Published on World Asthma Day, it sets out the case of a five-year-old child who had a near fatal asthma attack. The child, who had a number of previous planned as well as emergency visits to hospital, was being treated for respiratory symptoms, but had never been formally diagnosed with asthma. Following the attack, he remained in the paediatric intensive care unit for 13 days and was eventually discharged almost seven weeks after admission to hospital.
Asthma is the most common lung disease in the UK, affecting around 1-in -11 children. The case we examined illustrated potentially life-threatening consequences if the condition is not recognised. The national investigation further emphasised that diagnosing and managing long-term asthma in children can be complex, particularly in younger children.
In our reference case, the mother revealed feeling ‘very shocked’ that asthma was the reason her son was critically ill. Other parents, who shared their experiences during the investigation, reinforced the impact that the lack of a diagnosis can have. One said: “it wasn't until she really hit the bottom and that's when we got the diagnosis.” Focus groups were also carried out with children and young people to better understand asthma from their perspective.
A key part of the national investigation was to understand more about the factors that add to the complexity of chronic asthma in children under 16. They identified a number of risks within the following areas:
- Adherence to treatment and understanding of chronic asthma – this applies to all groups i.e. healthcare professionals, parents, families, carers, schools, and other community settings like pharmacies. The lack of formal diagnosis also had an impact on the recognition of asthma as a potentially serious condition and on the management of medication and treatment plans.
- Clinical oversight of care – this is exacerbated when patients move between primary, secondary, and tertiary care and there is no overall system to capture the patient’s medical history.
- Communication between health services – the sharing of clinical information may be hindered by different NHS systems not ‘talking to each other’ , impeding effective communication.
In relation to the key findings, HSIB has made seven recommendations that provide system solutions to the management of asthma. They focus broadly on developing resources to encourage/influence behaviour change, improving digital integration and information sharing and following up recommendations from a previous national review.
Keith Conradi, Chief Investigator at HSIB said: “ On average, three people die from an asthma attack in the UK every day. It is a complex condition characterised by acute episodes of poor health. It can be incredibly distressing for children and their families and, as we saw in our case, the ambiguity over an asthma diagnosis only compounds the confusion and anxiety.
“Our investigation offers an independent view on why there continues to be serious safety risks associated with the diagnosis and management of chronic asthma in children. It identified learning that can positively influence changes in practice across the NHS and help empower healthcare staff, parents, carers and patients in the managing the condition effectively. The aim with our safety recommendations is to improve outcomes for children and young people with asthma and prevent families from experiencing devastating loss.”
Dr Jen Townshend, a Consultant Paediatrician who advised on the HSIB investigation said: “Outcomes for children and young people with asthma in the UK continues to be amongst the worst in the developed world and twice as bad as the next worst country in Europe. As a result, many children are living with intrusive and unnecessary asthma symptoms and sadly every year children and young people continue to die from asthma. In many cases these deaths are preventable.
“The HSIB report reinforces the findings from the 2014 National Review of Asthma Deaths and highlights specific areas for improvement with clear lines for accountability to ensure these recommendations are addressed.”
Notes to editors
Key findings – full findings in Executive summary
- Given the difficulty in diagnosing asthma in younger children, an acknowledgement of their symptoms by a diagnosis of wheeze or suspected (but not confirmed) asthma enables the provision of an information and management plan.
- Enhancing the educational resource available for healthcare professionals, patients and families contributes to the effective management of asthma and empowers patients/parents to self-manage the condition.
- Effectively changing health-related behaviour in terms of adherence with asthma treatment plans for children aged 16 years and under is a key enabler to safer asthma management, since the focus is transferred from relieving symptoms to preventative treatment.
- Clinical oversight of the care of a child with suspected or confirmed asthma can be enhanced by using the digital child health record to develop an awareness of how the condition is being managed, self-reporting of symptoms and alerting for asthma self-care.
- The involvement of a paediatric asthma nurse can enable information and key messages to be communicated to parents and carers in an effective way.
- The National Review of Asthma Deaths identified that a different, and integrated approach to asthma care delivery was needed. The review made 19 recommendations, 12 of which were relevant to the reference event. Only one has been implemented nationally to date.
Safety recommendations in full
- NHS England and NHS Improvement, as a commissioning body, supports local systems to implement evidence-based interventions, such as standardised information and wheeze management plans, for the parents/carers of pre-school children. This will be undertaken in conjunction with the British Paediatric Respiratory Society.
- NHS England and NHS Improvement reviews the recommendations arising from the National Review of Asthma Deaths to prioritise and ensure the implementation of recommendations that are outstanding.
- NHS Digital reviews the supporting information for triaging ‘the breathless child up to 16 years of age’, to determine whether there are features of life-threatening breathing difficulty.
- NHS England and NHS Improvement supports clinical experts to work with professional bodies to develop training competencies for healthcare professionals with responsibility for caring for children with suspected or confirmed asthma.
- NHS England and NHS Improvement and NHSX identify and integrate data items into information technology systems to develop a greater understanding of the risk factors present in the community.
- NHSX, supported by NHS England and NHS Improvement, implements a discovery programme into the roadmap for the digital personal child health record focused on developing support, self-reporting and alerting for asthma self-care.
- Public Health England develops resources for young people and their parents/carers to raise awareness and enable them to self-manage asthma more effectively.