A report on the investigation into the death of Elizabeth Dixon and a series of recommendations in respect of the failures in the care she received from the NHS.
Elizabeth Dixon was a child with special health needs. She had been born prematurely at Frimley Park Hospital on 14 December 2000. Following treatment and care at Great Ormond Street Hospital and a children’s hospice she was nursed at home under a care package. As a result of a failure to clear a tracheostomy tube she asphyxiated and was pronounced dead at Frimley Park hospital on 4 December 2001.
The investigation chaired by Dr Bill Kirkup looked at the events surrounding the care of Elizabeth and makes a series of recommendations in respect of the failures in the care she received from the NHS.
- Hypertension (high blood pressure) in infants is a problem that is under-recognised and inconsistently managed, leading to significant complications. Its profile should be raised with clinicians; there should be a single standard set of charts showing the acceptable range at different ages and gestations; and a single protocol to reduce blood pressure safely. Blood pressure should be incorporated into a single early warning score to alert clinicians to deterioration in children in hospital.
- Community care for patients with complex conditions or conditions requiring complex care must be properly planned, taking into account and specifying safety, effectiveness and patient experience. The presence of mental or physical disability must not be used to justify or excuse different standards of care.
- Commissioning of NHS services from private providers should not take for granted the existence of the same systems of clinical governance as are mandated for NHS providers. These must be specified explicitly.
- Communication between clinicians, particularly when care is handed over from one team or unit to another, must be clear, include all relevant facts and use unambiguous terms. Terms such as palliative care and terminal care may be misleading and should be avoided or clarified.
- Training in clinical error, reactions to error and responding with honesty, investigation and learning should become part of the core curriculum for clinicians. Although it is true that curricula are already crowded with essential technical and scientific knowledge, it cannot be the case that no room can be found for training in the third leading cause of death in western health systems.
- Clinical error, openly disclosed, investigated and learned from, must not be subject to blame. Conversely, there should be zero tolerance of cover up, deception and fabrication in any health care setting, not least in the aftermath of error.
- There should be a clear mechanism to hold individuals to account for giving false information or concealing information relating to public services, and for failing to assist investigations. The Public Authority (Accountability) Bill drawn up in the aftermath of the Hillsborough Independent Panel and Inquests sets out a commendable framework to put this in legislation. It should be re-examined.
- The existing haphazard system of generating clinical expert witnesses is not fit for purpose. It should be reviewed, taking onto account the clear need for transparent, formalised systems and clinical governance.
- Professional regulatory and criminal justice systems should contain an inbuilt ‘stop’ mechanism to be activated when an investigation reveals evidence of systematic or organisational failures and which will trigger an appropriate investigation into those wider systemic failures.
- Scrutiny of deaths should be robust enough to pick up instances of untoward death being passed off as expected. Despite changes to systems for child and adult deaths, concern remains that without independent review such cases may continue to occur. The introduction of medical examiners should be reviewed with a view to making them properly independent.
- Local health service complaints systems are currently subject to change as part of wider reform of public sector complaints.
- Implementation of a better system of responding to complaints must be done in such a way as to ensure the integration of complaints into NHS clinical governance as a valuable source of information on safety, effectiveness and patient experience.
- The approaches available to patients and families who have not been treated with openness and transparency are multiple and complex, and it is easy to embark inadvertently on a path that is ill-suited to deliver the answers that are being sought. There should be clear signposting to help families and the many organisations concerned.