PFD report

Urielle Mayila Kuyenga · Prevention of Future Deaths report

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Issued 9 Dec 2025•East London

Report record

Published report and response evidence

This page connects the concerns raised in this report with statements found in recipients’ published responses. A link shows a clear evidence connection; it does not assign responsibility.

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Concerns
2

Raised in this report

Recipients
4

Named on the report

Responses found
3

Of 4 recipients

Stated actions
16

Described in responses

Recipients and published responses

Source document

Full report text

This is the full text from the original published report.

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Concerns and recipient responses

Select any concern, action or position to view the source wording.

Concerns raised2

  1. Breakdown of communication about responsibility for penicillin prescription and dispensation
    Part of recurring concern: Unclear responsibility for prescribing and medication advicePart of recurring concern: Unreliable communication of patient-care information between clinical staffPart of recurring concern: Unreliable doctor-to-doctor coordination of prescribingPart of recurring concern: Unreliable multi-agency communication procedures
  2. Failure of clinicians to identify Sickle Cell Disease from available clinical records
    Part of recurring concern: Failure to review relevant clinical records before care decisions
Responses linked to these concerns

Each statement is shown once, even when linked to more than one concern.

Actions described in response An action is something a recipient says it has done, is doing, or plans to do in response to a concern raised.12

  1. Action

    Share organisational learning with staff about reviewing all relevant previous patient encounters, including regular dissemination to new and existing employees.

    Stated by Partnership of East London Co-operatives LtdStated in progressThe respondent said that this action was in progress when they made their response on 19 December 2025.
  2. Action

    Require clinicians to review relevant previous patient encounters and expand the requirement to all patients.

    Stated by Partnership of East London Co-operatives LtdStated completedThe respondent said that this action was complete when they made their response on 19 December 2025.
  3. Action

    Include the requirement to review all relevant prior patient encounters in relevant clinical staff contracts.

    Stated by Partnership of East London Co-operatives LtdStated completedThe respondent said that this action was complete when they made their response on 19 December 2025.

Respondent positions A position is what a recipient says about a concern when it does not describe a specific action.2

  1. Position

    Responsibility for addressing the prophylactic penicillin communication concern lies with other bodies.

    Stated by Partnership of East London Co-operatives LtdRedirects responsibilityThe respondent said that another organisation was responsible for deciding or taking action.

Source evidence

How this individual concern was interpreted

PFD Monitor created a concise, searchable interpretation from the report wording shown below. Response links show a clear evidence connection; they do not assign responsibility.

PFD Monitor interpretation

Breakdown of communication about responsibility for penicillin prescription and dispensation

Wider context from the report

“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. While 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 opportunistic infection which caused this avoidable death. ”

Is this part of a recurring concern?

Yes — Unclear responsibility for prescribing and medication advice; Unreliable communication of patient-care information between clinical staff; Unreliable doctor-to-doctor coordination of prescribing; Unreliable multi-agency communication procedures.

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Source evidence

How this individual concern was interpreted

PFD Monitor created a concise, searchable interpretation from the report wording shown below. Response links show a clear evidence connection; they do not assign responsibility.

PFD Monitor interpretation

Failure of clinicians to identify Sickle Cell Disease from available clinical records

Wider context from the report

“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. ”

Is this part of a recurring concern?

Yes — Failure to review relevant clinical records before care decisions.

Open source report

Source evidence

How this respondent action was interpreted

PFD Monitor created a concise, searchable interpretation from the published response wording shown below.

PFD Monitor interpretation

Share organisational learning with staff about reviewing all relevant previous patient encounters, including regular dissemination to new and existing employees.

Verbatim wording from the response

“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.”

Source location

Response from Partnership of East London Co-operatives Ltd
Page 2 · response
Published 19 December 2025

Open published response

Source evidence

How this respondent action was interpreted

PFD Monitor created a concise, searchable interpretation from the published response wording shown below.

