Rohan Godhania

Regulation 28: REPORT TO PREVENT FUTURE DEATHS 

NOTE: This form is to be used after an inquest. 

REGULATION 28 REPORT TO PREVENT DEATHS  

THIS REPORT IS BEING SENT TO: 

1  The Food Standards Agency  

1  CORONER 

I am Tom OSBORNE, Senior Coroner for the coroner area of Milton Keynes 

2  CORONER’S LEGAL POWERS 

I make this report under paragraph 7, Schedule 5, of the Coroners and Justice Act 
2009 and regulations 28 and 29 of the Coroners (Investigations) Regulations 2013. 

3  INVESTIGATION and INQUEST 

On 02 November 2022 I commenced an investigation into the death of Rohan 
GODHANIA aged 16. The investigation concluded at the end of the inquest on 21 July 
2023. The narrative conclusion of the inquest was: 

The deceased was admitted to West Middlesex Hospital on 16th August 2020. His 
hyperammonaemia and OTC deficiency was not diagnosed. The failure to carry 
out a test for ammonia that would have revealed the hyperammonaemia resulted 
in a lost opportunity to render further medical treatment that may, on the 
balance of probabilities, have prevented his death. He died on 18th August 2020. 

4  CIRCUMSTANCES OF THE DEATH 

The deceased consumed a high protein drink on 15th August 2020 and became unwell. He 
was admitted to West Middlesex Hospital. Advice was taken from the neurologists at 
Charing Cross Hospital who advised that he should be tested for ammonia. The test was not 
carried carried out. His condition deteriorated and he died from Ornithine Transcarbamylase 
Deficiency (OTC) on the 18th August 2020. 

5  CORONER’S CONCERNS 

During the course of the investigation my inquiries revealed matters giving rise to 
concern. In my opinion there is a risk that future deaths could occur unless action is 
taken. In the circumstances it is my statutory duty to report to you. 

The MATTERS OF CONCERN are as follows:  
(brief summary of matters of concern) 

High protein supplements and drinks are easily accessible to the general public, yet their 
labels fail to adequately inform consumers about the potential dangers posed to individuals 
with urea cycle disorders, such as Ornithine Transcarbamylase (OTC) deficiency.  This 
genetic disorder can lead to severe medical emergencies, requiring immediate medical 
intervention to prevent life-threatening complications. This disorder can be triggered by the 
sudden increased ingestion of protein.  

Consideration should be given as to whether the labels should prominently display a warning 
about the potential risks for individuals with an undiagnosed urea cycle disorder and include 
clear and concise information on symptoms of this and the importance of seeking immediate 
medical advice.  

Regulation 28 – After Inquest 

Document Template Updated 30/07/2021 

 
  
 
   6  ACTION SHOULD BE TAKEN 

In my opinion action should be taken to prevent future deaths and I believe you 
(and/or your organisation) have the power to take such action. 

7  YOUR RESPONSE 

You are under a duty to respond to this report within 56 days of the date of this 
report, namely by October 02, 2023. I, the coroner, may extend the period. 

Your response must contain details of action taken or proposed to be taken, setting out the 
timetable for action. Otherwise you must explain why no action is proposed. 

8  COPIES and PUBLICATION 

I have sent a copy of my report to the Chief Coroner and to the following Interested 
Persons 

The family of Rohan Godhania  
West Middlesex Hospital NHS FT  
Imperial College NHS FT 

I am also under a duty to send a copy of your response to the Chief Coroner and all 
interested persons who in my opinion should receive it. 

I may also send a copy of your response to any person who I believe may find it useful or 
of interest. 

The Chief Coroner may publish either or both in a complete or redacted or summary 
form. He may send a copy of this report to any person who he believes may find it useful 
or of interest. 

You may make representations to me, the coroner, at the time of your response about the 
release or the publication of your response by the Chief Coroner. 

9  Dated: 09/08/2023 

Tom OSBORNE  
Senior Coroner for Milton Keynes 

Regulation 28 – After Inquest 
Document Template Updated 30/07/2021

Chief Executive 

Floors 6 and 7, Clive House 
70 Petty France 
London 
SW1H 9EX 

Tom Osborne  
Senior Coroner for Milton Keynes  

Dear Mr Osborne,  

Thank you for sending a copy of the Regulation 28 report under the Coroners 
(Investigations) Regulations 2013, following the inquest into the tragic death of Rohan 
Godhania (deceased 18 August 2020).  
Thank you for agreeing an extension to the deadline, I apologise for the delay in 
responding.   

