Dear Dr Bell

Re: Esma Guzel, aged 5 years

Thank you for sharing your Letter of Concern with us regarding the tragic and untimely death of Esma Guzel. We were saddened to read the circumstances surrounding this child’s passing and have discussed with senior colleagues within the RCPCH and with the RCGP.

You have asked us to:
• consider the facts of the case
• form a view on whether educational messages on ‘rare causes of common symptoms’ should be circulated to our members
• form a view on whether the algorithms generated by the 111 service need further modification to prevent a future death of this kind.

The RCPCH is a professional membership body responsible for training and examining paediatricians, setting professional standards and informing research and policy for children’s health services and the paediatric workforce. Given that we do not have all the details of the investigation, the RCPCH is unable to comment on the specifics of the case.

In considering the information that we do have about this case, I am pleased to set out below the standards of care that we would expect from local service planning, and other work from the RCPCH where we feel a difference can be made.

Facing the Future – standards for paediatric care

Together for Child Health

These standards1 apply across the unscheduled care pathway to improve healthcare and outcomes for children. They focus on the acutely mild to moderately unwell child and were jointly developed with the Royal College of Nursing and Royal College of General Practitioners.

The overarching principles agreed when developing this work that are relevant to the context surrounding this child’s passing are as follows:
• every child should have timely access to high-quality unscheduled care services that are safe, effective and caring, that promote good health and wellbeing and that reduce the impact of illness on the child and their parents and carers
• service providers, planners and commissioners to work together across hospital and community services, primary and secondary care and paediatrics and general practice to design and deliver efficient and effective unscheduled care in a geographical network which is responsive to the needs of local children and their parents and carers. 1https://www.rcpch.ac.uk/resources/facing-future-together-child-health 5-11 Theobalds Road London WC1X 8SH
-

-

A summary of standards that we feel are most relevant to ensuring children receive safe and timely unscheduled care include:
• GPs assessing or treating children with unscheduled care needs have access to immediate telephone advice from a consultant paediatrician.
• Each acute general children’s service provides, as a minimum, six-monthly education and knowledge exchange sessions with GPs and other healthcare professionals who work with children with unscheduled care needs.
• Children presenting with unscheduled care needs and their parents and carers are provided, at the time of their discharge, with both verbal and written safety netting information, in a form that is accessible and that they understand.
• Acute general children’s services work together with local primary care and community services to develop care pathways for common acute conditions.
• There are documented, regular meetings attended by senior healthcare professionals from hospital, community and primary care services and representatives of children and their parents and carers to monitor, review and improve the effectiveness of local unscheduled care services.

We have collected some best practice examples2 on our website to share and encourage innovation across local service planning and delivery. We anticipate local discussions around urgent care pathways to gather momentum as the Health and Care Act in England has formalised the creating of Integrated Care Boards (ICB). The creation of an executive children’s lead on each ICB will provide leadership and accountability for the important service issues in child health.

Standards for children and young people in emergency settings

These standards3 aim to ensure that urgent and emergency care is fully integrated to ensure children are seen by the right people, at the right place and in the right setting. As the standards document describes, the future of urgent and emergency care for children is dependent upon building whole system networks that harness expertise within the subspecialty of paediatric emergency medicine that links across all urgent care and community settings.

Developing robust care pathways, building capability amongst professionals (such as GPs, health visitors, pharmacists and paramedics), and providing seamless links via intuitive governance and information sharing platforms will enable children to be managed by the right person, in the right place, at the right time and as close to home as is possible and safe to do so.

Paediatric Early Warning System and safety netting

We are collaborating with NHS England and the Royal College of Nursing to develop a single nationally validated Paediatric Early Warning score and system, (PEWS) for England. In 2020, the NHS SPOT (System-wide Paediatric Observations Tracking) Programme was launched.

A standardised paediatric early warning chart that records regular observations and highlights parameters for early escalation in acute hospital settings is currently being actively tested in several pilot Trust sites. There are future plans to extend an adapted framework of the acute charts to ambulance, NHS111 and primary care settings as part of a wider NHSE SPOT Programme led by the NHSE CYP Transformation Team. 2https://www.rcpch.ac.uk/resources/facing-f

The RCPCH hosts patient safety resources for its members and other health professionals via dedicated sections on the main RCPCH website and its focused microsite ‘QI Central’4, with quality improvement projects and open access educational resources in patient safety across a breadth of topics including clinical governance, situation awareness, patient-centred care, human factors and early detection of deterioration. A dedicated Patient Safety microsite and educational podcast series is currently in development for projected launch in 2023.

