Breathing space

Mark Levy campaigns tirelessly for asthma patients to have the specialists they need, and for better management of the condition. Until he succeeds, he tells Peter Blackburn that lives will be needlessly lost

Location: UK
Published: Friday 12 March 2021
mark levy

‘To be honest, I lose sleep over some of the stories. It is really tough.’

North London GP Mark Levy is speaking to The Doctor just weeks after providing expert witness at an inquest into the death of 22-year-old Kalila Elizabeth Griffiths, who sadly passed away on 1 February, 2019.

Senior coroner for the Eastern area of London, Nadia Persaud, found that Ms Griffiths’ death had been contributed to by a ‘lack of recognition of the seriousness of the decline of her respiratory state’, that she required a review by a respiratory physician and had such a review taken place ‘on the balance of probabilities, her death would have been avoided’.

These would be shocking findings for many people. And the coroner felt the failings were significant enough to require a regulation 28 ruling which aims to prevent future deaths by calling for specific actions to be taken.

There were 11 opportunities where someone could have intervened

Dr Levy

In this case, the coroner raised concerns about the management of asthma patients within the NHS as a whole, that 18 of the 19 recommendations in the National Review of Asthma Deaths (NRAD), 2014, have not been implemented nationally, discrepancies between asthma treatment guidelines and a lack of training for GPs and emergency department staff.

Ultimately though, for Dr Levy, who was born in South Africa but has been working as a GP in England since 1977, the details of Ms Griffiths’ case were less shocking and rather came with a deeply dispiriting sense of déjà vu.

This was the fifth inquest at which Dr Levy has given expert witness since NRAD, for which he was clinical lead, reported its findings. Each death revealed a tragic list of miscommunication and failures in care; each death exposed a health service starved of resources in which children and young adults with asthma are falling through the cracks.

Preventable deaths

‘People say there aren’t many asthma deaths in the UK therefore it’s not a problem – but those deaths are mainly preventable,’ Dr Levy says. ‘That is a problem. Each case I’ve been involved with has demonstrated the same preventable factors.’

Dr Levy’s case for change is backed up by stark statistics. The UK has the worst record for childhood asthma deaths in the whole of Europe and the fifth worst in children and young adults among all developed countries in the world.

On top of that the NHS is short of some 200 asthma specialists in hospitals, has lost training capacity and expects GPs to manage patients with this common condition while also having intimate knowledge of upwards of 400 other diseases and increasingly scant resource and staffing.

The result is that asthma care is often delegated to nurses and other healthcare professionals who themselves are often not in receipt of the specialist training required.

We keep seeing the same things over and over again

Dr Levy

Future reforms to the NHS are also only likely to further concentrate care in primary care and GPs are likely to be asked to do more and more – as Dr Levy says, that cannot continue to be more and more with less and less.

As a result, one of the most defining factors in the outcomes for patients is luck: are they lucky enough to be seen by a GP specialising in the area or to have arrived in hospital on the day when the respiratory specialist is overseeing admissions?

Unfortunately, some patients – and families – are not lucky.

Thirteen-year-old Tamara Mills, from the North East, was attended to by medical personnel on 47 occasions but was never referred for specialist help. ‘That could have happened after any one of those attacks,’ Dr Levy says.

And nine-year-old Michael Uriely, from London, had six attacks in the year before he died. ‘There were 11 opportunities where someone could have intervened,’ Dr Levy adds.

For Dr Levy, one of the hardest things is the moment at an inquest where a family realises the death of their child could have been prevented, that they weren’t receiving the most expert care, and that had they known what to say or whom to demand to speak to things could have been different.

‘That moment of realisation is quite a shock,’ Dr Levy says.

‘It is hard to see.’

A blueprint for change

The most galling truth surrounding all this tragedy is that the answers to many of these problems have been available to ministers and health leaders for many years.

In 2014 the NRAD provided a blueprint for better care – a series of realistic recommendations which may well have changed the outcomes for these families.

Those recommendations include that patients with asthma are referred to a specialist service if they have required more than two courses of systemic corticosteroids in the previous 12 months, that follow-up arrangements be made after every attack regardless of where it was managed, that secondary care follow-up should be arranged after patients have attended A&E two or more times with an asthma attack in 12 months. The report also suggests electronic surveillance of prescribing in primary care be put in place.

These are not over-ambitious demands – they describe fairly basic management of a serious condition, the resourcing of specialist posts and services, and a modicum of integration between different parts of the NHS.

Yet, as Dr Levy says, ‘things haven’t changed. We keep seeing the same things over and over again’.

Dr Levy adds: ‘In my view a simple directive from NICE or the departments of health in all four nations to focus on one thing – people who have had attacks should be reviewed urgently to identify potentially modifiable preventable risk factors – would make a huge difference. But I don’t know how long we will have to wait.’

The good news though? Dr Levy’s campaigning days are not over. Asked whether he has the energy and will to keep fighting for better care for these patients, Dr Levy is absolute: ‘This is what keeps me going. I know I have a role to play.’