I would firstly like to extend my deepest sympathies and those of the Food Standards 
Agency (FSA) to the family of Rohan. 

The FSA is an independent government department responsible for protecting public 
health and consumers’ wider interests in relation to food in England, Wales and 
Northern Ireland. Food Standards Scotland (FSS) is an independent public body with 
responsibility for food policy in Scotland.  

Responsibilities for food and feed safety and hygiene; nutrition and health claims, 
standards and labelling; and food compositional standards and labelling are devolved.  
This means the FSA has different policy responsibilities within England, Wales and 
Northern Ireland. 

Read the FSA’s Privacy Policy and Privacy notice Private Office Correspondence for 
more information about how we handle your personal data. 

 
 
 
  
 
 
 
  
 
 
 
 
 The FSA has responsibility for food and feed safety and hygiene in England and Wales, 
food compositional standards and labelling policy in Northern Ireland and Wales, and 
nutritional health claims and nutritional labelling in Northern Ireland.  
In England responsibility for food compositional standards and labelling policies rests 
with the Department of Environment, Food and Rural Affairs (DEFRA).  
Nutritional health claims and nutritional labelling responsibility rests with the 
Department of Health and Social Care (DHSC) in England and the Welsh Government in 
Wales. 

We note your recommendation that “Consideration should be given as to whether the 
labels should prominently display a warning about the potential risks for individuals 
with an undiagnosed urea cycle disorder and include clear and concise information on 
symptoms of this and the importance of seeking immediate medical advice” and your 
concern that “future deaths could occur unless action is taken”.  

The primary purpose of food labelling is to help consumers make safe and informed 
choices and to alert specific consumers of the potential for harm. This information is 
provided through general or sometimes more specific labelling.  

The mandatory ‘back of pack’ nutrition labelling legislation already requires the 
amount of protein as well as sugar, fat and salt to be shown in the nutrition panel on a 
pre-packed product. The information provided is there to help consumers eat a 
balanced diet. It can also be useful for those wanting or needing to manage the level 
of protein they consume for example where a pre-diagnosed condition exists. 

Allergen labelling is a good example of more specific food safety labelling for people 
with known food hypersensitivities. Product ingredients will be listed with any of the 
14 major allergens present highlighted in bold allowing consumers to more easily 
identify and avoid foods/ingredients which may cause them harm.  
Another example would be food and drinks that contain the sweetener aspartame 
which must display the warning “contains a source of phenylalanine” to help sufferers 
of Phenylketonuria (PKU) protect themselves.     

However, information given on food labels can only be of value to individuals as a 
preventive measure for a particular condition if they know they have it and have been 
advised by a health professional on the action to take (e.g., what food to avoid). 

As noted above, nutritional and broader health advice and whether and how it could 
be included on labelling is the responsibility of DHSC in England. We will share your 
report with DHSC so that they can more fully consider your recommendation for 
additional labelling.  
It may also be worth you writing to them directly, copied to DEFRA as the department 
responsible for food compositional standards and labelling 

Read the FSA’s Privacy Policy and Privacy notice Private Office Correspondence for 
more information about how we handle your personal data. 

 
 
 I would once again like to extend our deepest condolences to the family of Rohan 
Godhania. 

Yours sincerely, 

Chief Executive  

Let’s keep connected: 

    food.gov.uk/facebook 

  @foodgov 

  @foodgov 

Read the FSA’s Privacy Policy and Privacy notice Private Office Correspondence for 
more information about how we handle your personal data.

Tom Osborne 
Senior Coroner Milton Keynes 
The Coroner’s Office  
Civic Offices 
1 Saxon Gate East  
Central Milton Keynes 
MK9 3EJ  

Dear Mr Osborne, 

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

30 October 2023  

Re: Regulation 28 Report to Prevent Future Deaths – Rohan Godhania who 
died on 18th August 2020.  

Thank  you  for  your  Report  to  Prevent  Future  Deaths  (hereafter  “Report”)  dated  9th 
August  2023  concerning  the  death  of  Rohan  Godhania  on  18th  August  2020.  In 
advance of responding to the specific concerns raised in your Report, I would like to 
express my deep condolences to Rohan’s family and loved ones. NHS England are 
keen to assure the family and the coroner that the concerns raised about Rohan’s care 
have been listened to and reflected upon.  

