By Laura King, Senior Children & Young People’s Asthma Practitioner for North-East London, NHS North East London and Young Barts Health

I work in North-East London, as part of an exciting pilot project around children’s asthma, working to the NHS England National Bundle of Care for children and young people with asthma but largely focusing on the impact of inequalities. I am an asthma nurse by trade, and in every role I’ve held as an asthma nurse, in various patches, I’ve noticed the impact of poor diagnostics on the outcomes for children with asthma. Most of the roles I have held have also been in areas rich in diversity but poor in wealth. In some there’s been a stark difference between the families, and this is amplified when we consider the problem of diagnosis. 

We have known for over a decade that the implication is significant, and the outcomes dire. The National Review of Asthma Deaths, almost ten years old, is still frighteningly apt today. We are still peddling fundamental care (many of us call it “Brilliant basics”) in a clinical landscape that has moved on in so many other ways. We have ULEZ, air monitoring, new devices, smart devices and even self-administration of biologic therapies for our trickiest patients. Still many children are living with undiagnosed asthma despite regular symptoms and inhaler use.  Put simply, if you aren’t formally diagnosed, it is more difficult to navigate the health system to get the support you or your child need. Add barriers such as language, cultural pressure and financial pressure limiting time and travel options, and we have a toxic Swiss cheese type model where the child might have worsening symptoms, only a reliever, and a family unable (or poorly placed) to advocate for them. We end up relying on other professionals such as schools, school nurses and health visitors – not because they don’t care, but because they are unable to speak up or simply do not understand the repercussions of long-term niggling symptoms. 

If you are using inhalers (usually relievers) without a diagnosis, you are at higher risk of having an asthma attack.

I recently surveyed a group of practice nurses in an area known to be engaged with asthma in children. In the spirit of information gathering, I kept it very simple. What was going well, what were the barriers to good asthma care in their area, and what caused them the most stress when they considered children and young people with asthma. We found that one of the biggest anxieties was diagnosis, especially in younger children with palpable anxiety with the under-fives.

Digging deeper, it appears that the anxiety feeds into almost every aspect of asthma care. If you aren’t formally diagnosed, you are unlikely to be called in for your annual asthma review. If this doesn’t happen, there’s a chance the child will lie under the radar with the systems we have in place in most areas. For example, most electronic systems will operate a calling system wherein all patients are called each year (often on their birthday) for an asthma review. This relies on the practice coding the patient as having asthma. 

The risk of using reliever inhalers without a diagnosis

If you are using inhalers (usually relievers) without a diagnosis, you are at higher risk of having an asthma attack. If you have been given inhalers, and subsequently ordering/using them with little to no guidance, not all families will read about asthma or educate themselves. There are plenty of myths around. Some are quite commonplace, for example, that you can’t have asthma until you are school age. Some are more specific, such as the idea that everyone grows out of it by a certain age. Worryingly, there is still a lot of anxiety around inhaled steroids and the perceived side effects such as stunted growth and huge weight gain which don’t correlate with the standard (very low/low) doses of inhaled steroids. 

Whilst these aren’t directly related to diagnosis, these are things that are usually explained in asthma reviews, or in asthma clinic. Once again, the lack of diagnosis means the child/family do not receive the information they need to keep well or what to flag as a worry. 

What can we do?

Search strategies:

In some areas we are widening the search. Where we have electronic prescribing and the teams to do so, we can search prescribing records for inhalers – whether that’s preventer or reliever. The latter alone will pull up many more patient records than the simple “asthma” code search as so many children are prescribed salbutamol without diagnosis. 

Thinking broadly, and in my own experience, there are several outcomes for this sort of search. 

It will bring to the forefront some children who do not have asthma. Those who have perhaps been prescribed a reliever (usually salbutamol + spacer) once, for symptoms that may have not been asthma but viral wheeze or even bronchiolitis. They haven’t used it since and it’s either sat in a cupboard or been long disposed of. 

Conversely, some patient records will tell us the opposite. There will likely be children (or even young people) who are prescribed only salbutamol and needing to use it frequently. Recent national tightening of prescribing practices with restrictions on repeat issues of salbutamol will have helped this, but there are often children using salbutamol multiples times per week- or even per day – with no diagnosis and therefore no preventer. Even if they are prescribed a preventer, if the diagnostic code is not present they may still not be called for review. 

To add some context, I have often found teenage patients requiring a complete overhaul of both medication and knowledge, starting from the very beginning again because they simply haven’t been taught the basics of asthma care. It isn’t for lack of motivation (for them or their clinicians), but often these medicines are prescribed to young children, with teaching given to the grown-ups and the child deemed too young. Fast forward ten years and we have a young person with no idea what asthma is, no motivation to take their medicine and no one chasing them! Often the adherence is so patchy that I find myself thinking we need a clean slate and are essentially re-initiating preventer therapy as nothing is being taken to therapeutic level. 

I have often found teenage patients requiring a complete overhaul of both medication and knowledge, starting from the very beginning again because they simply haven’t been taught the basics of asthma care

There is a middle ground wherein children may have a preventer prescribed, with perhaps middling usage or varying technique. These children often do not hit our clinical radar until they have an asthma exacerbation, by which time inflammation has peaked and they have already become unwell. The “mild” asthmatics are known to be at high risk of death, according to the National Review of Asthma Deaths written almost a decade ago. 

Brilliant Basics:

In short, we can encourage early and appropriate diagnosis using the history, evidence we have, and appropriate testing, used effectively. Asthma + Lung UK recently published a report, Diagnosing the problem: Right test, right time and noted that largely misdiagnosis happens in childhood because “children are receiving inhalers without any diagnostic tests being done” or carried out effectively. We cannot fix the financial constraints of the system, and whilst some of us are at the forefront of the testing pathways in our areas, we can only make a compelling case for the need for testing when many of these pathways feel tailored to adults with children added in. 

Many of our areas are already using fantastic electronic templates for patient review- perhaps we need to revisit whether these are asking the right questions? Has the child ever been noted to wheeze? Have they ever had an attack? Do they respond to salbutamol and have we tried any testing? When I undertake joint clinics in primary care, the most frequently asked questions are always about testing, and almost always around diagnosis. Whilst I understand that in adults the testing requirement is very prescriptive, in children we often forget that peak flow monitoring and response to trial of therapy is a diagnostic test which holds as much value as the lung function tests might in an adult, without the gamble that a young or nervous child may struggle with the technique. 

Why its so important to get a diagnosis

We can explain to parents / the child’s grown-up that we often have a working diagnosis like “suspected” asthma before we can say for sure that it’s asthma. We can also reassure them that a diagnosis of asthma should not hold their child back, and that there are minimal careers where it will be an issue. We can also explain that we review regularly and can de-diagnose in future if required. The latter is a bigger issue which we’re working hard to support in North East London.

My conclusion? This is one of the problems that kills. Both over- and under- diagnosis are dangerous in their own rights, but under-diagnosis is a barrier to education as well as medicine. We need to work with our teams across care systems to ensure everyone feels confident to flag a possible diagnosis, and to ensure we are reaching our families that need us to make decisions. 

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