Why aren’t patients told asthma can be a killer?
WITHIN minutes of waking each morning, Lisa Dennis is struck by the heartbreak she’s lived with since her ten-year-old daughter Olivia died from an asthma attack.
It’s been two years since Olivia lost her desperate fight for life on a bitterly cold March evening. And there’s not been a single day since when Lisa and her husband Lee haven’t tormented themselves with ‘what ifs’.
For Olivia’s death, from a condition which affects one out of every five children in Ireland, could have been avoided. The cause of death on her death certificate, was ‘acute asthma leading to respiratory failure’. But shockingly, despite Olivia using inhalers for six years, the family insist they were never told she was asthmatic — instead, they say, they’d been told the inhalers were to treat ‘an allergy’.
‘We had no idea Olivia was asthmatic, or that it could kill,’ says Lisa, as she sits in the family home, where her daughter, who she and Lee spent five years trying for, died in her father’s arms. ‘I think people must look at us and wonder how on earth we didn’t know.’
In fact, many people don’t know the risks — and even doctors may downplay what can be a very serious condition.
Asthma causes the airways to become inflamed and narrow when in contact with a trigger, such as extreme cold or an allergic reaction. The result is breathlessness, coughing, wheezing and a tight chest. In an attack, these symptoms worsen.
With simple guidelines, regular check-ups and a clear plan for how to manage attacks, it can be controlled. But too many people don’t realise asthma can kill, or take it seriously enough, warn experts.
‘ There still seems to be an air of complacency about asthma,’ says Deborah Waddell, a leading paediatric asthma nurse specialist. Indeed — more than one person a week dies from asthma in Ireland while there are more than 5,000 asthma hospital admissions every year.
Asthma-related deaths occur for all sorts of reasons. Symptoms may become so severe that treatments are ineffective, or it can result from failure to get treatment in time.
DR MARK LEVY, a part- time GP with a special interest in respiratory diseases, says: ‘It’s not clear why, but it’ s widely accepted there are preventable f actors i n up to 90 per cent of deaths.’
During his research, he found that some asthma sufferers who have died — including children and people aged 19 and under — were treated f or mild or moderate asthma, but actually had poorly controlled severe asthma — but neither the patients nor their doctors recognised this.
Dr Levy says part of the problem in the UK where Olivia died, is that GPs and practice nurses don’t receive enough training in diagnosis and treatment.
He points to Finland, where all healthcare professionals are trained in spotting the signs of asthma; the country has three deaths a year from the condition.
Initially, Lisa, now 45, had taken Olivia to see her GP when she was four, following a summer’s day in the garden which left her breathless. She was told her daughter may have an allergy — although no testing was done — and prescribed a blue reliever inhaler, which she was told to use if Olivia experienced the symptoms again.
These relieve asthma symptoms by relaxing the muscles surrounding the narrowed airways, making it easier to breathe again.
‘ Olivia used i t as and when she needed it and I would collect a repeat prescription from the GP,’ says Lisa. ‘There was never any call for us to go in. But after a couple of years, Olivia’s symptoms had got worse. I noticed she was using the blue inhaler more. I contacted the doctor by phone, who suggested a “preventer” [brown] inhaler to be used daily.’
These inhalers help reduce inflammation in the airways, reducing the risk of severe attacks.
The GP did not ask Lisa to book an appointment, and so she did not feel too concerned.
She collected the prescription from the surgery reception, with instructions that Olivia should use the preventer once a day.
There was no further follow-up, no appointments made to see an asthma nurse, and Lisa and Lee are adamant the word ‘asthma’ was never mentioned. Lisa now realises that over the ensuing years, the prescription renewals became more frequent as Olivia used them up more quickly.
‘I was getting a new reliever inhaler every two months,’ she says. ‘It amazes me now that it wasn’t picked up at the surgery for Olivia to be called in.’
It was recently announced that the new GP contract for under-sixes will see doctors carry out an annual review of children diagnosed with asthma. The Asthma Society of Ireland, which has been campaign- ing for such a move since 2011, sees it as a ‘first step’ towards the roll-out of such a programme for everyone with asthma.
Deborah Waddell says if someone is using their reliever inhaler three or more times a week, it’s not being well controlled and medical advice should be urgently sought.
By the time of Olivia’s death, her mother estimates she was using hers once a day.
The day Olivia died she’d gone to school in fancy dress as there was a fundraising event on at the school that day. But on the way out of school, Olivia lagged behind her mum and brother Max, then five.
‘She said she had been coughing all day and felt rough,’ recalls Lisa.
When they got home Lisa couldn’t settle, and by the time Lee arrived home from work at 5pm, it was clear Olivia was unwell. Not knowing her daughter was having an asthma attack, but aware she was ill, Lisa kept close to her.
‘And then things just got worse,’ Lisa says, faltering and looking across at Lee, now 43, whose face is increasingly wretched.
Lee took Olivia up to bed sometime after 7pm, then came down to say she wanted her mum.
Lisa found Olivia on all fours on the bed, struggling to breathe. She ran back downstairs to gather up her inhalers and take her to hospital, and she looked back to see Olivia following her.
Seconds later the little girl vomited once, then again. As Lisa called for an ambulance, Lee took their daughter to the loo. Moments later, she passed out. She never regained consciousness. Lisa says she knew in her heart her daughter was dead as they left the house in an ambulance. As doctors at the hospital battled to save her, one of them asked Lisa if her daughter was asthmatic. ‘I said no, but she had an inhaler,’ she recalls. ‘He looked at me as if I was stupid.’
MOMENTS later, the distraught parents were taken i nto a room to be told their daughter had died. ‘We were just left numb and still are,’ says Lisa. ‘I am bitter and very confused as to the non-diagnosis and the repeat prescriptions without anyone seeing Olivia.’
Dr Levy says children and adults prescribed inhalers should be seen by a trained asthmatic nurse, whether they’ve had asthma confirmed or not.
But even when you have a confirmed diagnosis, getting to see a specialist nurse in the UK is becoming more difficult, thanks to budget cuts, less training time and rising patient numbers, he says.
Lisa and Lee do all they can to raise awareness. ‘We talk about Olivia a lot,’ says Lisa. ‘I feel guilty every time I smile. I hate to think she is looking down thinking we are having a good time without her.’
FOR more information visit the Asthma Society of Ireland on asthma.ie