I am grateful for the further time granted to respond to your Report, and I apologise for 
any anguish this delay may have caused to  Rohan’s family or friends. I realise that 
responses to Coroner Reports can form part of the important process of family and 
friends coming to terms with what has happened to their loved ones and appreciate 
this will have been an incredibly difficult time for them. 

Age classification of 16 –18 year olds within the NHS  

In your Report you raised the concern that there appeared to be a lack of clarity and 
consistent  guidance  across  the  NHS  regarding  the  appropriate  classification  of 
teenagers aged 16 -18, and whether they should be treated as paediatric patients or 
as adults.  

Most  children’s  hospitals/departments  are  not  commissioned  to  provide  secondary 
and tertiary services for young people over the age of 16, with the exception of some 
rare cancers and those over this age are therefore often treated as adult patients. To 
improve  young  people’s  experience  of  care,  outcomes  and  continuity  of  care,  NHS 
England  are  committed  to  moving  to  a  ‘0-25  year  service  model’,  offering  person-
centred and age-appropriate care for mental and physical health needs, rather than 
arbitrary transitions to adult services based on age and not need. We recognise that 
healthcare transition should be need and complexity based, not managed solely on 
diagnosis or what is routinely provided. 

NHS  England’s  Children  and  Young  People’s  Transformation  Programme,  working 
with  key  stakeholders,  are  developing  guidance  to  aid  the  design  of  transition 
pathways that improve health outcomes for all young people. The support package 
will outline key principles of a 0 – 25 model of care and the core capabilities of staff 

                                                                                                                       
 
 
 
 
 
 
 
 
 
 
 
 
 
  
 required  for  a  consistent  approach,  while  ensuring  providers  have  the  flexibility  to 
decide what arrangements work best for them.  

NHS  England  has  been  sighted  on  Chelsea  and  Westminster  Hospital  NHS 
Foundation  Trust’s  review  of  Rohan’s  case.  They  have  advised  that  it  is  standard 
operating procedure within the Trust that patients aged over 16 years are admitted to 
adult wards. The only exception is those with chronic health care issues who have not 
yet been fully admitted to adult care. The majority of patients within the Trust over 16 
years of age are treated in the adult Emergency Department and are admitted to adult 
wards.  

Guidance for testing for ammonia in Emergency Departments  

You also raised the concern that there is a lack of guidance for testing ammonia levels 
in patients who present ‘in extremis’ with an unknown cause.  

NHS England  would not  be the  lead  organisation  for  the  relevant  clinical guidance, 
and you may wish to refer your concerns to the Royal Colleges. NHS England has, 
however,  engaged  with  the  Royal  College  of  Emergency  Medicine  (RCEM)  on  this 
case, and they have advised that they will be making an amendment to their existing 
Acute  Behavioural  Disturbance  guidelines  to  specifically  mention  ammonia  levels, 
should a clinician be considering the need for a metabolic screen.  

The  Royal  College  of  Paediatrics  and  Child  Health  (RCPCH)  guidelines  for  the 
management of children and young people with an acute decrease in conscious level 
also  indicates  plasma  ammonia  testing  for  young  people  with  Rohan’s  clinical 
presentation.  

NHS  England’s  National  Patient  Safety  Team  have  also  undertaken  work  with  the 
Royal College of Pathologists (RCPath) on the specific issue of hyperammonaemia 
and ammonia testing. As a result of this a Patient Safety Bulletin was issued.  This 
highlighted the need for ‘prompt measurement of ammonia and action in the event of 
hyperammonaemia’.  

The  cause  of  Rohan’s  hyperammonaemia  was  Ornithine  Transcarbamylase  (OTC) 
deficiency, which is a very rare condition, and in Rohan’s case, there was also late 
presentation.  Urgent  and  Emergency  Care  (UEC)  specialist  colleagues  at  NHS 
England have also advised that there can be complexity in interpreting the results of 
ammonia levels testing. The Regulation 28 Working Group (please see penultimate 
paragraph for more details) will be discussing this case to consider any further actions 
and  regional  representatives  will  be  sharing  for  awareness  of  this  case  with  health 
systems across England.  

NHS England has been sighted on the Trust’s review of this case and notes that an 
action plan has been put together, to include ensuring pathways to urgent specialist 
face-to-face adult neurology assessment are clear and equal for all patients over the 
age of 16, and that the Trust’s acute services should review their processes for early 
identification of treatable inherited metabolic disorders.  

 
 
 
 
 
 
 
 
 
 
 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