 84% of deaths occurred in specialist tertiary paediatric centres, and 2% in a district general hospital reflecting the policy of transferring sick children to a major centre.
• In 20% of cases there was a lack of evidence of a pre-surgery discussion with parents or carers about the operation and its risks.
• End of life care was not always considered when a child was nearing the end of life. In only 112/235 cases was this considered when it was judged to be appropriate.

Organisation of care

• Fewer than half of the NHS hospitals in the survey were part of a surgical clinical network.
• Nearly one-in-five hospitals did not have a hospital-wide policy for the identification and management of a sick child.
• National acute pain management recommendations following surgery were not followed by more than a quarter of hospitals.

Key Recommendations

Surgery

• Trusts must put in place transfer policies for very sick children and improve documentation.
• Trusts must provide clear documentation of discussions with parents and carers in the medical notes, and formally record the risk of death.
• National guidance should be developed for children that require end-of-life care after surgery.

Organisation of care

• It is vital to set up UK-wide clinical networks to ensure the comprehensive and integrated delivery of high quality care for children who undergo surgery.
• Children admitted for surgery must be cared for by specialised paediatric medical and nursing staff.
• All hospitals that admit children as inpatients must have a policy for the identification and management of seriously ill children. This should include a track and trigger procedure to escalate care to senior clinicians.
• Existing guidelines for acute pain management for children must be implemented by all hospitals that undertake surgery in children.

NCEPOD Chairman Mr Bertie Leigh said that this latest report was a valuable snapshot of the service that very sick children receive. But, he admitted there should be no complacency: "I do not know whether we should say that 71% receiving good care is acceptable, or whether it is an outrage that over a quarter of children who died following surgery received care that the advisors would not accept from themselves."

Mr Leigh said that he found that the most disappointing feature of the findings was in the organisation of care: "In every area that the authors studied they found room for improvement, reflecting a failure to meet the organisational standards that our children are entitled to expect."

He called on managers and clinicians to read the report because "it is constructive and hard-headed, putting forward suggestions that are not radical, controversial or expensive but could deliver real benefits to the service children receive".

Read the full report >>