Independent investigation report into the care and treatment of Yusuf

At times there was conflict between relatives, paramedic teams and hospital staff while Yusuf’s family attempted to access urgent care. National research should be commissioned to look into why and when parents raise concerns about their children’s acute presentation to health services. There is a need for the development of a mechanism which will objectively measure this, enable empowerment for parents without conflict and be embedded into a system of escalation which enables the safest response. This could build upon the parental concerns work being undertaken by the Great North Children’s Hospital (Newcastle Upon Tyne NHS Foundation Trust) and other national and international initiatives. An approach by the SPOT programme to the National Institute for Health and Care Research (NIHR) might help facilitate research funding.

Yusuf’s mother was expecting to see a GP and not a primary care nurse practitioner when she made an appointment for Yusuf. Patients who make appointments with their GP surgery should be told which healthcare professional they (or their family member) will be seeing, including their name and position.

Protocols were appropriately considered in transporting Yusuf to Rotherham Hospital, but there were difficult conversations between Yorkshire Ambulance Service staff and the distressed parents as they sought help from the paramedics for their son who was unwell. This added a slight delay to the transfer. • All clinical teams are to be required to attend the regular conflict resolution training sessions provided by the Trust to support the management of conflict in patient care. • The training should be extended to include having difficult conversations, working with worried parents and cultural differences in conflict. • This case should be included as a case study as part of the face-to-face training provided.

Difficult conversations took place between relatives and hospital staff as Yusuf’s family attempted to access urgent care. • All clinical teams are to be encouraged to attend simulation communication training on conflict in patient care. • It is advised that a reminder be given to staff about responding to parent concerns (as per the amber flag in sepsis guidance). History taking and listening carefully to a concerned parent or relative should be uppermost in the minds of staff presented with a very sick child.

We did not see evidence of cannula patency17 having been documented and cannot be assured of the quality of cannulation management. The Trust must ensure that all staff giving antibiotics intravenously check the line is unobstructed before each dose and document regular checks on peripheral IV lines when in situ (visual infusion phlebitis (VIP) score). We noted time delays between the prescribing of drugs and their administration. The Trust must ensure that prescribed drugs (in particular antibiotics) are given as soon as possible after prescribing decisions are made. This should be audited in the emergency department (ED), the wards and the PICU.

Different paediatric observation tools (for example, the Paediatric Observation Priority Score (POPS) and Paediatric Early Warning System (PEWS)) were used by different providers across the care pathway. We are aware of the efforts of NHS England, the Royal College of Nursing and the Royal College of Paediatrics and Child Health (RCPCH)9 to agree a national PEWS system10 through the System-wide Paediatric Observations Tracking (SPOT) programme, We understand there are plans to launch this for paediatric inpatients this year. We would recommend that all Trusts are encouraged to use the national version11 on its launch and that work continues to align POPS (in use in emergency departments) with the new PEWS tool12.

The assessments in primary care could have been more comprehensive (although there was no evidence this impacted the outcome). a. All primary care clinicians who are assessing sick children should have training specific to that assessment, for example, Spotting the Sick Child b. When assessing sick children, clinicians should be aware of available local and national guidelines, for example: NICE Guidance: Feverish Children – Risk Assessment NICE Risk Stratification Tool for Children Under 5 years or UK Sepsis Trust GP Paediatric Sepsis Decision Support Tool for Children Under 5 years NICE Risk Stratification Tool for Children Aged 5–11 Years or UK Sepsis Trust GP Paediatric Sepsis Decision Support Tool for Children Aged 5–11 Years

While they did not affect the prompt access to care, the clinical examinations and physiological observations carried out by the paramedics did not fully comply with local or national guidelines. Essential examinations and physiological observations must be completed and documented in the clinical records in line with Joint Royal Colleges Ambulance Liaison Committee (JRCALC) guidelines. These must include heart rate, capillary refill time, respiratory examination (including the work of breathing (WOB)14 and auscultation15) and the hydration status for children who present as unwell.

