Chloe Ulett

Dear Ms Brown, Royal College of Midwives (RCM) response to Regulation 28: Report to Prevent Future Deaths Ref no: 46425464 Thank you for your Regulation 28 Report to Prevent Future deaths following the inquest into the death of Miss Chloe Ulett. The Royal College of Midwives (RCM) would like to begin by expressing our sincere condolences to the family and all those affected by the death of Chloe Ulett. The RCM is a professional association and trade union and does not hold statutory or operational responsibility for the delivery of maternity services. However, we play a key role in representing the professional voice of midwives, influencing policy, representing midwives and maternity support workers both individually and collectively in the workplace and working collaboratively with practice partners to advocate for safe, effective and high-quality maternity care. The response to this report is in the context of our responsibilities as a stakeholder within maternity services. We have carefully considered the matters of concern in your report. While the RCM does not have authority to implement changes at service-level, we have identified actions under each point that are within our remit and/or sphere of influence:
1. The window of opportunity to consider and make a diagnosis of a metabolic disorder and institute effective treatment is very short, 24 to 48 hours from the commencement of symptoms, and relies on early measurement of ammonia in an adult presenting with behavioural change and confusion. Midwives have a key role in recognising acute changes in behaviour, cognition or consciousness in women throughout pregnancy, postnatally or in those with complex medical histories. Sudden confusion, agitation, reduced responsiveness, or unusual

behaviour should always be treated a clinical red flag. Any unexplained acute confusion should be escalated urgently to medical staff, using local escalation pathways and early warning systems. Learning from this case highlights the importance of maintaining a high index of suspicion when women present with unexplained neurological or behavioural symptoms. Midwives are reminded to treat such presentations as clinical red flags and to escalate concerns promptly using established local pathways. Actions should include reinforcing education on the recognition of acute changes in mental status and their potential clinical significance. This should be delivered through mandatory training and regular clinical updates and strengthened through practice education across NHS England. Local and regional protocols should also be reviewed and updated to ensure consideration of ammonia testing when altered behaviour or confusion is identified, which is within the remit of NHS England.
2. There are no identified NICE or BMJ best practice guidelines which currently recommend testing of ammonia levels for undifferentiated acutely presenting confused patients. Midwives are expected to practise in line with national guidance and local policies. In the absence of specific recommendations for ammonia testing, midwives would not routinely initiate such investigations without discussing clinical concerns with medical staff. NICE are responsible for development of national guidance to address maternal assessment or to link to associated guidance for adult medical assessment and treatment. The RCM would contribute professional expertise through consultation process as appropriate. Points 3-11 do not relate to the role of the RCM and therefore we feel unable to comment further. Thank you again for raising these matters with the RCM. We trust this response addresses the matters raised in your report. Please let us know if any further information or clarification is required.

Dear Ms Brown, Re: Regulation 28 Prevention of Future Deaths Report in respect of Chloe Angela Ulett I write in response to your regulation 28 report dated 11 February 2026 regarding the sad death of Chloe Angela Ulett. I would like to express my sincere condolences to Miss Ulett’s family. We have reflected on the circumstances surrounding Miss Ulett’s death and the concerns raised in your report. We note that the matters of concern in your report relate mainly to the Royal College of Emergency Medicine (RCEM) guideline ‘Acute Behavioural Disturbance in Emergency Departments’, and that the report has been copied to NICE for information. Senior clinical advisors within the patient safety team here at NICE have reviewed the report and outlined the following, which we hope is useful. N-acetylglutamate synthase deficiency is a rare disorder (estimated frequency 1 in 2 million worldwide, with the majority presenting in infancy). As described in your report, NICE does not have specific guidance on this condition or on the detection of hyperammonaemia. We believe that this is an area best dealt with by specialist societies, such as the RCEM or the British Inherited Metabolic Diseases Group (BIMDG). We note that you have already written to RCEM regarding their guidance and indicated that during the course of your inquest, evidence indicated that this guidance is not embedded in adult medicine at University Hospitals of Birmingham NHS Foundation Trust. NICE does not have anything to add to the recommendations provided by the RCEM guideline. Thank you again for sharing this report with NICE. I hope our response has helped outline our role and the guidance that exists in this topic area. I would like to reiterate my sincere condolences to Miss Ulett’s family. Best regards,

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Chief Executive

Dear Emma Brown,

The Royal College of Physicians (RCP) notes the matters of concern contained within the Regulation 28 Prevention of Future Deaths report related to the death of Miss Chloe Angela Ulett. We send our sincere condolences to the family of Miss Chloe Angela Ulett.

To ensure an informed and comprehensive response to this case, we have consulted the RCP’s Patient safety committee, which comprises a number of our national stakeholders including NHSE, as well as acute medicine colleagues, including the Society of Acute Medicine and those with a special interest in metabolic disorders.

