An expert review gathers dust, coroners issue strongly worded warnings, but in a fragmented health service, patients are still dying needlessly of asthma. Peter Blackburn investigates
Michelle Aydin stood helplessly outside her home waiting for an ambulance as neighbours performed CPR on her daughter.
‘I couldn’t watch it – she was just so little, lying there on the floor,’ Ms Aydin recalls, sitting just feet from where seven-year-old Isabel had lain.
‘Suddenly it changed. I have never heard a sound like it. She was really struggling’
‘I’m sorry, mummy,’ had been among Isabel’s last words before she fell unconscious in her mother’s arms. Her breathing difficulties had become too much for her frail body.
‘It all just seemed to happen so quickly,’ says Ms Aydin, from east London. ‘Her breathing wasn’t great during that day but she seemed OK, I thought she was fine. But suddenly it changed. I have never heard a sound like it. She was really struggling.’
Just hours later in hospital Isabel was pronounced dead. A little girl with so much potential – a keen footballer and karate medallist with an adoring family.
In a rich country with a universal healthcare system, few would even consider that asthma could snatch a loved one away.
Isabel’s death highlights a whole host of questions in the NHS and wider society – shining a light on an underfunded, fragmented health service and a society complacent to the risks of asthma. And, sadly, the Aydin family’s (pictured below) tragedy is not an isolated case.
Just weeks before Isabel’s inquest, earlier this year, The Doctor was present at another hearing, addressing the circumstances around Sophie Holman’s death.
Ten-year-old Sophie, who also lived in east London, had 48 asthma attacks in her short life.
At her death she had been admitted to hospital 13 times, attended emergency care on six occasions, and been treated 29 times at her GP surgery.
In December 2017 after suffering breathing difficulties her family took her to hospital. On the way to the hospital, Sophie had a coughing fit and got out of the car to try to catch her breath. She lost consciousness by the side of the road, lips blue, unable to take in any air. She later died.
The inquest heard that Sophie and her family were let down in many ways: she had no proper asthma plan and she was discharged from secondary care because appointments had been missed and hospital staff assumed that she was OK.
‘There was no long-term cohesive plan’
Despite so much contact with the health service in her short life, no one clinician took charge of Sophie’s care, and no obvious strategy for prevention or treatment was put in place.
Coroner Shirley Radcliffe felt the circumstances were so serious she issued a regulation 28 statement – a warning of potential future deaths if the system does not change – to health secretary Matt Hancock and NHS England chief executive Simon Stevens.
The statement was unequivocal. It said: ‘There were many missed opportunities to optimise and coordinate Sophie’s medical management during her 48 attendances and admissions in the practice and hospitals (at least 10 of which included life-threatening features)…
‘There were a number of missed opportunities to refer this child to a specialist respiratory team for investigation to characterise the nature and triggers of her chronic asthma condition and to optimise her medical management.
‘The medical records in the practice and hospitals lacked clear information highlighting the severe ongoing risk of poor outcome including future asthma death in the case of this child; there was no cohesive long-term plan for managing Sophie’s asthma with the result that no one recognised the cumulative risk factors that should have led to a specialist respiratory referral which may have resulted in a very different outcome.’
Closing the inquest at Walthamstow Coroner’s Court Dr Radcliffe said Sophie’s long-term management by primary and secondary care was ‘inadequate’, adding that a ‘fuller assessment, earlier steroid administration and better safety netting’ would have prevented her death.
At the conclusion of the long and painful inquest Sophie’s grandmother, struggling through tears, said she was ‘devastated’.
Another family torn apart. And another warning that the problems experienced in these cases could be gaps in the system for others to fall through: the case for change could hardly be more obvious.
Yet this is far from the first such warning to be issued.
In April 2014 Terence Carney, senior coroner for Gateshead and South Tyneside, was strongly critical of the management of 13-year-old Tamara Mills’ asthma in a regulation 28 statement.
She had had 47 acute asthmatic episodes in the last four years of her life but it was never considered that each was a ‘deteriorating step in her overall respiratory wellbeing’.
‘Instead of taking her to school every day we’re at the cemetery’
And Dr Radcliffe had also ruled in the case of nine-year-old Michael Uriely. In March 2017 she issued a regulation 28 report to NHS England, Health Education England and NICE (National Institute for Health and Care Excellence) in which she said Michael’s asthma was uncontrolled and with no evidence of an ongoing, coherent plan. Nor had he been referred to or seen by a specialist respiratory paediatrician.
These are not isolated cases. NRAD (the National Review of Asthma Deaths), commissioned by the Department of Health and published in 2014, found that almost half of the fatalities it examined were avoidable.
The majority of patients who died had not been under specialist supervision or had a personal asthma plan.
It came up with 19 recommendations, such as patients having follow-up appointments after emergency admissions or using the out-of-hours service, annual structured reviews and named clinical asthma leads in hospitals and general practice.
Five years on, only one of the recommendations has been implemented – a national asthma audit – although it has yet to report its findings.
Mark Levy was expert witness at the four inquests and co-wrote the NRAD. The failure of Government and NHS England to act on the report’s findings is a source of great distress to the north London GP.
‘I’m very depressed really – I have sat behind four families crying at an inquest when they realised that the care of their loved child could have been a hell of a lot better. I’ve found it extremely sad and I’m incredibly angry.
‘There’s no kind way of putting it. I keep banging on about it, but the Department of Health commissioned the review and the recommendations have not been implemented nationally. And that’s despite three different regulation 28 statements on childhood asthma in which each recommends implementation of the review on a national basis.’
Investment and education
There were 1,446 asthma deaths recorded in England, Wales and Scotland in 2017, a 19 per cent increase in five years.
