Dear Mr Irvine,

Re: Regulation 28 Prevention of Future Deaths Report: Urielle Mayila Kuyenga, Ref 25568375

I write in response to the inquest dated 30th September 2025 and the Regulation 28, Prevention of Future Deaths report to the trust dated 9th December 2025.

We are very sorry that Miss Urielle Mayila Kuyenga died of sepsis resulting from a bacterial pneumonia on a background of Sickle Cell Disease (SCD) at only 4 years old. Since the time of her death in December 2023 the paediatric clinical haematology service at the Royal London Hospital, as the Haemoglobinopathy Coordinating Centre (HCC) for the region, have discussed events in a number of forums to surface opportunities for learning and they have taken a number of actions to improve the coordination of care for this vulnerable patient group across the system. As our response to your Regulation 28 Prevention of Future Deaths Report, I will summarise these actions now.

Support and education for families In 2025, the Haemoglobinopathy Coordinating Centre (HCC) designed a website with information to support families. Whilst still in the development stage, it is planned that this website will include a range of information including about the centres in the region, clinical information about SCD and thalassemia as well as providing signposting to a range of organisations who can help and provide support to patients and their families.

To ensure the service meets the needs of its patients, a patient representative feeds into the service meetings to provide feedback from service users and to help further shape the information and service that the team provide.

Trust Executive Office Ground Floor Pathology and Pharmacy Building The Royal London Hospital 80 Newark Street London E1 2ES

Private & Confidential Mr Graeme Irvine Senior Coroner Coroner Area East London Walthamstow Coroner's Court, Queens Road, Walthamstow, E17 8QP

Support primary care with education and training An HCC education lead has been appointed for the network. This individual is now producing a newsletter for communicating important messages across the network the team covers.

A series of educational webinars have been held to define the role of GPs in managing acute complications of SCD and for health maintenance in primary care. This includes written information, pathways for referral/ advice and awareness of the roll-out of the Universal Care Plan (UCP) in SCD. The UCP is a tool that supports patients, their families and their clinical team to co-create a personalised plan for managing the patient’s care and are increasingly used for a variety of long-term conditions. In the context of patients with SCD, the team are using them to capture regular medications. For communications regarding medications to be prescribed and expectations for GPs, these are communicated through the clinic letters sent following clinical review which the team have strengthened.

This is further supported by a programme of work being led by the RLH Deputy Chief Executive Officer aimed at improving digital communications between the trust, our patients and primary care. Once implemented, the communication platform will strengthen how patients and healthcare professionals can communicate and share information through digital channels.

On 2nd July 2024, an HCC Clinical Lead alongside a Consultant in Paediatric Infectious Diseases and Immunology have delivered a GP awareness campaign including a London-wide GP webinar on the UCP. It is important to note that a UCP is not a shared care agreement and is used as guidance for clinicians involved in care. They are accessible through electronic portals for healthcare professionals in line with patients’ medical confidentiality.

As part of the educational webinars the service has provided to primary care teams, sessions have also been provided to increase the general awareness around the risk of infection. This has included the benefits of the use of penicillin V in sickle cell disease (SCD) in the under 5’s, pathways for escalating for clinical assessment and the need for management with intravenous antibiotics. All the webinars remain available on the North-East London (NEL) training hub, they were highlighted at the NEL Babies, Children and Young People (BCYP) delivery group in December 2025 and have been added to the NEL BCYP newsletter.

These campaigns were discussed at the National Haemoglobinopathy Panel in November 2025 to raise the awareness of it within specialist teams. Following this, a national webinar is now scheduled for 28th January 2026, led by the UK Forum on Haemoglobin Disorders.

Information sharing The service has created a generic letter template to standardise the information that is sent to parents, GPs, community teams and local hospitals. This has been in place since September 2025 and clarify the medications that are prescribed in secondary care (hospitals) and which are to be prescribed by primary care (GPs), including the prescription of prophylactic antibiotics as per the clinical guidelines. These are reiterated in the clinic letters after every clinical encounter. Additionally, once the digital

platform is implemented, this will further support the timely sharing of clinical documentation and information.