This regulation 28 report raises the concerns around the diagnosis of hyperammonaemia. Hyperammonaemia is characterised by the rise of ammonia within the blood stream which can result in patients becoming confused, drowsy and have headaches.

Severe hyperammonaemia is well recognised as a metabolic emergency. Its main causes can be split into the following subsections: a) Overproduction of anaemia - caused by increased protein load, increased catabolism and urinary issues (for example, urease-producing infections) b) Reduced elimination due to liver failure, drugs and toxins and metabolic disorders.

The majority of patients who present with high ammonia levels in the blood have acute or chronic liver failure, but other causes of raised ammonia need to be considered as this is a diagnosis which has fatal consequences, as this case sadly demonstrates. Many of the inherited causes of hyperammonaemia are recognised in infancy. Indeed, urea cycle disorders are rare, affecting 1:35,000-50,000 infants. The point prevalence in adults is significantly lower.

Whilst guidelines in the Investigation of Hyperammonaemia in children and adults are available from NHS Scotland, there are currently no formal guidelines on investigation of hyperammonaemia in adults in England, although advice is available from the British Inherited Metabolic Disease Group. There is reference to the investigation of high ammonia in confused patients within the Royal College of Emergency Medicine (RCEM) best practice guideline ‘Acute Behavioural Disturbance in the Emergency Departments’ (October 2023) as stated in this Regulation 28 report. This guideline advises doing ‘other tests as clinically indicated e.g. … appropriate metabolic screen (including ammonia level)’ in those with acute behavioural disturbance. The Royal College of Paediatrics and

Child Health (RCPCH) has also produced a clinical guideline document for the management of children and young people with an acute decreased in conscious level. The RCP is aware that the NHS England National Patient Safety Team have undertaken work with the Royal College of Pathologists (RCPath) on the specific issue of hyperammonaemia and ammonia testing and that as a result, a national Patient Safety Bulletin was issued. The RCP supports the highlighted need for ‘prompt measurement of ammonia and action in the event of hyperammonaemia’. The RCP notes a gap in best practices guidelines as neither NICE nor the BMJ currently recommend the testing of ammonia levels for undifferentiated acutely presenting confused patients, as stated within the Regulation 28.

While RCEM guidance exists, this case illustrates opportunities for enhanced awareness regarding the possibility of hyperammonaemia in patients presenting with acute behavioral changes and seeking urgent advice if the cause of acute deterioration is unclear particularly in someone with no other underlying health disorder. Over the past decade, additional cases associated with metabolic disease have been noted at inquests, which highlights the importance of continuing to increase recognition of this disorder which is treatable.

The RCP recognises that physicians are working in very busy environments, but training should emphasise the importance of early intervention and advise, particularly for acute deterioration without cause in someone with no other health issues. Those physicians working in acute medicine as well as those in other medical specialities should be aware of these potential rare diagnoses, such as hyperammonaemia presenting acutely in adults. The RCP also advocates for urgent specialist reviews where diagnostic uncertainty exists, for example, assessment by a neurologist to help identify the diagnosis, ensuring management is not delayed. The RCP acknowledges that the available guidance is not well embedded and the triggers for the condition described are not well known by the majority of clinicians. At the RCP, the concerns of hyperammonaemia have been discussed at the Patient Safety Committee and the RCP has committed to raising the profile by sharing this issue with their members via the RCP website within the coming months.

Hyperammonaemia is rare but the presentation of those with confusion due to any cause is high in the acute setting. 10-20% of all admissions present with confusion due to a wide variety of issues (National Institute for Health and Care Excellence: Delirium, prevention, diagnosis and management (CG103). London: NICE; 2010 (updated 2019)). Hyperammonaemia remains a diagnosis of exclusion and as such, ammonia levels are not usually in the first bloods sent for a patient, as the primary aim in someone presenting with confusion is to ensure they do not have sepsis. As highlighted by this challenging case, hyperammonaemia remains a diagnosis that should be carefully considered when the cause of acute confusion is unclear. Awareness of this condition varies among clinicians, and our review of this regulation 28 report underscores the value of developing clearer guidance on the investigation and management of hyperammonaemia, particularly in Trusts without access to metabolic medicine specialists.

We suggest that any guidance produced would need to be created with the RCP, RCEM and the Society of Acute Medicine to ensure practical implementation. Guidance would need to be realistic and deliverable, especially given metabolic diseases are rare. There is also a risk that a significant number of patients would be over-investigated (given numbers who present with confusion vs those with metabolic disorders which result in hyperammonaemia) and thus may cause harm to patients. Any guidance would need to balance this risk with the risk of not identifying a potentially reversible/treatable condition which without intervention, has devastating consequences. At the RCP, we would be happy to contribute to the development of such guidance this should be shared nationally to enable systems learning. At the RCP, we could support by facilitating information and guidance sharing with our physician members and fellows as well as other stakeholders and we urge UHB to share this information with the RCP for this purpose. Furthermore, it would be valuable for the stakeholders and specialties regularly involved in these scenarios to collate available evidence including success stories and examples of efficient management of these rare events. In preventing future deaths, as a profession we have a duty to consider how such rare disorders (many of which

have serious, even fatal, consequences) are recognised and how information is disseminated to physicians who will see such a case perhaps only once in their career, if at all.