PFD Monitor interpretation

Require clinicians to review relevant previous patient encounters and expand the requirement to all patients.

Verbatim wording from the response

“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.”

Source location

Response from Partnership of East London Co-operatives Ltd
Page 2 · response
Published 19 December 2025

Open published response

Source evidence

How this respondent action was interpreted

PFD Monitor created a concise, searchable interpretation from the published response wording shown below.

PFD Monitor interpretation

Include the requirement to review all relevant prior patient encounters in relevant clinical staff contracts.

Verbatim wording from the response

“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.”

Source location

Response from Partnership of East London Co-operatives Ltd
Page 2 · response
Published 19 December 2025

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Source evidence

How this respondent action was interpreted

PFD Monitor created a concise, searchable interpretation from the published response wording shown below.

PFD Monitor interpretation

Implement a clinical-record alert for children presenting with sickle cell disease, triggered by disclosure or clinician identification from summary care records with consent.

Verbatim wording from the response

“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.”

Source location

Response from Partnership of East London Co-operatives Ltd
Page 2 · response
Published 19 December 2025

Open published response

Source evidence

How this respondent action was interpreted

PFD Monitor created a concise, searchable interpretation from the published response wording shown below.

PFD Monitor interpretation

Proactively contact patients with sickle cell disease annually for medication reviews, including Penicillin V prescribing and compliance.

Verbatim wording from the response

“• 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.”

Source location

Response from Maylands Healthcare Surgery
Page 1 · response
Published 19 December 2025

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Source evidence

How this respondent action was interpreted

PFD Monitor created a concise, searchable interpretation from the published response wording shown below.

PFD Monitor interpretation

Require the on-site pharmacist to communicate uncollected sickle cell disease prescriptions to the practice.

Verbatim wording from the response

“• 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.”

Source location

Response from Maylands Healthcare Surgery
Page 2 · response
Published 19 December 2025

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Source evidence

How this respondent action was interpreted

PFD Monitor created a concise, searchable interpretation from the published response wording shown below.

PFD Monitor interpretation

Add clear pop-up alerts and warnings identifying sickle cell disease in each clinical record.

Verbatim wording from the response

“• 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.”

Source location

Response from Maylands Healthcare Surgery
Page 2 · response
Published 19 December 2025

Open published response

Source evidence

How this respondent action was interpreted

PFD Monitor created a concise, searchable interpretation from the published response wording shown below.

PFD Monitor interpretation

Liaise directly with secondary or tertiary specialists when responsibility for Penicillin V prescribing or dispensing requires clarification.

Verbatim wording from the response

“• 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”

Source location

Response from Maylands Healthcare Surgery
Page 1 · response
Published 19 December 2025

Open published response

Source evidence

How this respondent action was interpreted

PFD Monitor created a concise, searchable interpretation from the published response wording shown below.

PFD Monitor interpretation

Move all patients with sickle cell disease to electronic repeat dispensing for Penicillin antibiotics.

Verbatim wording from the response

“• 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.”

Source location

Response from Maylands Healthcare Surgery
Page 2 · response
Published 19 December 2025

Open published response

Source evidence

How this respondent action was interpreted

PFD Monitor created a concise, searchable interpretation from the published response wording shown below.

PFD Monitor interpretation

Develop greater interoperability of electronic patient records, starting with structured medication information sharing.

Verbatim wording from the response

“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.”

Source location

Response from Department of Health and Social Care
Page 2 · response
Published 19 December 2025

Open published response

Source evidence

How this respondent action was interpreted

PFD Monitor created a concise, searchable interpretation from the published response wording shown below.

PFD Monitor interpretation

Implement and jointly publish Jess’s Rule to encourage structured clinical re-evaluation after three unresolved or worsening consultations.

Verbatim wording from the response

“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.”

Source location

Response from Department of Health and Social Care
Page 3 · response
Published 19 December 2025

Open published response

Source evidence

How this respondent action was interpreted

PFD Monitor created a concise, searchable interpretation from the published response wording shown below.

