Child Death

Noted (AI summary) The Trust details the role of the GIC as detailed in the service specifications published by NHS England for Gender Identity Services for Adults (Non-Surgical Interventions) and states that it is working with NHS England and other providers to develop innovative ways of reducing the waiting times. NHS England is undertaking a review of adult Gender Dysphoria Clinics, with a report due in Autumn 2025 to inform a new service specification for 2025/26. They are also working to increase capacity in children and young people's gender services.

Noted (AI summary) • NHS England has produced a national framework and operational guidance for autism assessments. • The operational guidance suggests that Integrated Care Boards (ICBs) should ensure that all ages can access autism assessments. • Birchills Health Centre reviewed J.A’s case in a clinical meeting on 19.01.2023 and more recently on 02.02.2026 as part of their child protection meeting. • Birchills Health Centre identified that more comprehensive record keeping including clearer details of fluid intake should be recorded in assessing any child with risk of dehydration. • Birchills Health Centre had a presentation on identification of dehydration in children to help remind clinicians on most effective ways of assessing hydration status.

Noted (AI summary) The North East and North Cumbria Integrated Care Board acknowledges the concerns, noting the existing systems for patient record sharing via the Great North Care Record and the responsibility of medical professionals within multidisciplinary teams. They also refer to NHS England guidance on outpatient services. Moorbridge School has conducted a thorough review of their practices related to information sharing and safeguarding and will revisit and reinforce staff understanding of these policies through annual refresher training. 49 Marine Avenue GP Surgery acknowledges shortcomings and will strengthen communication with secondary care, improve multidisciplinary communication, and review safeguarding procedures. They will also implement new guidelines for monitoring, supporting families, and provide staff training in eating disorder management. The Trust has implemented a restructure within the Dietetics Service, introduced mandatory training for staff on safeguarding children, and will discuss information sharing between primary and secondary healthcare at the NENC GP Provider interface group by October 2025. The Department of Health and Social Care, and NHS England have programmes of work underway which should assist in preventing future deaths connected to this issue and aim to have a Single Patient Record processing information by 2028.

Noted (AI summary) RCEM highlights existing standards requiring paediatric early warning scores, results from national audits, involvement in designing a revised paediatric early warning score, and advocacy for better staffing and resources. The RCN states it is not the regulator for nurses and has no remit to address the concerns, but offers learning resources and highlights its work on the National Early Warning System (NEWS2) Observations Tracking Programme and collaboration with RCPCH on emergency care standards. The Trust has implemented training and induction enhancements, updated the Emergency Department Nurse in Charge checklist, mandated completion of an ED Paediatric Discharge Checklist, and is undertaking ongoing monitoring and training to improve standards of practice. The RCPCH is in the process of updating its Facing the Future Standards for Emergency Care, to be published later in 2025, which will clarify that observations are part of holistic care and repetition is dependent on the child’s well-being, alongside clarification around frequency of observations.

Noted (AI summary) The practice has amended its process for new baby registrations, including removing the 'unregistered babies' folder and updating the Docman system to allow electronic rejection of incorrectly sent correspondence. NHS England acknowledges the concerns about the NHS Pathways algorithm and details its function. It highlights existing access to clinical support for health advisors and refers to work by the Regulation 28 Working Group. The trust has already taken several actions including auditing the call, sharing learning through various channels, and providing training to staff. They have also reviewed and amended the NHS Pathways cardiac arrest algorithms following a previous case. The CQC contacted the provider, Unity Health, who confirmed they reviewed their processes and implemented a new system for creating a new profile when they are notified about a birth. They flagged this issue with the ICB and will be sharing details of this incident with the CQC’s Primary Care inspection teams.

