Summary Management of chronic asthma in children aged 16 years and under - Independent report by the Healthcare Safety Investigation Branch ...
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WWW.HSIB.ORG.UK Summary Management of chronic asthma in children aged 16 years and under Independent report by the Healthcare Safety Investigation Branch I2019/010 May 2021
Providing feedback and comment on HSIB reports At the Healthcare Safety Investigation This document, or parts of it, can be Branch (HSIB) we welcome feedback copied without specific permission on our investigation reports. The providing that the source is duly best way to share your views and acknowledged, the material is comments is to email us at reproduced accurately, and it is not enquiries@hsib.org.uk or complete used in a derogatory manner or in a our online feedback form at misleading context. www.hsib.org.uk/tell-us-what-you-think. We aim to provide a response to all correspondence within five working days. © Healthcare Safety Investigation Branch copyright 2021. 2
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. 3
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. 4
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, 5
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 6
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 7
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- 8
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. 9
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. 10
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