Summary Management of chronic asthma in children aged 16 years and under - Independent report by the Healthcare Safety Investigation Branch ...

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Summary Management of chronic asthma in children aged 16 years and under - Independent report by the Healthcare Safety Investigation Branch ...
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Summary
Management of chronic asthma in
children aged 16 years and under
Independent report by the
Healthcare Safety Investigation Branch I2019/010

May 2021
Summary Management of chronic asthma in children aged 16 years and under - Independent report by the Healthcare Safety Investigation Branch ...
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Summary Management of chronic asthma in children aged 16 years and under - Independent report by the Healthcare Safety Investigation Branch ...
About HSIB

We conduct independent                    patients. The safety recommendations
investigations of patient safety          we make aim to improve healthcare
concerns in NHS-funded care across        systems and processes, to reduce risk
England. Most harm in healthcare          and improve safety.
results from problems within
the systems and processes that            We work closely with patients, families
determine how care is delivered.          and healthcare staff affected by
Our investigations identify the           patient safety incidents, and we never
contributory factors that have led        attribute blame or liability.
to harm or the potential for harm to

Considerations in light of coronavirus (COVID-19)

We have adapted some of our national      healthcare system across England. For
investigations, reports and processes     this report, the way we engaged with
to reflect the impact that COVID-19 has   staff and families was revised.
had on our organisation as well as the

A note of acknowledgement

We would like to thank the family         healthcare staff who engaged with the
of the child whose experience is          investigation for their openness and
documented in this report for their       willingness to support improvements in
ongoing support and involvement.          this area of care.
We would also like to thank the

About this report

This report is intended for healthcare    in relation to the management of
organisations, policymakers and the       chronic asthma in children aged 16
public to help improve patient safety     years and under.

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Summary Management of chronic asthma in children aged 16 years and under - Independent report by the Healthcare Safety Investigation Branch ...
Our investigations

Our investigators and analysts have    Maternity investigations
diverse experience of healthcare and
other safety-critical industries and   We investigate all incidents in NHS
are trained in human factors and       maternity services that meet:
safety science. We consult widely
in England and internationally to      • the criteria of the Royal College of
ensure that our work is informed         Obstetricians and Gynaecologists’
by appropriate clinical and other        Each Baby Counts programme, or
relevant expertise.
                                       • our HSIB defined criteria for
We undertake patient safety              maternal deaths.
investigations through two
programmes:                            Incidents are referred to us by the
                                       NHS trust where the incident took
National investigations                place, and, where an incident meets
                                       the criteria, our investigation replaces
Concerns about patient safety in       the trust’s own local investigation. Our
any area of NHS-funded healthcare      investigation report is shared with
in England can be referred to us by    the family and trust, and the trust is
any person, group or organisation.     responsible for carrying out any safety
We review these concerns               recommendations made in the report.
against our investigation criteria     In addition, we identify and examine
to decide whether to conduct a         recurring themes that arise from trust-
national investigation. National       level investigations in order to make
investigation reports are published    safety recommendations to local and
on our website and include safety      national organisations for system-level
recommendations for specific           improvements in maternity services.
organisations. These organisations
are requested to respond to our        For full information on our national
safety recommendations within 90       and maternity investigations please
days, and we publish their responses   visit our website.
on our website.

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Summary Management of chronic asthma in children aged 16 years and under - Independent report by the Healthcare Safety Investigation Branch ...
Executive Summary
The purpose of this investigation is to    In early July 2019, the Child was
help improve patient safety in relation    admitted to hospital following
to the management of chronic (long-        a near-fatal asthma attack. He
term) asthma in children aged 16           remained in the paediatric intensive
years and under. It uses a real patient    care unit for a period of 13 days. He
safety incident involving a child with     was eventually discharged home
asthma, referred to as ‘the reference      almost seven weeks after admission
event’, to examine this issue.             to hospital, with an ongoing plan for
                                           community therapy support.
The reference event
                                           The national investigation
The reference event relates to a Child
who suffered a near-fatal asthma           Safety risk
attack when he was five years old.
                                           The Department of Health and Social
The Child was born prematurely and         Care shared with HSIB a report to
during his early years had a number        Prevent Future Deaths (PFD) from
of health issues, including a form of      HM Coroner relating to a child aged
chronic lung disease. Secondary to         10 years, who had died of asthma.
this, he had a ‘wheeze’ (whistling         HSIB was asked to consider whether
sound made during breathing)               it could identify further opportunities
and suffered from a ‘wet cough’            for learning. Prior to this, there had
(producing mucus).                         been two other PFD reports relating
                                           to the deaths of children between
Due to his complex and varying health      2014 and 2017, and all three cases
needs, the Child attended hospital         highlighted missed opportunities to
frequently either as an outpatient, an     recognise asthma as a chronic and
inpatient or for emergency care. The       life-threatening condition. There were
Child was prescribed medication to         issues around how the condition was
treat his respiratory (airway-related)     managed across both primary and
conditions, including corticosteroid       secondary care (for example, across
taken using an inhaler. This is a          GP practices and hospital-based
medicine that reduces inflammation         clinics), and concerns that care did
in the airways. However, medicines         not meet national standards.
adherence was an issue – that is, he
was not being given the corticosteroid     HSIB identified a reference event
medication in line with the prescriber’s   through a review of the Strategic
instructions. In addition, a lack of       Executive Information System (StEIS),
capacity in the respiratory outpatient     a national database of serious
clinic meant he often waited much          patient safety incidents. Additional
longer for an appointment to review        information was then gathered and
his condition than was requested by        the incident assessed against HSIB’s
the clinic consultant.                     investigation criteria. Consequently,