Noted (AI summary) Resuscitation Council UK provides context on its neonatal resuscitation courses (NLS, OH-NLS, ARNI) and states that the NLS approach and algorithm adequately address the potential causes of non-response during newborn resuscitation. The Y&H Neonatal ODN has regional guidelines on surfactant administration and provides education sessions, and has written to all neonatal units in their network and other Neonatal ODNs to share these guidelines and draw attention to the Coroner's concerns. BAPM acknowledges concerns about LISA procedures and reversible causes of cardiac arrest, and while stating that universal consultant approval for LISA is not necessary, they plan to send a safety alert to members and stakeholders drawing attention to relevant recommendations in their Frameworks for practice. The Trust updated its risk register to include risks related to service provision, staffing, and protocols, and are working with the ODN and Commissioners. They also detail actions taken in response to the concerns raised, including changes to the SJUH designation and mitigations for risks due to lack of centralisation. RCPCH acknowledges concerns regarding LISA guidelines and reversible causes of cardiac arrest but defers to BAPM and RCUK for specific guidance and actions, noting they expect members to follow Resuscitation Council UK guidance. The Department acknowledges the concerns regarding maternity services at Leeds Teaching Hospitals NHS Trust, particularly staffing levels and the delay in centralizing services due to the New Hospital Programme's revised schedule, but defers to the Trust for specific responses and emphasizes existing duties for Trusts to maintain adequate staffing. This is an exhibit referenced by another response. It is a LISA checklist.

Noted (AI summary) NHS England is developing a Reasonable Adjustment Digital Flag to record information about patients, including if they are autistic or have a learning disability, and their reasonable adjustment needs. The RCEM highlights existing resources such as the Learning Disabilities Toolkit and involvement in the development of the ED version of the national paediatric early warning system (nPEWS). They feel unable to comment on inpatient care and state provision of learning disability nurses is outside their remit. CQC acknowledges the concerns but states that commenting on the specific guidance is outside of their regulatory scope. They are reviewing the case in line with their incident guidelines. The Trust is developing a Learning Disability Admission Checklist to provide prompts for staff in Emergency Departments and establish a system to record reasonable adjustments, planned for Quarter 3, 2025. RCPCH's revised Facing the Future: Emergency Care Standards will be published in Autumn 2025 and shared with relevant professionals, and will include a standard on EDs having a lead professional for CYP with complex needs and access to advice from a Learning Disability Liaison Nurse. The Department highlights the upcoming 10-Year Health Plan which will improve awareness of learning disability and autism within the health and social care system. It also references Martha's Rule which gives patients and their families the right to initiate a rapid review of their case.

Noted (AI summary) The RCOG expresses condolences and explains their guideline development process, stating that the Shoulder Dystocia guideline will be updated to include a section on alternative maneuvers but that there is not currently enough evidence to recommend the shoulder shrug maneuver. They emphasize the importance of effective training using existing recommended maneuvers.

Noted (AI summary) The Partnership acknowledges the concerns but cannot comment on the specific reasons for the original CDOP decision due to missing documentation. It provides assurance regarding the current child death review process, including improved data storage, family involvement, and panel operations. The Royal College of Radiologists acknowledges the concern, highlights the shortage of radiologists in the UK and the importance of written evaluations of imaging, and supports regional imaging networks to enable equitable access to expertise and resources. While willing to raise cardiac screening with England Boxing, the department is unable to provide additional funding. They highlighted existing support for Cardiac Risk in the Young through Sport England. The Royal College of Emergency Medicine acknowledges the concerns and provides context regarding the clinical management in the case. It references existing curriculum and resources related to the issues raised, but describes no specific actions taken or planned. The ICB will seek assurance of compliance with 'Shock to Survival' recommendations through Clinical Quality Review Meetings with relevant providers. It will also have access to GENOME dashboards to monitor patient safety surveillance and track progress against quality priorities. The Trust highlights several changes and quality improvements already made since the incident, including a new escalation process ('Martha's Rule'), a weekly meeting to discuss potentially harmed patients, and reviews by the CQC. All recommendations from previous Regulation 28 reports have been actioned. The Faculty of Intensive Care Medicine acknowledges the concerns, explains the role of focused echocardiography in intensive care, and highlights curriculum updates and guidelines supporting its use. They also express support for reliable provision of emergent echocardiography and image storage, but do not commit to specific actions. NHS England and the British Heart Foundation co-funded a sudden cardiac death pilot to develop mechanisms for post-mortem genetic testing, best practice pathways and engagement with patient groups. They also expect NHS Trusts to ensure protocols are appropriate in the wake of the death.