Isaac Onyeka

Nadia Persaud 
The Coroner’s Court 
Queens Road 
Walthamstow  
E17 8QP 

Dear Coroner, 

National Medical Director  
NHS England  
Wellington House 
133-155 Waterloo Road  
London 
SE1 8UG 

30 April 2024 

Re: Regulation 28 Report to Prevent Future Deaths – Isaac Onyeka who died 
on 31st May 2023.  

Thank you for your Report to Prevent Future Deaths (hereafter “Report”) dated 11th 
March 2024 concerning the death of Isaac Onyeka on 31st May 2023. In advance of 
responding to the specific concerns raised in your Report, I would like to express my 
deep condolences to Isaac’s family and loved ones. NHS England are keen to assure 
the  family  and  the  coroner  that  the  concerns  raised  about  Isaac’s  care  have  been 
listened to and reflected upon.   

The first concern you raised was that there is a knowledge gap amongst the public 
(parents  of  children  with  Down’s  Syndrome  in  particular),  and  amongst  some 
healthcare practitioners in relation to the immune deficiency associated with Down’s 
Syndrome. NHS England manages the NHS website on behalf of the Department for 
Health  and  Social  Care.    The  NHS  website  for  England  is  the  UK's  biggest  health 
website, with more than 50 million visits every month.  The NHS website is subject to 
governance  and  assurance  processes,  ensuring  content  is  regularly  reviewed  and 
represent current medical practice.    

The NHS website has information for the public on many conditions, including Down's 
syndrome.  The  pages  contain  summary  information  and  also  signpost  patients, 
parents,  and  carers  to  third  sector  organisations,  such  as  the  Down's  Syndrome 
Association  and  Down  Syndrome  UK,  for  more  comprehensive  information  about 
Down's syndrome, and associated health management. Both the Down's Syndrome 
Association  and  Down  Syndrome  UK  publish  public  facing  information  about 
vulnerability to infection of people with Down's syndrome.  These third-party websites 
are not managed by NHS England.   

The NHS website has a page about  Other health conditions and Down's syndrome 
This page signposts people to annual health checks and states "People with Down's 
syndrome are more likely to become unwell through an infection..." in the context of 
encouraging  adherence  with  vaccination  programmes.  To  support  the  public,  the 
“other health conditions” page has been updated to make clearer the risks of increased 
susceptibility  and  consequences  of  infection.  The  ‘Who’s  most  likely  to  get  sepsis’ 
section of our sepsis pages has also been updated to include genetic disorders such 
as Down’s syndrome. 

                                                                                                                       
 
 
 
 
 
 
 
 
 
  
  
 
 
  
 We agree that good understanding and awareness around sepsis amongst parents/ 
carers  and  clinicians’  relation  to  children  and  young  people  is  crucial.  This  is 
particularly important in respect to infants and young children. Children under five are 
at  greater  risk  of  sepsis  than  older  children  and  those  with  compromised  immune 
systems,  including  children  with  Down’s  Syndrome  may  be  at  an  increased  risk  of 
complications from infections including sepsis.  

NHS  England’s  Learning  Disability  and  Autism  Programme  will  work  with  allied 
stakeholders so that they can help with raising awareness amongst parents/ carers of 
autistic  children  and  young  people  and  those  with  a  learning  disability  or  special 
educational needs and disabilities (SEND) families about the signs of sepsis as well 
as  understanding  that  signs  of  sepsis  may  be  easier  to  spot  on  the  palms  or  feet 
amongst children and young people with black or darker skin.  

NICE Guidance for varicella zoster chickenpox and complications includes information 
about complications that may arise in children as a result of having chickenpox. 

Your second concern was that health advisers with NHS111 do not have access to GP 
electronic summaries and that they do not therefore have the background diagnoses 
of  the  patient  concerned.  The  NHS  Pathways  triage  system  is  a  clinical  decision 
support system (CDSS) supporting the assessment of patients presenting to urgent 
and  emergency  services.  The  system  is  owned  by  the  Department  for  Health  and 
Social Care and delivered by the Transformation Directorate of NHS England.  NHS 
Pathways  supports  NHS  111  services  nationally  by  providing  a  triage  system  to 
assess symptoms of patients over the telephone. It does not seek to diagnose patients 
but is instead built around a clinical hierarchy by presenting a series of questions in 
order for the most appropriate clinical response or disposition to be determined based 
on the presenting symptoms. 

Health Advisers in NHS 111 telephone services are trained to use NHS Pathways by 
NHS  111  providers.  These  highly  trained,  non-clinical  staff  use  the  NHS  Pathways 
system  to  support  assessments  so  that  cases  can  be  triaged  and  directed  to  an 
appropriate service, within a suitable timeframe. 