We also signpost members to online learning resources to help paediatricians with ‘Spotting the Sick Child’. This contains over five hours of clinical footage of real patients, with learning pointers to help users focus on key themes. The user will learn how to assess seven common symptoms, which includes abdominal pain.

111 algorithms

It was useful to hear about the change to the 111 algorithms as a result of learning from the circumstances surrounding Esma’s passing. The pathways used to inform 111 are currently developed and managed by NHS Digital to the NHS in England and to individual users, including but not limited to NHS Pathways and 111online.nhs.uk. The RCPCH are not required to and do not endorse these pathways but paediatricians represent the RCPCH to provide clinical advice and expertise to inform their shaping and to provide clinical expertise on ad hoc queries and patient safety concerns.

The RCPCH will take up further discussions with NHS Pathways to understand the changes made to these algorithms and to consider whether future work is needed to ensure all children who are deteriorating are referred to the appropriate acute paediatric health setting. The Academy of Medical Royal Colleges are in active discussion with NHS Digital about future arrangements for national clinical assurance of pathways that reflects the most up to date guidance and expertise. The RCPCH will be supporting the Academy by providing paediatric subject matter expertise to the clinical assurance workstreams.

Separately, during the pandemic, the RCPCH supported the NHS 111 service by encouraging paediatricians who were shielding or not able to work in health settings for any reason to work in core NHS 111 centres to help manage the burden of high volume calls at that time. The NHS England CYP Transformation Team evaluated this pilot to understand feasibility of including paediatric expertise within NHS 111, and its impact on service delivery. The data showed that enhanced paediatric support within NHS 111 CAS is likely to reduce the large volume of children advised to attend ED or primary care, while improving the families’ experience.5

Next steps

Thank you for reminding us of the importance of this work. Your report will be shared further with our Quality in Clinical Practice committee for further discussion this Autumn, and any further opportunities that the RCPCH identify to ensure a death of this kind is prevented in the future will be established and taken forward at this committee.

We will also continue to collaborate and support our colleagues at the Royal College of General Practice on promoting safe and effective pathways of care for children and young people. We are committed to carrying out the actions needed to ensure standards of care are maintained and the 4https://qi

child health workforce more broadly is represented in national discussions on children’s urgent and emergency healthcare, and patient safety.

Dear Dr Bell Inquest into the death of Esma Guzel

I am writing in response to the Regulation 28 report received from HM Senior Coroner, dated 1st June 2022. This follows the death of Esma Guzel who sadly passed away on 10th May 2019. This was followed by an investigation and inquest which concluded on 23rd March 2022, and which NHS Pathways gave evidence at. I am Dr and am writing in my capacity as Chief Clinical Officer, NHS Pathways, NHS Digital.

NHS Pathways is the clinical decision support software (CDSS) used by all 111 service providers, and some 999 ambulance trusts in England. For information, we have included a short summary of the functions that NHS Pathways performs and the governance that underpins it (containing background information on NHS Pathways) in Appendix A.

I would like to reiterate my sincerest condolences to the family of Esma Guzel.

HM Coroner has raised the following matters of concern with regards to NHS Pathways:

1. The 111 algorithm has been subject to modification in the light of these events, but I remain concerned that there is
a. no detailed assessment of the degree of parental concern,
b. no accommodation of the prior direct review by a general practitioner,
c. and no consideration of the timing of the request for advice, when reaching a disposition that does not involve referral to paediatric services: and
2. I have heard in evidence that an educational message on ‘rare causes for common symptoms’ could be circulated as a case report, but take the view that the lead professional bodies for both general practice and child health should consider how such information is effectively disseminated, and whether the algorithms and dispositions

enquiries@nhsdigital.nhs.uk

generated by the 111 service need further modification to maximise the chance of expedited optimal care for what is acknowledged to be an uncommon condition. I have heard in evidence that the 111 service is the default safety net arrangement in such circumstances, and this therefore requires endorsement by your professional bodies, if it is to command the confidence of patients, parents and practitioners as a definitive safety net.

