Dear Mr Osborne,

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

30 October 2023

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.

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.