In November 2025, Barking, Havering and Redbridge University Hospitals NHS Trust (BHRUT) joined the Oracle Millennium system that Barts Health NHS Trust uses for its electronic patient record system. This means that health data and treatment plans for patients in NEL are now easier for clinicians to access and for the first time, the hospitals have a common electronic patient record (EPR). Clinicians are now able to share details of any patients that need to be transferred between any of the seven hospitals run by the two Trusts. With additional links to the East London Patient Record, a summary view of real-time clinical information is now available to GP systems across London.

Sickle cell guidance and pathways As of December 2025, 90% of children with SCD are now on a UCP. Each one will include specific and personalised information about a patient’s needs, how to manage symptoms during a crisis and informed decision-making during episodes of urgent care. They also contain information on ambulance directives to avoid delays and to ensure patients are directed to the correct service in a timely fashion.

Multi-organisational work has taken place to produce SCD guidance. This includes system flagging, the development of pathways and the GP awareness campaign already described. This has been completed with the support of the London Sickle Cell Improvement Board and has involved all the boroughs overseen by NEL Integrated Care Board (ICB), the Royal London Hospital (RLH), the Partnership of East London Cooperatives (PELC), North-East London Foundation Trust (NELFT), Hackney borough and Barking, Havering and Redbridge University Trust (BHRUT).

As part of the webinars on SCD, the GP escalation pathway has been updated to include sepsis. The GP training leads in the region have been contacted to support the adoption of this locally.

Across the network, the ACT NOW (Analgesia, Compassion, Test & triggers, Notify, Oxygen, Watch) sickle cell acronym has been adopted to ensure rapid and effective response to sickle cell emergencies in hospital.

Governance and quality improvement An HCC governance lead has been appointed to lead on network wide quality improvement and governance. All serious events are discussed in the network morbidity and mortality meetings and learning points summarised in a quarterly newsletter.

A tri-borough audit of transfers of case has been undertaken in December 2025 relating to Specialist Haemoglobinopathy Team (SHT) to SHT, Local Haemoglobinopathy Team (LHT) to LHT and community to community. Following this the standard operating procedure has been updated.

Cultural competency & public health support The partnership is continuing to promote training around cultural competency to reduce stigma around health conditions. This follows “Think Family” which promotes the importance of a whole-family

approach built on the principles of reaching out and working together across health and social care to consider the needs of the individual in the context of their relationship and their environment.

For information, the Sickle Cell Society has also been looking at supporting patients with these aspects as well as leading on Public Health initiatives to address factors such as stigma.

In March 2026, the team are involved in an exhibition called 'Memory & History of Sickle Cell Disease in the UK 1950-2020'. It is due to open at RLH in March 2026 and the purpose of bringing the exhibition to RLH is to understand if, through the medium of art and storytelling, we can effect a change in staff attitude and behaviour towards our patients. The clinical team intend to use this as an opportunity to challenge staff to consider their own legacy in the history of SCD in East London.

I hope this provides you with the assurance that we have taken the events in Miss Kuyenga’s care very seriously but I would be very happy to discuss or clarify any of the above points if you wished.

Dear HM Senior Coroner, Mr Graham Irvine In response to the Regulation 28 attached to your email dated 18th December 2025, please find our response below. The MATTERS OF CONCERN are as follows:
1. As a patient with Sickle Cell Disease, Urielle was prescribed prophylactic penicillin to mitigate the risk of her developing fatal symptoms arising from typical respiratory infections. Urielle’s mother chose not to collect those prescriptions and administer penicillin to Urielle. Urielle’s specialist doctors believed that her GP was monitoring the prescription and dispensation of the penicillin, whilst Urielle’s GP was misled by Urielle’s mother that the hospital were dispensing the medication directly. The breakdown of communication means that Urielle was left unprotected from opportunist infection which caused this avoidable death.  Maylands Healthcare undertook an audit in early 2024 of all patients at our Practice with a diagnosis of Sickle Cell Disease. It was identified that we had 5 patients with Sickle Cell Disease out of our total list size of 14000 patients. Completed and Continuing on an annual basis.  Having identified these patients from the Audit, all patients with Sickle Cell Disease are proactively contacted by the practice for a medication review. This includes reviewing Penicillin V prescribing and compliance as a key factor. Completed and Continuing on an annual basis.  If there are any concerns regarding who is taking responsibility for prescribing and dispensing Penicillin V prophylaxis, the practice will directly liaise with the patient’s secondary or

