Prevention of Future Deaths reports · 2019

Sophie Holman

Regulation 28 report to prevent future deaths, reference 2019-0035, written 29 Jan 2019. A coroner writes one of these when an inquest reveals a risk that could cause further deaths unless something changes.

Date of report29 Jan 2019
Reference2019-0035
DeceasedSophie Holman
CoronerShirley Radcliffe
Coroner areaEast London
CategoryHospital Death (Clinical Procedures and medical management) related deaths · Child Death (from 2015)
Organisation namedBarking, Havering and Redbridge University Hospitals NHS Trust
Sourcejudiciary.uk record · original PDF
Responses published1

The report

Text recovered by OCR from a scanned PDF. OCR is imperfect: check anything you rely on against the source PDF. Reproduced verbatim, including the scan's own layout.

REGULATION 28: REPORT TO PREVENT FUTURE DEATHS

REGULATION 28 REPORT TO PREVENT FUTURE DEATHS
THIS REPORT IS BEING SENT TO:

Matt Hancock, Secretary of State for Health and Social Care, House of Commons,
London, SW1A 0AA

Simon Stevens, Chief Executive Officer, NHS England, Skipton House,
80 London Road, London, SE1 6LH

1 | CORONER

| am Dr Shirley Radcliffe, Assistant Coroner for the area of Eastern Area of Greater
London

2 | CORONER’S LEGAL POWERS

| 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.
htto:/Avww. legislation.gov.uk/uksi/2013/1629/part/7/made

3 | INVESTIGATION and INQUEST

On the 14" December 2017 an investigation was opened into the death of Sophie
Holman. The investigation concluded at the end of the Inquest on the 14" 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 12" 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 13" December
2017.

A fuller assessment, earlier steroid administration and better safety netting on the 12"
December 2017 would have prevented her death.

4 | 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: 1a: 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 & King Georges
Hospital) for general paediatrics and 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. The 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 long-
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 the inquest fall short of national guidance. The 10 year plan for the
NHS emphasises the need for a clinical network model around paediatric asthma. Four
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.

=

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 to 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
and 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.

CORONER’S CONCERNS

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

The MATTERS OF CONCERN are as follows. —

1) The medical management of this child’s asthma attacks on the innumerable
occasions she presented to her general practice and hospital was centred solely
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

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

f. No evidence of provision of a written personal acute asthma self-
management plan recommended in the UK BTS/SIGN asthma guidelines

g. No evidence that the family were informed of the risks of poor outcome
evidence in this child’s history

h. 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

i. 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

2979

.

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.

4) 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)
b)

c)

qd)
e)
f)

ce)
h)

No clear agreed practice protocol for managing asthma

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

A failure to recognise the risks of future poor outcome such as

a. 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

b. 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

Failure to objectively assess severity and progress when treating acute

asthma attacks as per the UK BTS/SIGN 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 BTS/SIGN

asthma guidelines

Failure to follow up after attacks as detailed in the NICE Quality Statement

of 25, 2013

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

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 to obtain medical assistance

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)

b)

c)

d)

e)

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)

Failure to recognise the need for and initiate referral of this child to a
specialist respiratory service as recommended in the NRAD
recommendations

Failure to take appropriate action when it was known that the family had a
home nebuliser

Failure to implement the recommendations in the NICE Quality Statement
25, and BTS/SIGN guideline to ensure a pre-discharge review of the child’s
asthma by an appropriately trained individual

Failure to effectively communicate changed medication in 2013 of the child

g)

to the general practitioner

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

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 due 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 ‘Why asthma still kills” on the 6th May 2014, 3 % years before Sophie’s
death. The 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

d) Insufficient collection of Inhaled corticosteroids in her last year of life

e) Requiring 3 different asthma drugs

f) Previous severe attacks

g) Failure to attend appointments

h) 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

ACTION SHOULD BE TAKEN

In my opinion action should be taken to prevent future deaths and | 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 and 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 and 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’.

A. Anational consistent policy for management of asthma should be
implemented based upon clear, uniform, easy to understand guidelines
clarifying:

a. The chronicity of asthma
b. Recognising risk and when to refer to specialist services.

B. The recently announced 10 year plan for the NHS offers an opportunity
for implementing change, for example by ensuring that every Primary
Care Network, caring for groups of 50000 patients, should have access
to an expert led paediatric asthma service with provision of an expert
respiratory trained nurse and the facilities to ensure patients like Sophie
and others like Michael Urielly and Tamara Mills have access to a
named individual responsible for overseeing their care

YOUR RESPONSE

You are under a duty to respond to this report within 56 days of the date of this report,
namely by the 26"" March 2019. 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.

COPIES and PUBLICATION

| have sent a copy of my report to the Chief Coroner,
in: Sophie Holman, the Director of Public Health Mr Matthew Cole,

the experts.
lam also under a duty to send the Chief Coroner a copy of your response.

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.

[DATE] 24 } ‘ {1 4 - [SIGNED BY CORONER] We Seu

Responses

1 response published against this report on judiciary.uk. A response is a body's written reply to the coroner's concerns; publication is at the discretion of the Chief Coroner's office, so an absent response does not mean nobody replied.

Response from NHS England (PDF)
INHS'

Professor Stephen Powis
National Medical Director

Dr Shirley Radcliffe 6" Floor, Skipton House
HM Assistant Coroner 80 London Road
Inner West London SE16LH
Westminster Coroner's Court

65 Horseferry Road

London ‘P21 April 2019
SW1P 2ED = e

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 29" January
2019 concerning the tragic death of Miss Sophie Holman on 13" 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 Long 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 very 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

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. Itis very clear that we must change
this, and | can confirm 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 Long 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 from 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 a key 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 key stakeholders from across the NHS and the wider public sector. The
board will be led by the Chief Executive of Birmingham Woman's 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

" https://ww.nuffieldtrust.o' .uk/research/intemational-comparisons-of-health-and-wellbeing-i
and-early-adutthood
? Published in January 2019, https:/Avwww.longtermplan.nhs.uk/

3 Primary care networks are based on neighbouring GP registered lists, typically serving natural communities of
around 30,000 to 50,000. They should be small enough to provide the personal care valued by both patients and
GPs, but large enough to have impact and economies of scale through better collaboration between practices
and others in the local health and social care system. https:/Avww.engiand.nhs.uk/ap/apfv/redesign/primary-care-
networks/
4 hitps:/A

Health and high quality care for all, now and for future generations

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 a 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)* 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, | can confirm we will also contact the Royal College of General Practice and
the Royal College 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 being 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. They 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 a 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.

Yours sincerely

Professor Stephen Powis
National Medical Director
NHS England and NHS Improvement

5 The QAG brings together all of NHS England's Regional Medical and Regional Nursing Directors to discuss and
address quality and safety issues within each region.

Health and high quality care for all, now and for future generations

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