Where medical terms or diagnoses are volunteered by the caller, non-clinical Health 
Advisors are trained to identify these calls as “complex”, being outside their scope of 
practice and for transfer to a clinician. This is so that the clinician can exercise clinical 
judgement. 

GP electronic summaries contain clinical terms. Presenting such information to non-
clinical Health Advisers would be outside the scope of practice for non-clinical staff. 
This  is  because  they  do  not  have  the  clinical  training  required  to  interpret  the 
information  held  in  these  records,  nor  do  they  have  a  mandate  to  apply  clinical 
judgement. It is the case, however, that Summary Care Records (SCRs) are visible to 
clinically trained staff in urgent and emergency care services. This is managed through 
local records sharing agreements. 

 
  
 Where  appropriate,  and  in  this  case,  the  NHS  Pathways  system  prompts  Health 
Advisers to seek out from callers whether a pre-existing condition is present that can 
make  infection  very  serious,  as  is  the  case  for  Down’s  syndrome.  Sadly,  in  this 
instance, the question, though presented, was answered in the negative, meaning the 
opportunity to reach a higher disposition was missed. 

Your  third  concern  was  that  there  is  no  central  resource  for  assisting  families  to 
recognise  signs  of  sepsis  in  patients  with  darker  skin.  It  is  well  recognised  and 
publicised  that  sepsis  is  hard  to  diagnose  and  over  the  years  there  have  been 
numerous initiatives and solutions to try to improve the early recognition and prompt 
the treatment of sepsis to prevent complications including death. 

Transformation and redesign of the sepsis pages of the NHS website was conducted 
in 2022. During this process the team consulted with stakeholders, including the UK 
Sepsis Trust. They performed user research and tested the page with users, including 
parents of children that had not had sepsis Based on the results of the testing and 
consultation, the team opted not to include any images on the page, but instead to 
emphasise the need to obtain emergency help from 999/Accident & Emergency (A&E) 
or urgent help from 111 if they/their child had any of the symptoms in the care card. 

Care cards are visible on relevant pages of the NHS website, prompting further action 
by the reader in the presence of symptoms or findings. Based on the outcomes of the 
research, the page layout of the sepsis pages differs from those of other conditions. 
Because of the nature of this condition, the team found that the care cards - emergency 
care card (the red/black card) and an urgent card (red/white card) – should be located 
towards the beginning of the page, ahead of more detailed background information. 
On most other condition pages these care cards are included towards the end of the 
page after background information on the condition. 

The  NHS  website  has  information  for  the  public  on  sepsis  which  emphasises  that 
sepsis  can  be  hard  to  spot  in  babies,  young  children,  and  people  with  learning 
disabilities. The first section on the page is titled “Check if it’s sepsis”. The first point 
on the emergency care card, highlighted in red and black, says “Call 999 or go to A&E 
if:” 

“A baby or young child has any of these symptoms of sepsis: 
•  blue, grey, pale, or blotchy skin, lips, or tongue – on brown or black skin, this 

may be easier to see on the palms of the hands or soles of the feet”. 

Similarly, the emergency care card (“Call 999 or go to A&E if:”) on the skin rash page 
says:  

"On brown and black skin, it may be easier to see the rash or colour changes 
on the soles of the feet, palms, lips, tongue and inside the eyelids." 

More generally, the NHS website Team are committed to include written content and 
(where appropriate) images of rashes and skin symptoms on a different range of skin 
tones.  In 2020, user research interviews with people of colour with skin conditions 
were conducted and a skin tone survey was posted on conditions pages for cellulitis, 

 
 
 
 
  
 
 contact dermatitis and scarlet fever. The learnings around skin tone language were 
used to inform changes to the page on Chickenpox, which underwent user testing in 
2021.  This work continues across many areas of the NHS website. 

As a result of your Report the Website Team will review whether to include images 
videos on the sepsis page to support identification of visible symptoms of sepsis. 

I would also like to provide further assurances on national NHS England work taking 
place around the Reports to Prevent Future Deaths. All reports received are discussed 
by  the  Regulation  28  Working  Group,  comprising  Regional  Medical  Directors,  and 
other clinical and quality colleagues from across the regions. This ensures that key 
learnings and insights around preventable deaths are shared across the NHS at both 
a national and regional level and helps us pay close attention to any emerging trends 
that may require further review and action.   

Thank you for bringing these important patient safety issues to my attention and please 
do not hesitate to contact me should you need any further information.  

Yours sincerely,  

National Medical Director