Sophie Holman

PFD Report Partially Responded Ref: 2019-0035
Date of Report 29 January 2019
Coroner Shirley Radcliffe
Coroner Area London (East)
Response Deadline est. 21 July 2019
Coroner's Concerns (AI summary)
Fragmented asthma care lacked coordinated records, long-term management plans, and guideline adherence, resulting in missed risk factors, excessive medication, and no clear clinical responsibility.
View full coroner's concerns
1) The medical management of this child's asthma attacks on the innumerable occasions she presented to her general practice and hospital was centred on treating the immediate presentation as an isolated acute event seeking its stabilisation and returning her to the care of her family
2) There was No coordinated record of these occasions No analysis of the frequency or circumstances of these events No analysis of the underlying chronic asthma condition
d. No appreciation of the risk factors for future attacks and death due to asthma in this child No long-term management plan for the care of this child despite innumerable attendances for attacks and failure of the parents to bring the child on occasions for routine hospital and practice appointments No evidence of provision of a written personal acute asthma self-management plan recommended in the UK BTSISIGN asthma guidelines No evidence that the family were informed of the risks of poor outcome evidence in this child's history No evidence that anyone considered referring this child as recommended in the NRAD, to a respiratory specialist or severe asthma service for investigation, characterisation of the nature and phenotype of this child's asthma so that a long-term management and treatment plan could be formulated and implemented No clear understanding or awareness by the health professionals caring for Sophie of the current UK asthma guidelines, the recommendations of the NRAD or of the prescribing advice in the British National Formulary for the management of asthma
3) As in the case of two recent child asthma deaths resulting in Regulation 28 statements (Michael Uriely and Tamara Mills) , despite the presence of numerous health professionals involved no single individual or organisation took overall responsibility for assuming management of her care overall: and solely