The Global Asthma Report 2018 found the UK’s mortality rate for 2011-15 was in the top-10 of high-income countries where asthma is separately coded as a cause of death. It was higher than any other European country in the table, except Estonia.
Dr Levy says proper resourcing is essential, and that the right investment could save money by reducing hospital admissions.
He cites the lack of a national plan, a failure to educate patients and their families and the inadequacy of the quality and outcomes framework in general practice in addressing the complexity of the condition.
Dr Levy also blames the same issue that seems to underlie so many problems in the health service, that of fragmentation.
Isabel Aydin had 13 consultations in general practice, at least nine of which suggested her symptoms were uncontrolled, over a seven-year period. And yet she was not under the care of a specialist asthma service and there was no clear plan for the prevention of further attacks or continuity in future treatment.
‘It is crucial that additional funding promised by the Government finds its way to the front line’
This appears to be a health service which still has a wall between primary and secondary care, one which is more than capable of treating acute incidents, but with nothing like the same sophistication in tracking patient care and sharing records.
Dr Levy says: ‘Because of the fragmented care it’s hard to know what’s happening with the patient – I said, for example, give them a frequent-attender card like a maternity folder – then every time it would be obvious. It’s a no-brainer to do something. If something like that was produced nationally for everyone with asthma it would definitely help.’
In terms of treatment, it can be expensive – a study for the British Thoracic Society estimated treatment costs for severe asthma as more than £4,000 per patient, per year. For Dr Levy that only underlines the importance of following best practice.
A pilot project he led for Harrow clinical commissioning group found that if NRAD recommendations had been followed in the case of almost 300 children who had suffered asthma attacks, there would have been a 16 per cent reduction in hospital admissions.
Dr Levy says: ‘It has been clearly demonstrated that people with severe asthma cost as much as conditions such as type 2 diabetes – so the cost of putting services in place might seem a lot but may be good value in the longer term. The way the funding is often dictated by political cycles means this does not always happen.’
Fundamentally, Dr Levy says, the health service is ‘complacent’ about asthma. Even if financial support were available and political will plentiful, he says some clinicians are unaware of the seriousness of the condition, and as a result, patients and families are too. There is no sense of a national strategy, which could help individual planning for patients.
There would appear to be quite fundamental gaps in knowledge. In the case of Sophie Holman, a lack of awareness of national guidelines, NRAD recommendations or British National Formulary prescribing advice, said the coroner.
BMA council chair Chaand Nagpaul says the ‘tragic stories highlight stark failures in the formation and the funding of the NHS which many patients, families and frontline staff have been adversely affected by over recent years’.
He adds: ‘These tragic stories highlight the stark consequences of the inadequate funding of the NHS and of a service providing piecemeal, reactive care in which many patients, families and frontline staff have been adversely affected by over recent years.
‘Implement the recommendations in the report… and you could make a big difference’
‘The BMA has long argued for an end to the short-sighted, and costly, fragmentation of the service in which patients slip through the net, with a failure of organisations and providers to work together to provide coordinated and proactive care to patients.
‘It is crucial that additional funding promised by the Government finds its way to the front line quickly.’
Ms Aydin (pictured below) says she always had the impression from contact with the NHS that her daughter’s asthma was mild.
She says: ‘I had asthma as a child, but I didn’t realise how common it could be that people die from it. Only since we lost Isabel have I found out that a lot of children die from it. It’s quite shocking. You obviously never think you are going to lose your child – and not to asthma.’
The case for improvement seems indisputable, so how can it be made to happen?
Well, first things first, says Dr Levy, the NRAD recommendations are readily available to NHS leaders. There is already a blueprint for change in place – the next step is finding the will, and the finance, to enact it.
Dr Levy says if the Government wanted to enhance the evidence base first, it could always try applying NRAD standards in one area first.
‘Take an area like London and put a programme in place where there is a formal recognition that patients who have difficult-to-treat or severe asthma are referred to a specialist clinic and start there. Implement the recommendations in the report… and you could make a big difference.’
NHS England national clinical director for children, young people and transition to adulthood Jacqueline Cornish said the NHS Long-Term Plan would ‘improve asthma diagnosis and has… set up a database to understand the causes of harm to young people’. She also said that a new dedicated programme for young people’s health in the plan would tackle major conditions including breathing problems.
The Department of Health and Social Care did not provide a comment.
Lessons to learn
There may be cause for optimism when it comes to the establishment of PCNs (primary care networks) where groups of GP practices, serving populations of up to 50,000, will come together to encourage integration and the creation of local solutions to local problems.
Dr Levy hopes that each PCN would have its own asthma lead overseeing care and access to a specialist service.
Dr Nagpaul (pictured above) says: ‘Doctors like Dr Levy and patients must be put at the forefront of efforts to redesign care locally if integrated services are to be achieved – and as we move toward PCNs and other local partnerships these tragic lessons must be learned and acted upon.’
When it comes to recommendations, standards and reports, perhaps the men and women sitting in the offices of state or standing at the helm of the NHS can only hear so many demands for change. But this isn’t just about recommendations, standards and reports – it’s about the lives of the families the health service is designed to care for.
Sitting on the sofa where Isabel Aydin used to snuggle with her mum, a bag of sweets on her lap and a film on the TV, it’s much more difficult to turn a blind eye to the tragedy caused when calls for action are ignored.
‘We’ve been robbed,’ Ms Aydin says, trying to express what Isabel’s death has done to her family. ‘Instead of taking her to school every day we’re at the cemetery every day. There’s no one around, the house is empty and there’s nothing now – no laughing.
‘We have been let down. There’s no second chance for us.’
Read The Global Asthma Report 2018
Read the National Review of Asthma Deaths
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