NHS DIGITAL’S RESPONSE

To specifically address the concerns raised:

1) The 111 algorithm has been subject to modification in the light of these events, but I remain concerned that there is:
a. no detailed assessment of the degree of parental concern

NHS Pathways currently has a question that considers parental concern within the context of other signs of general illness that result in an inability to perform normal activities (known as ‘functional impairment’). The supporting information for this question (visible to health advisors) states, “The individual or the carer may feel that something is seriously wrong”. Answering positively to this answer stem would be a positive response to functional impairment. This feature is included within the “vomiting blood pathway” for children aged over 5 and under 16 years old (as well as many other pathways). In this pathway the combination of the answers to the questions will result in a disposition which is mapped to either a Category 3 ambulance, ‘Primary Care within 1 hour’ or ‘Primary Care within 2 hours’. The lowest level of care within the vomiting blood pathway for children aged over 5 and under 16 years old is mapped to ‘Primary Care within 2 hours’ for further assessment by a clinician. Please see below for a screenshot of the ‘functional impairment’ question.

enquiries@nhsdigital.nhs.uk

Assessing parental concern through telephone triage is challenging as it is highly variable and subjective, with other discriminators such as physical signs of organ dysfunction provide stronger discriminatory accuracy for severe illness in most cases. NHS Pathways therefore assesses parental concern as described above and this, in the context of other symptoms also presenting, is taken account of in the disposition reached. It is critical that an Urgent and Emergency care triage system such as NHS Pathways ensures that patients’ symptoms are assessed in a timely manner so that the appropriate level of care can be offered rapidly and safely. NHS Pathways considers that providing a more detailed assessment of parental concern at this stage of the triage would be challenging for a health advisor and may result in delays in signposting to the next level of care.

Esma’s case was thoroughly reviewed by the NHS Pathways team to identify any potential learning and, following this, changes were made to the vomiting blood pathways to improve the identification of ‘critical illness’. The potential critical illness triage assessment includes additional questions on breathlessness and confusion. These additional questions offer increased sensitivity to detect how unwell a child is and detect organ dysfunction and potential deterioration.

Had these critical illness triage assessment questions been asked as part of Esma’s assessment, if symptoms of breathlessness and confusion were identified, the disposition reached would have been a Category 3 ambulance. A Category 3 ambulance means that 90% of incidents are responded to within 2 hours.

The above changes were approved by members of the National Clinical Governance Group (including The Royal College of Paediatrics and Child Health) as being a sensitive marker of critical illness in children and made within the system in Release 29 which was initially deployed through ‘early adopter testing’ on 1st November 2021, then widescale deployment from 24th November 2021.

b. no accommodation of the prior direct review by a general practitioner

NHS Pathways assesses symptoms at the time of the call. If all patients who had a previous encounter with a healthcare provider were automatically transferred to a clinician this would prevent the initial NHS Pathways assessment occurring which has the potential to prevent a timely generation of an urgent disposition such as an ambulance dispatch. It is also not possible to interrogate previous encounters as part of the NHS Pathways assessment such to only transfer some to a clinician, as this would require reliance on caller’s recollection and knowledge, and health advisors to use discretion, neither of which is clinically safe or appropriate for telephone triage by non-clinical staff. Furthermore, previous direct review by a healthcare provider can represent a highly variable set of scenarios that has the potential to undermine the triage of the symptoms at the time of assessment and result in the wrong disposition with subsequent clinical risk. The fact of and details of these contacts may be

enquiries@nhsdigital.nhs.uk

relevant to the assessment of symptoms at the time of a later call, but this is not always the case.

NHS Digital does not consider that all paediatric cases where there has been previous attendance to primary or secondary care should result in transfer of the call to a clinician. It considers that doing this could cause potential delays to assessing patients which could compromise patient safety. The system deals with a significant number of calls to 111 which have followed a previous assessment by a GP or other health care provider (or have also been previously assessed by a 111 or 999 service and advised to call back should a condition deteriorate). Providing a higher disposition than reached upon symptom-based-triage for those where there has been a previous contact with a healthcare provider may introduce delays to provision of care for individuals and across the population.

