Strategy thinkpiece: Policy, patients and pollution: Ella’s legacy

The Academy is developing a new ten year strategy for 2022-32. To start the conversation, we are publishing a series of thinkpieces on what needs to change in the next decade for better research and better health.

Health campaigner Rosamund Adoo-Kissi-Debrah and Academy Fellow Professor Sir Stephen Holgate CBE FMedSci worked together following the death of Rosamund’s nine year old daughter, Ella Roberta, 2013. In 2021 Ella became the first person to have air pollution listed as a cause of death on her death certificate. We spoke to Rosamund about her experience working with doctors and scientists, and to Stephen about his experience working with patients.

Rosamund Adoo-Kissi-Debrah

Doctors have a very powerful voice.

I didn’t realise how political air pollution was. I was driven by justice for Ella, as her mother, and somewhere along the line realised just how big an issue I had got into.

A doctor I know recently asked one of his patients if it was possible for them to move home. This is where the difficulty lies. 1.1 million children in the UK have asthma. If medics admit that the majority of their asthmatic patients live near busy or main roads, where most of the pollution is, then they have to also accept that 1.1 million families can’t all move home.

My challenge to the medics then is, as much as I know they don’t like to get involved in politics – what are they actually doing about it?

If you keep on spending, and don’t intervene, it goes round in circles. Ella would go in, the medics would get her better, and she’d get discharged. She had nearly 30 hospitalisations in three years: round and round and round. She’s draining the system. Or rather, she isn’t, as she’s no longer here.

I would like them to take the approach on air pollution that they took on tobacco. It depends on what they decide as a body, how to approach this. Doctors have a very powerful voice, and they need to let people know that some policies can actually have a really serious impact on children. Doctors need to make their voices heard.

Recognising expertise.

I’ve got a BSc in Psychology, I’ve got a Masters, I used to teach before Ella died. I’ve been working with medics for years supporting the #AskAboutAsthma campaign. But I think most people just see me as Ella’s mum.

People would be surprised how expert parents are. On a day-to-day basis they have to look after some incredibly sick children, and they should be given more credit.

We also dismiss patients too easily. Ella used to say her medicine wasn’t working – and much later after her death, Stephen explained this would have been true. But at the time we just thought she wasn’t taking her inhaler properly. I still feel bad about how we didn’t listen to her.

I would like uniform good practice.

I don’t think we’re applying what we know consistently. My plea to doctors is to engage with and adapt to the latest best practice. We all know there’s a target for people to see a GP or whatever within 48 hours, doctors need to do this, they need to do that. But whenever there is an inquest, and the NICE guidelines come up, a lot of the time unfortunately some doctors fall short. In my experience, who you see on the night may determine whether you live or die.

Educating medics

I want medics to buy into the idea that air pollution can exacerbate asthma. I can actually see things changing from when I first started – it’s talked about more, there’s more research.

But I still worry that some doctors might not be willing to take all these new things on board. They could be set in their ways. And the coroner recognised that, hence their third recommendation about educating medics.  

My plea is for medics to engage and take the recommendations seriously. I’m not saying they aren’t, but just in case someone is a bit of a sceptic. If you had met Ella, you would know how much she suffered. One can always improve when you’re talking about children dying.

Stephen and I have a lot of mutual respect.

I felt Stephen took me seriously. I felt he listened. And I felt he respected me. That respect gave me encouragement and allowed me to speak. I’m not everybody’s flavour of the month. But if someone like him takes me seriously, I feel I’m doing a good job.

My experience of doctors is that the higher up they are, the more seriously they tend to take you. I guess they’ve got nothing to prove, have they?

What impressed me most about Stephen is that he really managed to understand what life was like for Ella. It was fascinating listening to him at the inquest – he described her as “the canary in the coal mine”. He’s done an amazing job and at the same time I found him very humble and down-to-earth.

We have different strengths, and a lot of mutual respect. Maybe that’s why we managed to achieve what we have.  

Ella’s legacy

Ella is forever in my thoughts. I think about the number of times Ella was resuscitated, and how her illness was so severe, and I know some things about her condition will never make sense.

One of our favourite doctors at Great Ormond Street said to Ella she would be in the medical books. She was a bit of a science bod, so she was really excited about that! That used to be her concern – helping other children like her.

Ella may be the only one that has air pollution on her death certificate, but we shouldn’t pretend she’s the only child who will suffer. The coroner’s report has recommendations on how to prevent future deaths like Ella’s for policymakers, medical professionals and others. We need to ensure clean air for all children, in the UK and around the world.

An Italian journalist rang me recently. They have the same high air pollution we do, they have the same issues with their government not meeting the WHO’s clean air targets – but they don’t have a story like Ella’s.

Stephen was able to communicate Ella’s death to a wider audience. And that will be Ella and Stephen’s gift to the world.   

