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Connecting, Collaborating, Reciprocating – Journeys in the Asthma System

16th September 2019

by Tom Holliday, Paediatric Registrar & Darzi 10 Fellow

I never saw myself working in paediatric asthma. As a paediatric registrar working in secondary care, my experience of asthma was as an acute condition. Every winter large numbers of young people would flood into A&E and I would help by treating their acute attack. Either the attack improved and the family would go home, or it didn’t and they’d go to the ward. At the end of my shift I would leave safe in the knowledge that this was the way of things and that I’d done my bit. Except this isn’t the way of things. And to realise this I needed to step outside of the hospital walls and see the bigger picture.

Asthma remains the single most common long term condition of childhood, affecting 1.1 million children in the UK, or roughly one in ten. Every year approximately 40,000 children with asthma experience an emergency admission to hospital, of which as many as 75% are thought to be avoidable. How could it possibly be that the system fails this often? One reason might be that we still accept acute asthma attacks as common and treatable. Another could be that we forget that it’s not the acute attack that is the hallmark of asthma, but the underlying chronic airway inflammation. Another still might be that we focus our interventions on the outliers, those at the extreme end of the severity bell-curve, instead of the bulk of people with the condition. These are certainly all things I have been guilty of in the past. But perhaps the wider issue is that people experience a system of care that is fragmented and episodic; circumstances that result in no-one possessing an overview and a lack of focus on what really matters to the patient.

In 2017, I found myself working with the Haringey Public Health Team; a daunting prospect for a doctor who had previously worked almost exclusively behind hospital walls. I was thrown into a world of wider determinants, community practitioners, commissioners, STPs, politics and primary care. For the first time I had to accept that acute secondary care was not the focal point that the rest of the NHS pivots around and that the health and care sector was, in fact, much much wider than I had ever dared to admit. It didn’t take me long to realise that for young people with a long term condition like asthma, A&E represents a sort of sticking plaster for when things go wrong. Much better to focus on prevention; children and families are happier, healthier and can do more of what they really want to do whilst health care teams spend less time and resource treating acute attacks and can focus on other things. Everybody wins! Therefore, when the opportunity presented itself to spend a year as a Darzi Fellow working exclusively on improving system-wide asthma outcomes in Islington and Haringey, I jumped at the chance.

For the past year I have had a licence to visit and enquire into almost every part of the asthma system. Essentially, I nose around and try to find out what’s really going on! Having a whole systems overview is a truly privileged position. It’s rare that a junior doctor such as myself is given the chance to work cross-sector and I’m truly appreciative of the insight this has afforded me. I’ve come to realise that tricky system-wide issues, like improving quality of asthma care, require system wide engagement and ownership to improve; yet we often attempt to generate solutions to such problems solely from within our own organisations. How can we understand what’s really going on without first hearing other perspectives on the problem? What stops us reaching out to others to co-create solutions?

Working within public services, we can easily become comfortable in our own corner of the system. And for good reason: it’s easier to blame the day-to-day failings and frustrations we experience on “the others”, be it “the hospital doctors”, “the GPs”, “the schools”, “the government”, even somehow “the patients”. However, my experience has taken me to all these sectors and beyond and everywhere I go I’ve found, without fail, teams of enthusiastic, intelligent people who just want to do the best they have with the resources available and to be appreciated for their hard work. If we all approached each other in a spirit of reciprocity, asking not what people need but what they have to give, valuing them as assets with key skills and experience whether professional or patient, then suddenly all sorts of interesting things become possible.

Over the course of the last year, the most transformative projects I’ve experienced have always to some extent, whether implicitly or tacitly, operated with this philosophy at their core. Examples I have been closely involved with include:

  • Working collaboratively between healthcare, education and local authority to implement changes to in-school asthma care infrastructure, making children with asthma safer and improving participation. Involving teaching staff as in-school asthma champions helped to promote local ownership and responsibility for project delivery. In addition, parent coffee mornings and group sessions for children allowed them to take greater responsibility for their health, tell their stories and provide feedback to inform improvement. The project has saved over 1600 days missed from school in Islington as a result.

 

  • Paediatric nurses, supervised by a secondary care asthma consultant, work within primary care to provide rates of follow-up after an acute attack that are more than double the national average. Early data suggest that the service reduces rates of re-admission to hospital by as much as a factor of five. This is only made possible by close collaboration and excellent working relationships between trusting patients and families, two large acute trusts, the nursing service, borough-wide primary care, and with strong support from commissioning.

 

  • A patient-centred asthma self-management programme provides a series of facilitated group workshops both in-school for ten to 12 year olds and within the community for adolescents. Workshops aim to promote greater responsibility and self-management skills amongst participants with a focus on greater control and prevention, allowing them to spend more time doing the things they want to do. Pilot data suggest a decrease in unplanned primary care usage of 66% amongst adolescents and an improvement in Asthma Control Test Scores for all ages. The project has required extensive collaboration and partnership working across traditional organisational boundaries.

Working in a way that aims to involve the whole system, promoting greater co-ordination and reducing fragmentation between sectors has no doubt contributed to an observed 50% reduction in emergency asthma admissions in Islington over the last five years, equating to a cost-saving of over £30,000 in direct admission costs in the past year alone. But it’s not the numbers which are important, more what they represent – less time spent in hospital for young people and their families. In fact, it could be argued that the approach has allowed Islington to achieve the fabled triple-aim of healthcare systems: improved population health, lower overall cost and improved patient experience, with many of the above projects frequently receiving overwhelmingly positive feedback from both patients and professionals.

I am aware that presenting projects in such a way always accentuates the positive. I often see projects that are already at an advanced stage presented alongside their invariably excellent outcomes and I worry that this does both the project and those who would seek to emulate them a disservice: it brushes over the fact that these things aren’t easy and happen incrementally. Nothing sustainable ever arrives fully formed. Indeed, those that claim to have the answers from the word go often don’t last the course or find themselves outpaced by those who are willing to engage, listen, adapt and re-iterate. It also disguises the fact that things are still far from perfect: old opinions, assumptions and prejudices still exist; the phrase “that’s not the way we do things around here” still echoes down corridors; not-my-jobism is rife and somehow we still think that to do good, inclusive engagement work we have to “get the right patient”. None of these things are ever likely to go away completely, much like many of the problems we find ourselves facing in the modern day NHS, which can never truly be “solved” in the traditional sense. But if we engage more readily, listen with appreciation, and treat each other with more respect and reciprocity whether patient or professional, then our combined voices just might be able to drown out the noise of the old world… Everybody wins!

Tom Holliday is a Paediatric Registrar and was a 10th Cohort Darzi Fellow focusing on CYP Asthma Pathways. He continues his Systems Leadership work on CYP Long Term Conditions in Islington and Haringey, works a clinical post at Northwick Park Hospital in Harrow and looks after his 16 month old daughter at home in Holloway. He doesn’t always practice what he preaches.

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