In and of itself this episode demonstrates a profound and woeful indication of the lack of understanding of how this condition; its recurring nature can and should be managed by someone with the proper training and understanding of this chronic respiratory disease_ In the primary care practice there was: a) No clear agreed practice protocol for managing asthma b) The medical records did not contain an up to date summary of current and past problems; in particular correspondence from hospitals following treatment for asthma attacks was not Read Coded: As a result clinicians consulted could not readily see the evidence of this girls chronic poorly controlled asthma c) A failure to recognise the risks of future poor outcome such as Excess salbutamol prescriptions after the publication of the NRAD in May 2014. The child was prescribed 28, 22, 30 and 16 of these inhalers in 2014,2015,2016 and 2017 by her general practice Failure to recognise the only 5 of the required preventer inhalers were collected in Sophie's final year of life No clear supervision of junior doctors and nurses delegated to provide asthma care e) Failure to objectively assess severity and progress when treating acute asthma attacks as per the UK BTSISIGN asthma guidelines Failure to recognise that absence of symptoms and distress does not exclude the presence of a severe attack; as highlighted in the UK BTSISIGN asthma guidelines g) Failure to follow up after attacks as detailed in the NICE Quality Statement of 25, 2013 h) No clear evidence of detailed specific safety netting advice and over-reliance on prescription of unlicensed, non-specific based high dose salbutamol 'weaning plans' which may have masked recognition of deteriorating signs due to a requirement for excess reliever medication in Sophie's final fatal attack which may have led the parents to seek help earlier than 24 hours after leaving the surgery Potentially dangerous advice on occasions: in particular when a nurse sent the child home and advised mother to administer reliever treatment with a nebuliser at home for an asthma attack j) No evidence of provision of a written Personalised Asthma Action Plan for recognition of uncontrolled asthma and attacks and any action to be taken by the family and how and when t0 obtain medical assistance k) There was only one example where one of the 16 general practitioners who treated this child arranged a post-attack follow-up review soon after attacks No attempt to increase the medication dose for three and a half years despite at least 14 recurring asthma attacks In the secondary care there was: a) Failure to recognise and act upon the underlying chronic condition punctuated by a number of severe attacks with life threatening features one of which was a near-fatal attack where Sophie was 'blue and unresponsive' with an oxygen saturation of 86% (2.7.2012) b) Failure to recognise the need for and initiate referral of this child to a specialist respiratory service as recommended in the NRAD recommendations c) Failure to take appropriate action when it was known that the family had a home nebuliser d) Failure to implement the recommendations in the NICE Quality Statement 25, and BTSISIGN guideline to ensure a pre-discharge review of the child'$ asthma by an appropriately trained individual Failure to effectively communicate changed medication in 2013 of the child to the general practitioner f) Implementation of a hospital policy whereby this child was discharged from secondary care three times because of failure of the parents to bring the child to planned outpatient appointments g) No clear evidence of detailed specific safety netting advice and over-reliance on prescription of unlicensed, non-evidence based high dose salbutamol 'weaning plans' which may have masked recognition of deteriorating signs to a requirement for excess reliever medication
5) The child's parents failed on occasion to bring the child to routine appointments; however there was no communication by any health professional alerting the health visitors or safeguarding team regarding this. On the other hand, the child's asthma attacks were treated in hospital and general practice 'as an acute illness' without detailed patient education or a co-ordinated long-term management plan. There was little evidence of any patient education particularly aimed at ensuring that the child's parents were aware of the fact that she was at risk of poor outcome even asthma death according to her risk factors; perhaps explained the behaviour of her parents_
6) The National Review of Asthma Deaths (NRAD) was published in a report entitled asthma still kills" on the 6th May 2014, 3 %z years before Sophie's death: process of management of Sophie's asthma demonstrates many of the same examples of poor practice providing clear evidence of why 'asthma still kills' and which led to the early death of this child: a) Failure to recognise ongoing and future risk by general practitioner and secondary care b) Repeated attacks despite asthma treatment c) Excess salbutamol (reliever) prescriptions and the presence of a home nebuliser Insufficient collection of Inhaled corticosteroids in her last year of life e) Requiring 3 different asthma drugs f) Previous severe attacks Failure to attend appointments
9) Failure to refer this child to a tertiary respiratory service the NRAD recommended referral of anyone having 2 or more asthma attacks in a year
Responses
NHS England NHS / Health Body
Action Planned
NHS England confirms that the Trust involved has been contacted and has reviewed the concerns raised. They will also contact the Royal College of General Practice and the Royal College of Paediatrics and Child Health to raise awareness about actively managing childhood asthma and the importance of asthma care plans and will raise the possibility of preventable paediatric asthma deaths classified as a 'Never Event'. (AI summary)
View full response
Dear Dr Radcliffe, Re: Regulation 28 Report to Prevent Future Deaths Miss Sophie Holman;
13.12.2017 . Thank you for your Regulation 28 Report (hereinafter the 'report') dated 2gth January 2019 concerning the tragic death of Miss Sophie Holman on 13th December 2017. Before seeking to respond to your report would like to first express my deep condolences to Sophie's family: Your report concludes that Sophie's death was as a result of an asthma attack: Following the inquest; you raised concerns regarding the care Sophie had received across both primary and secondary care, and you also urged the National Health Service to take action and revisit national policy around asthma for children, particularly in light of the NHS Term Plan: From the information you have provided, it is apparent that Sophie's condition was not managed in accordance with published asthma guidelines. Tragically, note we can draw comparison to Michael Uriely and Tamara Mills whose deaths were also associated with treating asthma episodes separately rather than managing their asthma as a long-term condition: For this case can confirm Barking, Havering and Redbridge University Hospitals NHS Trust ("Trust") have been contacted directly and they have assured us that they have taken seriously the findings of the inquest and have held internal meetings to review the troubling concerns raised. understand that the Serious Investigation Report as presented to the Coroner has also been shared with the Clinical Commissioning Groups (CCGs) covering the Barking, Havering and Redbridge health system who are now working closely with the Trust to develop more extensive local system plans to improve services and share learning They have assured us that immediate actions have been taken to improve the quality of their asthma care pathways to prevent future deaths. Health and high quality care for all, now and for future generations Long very

In terms of national policy, note that in previous communication to you we detailed steps NHS England were taking in working with the wider NHS with a view to improving asthma care for children: However; despite our ongoing efforts, child asthma deaths still occur and we recognise that much more needs to be done' Sadly; a new study' published in February this year; from the Nuffield Trust think tank and the Association for Young People"s Health; found that young people in the UK are more likely to die from asthma than those in other wealthy countries. It is clear that we must change and can confim we are determined to do more to ensure that the NHS appropriately manages and improves the care of childhood asthma across England, with a view to preventing further asthma related deaths. NHS England published the NHS Term Plan? in January 2019. Within the plan we committed to focusing,on the health and care of children and young people, and to launch a 'Children and Young People's (CYP)Transformation Board' . As part of this we will work to develop new models of integrated care that will bring together services and connect vital information for children and young people We are particularly keen to focus on continuing healthcare needs and Autumn 2019 we will roll out CYP clinical networks for long-term conditions focusing on asthma, epilepsy and diabetes: These CYP networks will link to primary care networks? whilst focusing specifically on the needs of children, young people and their families and the improvement of services by sharing best clinical practices and supporting the integration of paediatric skills across services. can confirm that improving the quality of care will be focus for the new CYP Transformation Board, and we will prioritise action on conditions such as asthma where our clinical outcomes are unacceptable. This work will start from April 2019 and bring together stakeholders from across the NHS and the wider public sector The board will be led by the Chief Executive of Birmingham Womans and Children's Hospital can confirm that we will include a review of national asthma policy and existing clinical guidelines, including the 2014 NRAD (National Review of Asthma Deaths) report' _ in order to determine appropriate actions to be taken on both a national and local level to establish better consistency: This may include but will not limited to: a national recommendation for appropriate asthma management plans; development work to enable systems alerts and follow ups; safety netting and self-care advice for patients and parents; and the promotion of educational material for professionals We will also be working to improve access to specialist paediatric care in the community, as we know this will have a positive impact, Also through the clinical networks we will continue to share examples of best practice from areas that are and-eary-adulthood httos:llwww nuffeldtrustor ukresearchlintemational-comparsons-of-health-and-wellbeing-in-adolescence: Published in January 2019, https Iw longtermplan nhsukl Primary-care networks are based on neighbouring GP registered Iists, typically serving natural communities of around 30,000 to 50,000. should be small enough to provide the personai care valued by both patients and GPs,but large enough (0 have impact and economies of scale through better collaboration between practices and olhers in the local health and social care system. htips IIengland nhs_ukgplapiviredesigniormar -Care- nelworksl htps Ilwhaip org_uklfomer_programmesInational-review-of-asthma-dealhs-nradl# XKRhaTaouYM Health and high quality care for all, now and for future generations very this, Long from key key They

