The difficulty in diagnosing and managing chronic childhood asthma is the focus of the latest Healthcare Safety Investigation Branch report.

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.”

Read the report HERE

Source: HSIB