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the Chief Investigator authorised a          North Care Record as an effective
    national investigation.                      means of sharing clinical information

    The national investigation focused on:   •   interviews with parents of children
                                                 with confirmed or suspected asthma
•   the implications for children aged 16        to gain a wider perspective of the
    years and under of having no formal          condition, including management,
    diagnosis of asthma                          support, and treatment

•   the current systems of oversight of      •   focus groups with children and young
    care and review of their effectiveness       people to better understand asthma
                                                 from the patient’s perspective
•   the current mechanisms of sharing
    clinical information                     •   engagement with a consultant
                                                 paediatrician subject matter advisor
•   the factors which influence parental         (SMA)
    adherence to treatment plans for
    children aged 16 years and under.        •   engagement with a human factors SMA

    The following work was carried out       •   engagement with a Professor of
    during the investigation:                    Behavioural Medicine from University
                                                 College London, to better understand
•   extensive reviews of research and            the factors which influence parental/
    other literature relevant to each of         child adherence to treatment.
    the lines of inquiry
                                                 The investigation identified
•   engagement with experts in the               opportunities and system-wide
    field of asthma, nationally and              solutions to reduce the risk of
    internationally                              acute asthma attacks in children
                                                 and adolescents that result in
•   exploration of the systems currently         significant harm. The investigation
    employed in primary care for                 and the report focus primarily
    managing the barriers to asthma care         on chronic asthma in children
                                                 aged 16 years and under in the
•   engagement with the BeatAsthma+              context of safe management of the
    team and a consultant respiratory            condition between different types
    paediatrician (a specialist in the           of healthcare services. However, the
    treatment of children with airway-           findings, safety recommendations
    related conditions) to discuss               and safety observations may be
    diagnostic hubs                              helpful when considering adults with
                                                 asthma and the management of
•   engagement with a representative             other long-term conditions.
    from the Royal College of General
    Practitioners to review the Great

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Findings                                    the Child’s suspected asthma
                                                diagnosis between primary care,
    The investigation found that:               secondary care, community services,
                                                the child’s school and the family.
•   For children under-five with wheeze
    (a whistling sound made during          •   There are no nationally endorsed
    breathing) without a confirmed              training packages for healthcare
    diagnosis of asthma, the use of an          professionals caring for children
    information and management plan             with asthma.
    to monitor symptoms and adjust
    treatment serves to educate parents/    •   A combination of paper records
    carers regarding symptoms, and              and electronic systems, and the
    empower them to self-manage their           limited ability of different electronic
    child’s condition.                          systems to share information
                                                with one another, resulted in
•   In the reference event, monitoring          inconsistent and incomplete transfer
    of the Child’s response to medicines        of information about the Child’s
    was limited due to issues with the          condition and treatment.
    timeliness of follow-up paediatric
    respiratory outpatient appointments.    •   The interface between primary care
                                                and community pharmacy was limited
•   The National Review of Asthma               in relation to asthma medicines
    Deaths identified that a different,         management due to the pharmacy
    more effective and integrated               having only partial access to the Child’s
    approach to asthma care delivery            Summary Care Record (an electronic
    was needed. The review made 19              record of patient information, created
    recommendations, 12 of which were           from GP medical records, which can be
    relevant to the reference event.            seen and used by staff in other parts of
    Only one has been implemented               the health and care system).
    nationally to date.
                                            •   There was no correlation of ‘red flag’
•   The information used by NHS 111             markers such as the number of times
    to triage a breathless child over           a patient had sought emergency
    five years of age does not include          treatment, lack of improvement of
    a prompt for chest recession (an            symptoms and insufficient inhaled
    indrawn chest, which can indicate           corticosteroid prescriptions. This
    breathing difficulties) in the              meant it was not possible for primary
    supporting information, as one of           care and community services to
    the indicators of a life-threatening        identify patients at increased risk of
    breathing difficulty.                       an asthma attack.