MAYLANDS HEALTHCARE 300 UPPER RAINHAM ROAD, HORNCHURCH, ESSEX, RM12 4EQ tertiary care specialist to clarify matters. This has already been undertaken for one patient in late 2024. Completed and Continuing on an annual basis.  All patients with Sickle Cell Disease have had their medications changed to electronic repeat dispensing. This ensures patients can access regular, ongoing supplies of their Penicillin antibiotics from their pharmacy without needing a new prescription from their GP each time. We have also liaised with our on-site pharmacist to ensure that any uncollected prescriptions for Sickle Cell Disease patients are actively communicated back to us at the practice to identify concerns early. Completed and Continuing.  The practice completed an SEA regarding Urielle’s case, and shared all the learning points with staff at the Practice.
2. In the weeks prior to her death Urielle’s mother presented her daughter to three separate GPs about a respiratory infection. On each of these three attendances the attending clinician was ignorant of Urielle’s Sickle Cell diagnosis. The reasons for these lapses were, firstly Urielle’s mother did not inform the doctor of the fact and, second, that the doctors did not adequately read the clinical records available to them.  We have added clear alerts and warnings in each clinical record. This ensures that their diagnosis of Sickle Cell Disease is visible to all staff as a pop-up box, and does not rely solely on the problem list being reviewed. Completed.  All clinical staff have undertaken their mandatory Sepsis training, with an understanding of the serious risk of infections in Sickle Cell Disease patients. Completed  The findings and details of the significant event analysis have been shared with all staff to foster learning across the Practice. The significant event analysis has also been shared with the Coroner.

Dear Mr Irvine, Thank you for the Regulation 28 report of 09 December sent to the Secretary of State / the Department of Health and Social Care about the death of Urielle Mayila Kuyenga. I am replying as the Minister with responsibility for Public Health and Prevention. Firstly, I would like to say how deeply saddened I was to read of the circumstances of Urielle’s death, and I offer my sincere condolences to her family and loved ones. The circumstances your report describes are hugely concerning, and I am grateful to you for bringing these matters to my attention. Your report raises two major concerns:
1. Insufficient communication between Urielle’s General Practitioner (GP) and specialist doctor as to whether Urielle was receiving her prescribed prophylactic penicillin treatment. This allowed for Urielle’s mother to choose not to collect or administer the penicillin and mislead the GP on these actions.
2. Three separate GPs did not adequately read Urielle’s clinical records when treating her upper respiratory tract infection. If they had, they would have been made aware of her prescribed prophylactic penicillin treatment, and that she had a sickle cell diagnosis, which made her predisposed to fatal consequences of a respiratory infection. You noted that Urielle’s mother did not inform the doctor of Urielle’s sickle cell diagnosis. In preparing this response, my officials made enquiries with NHS England (NHSE), the Care Quality Commission (CQC), and the General Medical Council (GMC) to ensure we adequately address your concerns. I have also included comments on other issues raised by Urielle’s experiences. Concern 1: Insufficient communication between Urielle’s GP (GP) and specialist doctor on whether she was receiving her prescribed medication. As you note in your first concern there was a breakdown in communication between Urielle’s specialist doctor and GP. We are aware that the transfer from secondary to primary care can sometimes cause misunderstandings, resulting in prescriptions not being issued by the prescriber or left uncollected by the patient. To limit these misunderstandings, health professionals often use the recommended approaches of the Discharge Medicines