Professor Sir Stephen Holgate CBE FMedSci

The pattern was there.

Losing a child in any circumstances is terrible. But Rosamund lost Ella after thirty hospital admissions and countless attacks at home: repeated drowning episodes where mucus would pour out and collapse her lungs and she would go into fits and stop breathing. It must have been three years of torment.

I first came across Rosamund’s description of what happened to her daughter in the Evening Standard on the train back to Southampton. My entire career has been researching asthma and air pollution and in my mind, the link just clicked.

It took me 18 months with Rosamund’s legal team to pull together all the material: Ella’s thirty admissions across six hospitals, her GP records, and everything else. When I then fortuitously got data from an air pollutant monitoring station just one mile from where Ella and Rosamund lived, there it was. Ella’s clusters of dramatic asthma attacks occurred mostly when air pollution was worst in that part of south-east London. The pattern was there: it just wasn’t recognised while Ella was alive. 

Out of sight, out of mind.

Not a single medical person in the three years Ella had severe asthma asked anything about air pollution as a possible factor.

One of the three key points the coroner said in his Prevention of Future Deaths Report was that medical profession lacked the knowledge to recognise the importance of pollution as an initiator and driver of ill-health.

I’m not blaming anybody for this: it’s the way we’re trained as medical professionals. If we are never taught about it, why would you ask the question?

It comes down to humility.

Medical practitioners, like myself, work on the basis of pattern recognition. If patients come with problems that don’t fit a particular pattern, then difficulties arise. Squeezing diagnoses into fixed modalities is one of medicine’s failings.

I’ve seen this before with another difficult medical condition: chronic fatigue syndrome, or ME. The symptoms of ME/CFS of fatigue, “brain fog”, sleeping problems and more didn’t translate into a clear disease model: instead it was classed as a psychosomatic disorder, and some questioned if it was even real. Patients suffered terribly, with a breakdown in communication and many leaving NHS doctors for alternative medical advice. The whole disease area got a terrible reputation as a direct result.

Too often we try and approach medicine via a compartmental approach with each little organ-based segment. But for many complex diseases, we’ve probably got common mechanisms affecting different organs in a similar way. We need to stand back and look for the whole picture.

It comes down to humility. Doctors can be quite resistant to admitting they don’t know. But research and investment in medical inquiry won’t happen unless they do. Doctors feel that by not being able to offer a definitive answer they’ve failed, rather than saying, “I don’t know: let us find out together”.

Listening has been in short supply

My experiences over 45 years have led me to conclude that we, as medical professionals, need to pay more account of what patients tell us about what they’re feeling and experiencing.

Historically it’s been vociferous patients and carers who have reshaped medicine. In AIDS it was the patients and the gay community who pushed the agenda. In autism and epilepsy, it was parents who fought to get their children’s disorders recognised.

We have to put the voices of patients and families in a very different category of information. With the ever expanding reliance on laboratory and other diagnostic tests, listening to what patients say and experience is increasingly neglected. Patients and carers must be equal partners to researchers and doctors in taking complex disorders forward.

I’ve had the privilege of witnessing true partnership. The UK Chronic Fatigue Syndrome/ME Research Collaborative has worked to completely transform how medicine approaches that group of diseases. At the Academy the reports I’ve chaired on COVID-19 in the winter and COVID-19 in the future have been shaped by public interviews and the extraordinary patient and carer reference group. But sometimes I see patients and charities in research just because it looks good for them to be there, not as equal partners. We need mutual respect and new ways of working to pursue these research journeys into the unknown.

Most of my reports were just sitting on shelves

Sitting through two weeks of evidence for Ella’s inquest, I was shocked by how little those presenting the government case appreciated how air pollution impacts an individual’s health.

I have spent most of my working life in in the field of air pollution, have overseen many reports on the subject and chaired the various medical committees in this area since they were set up in the 1990s.

Each part of government tries to pass off pollution as someone else’s responsibility – it’s health, it’s the environment, it’s transport... They’ve made it about legal air pollutant limits with an attitude of allowing pollutants to build right up to those limits. Pollution affects everybody: we should be getting levels as low as possible across the board to reduce disease. There are no safe levels of air pollutants!

Ella’s legacy

My lasting impression of the coroner’s inquest was watching a mother who has lost a child, still caring for her living children, sitting through two weeks of this inquest and seeing how appalling official health knowledge was.

I don’t know what Rosamund must have gone through in her mind, as she came to realise that at the highest level there was such a lack of engagement and understanding around pollution and health. It must have been like what the people involved with AIDS felt when they were first fighting for recognition, with the arrogance of the profession that they knew better.

Rosamund was able to take all of this in, and at the end of the inquest she said: “I do not blame anybody. All I want is to use Ella’s death to make life better for other people”. After what she has been through – what a generous, courageous, incredible thing to say.

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