Urielle Kuyenga

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

Dear Mr Irvine, 

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

www.bartshealth.nhs.uk 

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.  

 
 
 
         
 
  
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
  
 
 
 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.  

Yours sincerely 

REPORT SIGNATURE 

Chief Medical Officer

HM Coroner Graeme Irvine 
Walthamstow Coroner's Court 
Queens Road Walthamstow 
E17 8QP 

Dear Mr Irvine,   

Parliamentary Under-Secretary of State 
for Public Health and Prevention 

39 Victoria Street 
London 
SW1H 0EU 

28 January 2026 

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.   

Yours sincerely,

MAYLANDS HEALTHCARE
300 UPPER RAINHAM ROAD, HORNCHURCH, ESSEX, RM12 4EQ

MR G IRVINE
SENIOR CORONER
EAST LONDON
Walthamstow Coroner's Court
Queens Road
Walthamstow
E17 8QP

20th January 2026

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.

Yours sincerely

Partners Maylands Healthcare

HM Coroner’s Office  
HM Senior Coroner Graeme Irvine  

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  

 
 
 
 
 
 
 
 
 
 
 
 
 
 
 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.  

Yours Sincerely 

 Head of Governance, Nursing & AHPs 

Legal\. 

2 of 2