How children like Tamara are dying because doctors don’t take asthma seriously enough
DAWN Wilson comes quickly to tears as she recalls overhearing A&e staff agreeing the time of death for her daughter. Tamara, just 13, had died after an asthma attack.
‘I stood outside the cubicle and could hear them working to save her, but when the nurse stepped out to tell me, trying to hold back her tears, I knew she had gone.’
Two years on, Dawn visibly struggles with the knowledge that Tamara’s death could have been prevented.
‘At no time did I ever think that her asthma could or would kill her. I trusted the professionals responsible for her care,’ says Dawn, 41.
Asthma, which is thought to affect 1.1 million children and 4.3 million adults in Britain, can be controlled with regular check-ups and a clear plan for how to manage attacks.
Yet every day, three people lose their lives to the condition. Shockingly, the UK has the highest rate of asthma deaths in children in europe.
Last week, experts warned that childhood asthma deaths partly reflect an almost casual attitude to the disease, with too many children wrongly diagnosed and asthma inhalers being dished out like ‘fashion accessories’.
Asthma is being ‘trivialised’, says Andrew Bush, a consultant paediatric chest physician at the Royal Brompton Hospital in London and a co-author of last week’s report. ‘People need to realise that asthma is a killer.’
Failure to take the condition seriously, combined with a failure to follow basic guidelines in treatment, can prove deadly, as Tamara’s case shows.
She was first diagnosed after an asthma attack at nine months old. When she was nine, her condition deteriorated, and frequent attacks left her breathless and worn out.
Over the next four years, she was treated at A&e 24 times — and admitted to hospital on 21 occasions. She was also treated at her GP surgery 19 times.
ARED flag for any asthma patient is continual acute asthma attacks or flareups, which indicate that current preventive therapies are not working. ‘Anyone who has an asthma attack should be prescribed steroids for at least three to five days,’ says Dr Mark Levy, a part-time GP with a special interest in asthma. He gave evidence at the inquest into Tamara’s death last October.
‘ Under NICE guidelines, this should be followed up by the GP within two working days. And in severe attacks, this should be a respiratory specialist, before their prescription runs out, to see if the attack has finished. No one knows how long an attack will last, so follow-up is key.’
On most occasions, Tamara was prescribed steroids and then sent home with no follow-up. During the last five years of her life she had at least 47 attacks, and in the year she died she was admitted to hospital six times.
This included having to be resuscitated in hospital following a nearfatal attack in November 2013, just five months before she died.
Yet each attack was treated effectively as a one-off rather than a sign of the ‘deteriorating nature of her chronic respiratory condition’, as the coroner put it.
Hospital referral letters to her GP sometimes took months to reach the practice, meaning she didn’t get the two-day follow-up.
And after she had to be resuscitated, she was seen a few weeks later by a junior doctor with no specialist training in asthma.
When she saw her regular consultant six weeks later, he arranged a further appointment in half a year’s time. By the time that appointment was due, Tamara was dead.
Other red flag signs for asthma patients include excess prescription of reliever inhaler medication — someone whose asthma is well controlled should get through fewer than two of these annually.
Shockingly, Tamara was prescribed more than 100 inhalers in the three years before her death, yet her treatment plan was not reviewed.
‘All these factors clearly indicated that Tamara should have been called in for a thorough review,’ says Dr Levy. ‘Surely a child who has a near fatal attack should be seen by an asthma specialist.’ The afternoon before she died on April 11, 2014, the teenager texted her mother to ask her to arrange a GP appointment, suspecting she had a chest infection.
Dawn was not unduly alarmed. She and Tamara — an A* grade student — were never told that asthma can kill.
She was staying at her grandparents’ bungalow, after being discharged from hospital for an attack days earlier.
‘We had got into the habit of her staying there after an attack so that she wouldn’t have to climb the stairs at home,’ recalls Dawn. ‘My dad called me at 2.30am to say she was bad, so I got in my car and drove the 20-minute journey.
‘By the time I got there, Dad had called 999. The first paramedic started giving her medicine with a nebuliser.’ This turns medication into a fine mist, making it easier for the patient to breathe in. ‘But this time I knew it was different. I knew she wasn’t able to fight it,’ says Dawn, who lives in Tyneside with her two sons, aged 19 and nine.
She pauses, before describing how she watched her child loll back in the chair as adrenaline was administered and she was put in the ambulance and taken to hospital. But it was too late.
Dr Levy says the way to stop people dying from this condition is simple. ‘Health professionals, patients and carers need to recognise that an asthma attack is a clear red light warning that something in the treatment plan is not working.’
He ADDS: ‘So often, people with asthma, and sometimes those who treat it, view an attack as a one-off event, not part of an ongoing chronic condition. Simply treating the attack with nebulisers is not enough — the follow-up is vital.’
For Dr Levy, such persistent failings in asthma care are a source of immense sadness and frustration.
He was the lead author on a government- commissioned inquiry into asthma deaths, published just one month after Tamara died. The report analysed 195 deaths between 2012 and 2013.
‘It highlighted 17 key findings, and made 19 recommendations for how we could better partially treat asthma and prevent people from dying following a flare-up of their symptoms,’ says Dr Levy. ‘If asthma is controlled properly, it should not kill.
‘Yet nearly two years on, only one of the recommendations has been implemented nationally. Our work has been quietly shelved.’
He adds that going through Tamara’s medical notes was a depressing task. ‘One striking feature is that she seemed to be treated independently by the hospitals and the GP practice, with little effective communication between them.’
Dr Samantha Walker, director of research and policy at the charity Asthma UK, points to the collapse of the ‘care data’ plan, a 2013 government initiative to link patients’ GP notes with hospitals. ‘Relevant information needs to be kept in a secure and shared record,’ she says.
Dr Levy adds: ‘Simple guidelines which, had they been carried out, would probably have saved Tamara’s life, were clearly not on the radar of most medical professionals who came across her in her short life.’
Professor Mike Morgan, the national clinical director for respiratory care for NHS england, denies Dr Levy’s report has been shelved, and says the National Audit of Asthma Care — which will look at treatment in england and Wales — was started as a result of its recommendations. But this audit will take some five years.
In the meantime, he says GP surgeries could install software that flags up excessive reliever prescriptions in patients and prompts a review of their care.
Dawn, wiping away the tears, is quietly determined. She has begun legal action against those she holds responsible for Tamara’s death, and plans to train as a nurse specialising in respiratory disease.
‘Tamara was a vibrant and very special girl. And I now know that more could and should have been done for her.’