PFD Monitor interpretation

Increase access to shared care records to improve communication between primary and secondary care.

Verbatim wording from the response

“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.”

Source location

Response from Department of Health and Social Care
Page 2 · response
Published 19 December 2025

Open published response

Source evidence

How this respondent position was interpreted

PFD Monitor created a concise, searchable interpretation from the published response wording shown below.

PFD Monitor interpretation

Responsibility for addressing the prophylactic penicillin communication concern lies with other bodies.

Verbatim wording from the response

“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.”

Source location

Response from Partnership of East London Co-operatives Ltd
Page 1 · response
Published 19 December 2025

Open published response

Source evidence

How this respondent position was interpreted

PFD Monitor created a concise, searchable interpretation from the published response wording shown below.

PFD Monitor interpretation

Without a shared care protocol, the hospital should retain responsibility for care, monitoring and issuing the prescription.

Verbatim wording from the response

“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.”

Source location

Response from Department of Health and Social Care
Page 2 · response
Published 19 December 2025

Open published response

Other statements in published responses

These actions and other statements could not be clearly connected to one concern in this report.

Recipient-stated actions An action is something a recipient says it has done, is doing, or plans to do in response to a concern raised.4

  1. 1

    Audit the practice register annually to identify patients with sickle cell disease.

    Stated by Maylands HealthcareStated completedThe respondent said that this action was complete when they made their response on 19 December 2025.
  2. 2

    Ensure all clinical staff complete mandatory Sepsis training addressing infection risks for patients with sickle cell disease.

    Stated by Maylands HealthcareStated completedThe respondent said that this action was complete when they made their response on 19 December 2025.
  3. 3

    Share significant event analysis findings and learning with all practice staff.

    Stated by Maylands HealthcareStated completedThe respondent said that this action was complete when they made their response on 19 December 2025.
  4. 4

    Introduce a GP contract incentive to identify patients who would benefit from continuity and provide a named GP where appropriate.

    Stated by Department of Health and Social CareStated completedThe respondent said that this action was complete when they made their response on 19 December 2025.

Source evidence

How this respondent action was interpreted

PFD Monitor created a concise, searchable interpretation from the published response wording shown below.

PFD Monitor interpretation

Audit the practice register annually to identify patients with sickle cell disease.

Verbatim wording from the response

“• 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.”

Source location

Response from Maylands Healthcare Surgery
Page 1 · response
Published 19 December 2025

Open published response

Source evidence

How this respondent action was interpreted

PFD Monitor created a concise, searchable interpretation from the published response wording shown below.

PFD Monitor interpretation

Ensure all clinical staff complete mandatory Sepsis training addressing infection risks for patients with sickle cell disease.

Verbatim wording from the response

“• All clinical staff have undertaken their mandatory Sepsis training, with an understanding of the serious risk of infections in Sickle Cell Disease patients. Completed.”

Source location

Response from Maylands Healthcare Surgery
Page 2 · response
Published 19 December 2025

Open published response

Source evidence

How this respondent action was interpreted

PFD Monitor created a concise, searchable interpretation from the published response wording shown below.

PFD Monitor interpretation

Share significant event analysis findings and learning with all practice staff.

Verbatim wording from the response

“• The practice completed an SEA regarding Urielle’s case, and shared all the learning points with staff at the Practice.”

Source location

Response from Maylands Healthcare Surgery
Page 2 · response
Published 19 December 2025

Open published response

Source evidence

How this respondent action was interpreted

PFD Monitor created a concise, searchable interpretation from the published response wording shown below.

PFD Monitor interpretation

Introduce a GP contract incentive to identify patients who would benefit from continuity and provide a named GP where appropriate.

Verbatim wording from the response

“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.”

Source location

Response from Department of Health and Social Care
Page 3 · response
Published 19 December 2025

Open published response
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Information checked against the published report and official responses · Data reviewed 7 Sep 2026 · About data quality and limitations

Data last updated 7 September 2026