delivering asthma services well, such as: the community Paediatric hospital at home service at the Whittington Hospital where a single named point of contact is assigned to each child and follow up appointments with a GP after any hospital admission are organised within given timeframe; the work of Health London Partnerships (HLPs) who have pioneered developing local asthma standards, digital support tools and enlisted pharmacy help to improve inhaler techniques which was shared at NHS England's Quality Assurance Group (QAG)S in June 2017 ; and from Connecting Care for Children (CC4C) who have developed integrated and joined up care from the hospital ward to GP centre In addition to the CYP Transformation Board and Programme being established shortly; I can confirm we will also contact the Royal College of General Practice and the Royal of Paediatrics and Child Health, to discuss what more can be done to raise awareness amongst healthcare professionals about the need to actively manage childhood asthma and the importance of asthma care plans In addition, within your letter you also ask about the possibility of preventable paediatric asthma deaths classified as a 'Never Event' . As stated previously the National Clinical Lead for children and young people and clinical advisers with in the Healthy London Partnerships reviewed this possibility. concluded that as Never Events usually only apply to in hospitals care not the wider NHS system and that not all asthma deaths are preventable that this might not be the best driver to enact the major system change we need. We hope that the urgent work we are taking forward now on paediatric asthma , though combination of interventions driven by the CYP Transformation Board, will go some way in preventing future child asthma deaths Thank you for bringing this important patient safety issue to my attention again, we will endeavour to do more on childhood asthma, Please do not hesitate to contact me should you need any further information.
Sent To
  • Department of Health and Social Care
  • NHS England
Response Status
Linked responses 1 of 2
56-Day Deadline 21 Jul 2019
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Source: Courts and Tribunals Judiciary

Report Sections
Investigation and Inquest
On the 14th December 2017 an investigation was opened into the death of Sophie Holman: The investigation concluded at the end of the Inquest on the 14t January 2019. The conclusion of the Inquest was a narrative conclusion: Sophie Holman was a 10 year old girl who suffered from chronic asthma Her long-term management by primary and secondary care was inadequate. On the 12th December 2017 she attended her General Practitioner with an acute exacerbation of her asthma_ She was treated and sent home with a prescription for steroids_ She collapsed and died from an asthma attack the following day: She was pronounced life extinct at Queens Hospital, Romford on the 13th December 2017 A fuller assessment; earlier steroid administration and better safety netting on the 12th December 2017 would have prevented her death.
Circumstances of the Death
Sophie Holman was born on 23.7.2007 and died prematurely due to a severe asthma attack on 13.12.2017 at the age of 10 years 5 months. Her asthma first started troubling her at the age of 9 months and she was first admitted to hospital with an attack at the age of 20 months. She attended her general practice and three hospitals on innumerable occasions for asthma attacks throughout the next 10 years -48 in all _ 26 times in the last four years of her life. She was cared for by a series of medical personnel in primary and secondary care; the treatment was directed to alleviate the symptoms of the immediate presenting and acute attacks. Some of these attacks had life threatening features of asthma however; there was no appreciation that these episodes were clear signs of her underlying poorly controlled possibly severe chronic asthma