Service (DMS) and Shared Care Protocols (SCPs). I note that whilst both approaches are commonly used, it is not specified in your report whether they were used in this case. Discharge Medicines Service (DMS) The DMS is offered by all community pharmacy contractors in England. It enables hospitals to refer discharged patients to a community pharmacy, with clear information about medication changes. This allows for greater support for the patient and can help reduce the risk of newly prescribed items being missed. It is recommended that clinical staff refer eligible patients to this service, but there is currently no contractual requirement for NHS trusts to participate. If the DMS had been used, the community pharmacy would have been alerted that Urielle had been newly prescribed prophylactic penicillin in hospital. The pharmacy team would then have had the opportunity to raise any issues with the GP or hospital when the prescription was subsequently not collected. However, if a clinically valid prescription for penicillin was received from the GP, dispensed by the pharmacy, but not collected by Urielle’s mother, then the use of the DMS may not have impacted the outcome of this case. Whilst pharmacies will regularly check uncollected prescriptions as part of their stock management processes, it is unclear if this would have taken place within the required timeframe to impact the outcome of this case. Shared Care Protocols (SCPs) SCPs are commonly used agreements that set out responsibility for prescribing and monitoring long-term treatments between specialists and GPs. These improve patient safety, access, and integration between primary and secondary care. ‘Shared Care’ between specialists and GPs is not explicitly defined in the General Practice contracts as individual GPs and other prescribers in general practice would need to be confident that they have the necessary skills, knowledge and expertise to enter Shared Care Protocols. In the absence of an SCP, clear lines of communication should have been established between Urielle’s specialist in the hospital and GP. The overall responsibility for her care, including monitoring and issuing the prescription, should have remained with the hospital. The government is committed to improving this communication between primary and secondary care as outlined in the 10 Year Health Plan in the section on the ‘Red Tape Challenge’ recommendations. These include work to improve information technology through initiatives such as increasing access to shared care records and developing greater interoperability of electronic patient records (EPRs), starting with the sharing of structured medication information. Concern 2: Inadequate review of Urielles clinical notes by three separate GPs Your second concern highlighted that Urielle’s clinical notes were not appropriately reviewed by the GPs that saw her. To practice medicine in the UK, all doctors must meet the GMC’s professional standards, which set out the principles and values of the professional behaviour expected. Whilst the GMC expect GPs to appropriately review

patients’ notes, we know that in some cases, patients are treated when there has not been an adequate review of their history, resulting in the omission of significant clinical details. Ensuring that health care professionals meet expected standards is of utmost importance. We have identified that CQC were not made aware of the issues surrounding Urielle’s death. CQC have written to Maylands Healthcare Surgery for their Significant Event Analysis (SEA) and have requested the SEA from the urgent treatment centre. Once CQC have received this information, they will be able to monitor both providers’ learning from the events and what changes have been implemented as a result. Further concerns highlighted by the coroner’s report You reference wider concerns around continuity of care and patient safety. This includes Urielle’s contact with three separate GPs, which we have understood to mean three different clinicians in the same practice. Seeing multiple GPs in quick succession raises concerns about continuity of care. Evidence shows continuity supports better diagnosis, safer prescribing and stronger patient‑clinician relationships, especially for people with complex or long-term conditions. In the 2025/26 GP contract, we introduced an incentive for GPs to identify patients who would benefit most from continuity, with a named GP where appropriate. This aims to ensure that patients with long‑term conditions or high care needs receive consistent, personalised care. To further improve the safety of patients, we have implemented a new initiative in September 2025 called “Jess’s Rule: Three Strikes and Rethink”. This has been published jointly with the Royal College of General Practitioners and NHSE. Under Jess’s Rule, clinicians in general practice are encouraged to take a structured approach to critically re- evaluate symptoms, diagnoses and patient concerns if after three consultations the patient’s condition remains unexpectedly unresolved, their symptoms are escalating and/or they have no clear diagnosis. We know this practice is commonplace in many settings, and GPs, and others use their clinical discretion every day to find the underlying cause of unclear cases. By reiterating this principle, and explicitly encouraging clinicians to revisit patient records, challenge initial assumptions and remain alert to subtle warning signs, Jess’s Rule aims to reduce diagnostic delays, support clinical intuition and encourage proactive intervention. NHSE is also working to improve care and outcomes of all sickle cell patients through the Sickle Cell and Thalassaemia Improvement Programme. This new programme aims to improve education and awareness of sickle cell disease amongst healthcare staff. It also seeks to strengthen education for patients, parents and carers to support effective self‑management. Resources will be developed and made available later this year. I hope this response is helpful. Thank you for bringing these concerns to my attention.

