I want to tell you a story. This story is about a sick child. I’ll warn you straight away it’s not a happy story and there is tragically no happy ending.
For the next five minutes, I urge you to concentrate and read to the end.
This story starts and ends with the death of a child.
Ruairi was always a snuffly baby. A ‘mouth breather’. His Mum was always concerned that he might have asthma, like his Dad. Dad’s asthma began to interfere with his daily life when he was three years old and resulted in a number of hospital admissions. Like his son Ruairi, he was a noisy breather and would get chesty especially in summer and also if he suffered from the normal coughs and colds that other youngsters did.
Ruairi first went to the hospital due to his asthma when he was 18 months old. He was treated with antibiotics and was nebulised. He recovered well.
Over the following years, Ruairi was in and out of the GP practice. He seemed less resilient than his peers when it came to the usual ‘bugs’ that healthy youngsters would routinely bat away. He would often need more time than his peers to recover.
In the interim, he was in an out of general practice with ‘chest problems’. Long term salbutamol was his standard treatment. He had been given this at his first encounter back when he was 18 months old and his parents had diligently made sure they had been using it regularly since. Mum and Dad had been shown how to use the metered dose inhaler once back when it was initiated. No spacer was ever prescribed. Whilst his use of salbutamol fluctuated, on average he used 14 salbutamol inhalers every year from the age of 2.
He never actually received a formal diagnosis of asthma. He also was never given a written asthma plan. His Mum and Dad on occasion missed some review appointments feeling that his asthma was under control. They obviously did not fully understand the severity of his illness or potential risks.
This pattern continued until he was 9 years old when in June that year he was hospitalised again.
This time was frightening for Mum and Dad and involved them having to call an ambulance. Ruairi became progressively more and more wheezy over the course of a Saturday in June. Mum and Dad phoned the ambulance because he was struggling to breathe and his lips were turning blue. The most profound clinical finding at this encounter was the fact that Ruairi’s oxygen saturation in air dropped to 85%. The hospital team didn’t make a referral to an asthma specialist. They safety netted and discharged him home to complete his antibiotics and oral prednisolone.
He recovered well and within a week he was back to normal. Unfortunately, the message to the GP practice to initiate an inhaled steroid inhaler and coach on inhaler technique was never actioned. Ruairi also didn’t receive an invitation to a follow-up appointment post exacerbation.
Ruairi was diagnosed with asthma two months after this hospital admission.
Mum and Dad were advised to buy a nebuliser. They wanted to have salbutamol nebules ready just in case they were needed for future exacerbations.
Ruairi was now 11 years old. I have summarised some aspects of his care since the age of 18 months below:
- On average he was using 14 salbutamol inhalers annually.
- He never received a written asthma plan.
- On average he had 1.5 courses of oral prednisolone annually. This peaked when he was 9 years old when he was prescribed four courses of oral prednisolone.
- He was never referred to a specialist consultant led asthma service.
- His adherence to inhaled corticosteroid medication was poor. He was prescribed Clenil Modulite 100mcg when he was 5 years old but subsequent use was sporadic. Mum and Dad were not aware that this inhaled therapy was required even when Ruairi was asymptomatic.
- In total Ruairi had seen 12 healthcare professionals in relation to his asthma since he was 18 months old.
- Family history and/or potential triggers were not discussed.
When Ruairi was 11 he became unwell once again. His symptoms began on a Monday night in June. Mum and Dad had been advised to use the nebulised salbutamol on such an occasion. Ruairi went on the nebuliser and within 10 minutes his symptoms settled and he was able to go to bed.
He slept soundly until 3 am when he woke with a tight chest. He called out for his Mum who came through with the nebuliser and administered another nebule. She noted that it was 6 hours since his last dose so felt it safe to readminister. Ruairi settled and went back to sleep.
He woke again at 7 am this time in some distress. This time he felt he couldn’t clear the mucous. Mum administered more salbutamol and phoned for an ambulance. His lips were turning blue and he was struggling to breathe. This was progressing fast and reminded Mum of the attack he had had a few years ago.
On arrival at the hospital, Ruairi was rushed to intensive care where the paediatric team attempted to resuscitate him. They sadly were unsuccessful.
Ruairi died at 1 pm that afternoon.
I warned you that this was not a happy story but it is one I must write and I thank you for reading it. Ruairi and his story are of course fictional. They are based on a number of case reports I have reflected on recently and my experience supporting patients with asthma over a number of years now. The story above describes a catalogue of errors that incrementally accumulated to create an increasingly risky situation for this child.
I think sometimes as health professionals our inner risk averse voice talks to us and tells not to take on certain things.
‘It’ll be fine, someone else will do that bit’.
No-one stepped forward for Ruairi. Whilst there were many failures I think the most concerning was the advice around nebulised salbutamol. This may have masked the severity of his final asthma attack until it was ultimately too late. In addition to this no-one took him under their care to achieve adequate control of his asthma. Simply titrating up an inhaled corticosteroid inhaler, making sure he could use it with a spacer would have been a good start. Every encounter over the years focussed on solving the acute situation that presented. There was no forward thinking, planning or pro-active action.
Signs that Ruairi was struggling were repeatedly missed. For example, the overuse of salbutamol was never acted upon. His repeated oral corticosteroid use and subsequent hospital admissions failed to indicate the severity of his asthma.
I could go on. I won’t but I do want you to do one thing for me. Just one. It will only take 5 minutes but it might save a life.
I urge you to look at the document below and read that executive summary. I ask you to reflect on where you work and whether any of those recommendations apply to your practice.
Ask yourself how you are going to change your approach when dealing with children with asthma.
And then act. For Ruairi.