She attended the Ripple Road Surgery with her mother on the morning of the 12th December 2017 with breathing difficulties that had deteriorated over the previous week and was treated for an asthma attack (the fourth in 12 months) by the practice nurse who called for assistance of one of the doctors. symptoms of an asthma attack Following failure to respond adequately a second dose of high dose reliever medication, alleviated her symptoms, Sophie was discharged home with a prescription for cortisone tablets and advice to take a high "weaning dose" of reliever inhaled medication every 4 hours. Sophie continued to use her reliever inhaler to try and move the mucus which she couldn't cough up, and the following morning after a night's sleep her parents decided to take her to hospital because she didn't appear to have improved from the previous day_ On the way, she became very short of breath, collapsed and despite resuscitation attempts by bystanders , paramedics and the hospital paediatric team, sadly she died at 22.49 that night Following a post-mortem examination the cause of death was noted as: Ia: Sudden Death in Bronchial Asthma and ii: Lower Respiratory Tract Infection Sophie was admitted 4 times to the Barking, Havering and Redbridge University Hospitals NHS Trust, a trust operating a 2 site model (Queens Hospital & Georges Hospital) for general paediatrics A&E. Whilst acute care was adequate, this child had been seen in A&E 18 times with acute asthma; over 70% of these encounters being retrospectively characterised as severe life threatening: Each of these events were treated appropriately as an acute event but were not viewed collectively, or in terms of severity as unusual, life threatening or as part of a long term potentially fatal condition: Clinical notes were not readily available across the two sites and temporary hand written folders were often created and later photocopied into the clinical case notes Subsequently temporal order was lost and vital information was missing: Documentation and the standard of note keeping fell below GMC recommendations A child protection review system was in place in A&E. This collated the number of A&E visits a child had made, but this system disregarded the medical condition asthma, and so the clinicians were not alerted to the frequency of attendances_ Sophie was referred to a general paediatrician by her GP, and following acute admissions referred for follow up by 2 ward based paediatricians to the same general paediatrician for follow up. paediatrician did not have sufficient experience in asthma to identify the risks to this child, carry out pertinent investigations, or make the necessary tertiary referral. The paediatrician did not have enough knowledge to recognise the limitations of their practice Despite 12 general paediatricians within the department; there was no one with an interest in paediatric respiratory disease. No paediatric asthma nurse was employed by the Barking; Havering and Redbridge University Hospitals NHS Trust; and there was no facility to carry out objective measurements of peak flow or spirometry. Consequentially no personalised action plan was created, and no patient education delivered . Overall the department failed to view Sophie's asthma as a potentially life threatening or as a term condition requiring a long-term intervention and plan: At no time was there a communication with the family regarding the lack of adequate control severity of Sophie's condition. Sophie was not brought to 7 of 10 outpatients patients' appointments. It is likely that had the family been told the severity of Sophie's condition their attendance would have been more frequent: The Serious Incident review was initiated in December 2018, one year after the child's death: Currently the recommendations of this report; and the verbal statement of the clinicians given at inquest fall short of national guidance. The 10 year plan for the NHS emphasises the need for a clinical network model around paediatric asthma. asthma deaths in childhood have occurred within the local STP since 2016. With good medical leadership in paediatrics and asthma care Barking, Havering and Redbridge University Hospitals NHS Trust could and should play an important role in local professional education,and improved clinical care King and The long-the Four

Despite the publicised recommendations from the National Review of Asthma Deaths (NRAD) and previous Regulation 28 Statements (on preventable asthma deaths) by HM Coroners, there were many missed opportunities t0 optimise and co-ordinate Sophie's medical management during her 48 attendances and admissions in the practice and hospitals (at least 10 of which included life threatening features) and particularly in her final year when she had four asthma attacks treated in the practice_ There were a number of missed opportunities to refer this child to a specialist respiratory team for investigation to characterise the nature and triggers of her chronic asthma condition and to optimise her medical management: The medical records in the practice hospitals, lacked clear information highlighting the severe ongoing risk of poor outcome including future asthma death in the case of this child; there was no cohesive long term plan for managing Sophie's asthma with the result that no one recognised the cumulative risk factors that should have led to a specialist respiratory referral which may have resulted in a very different outcome.
Action Should Be Taken
In my opinion action should be taken to prevent future deaths believe you have the power to take such action: In the context of seeking to avoid future preventable asthma deaths, and to reduce preventable asthma attacks, the details of Sophie's inquest; the NRAD review the Regulation 28 statements on Tamara Mills and Michael Uriely identify a need by both local and national agencies to revisit the recommendations, the formal substance of training identified as appropriate for the care treatment of asthma, the nature of that disease and strategies for the long term management, care and prevention of uncontrolled asthma and re-occurring attacks_ There are undoubtedly resource issues implicated in this matter but a demonstration of resolve and an effective lead given by the Department of Health and those involved in the provision of Health Service guidance and education nationally would demonstrate a universal resolve to standardise the care of chronic asthma patients and to make preventable paediatric asthma deaths and preventable asthma attacks 'never events due Why The and and and

A national consistent policy for management of asthma should be implemented based upon clear, uniform, easy to understand guidelines clarifying: The chronicity of asthma
b. Recognising risk and when to refer to specialist services_
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