Recent prior contact with 111 service itself is taken account of as follows. The NHS 111 service specification (which can be found in full here:

states:

“If a patient (or their carer) calls NHS 111 three times in 4 days, on the third call the patient must be assessed to determine whether or not an ambulance is required. If an ambulance is not required the call must be transferred to a clinician. The GP must complete a thorough reassessment of the patient’s needs and have access to the details of all three calls”.

This specification is set by NHS England and further questions regarding the rationale for setting this requirement would be best dealt with by NHS England.

c. and no consideration of the timing of the request for advice, when reaching a disposition that does not involve referral to paediatric services

NHS Pathways is a comprehensive decision support system, which assesses symptoms presented at the time of a call and signposts to next level of care. Therefore, assessment of time of day is not routinely considered as it would not be clinically safe to change level of care signposted to be based upon time of day as a discriminator alone. However, the functional impairment question identifies when the presenting problem is interfering with normal daily activities and that would include sleeping. This is an assessment against the patient’s ‘usual activities’ so takes account of different patients having different baselines. In addition, NHS Pathways must consider differing daily routines encountered and ‘usual activities’ at different times of day may differ from person to person. For this reason utilising an objective standard against the individuals ‘usual activities’ is the preferred approach.

enquiries@nhsdigital.nhs.uk

NHS Pathways assessments result in a disposition, but it is a local responsibility to match services to these. Therefore, services which are presented/returned from the Directory of Services for urgent primary care assessment (including Out of Hours referrals) are determined by local commissioners, and local decisions can be made not to make certain services or locations available in response to paediatric dispositions.

2) I have heard in evidence that an educational message on ‘rare causes for common symptoms’ could be circulated as a case report, but take the view that the lead professional bodies for both general practice and child health should consider how such information is effectively disseminated, and whether the algorithms and dispositions generated by the 111 service need further modification to maximise the chance of expedited optimal care for what is acknowledged to be an uncommon condition. I have heard in evidence that the 111 service is the default safety net arrangement in such circumstances, and this therefore requires endorsement by your professional bodies, if it is to command the confidence of patients, parents and practitioners as a definitive safety net.

RCPCH and RCGP have agreed to respond to this concern.

Conclusion

• NHS Pathways is not a diagnostic system; it assesses symptoms presented at the time of the call and signposts to the care skill set and time frame that a patient requires at that point in time. For this reason prior health care contacts are not taken into consideration other than repeat, recent 111 calls.
• Parental concern is taken account of in functional impairment assessment.
• It is not clinically safe or recommended to vary dispositions by time of day, but local decisions can be made in respect of the mapping of services to dispositions.
• The NHS Pathways content is continually under review to take account of clinical issues, user feedback, the latest available data and evidence, guidelines from Royal Colleges and other respected bodies and Coroner feedback. Any changes to NHS Pathways clinical content are overseen by the National Clinical Governance Group (NCGG) and Coroner referrals are submitted to NCGG as a standing agenda item.

NHS Digital takes its role in such enquiries and any PFD report received very seriously. NHS Digital wish to reassure the Coroner that it fully investigates and responds to PFD Reports accordingly. The matters that concerned the Coroner have been further assessed, and NHS Digital hopes this response assures that any changes that can be made to better the service and make this safer in respect of this points have been made. If I can be of any further assistance, please let me know.

enquiries@nhsdigital.nhs.uk

I would like to take this opportunity again to offer my sincere condolence to Esma Guzel’s family.

