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Why are patients and healthcare professionals not as engaged with respiratory care as with other diseases?


Having been involved in the asthma deaths inquiry panel, Rebecca Sherrington questions why simple changes aren’t being made in respiratory care

Within the past 2 months, two inquiries have both highlighted inadequacies and compliancy in respiratory care - the National Asthma Deaths Inquiry and this month the All Parliamentary Party Group (APPG) inquiry in to Respiratory Deaths

As a nurse on the asthma deaths inquiry panels, I examined the records of two people who had died of asthma. It was an incredibly sobering and very moving experience, reading the notes of an anonymous young person, who had died that year as a result of asthma. 

As a wife, I never stopped thinking: what position would I be in if this had been my husband or even one of my daughters

As a nurse, it was also a very sobering professional reminder of the position I would be in if this had been my patient. 

“the compliancy about respiratory disease is disgraceful and cannot continue”

Having been on the report panel and at the launch of the respiratory deaths inquiry as chair of a national association (ARNS, which represents respiratory nurses), I fully support the reports. I am now knocking on the doors of those in power to ensure that the deaths of all those within the inquiry have not been in vain.

However, I question whether the current recommendations are simply an extension of the past few decades and whether they really can lead to the vital and monumental shift in change that is truly needed.

I ask this, not because I don’t support the reports, but because I am passionate in my views that the compliancy about respiratory disease is disgraceful and cannot continue.

I strongly feel that perhaps we need a massive and completely new marketing approach that puts the general public in the position power – with greater knowledge and understanding of lung health. In order to do this we need a revolution to completely replace our language and wholly change the technology we use.

For example, if I am concerned about my blood pressure, I can visit my local co-op and have my pressure checked. 

What access to lung checks do patients have?

What we really need is for the same accessibility for patients to go to their local pharmacy and use a piece of equipment that will provide a lung check. No appointment to see your GP, no reliance on the practice nurse having been trained in how to use the spirometer, just a simple machine that you can blow in to and get an immediate result – I wouldn’t call it spirometry either!

Again looking at technology, If inhalers aren’t been used properly and only 10% know how to use them – including those who prescribe them – don’t we need to ask why?

Why should we need to rely on healthcare professionals knowing how to correctly use inhalers and then rely on them again to effectively teach patients? If patients’ inhaler techniques drop after one year then perhaps we need to campaign to have the drugs industry standardise and design something that is usable to everyone without having to rely on being shown.

Why don’t we have a single inhaler that has a simple mechanism which allows patients to see if you’ve done it right?

“Why have we not followed suit in respiratory care?”

Similarly, we need to change the wording of our diagnoses. We use COPD as a term that is understood by no-one outside of a respiratory clinic and is rarely said correctly by patients.

If a CVA can be rebranded as “stroke” and the M.I. brilliantly renamed “heart attack” to make it easier for the general public to understand, why have we not followed suit in respiratory care? Chronic obstructive pulmonary disease, Idiopathic pulmonary fibrosis – could we use these terms on the side of a bus or bus shelter for a campaign or in a TV advert? Absolutely not. 

We need to market and promote words that are easily understood by the general public and commonly referred to. 

So while I support the recommendations, I also believe that respiratory organisations need to look at why patients and healthcare professionals aren’t engaged or profiling respiratory care with the same enthusiasm as other diseases. For this to happen we really need to move the specialism into patient’s hands and minds. 


Rebecca Sherrington is Chair of Association Respiratory Nurse Specialists and Respiratory Nurse Consultant, Guernsey

Follow her on twitter: @becksherrington



Readers' comments (2)

  • I completely agree. I have worked in both secondary and primary care where the majority of patients have been prescribed a variety of inhalers without any demonstration of use. Many inhalers do show the count down in doses but this does not reflect the technique. An overwhelming choice of pharmaceutical preparations adds to confusion to prescribers and patients; combined with concordance and attendance for monitoring places patient and practitioner in a no win situation.

    The terminology around respiratory medicine is more varied, I believe, that that in many of the other principles. My experience in respiratory care is that patients want to know what respiratory problem they have; but understanding is limited.

    Other specialities such as cardiology, have a dramatic, glamorous component to them. Whereas, sputum, does not really have the same appeal.

    It would be fantastic to replicate the love your heart to love your lungs and generate the same equity of importance.

    I think, that lung disease can be misrepresented in the fact that, as smoking is the leading cause of many lung disorders; perhaps a proportion of the general public still see it as something the patient themselves has deserved.

    Personally, I have nursed countless medical conditions and have attended more cardiac/respiratory arrests than I wish I had; but still, to me, breathlessness due to whatever origin is the scariest thing to experience and witness.

    I completely agree, respiratory medicine is the poor cousin and this must change to reflect the dynamic, important and vital area of public health that it is concerned with.

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  • when i started out copd and coad seemed to be used interchangeably, i'm not sure why copd is now more favoured, but i much prefer the term chronic obstructive lung disease. it's got the word "chronic," jargon to help the professional feel in control, whilst the acronym should be "easily understood by the general public and commonly referred to." or maybe it's just too common.

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