There were minor recording errors that IT solutions could solve. Namely that the ST6 doctor was still being recorded as a foundation doctor, the child’s height was pulled through from SystmOne16 and the BMI calculations used height/weight (kg), which is more appropriate for adults, when BMI centiles are more appropriate in paediatric care. Accurate weight/height and BMI centiles are essential in paediatric decision-making. The discharge letter appears to use the Early Warning Score (EWS) as the field in the EPR (when POPS is used for children). • The Trust should examine why there remain problems with changing the grades of staff in the electronic patient record and resolve this for the ST6. They must also establish if it is a wider issue. • SystmOne should be reviewed with paediatrics in mind. Height and weight recordings should be pulled into records accurately and BMI centiles should be used instead of the adult oriented calculations for BMI. It should also be clear whether POPS or EWS scores have been assessed.

Yusuf did not have a post-mortem, which has meant there was a missed opportunity to understand his underlying pathology more definitively. • The Trust should review its criteria and decision-making in relation to undertaking hospital post-mortems for children who die unexpectedly. This should result in readily available Trust guidelines, considering the values of a multicultural population. • Support given to clinicians facing conversations with families in difficult situations should be reviewed to ensure it is adequate, in particular the view of PICU staff should be considered.

Parents and relatives raised repeated concerns over time and across providers that his presentation was not his usual self. They took videos and pictures to document his presentation in an attempt to demonstrate their concerns. The history of concerns over the preceding week prior to admission was not clearly apparent in shared records across the system and relied on parents to repeatedly raise them. • On assessment of the sick child the collation of observations across different providers and locations needs to recognise the history of parental concerns/multiple presentations to different services and inform decision making when determining the need for escalation. • The SPOT programme should look at ways of embedding patterns of consistent or repeated concerns from parents (and clinicians) into future strategies for assessing the escalation requirements of a sick child.

A functional paediatric pulse oximeter13 was not used when Yusuf attended the GP surgery for his appointment. All practices should have access to age-appropriate equipment, including pulse oximeters, so clinicians can accurately assess sick children when they present.

The administration of oxygen was not in line with national guidance although there was evidence that the amount given did have a positive effect on the patient’s condition. For children who have been assessed as hypoxic, oxygen must be administered in line with JRCALC guidelines.

Medical staffing levels were below expected levels on the night of 15 November. • The Trust should assess medical and nursing staffing levels in the paediatric UECC overnight to ensure capacity meets demand. This should include the number of clinicians, their seniority and their level of paediatric experience. • The Trust should review whether to have paediatricians in the paediatric UECC at all times who can oversee the care of children presenting with medical complaints. • The Trust should review the feasibility of having a children’s assessment unit, ideally co-located with the UECC, open 24 hours a day with medical and nursing staff trained in the care of acutely unwell children. We understand that these recommendations have already been acted on at Rotherham; a progress report on the changes would be helpful.

A nutritional risk assessment (STAMP) was not completed. The impact of pre-admission reduced nutritional intake was not assessed. • The Trust should ensure the STAMP screening is completed accurately on admission as per Trust policy. • The Trust should review its STAMP guidance to ensure that pre-admission nutritional status is adequately considered in scoring and care planning. The Trust should make clear what action is expected when a high risk malnutrition score results from STAMP screening with contingencies agreed for out of hours and weekend assessments.

There was a lack of clarity in primary care about accessing the opinion of paediatric services at Rotherham Hospital. To avoid future ambiguity, a written protocol should be produced for the agreed pathway and criteria for referring on for further paediatric assessment from primary care. This should include: the role of the children’s assessment unit and the role of the paediatric urgent care centre, how to access an urgent paediatric opinion and clarity on direct access to the children’s ward.

Given the clinical findings, a pre-alert should have been sent to the receiving hospital, but this did not take place. Pre-alert protocols must be adhered to so that receiving hospitals can prepare for and respond appropriately to the arrival of very sick patients.

Staff were unaware of the website resource Healthier Together which contains information leaflets and advice (for safety netting). • Parents should be directed to the Healthier Together website for written patient information. • Nursing and medical staff working in the paediatric UECC should be aware of this resource. Leaflets should be printed if parents do not have internet access.

Staff were unaware of the website resource Healthier Together which contains information leaflets and advice (for safety netting). • Parents should be directed to the Healthier Together website for written patient information. • Nursing and medical staff working in primary care should be aware of this resource. Leaflets should be printed if parents do not have internet access.