Dear Dr Bell; Regulation 28 Report to Prevent Future Deaths touching on the death of Esma Guzel write as Honorary Secretary for the Royal College of General Practitioners (RCGP), in response to your Regulation 28 report dated 1 June 2022,regarding the very sad death of Esma Guzel. May offer my sincere condolences to Esma's family The RCGP is a professional membership body for general practitioners in the UK and overseas. Our purpose is to encourage; foster and maintain the highest possible standards in general medical practice We support GPs through all stages of their career; from medical students through to training; qualified years and retirement Your report has been reviewed and considered by our clinical policy team, our medical director for clinical policy and myself and we have discussed the details with our colleagues in the Royal College of Paediatrics and Child Health: Details provided The Regulation 28 report identifies 3 young 5-year-old child presenting with vomiting and abdominal pain. This is extremely common in primary care and the report suggests provisional diagnosis of gastroenteritis was made; and that the GP gave safety netting advice. This would be standard care for any child who presented with similar symptoms and did not have an acute abdomen or signs of sepsis requiring admission to hospital as determined by NICE guidance from 2017. Comments You have asked us to consider the facts of the case and determine what action should be taken to prevent future deaths of this kind. Given that we do not have all of the facts of the case; we are unable to comment of the specifics off the individual consultations undertaken with Esma and her family. but am able to lay out the educational material the RCGP has for GPs in training before they are able to work as a qualified GP GP in training curriculum Paediatrics and child health is covered extensively in the RCGP curriculum which contains 'Children's and Young People' specific curriculum that all GPs in training follow: This includes several areas that would relate to this case including common and important conditions such a5 paediatric emergencies, congenital abnormalities, gastrointestinal conditions that present in childhood age-appropriate examinations and liaising with colleagues for complex disease. GPs in training would be assessed on their knowledge of this aspect of the curriculum in workplace- based assessments, the applied knowledge test (a written exam) and in 3 recorded consultation assessment before a GP trainee could qualify and work independently as a GP. In addition; we have extensive educational material on remote consultations including both telephone and yideo consulting to help GPs and their teams undertake the best possible assessment and determine whether face to face review is required: We also have available our 'sepsis tookkit" which identifies the sick child in line with national guidance: Riding

Qualified General practitioners As part of the nationally mandated appraisal system, GPs must undertake annual appraisal and revalidate every 5 years. The Academy of Medical Royal Colleges released its updated guidance in June 2022 describing how GPs and indeed all medical doctors must on an annual basis demonstrate evidence of continuing professional development: General Medical Council describes the evidence required at the appraisal including proof of "keeping up to date". and "maintaining and enhancing the quality of your professional work" . Important messages for primary care General practitioners must have a broad breadth of general knowledge for both adults and children; which would include identification of an acutely sick child, recognition of sepsis and recognition of an "acute abdomen". The specific cause (rare or otherwise) of the acute abdomen is often not of importance in primary care, it is the recognition of the acute abdomen and sepsis, irrelevant of the cause that matters a5 this would trigger a referral to secondary care, where the specialist teams would then identify the cause: For this reason,a "rare cause case report" is unlikely to alter practitioners care pathways in primary care_ messages required for general practitioners and their teams are therefore recognition of sepsis/ the sick child and recognition of the acute abdomen Importantly, in the acute stages of any illness, when the definitive diagnosis is not clear;a5 often happens in primary care with undifferentiated presentations, safety netting is undertaken: as per NICE_guidance: This means that if the person does not meet the criteria for admission, then (or the carer) are given advice on what to do if the patient gets worse, does not better, or suddenly deteriorates whilst at home: In this case, it appears that Esma deteriorated 8 hours after the GP consultation; requiring out of hours contact, after the GP surgery was closed: The only options at this time for the family would have been to call 111, call 999 or to go directly to AGE: 111algorithm The 111 algorithm sent the child to a GP out-of-hours service; rather than calling an emergency ambulance or advising urgent attendance to accident and emergency: The NICE guidance and stratification tool for 'recognition of sepsis on the out of hospital environment for age 5-11 give clear indication which children should be sent to AGE, and we note that the 111 algorithm has been altered following this case which we welcome Sharing of data/ clinical notes between primary care and the out-of-hours service There are some out-of-hours services who are able to see the whole GP record. It does not appear in this case it was possible from the Regulation 28 report If both the out-of-hours service and the GP surgery use the same electronic notes system it is possible, with patient consent; to share all of the GP record: However; in many areas, the GP record is not visible to the out-of- hours service as both use different digital platforms. The RCGP would welcome investment in primary care (both GP and out-of-hours services) infrastructure, to enable best practice of sharing of all notes, subject to patient consent; to be rolled out across the NHS to benefit patient care. However; we recognise this will require significant investment form NHS England and NHS Improvement and the Department of Health and Social Care. The The key they get

Conclusion Thank you for raising this important case us. We will continue to review our e learning offer for our members and if national guidance changes, update them accordingly: At the current time; a rare case report dissemination is not considered to be needed for primary care as the messages are identifying the sick child, identifying sepsis and identifying the acute abdomen We welcome the changes made to the 111 out-of-hours algorithm and hope that the system can learn; to prevent anything like this happening again. Please do let us know if you require any further information and once again; may | offer my sincere condolences to Esma's family.