Furthermore, we acknowledge that the window of opportunity to make such a diagnosis is relatively small, 24 to 48 hours from commencement of symptoms and therefore it should be a condition which should be considered in those presenting with symptoms. There are practical considerations and one of the recognised barriers is believed to be the measurement of ammonia. Indeed, the false positive rates of this test are high. This is because ammonia rises rapidly in the blood unless specific precautions are taken, and in some centres, the physical transporting of the blood to the laboratory precludes any chance of accurate levels being measured. The sample also needs to be kept on ice, which is no longer readily available in NHS Trusts, therefore causing challenges in completion of this investigation. NHS Trusts should have clear pathways for medical and nursing staff to follow in cases where a test for ammonia is required and appropriate.

Our review of the case underscores the value of considering urea cycle disorders in pregnant or postpartum individuals experiencing unexplained confusion or critical illness and highlights the importance of awareness of the benefit of involving the regional maternal network in such instances. All regions have access to these networks, and increasing awareness of this resource is vital to optimal care of pregnant and postpartum women.

The benefit of referring a patient where there is concern is that the network would have convened a multidisciplinary team including obstetrics, obstetric physicians and select specialist physicians and anaesthetists at short notice, who would then have been able to advise on investigation, diagnosis and management. The awareness of the networks and how to access them needs to be reinforced to all those who are involved in the assessment of pregnant and postpartum women. In any future communication to our members and fellows we will aim to emphasise this point so people are aware of the networks that would be useful, particularly in supporting postpartum or pregnant patients.

Once again, our sincere condolences to Miss Ulett’s family at this difficult time.

Dear Ms Brown

Re: Chloe Angela Ulett

Thank you for your Regulation 28 Report to Prevent Future Deaths following the inquest into the death of Chloe, dated 12 February 2026, and for granting an extension to enable us to provide a thorough response.

The loss of a loved one is a devastating tragedy for the family and healthcare professionals involved. We would like to begin by extending our deepest and heartfelt condolences to Chloe’s family for their profound loss.

This response has been developed following input from members of the Royal College of Obstetricians and Gynaecologists (RCOG) Patient Safety Committee as well as Officers of the College.

We acknowledge from the matters of concern that there can be a lack of awareness amongst all medical specialties that behavioural disturbance and altered consciousness can be symptoms of a previously undiagnosed metabolic disorder. This is of importance in obstetrics because such conditions can become unmasked by giving birth and there is a short window for diagnosis and treatment.

The RCOG encourages multi-professional, cross-specialty collaboration in the care of all women. This is of particular importance for pregnant women (or those in the postpartum period) who have pre-existing medical conditions, symptoms which are not typically suggestive of common obstetric conditions, and symptoms which are worsening or not improving despite standard treatment. This expectation is outlined in the RCOG Maternity Services Standard Framework 2025:

5.2. Commissioners and service providers should utilise multidisciplinary working to ensure that women and birthing people with complex medical needs have access to the expertise, specialised care and support appropriate to their needs. (Royal College of Obstetricians and Gynaecologists, 2025, p. 55)

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This recommendation is embedded in RCOG clinical guidance and good practice papers, and in our curriculum and our courses.

The RCOG’s Maternity Services Standards Framework also outlines the role of maternal medicine networks:

5.2.2 Oversight of the care of women with suspected or confirmed medical disorders, particularly when complex or severe, should be provided by a multidisciplinary team as part of a maternal medicine network. (Royal College of Obstetricians and Gynaecologists, 2025, p.
55)

Maternal medicine networks are multidisciplinary teams of experts who are experienced in managing a wide range of pre-existing and newly arising medical conditions during pregnancy and in the postpartum period. These teams can be contacted and consulted with for any woman during the antenatal or postnatal period who is acutely unwell, particularly where that woman has unusual or concerning symptoms.

In response to the concern that there may be a lack of awareness of urea cycle disorders amongst obstetricians, the RCOG has commissioned an article covering ‘Metabolic Conditions in the Peripartum Period’, to be published in The Obstetrician and Gynaecologist Journal (TOG). This journal is widely read by members, fellows and trainees in obstetrics and gynaecology, and as such, is an effective way of disseminating this clinical information.

Articles published in TOG are often used as a basis for questions in the College’s Membership examination (MRCOG) and therefore are essential reading for all doctors embarking upon membership of the RCOG.

Once again, we offer our deepest condolences to Chloe’s family. Thank you for bringing this to our attention. I hope this is a helpful response to this matter.