Dear Mr Irvine

Regulation 28 Report- Inquest Touching the Death of Miss Urielle Mayila Kuyenga

I write further to your Regulation 28 Report to Prevent Future Deaths (PFDR) dated 09.12.25, relating to the Inquest of Miss Urielle Mayila Kuyenga (‘Urielle’).

We have considered your concerns and set out our formal response to each matter using your numbering as follows.

Matters of Concern

1. As a patient with Sickle Cell Disease, Urielle was prescribed prophylactic penicillin to mitigate the risk of her developing fatal symptoms arising from typical respiratory infections. Urielle’s mother chose not to collect those prescriptions and administer penicillin to Urielle. Urielle’s specialist doctors believed that her GP was monitoring the prescription and dispensation of the penicillin, whilst Urielle’s GP was misled by Urielle’s mother that the hospital were dispensing the medication directly. The breakdown of communication means that Urielle was left unprotected from opportunist infection which caused this avoidable death.
2. In the weeks prior to her death Urielle’s mother presented her daughter to three separate GPs about a respiratory infection. On each of these three attendances the attending clinician was ignorant of Urielle’s Sickle Cell diagnosis. The reasons for these lapses were, firstly Urielle’s mother did not inform the doctor of the fact and, second, that the doctors did not adequately read the clinical records available to them. From the outset I would like to reassure you that we have reflected seriously upon the findings at Inquest and upon the contents of your Report, and that we welcome the opportunity to identify learnings, as well as the opportunity to both improve the quality of our care provision and strengthen the existing policies and procedures where appropriate.

I understand that your concerns regarding paragraph 1 have been addressed to other bodies, and I therefore address paragraph 2 as follows.

Response

Legal\. 2 of 2

In our letter dated 30 October 2025, we confirmed the various locations in which a patient’s records may be located. We also confirmed that since this tragic incident we had introduced a new requirement that clinicians, when reviewing a child or vulnerable adult, conduct a review of the individual’s records.

I can confirm that since then, we have conducted a further review of PELC’s policy and have expanded this policy to all patients.

In addition to the above, attached to this letter is a copy of our updated action plan setting out the steps we have taken and will take to ensure that Urielle’s experience is not repeated. These include the following:

1. Learning Communication to Staff- Organisational learning has been shared regarding the importance of reviewing all relevant previous patient encounters as part of review of the patient. This learning will continue to be shared at regular intervals so as to ensure that new starters are aware and current employees are reminded.

2. Inclusion in Clinical Staff Contracts- In our letter of 30 October 2025, we confirmed that there was an expectation of clinicians to act within GMC Professional Standards and Good Practice which requires that clinicians must ‘adequately assess’ the patient. We have now included the requirement to all relevant prior patient encounters a part of staff contracts.

3. Clinical System Alert for Discharge Decisions- We are currently working with Adastra to implement an alert within clinical records for all children presenting to the service with a diagnosis of sickle cell disease.

a. This alert shall be generared once a patient discloses that they have sickle cell disease or upon identification by a clinician following review of the patient’s summary care records. The latter will require patient consent.

Thank you again for bringing your concerns to my attention. I trust that this response provides assurance that appropriate action is being taken to address those concerns.

If you have any further concerns or you would like to discuss this case further, please do not hesitate to contact me.