•   There was limited communication         •   Monitoring parental adherence
    and transfer of information regarding       to asthma medicines was limited

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in terms of effectively changing           based interventions, such as
     health-related behaviour, since the        standardised information and wheeze
     reason for nonadherence was not            management plans, for the parents/
     established.                               carers of pre-school children. This will
                                                be undertaken in conjunction with the
•    There was minimal parental                 British Paediatric Respiratory Society.
     education to enhance the Mother’s
     understanding of how to manage her         Safety recommendation R/2021/125:
     son’s condition, prior to the near-fatal   HSIB recommends that NHS England
     asthma attack.                             and NHS Improvement reviews
                                                the recommendations arising from
•    The involvement of a paediatric            the National Review of Asthma
     asthma nurse after the Child’s asthma      Deaths to prioritise and ensure the
     attack enabled information and key         implementation of recommendations
     messages to be communicated to             that are outstanding.
     the Child’s Mother in a way that she
     understood.                                Safety recommendation R/2021/126:
                                                HSIB recommends that NHS Digital
•    There appears to be a general lack         reviews the supporting information
     of understanding about the potential       for triaging the breathless child up to
     seriousness of asthma.                     16 years of age, to determine whether
                                                there are features of life-threatening
•    There are no nationally endorsed           breathing difficulty.
     educational resources for children
     and families on the management of          Safety recommendation R/2021/127:
     asthma (confirmed or suspected).           HSIB recommends that NHS
                                                England and NHS Improvement
•    Children too young to consent were         supports clinical experts to work
     not eligible for advanced pharmacy         with professional bodies to develop
     services (Medicines Use Reviews            training competencies for healthcare
     and the New Medicines Service)             professionals with responsibility for
     that could assist their families           caring for children with suspected or
     in medicines management and                confirmed asthma.
     adherence to treatment.
                                                Safety recommendation R/2021/128:
HSIB makes the following                        HSIB recommends that NHS
safety recommendations                          England and NHS Improvement and
                                                NHSX identify and integrate data
    Safety recommendation R/2021/124:           items into information technology
    HSIB recommends that NHS                    systems to develop a greater
    England and NHS Improvement, as a           understanding of the risk factors
    commissioning body, supports local          present in the community.
    systems to implement evidence-

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Safety recommendation R/2021/129:            Safety observation O/2021/108:
 HSIB recommends that NHSX,                   It may be beneficial for a health
 supported by NHS England and                 intervention to be delivered to enhance
 NHS Improvement, implements                  the general public’s knowledge and
 a discovery programme into the               understanding of asthma, emphasising
 roadmap for the digital personal             the potential seriousness of the
 child health record focused on               condition. This could be linked to the
 developing support, self-reporting           modernisation of the Healthy Child
 and alerting for asthma self-care.           Programme, which is being led by
                                              Public Health England.
 Safety recommendation R/2021/130:
 HSIB recommends that Public Health           Safety observation O/2021/109:
 England develops resources for young         It may be beneficial if every
 people and their parents/carers to           child with asthma (confirmed or
 raise awareness and enable them to           suspected) has access to a healthcare
 self-manage asthma more effectively.         professional who has been trained
                                              in accordance with a nationally
HSIB makes the following                      recognised training programme
safety observations                           and undertakes regular reviews and
                                              continuing educational support.
 Safety observation O/2021/105:
 It may be beneficial if suspected           HSIB notes the following
 or possible asthma diagnosis is             safety actions
 communicated by secondary care
 services to children, families, and other    Safety action A/2021/038:
 care sectors, when asthma is being           There is now an alternative vaccine
 considered as a possibility (but not         for those children whose parents
 formally diagnosed).                         refuse the nasal flu vaccine due to the
                                              porcine gelatine content. Children in a
 Safety observation O/2021/106:               higher risk group are eligible to receive
 It may be beneficial if children were        an injectable vaccine as an alternative
 coded as having suspected asthma             to the nasal vaccine.
 if under five years of age and on
 inhalers without an asthma diagnosis,        Safety action A/2021/039:
 recognising that the lack of a formal        NHS England and NHS Improvement
 diagnosis leads to suboptimal care.          is amending the guidance for the
                                              directed enhanced service on
 Safety observation O/2021/107:               Structured Medication Reviews and
 It may be beneficial if diagnostic           medicines optimisation to clarify and
 hubs are introduced into all regions         raise awareness that children, even
 in England, modelling those already          those too young to give consent, are
 in existence, to provide specialist          eligible to receive these services.
 equipment and expertise to patients
 with asthma.

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Safety action A/2021/040:
NHS England and NHS Improvement
is amending the service specification
for the New Medicines Service, so
that it is available to patients of all
ages, including younger children with
parental/guardian consent, who may
benefit from the service.

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