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Patient voice

"I felt that my concerns were being pushed aside"

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Jill McCormack’s son has asthma. Here she discusses her experiences of his care, contrasting community and hospital nursing

The patient

James* had his first asthma attack at eight weeks old. He then spent the first year of his life in and out of hospital. Asthma in babies is rare, but the hospital care he received was fantastic and the respiratorynurses were up to speed with the latest research and drugs available.

I became so in tune with my son’s needs that I was able to recognise early warning signs of an asthma attack.

The hospital respiratory unit advised me to take him to hospital the moment I noticed a problem. The nurses recognised that I had a “mother’s instinct” and they would always listen and respond to
my concerns. This prompt care prevented my son experiencing any unnecessary discomfort.

Eight years on, and James’s asthma is still classed as severe. However, it is well controlled, and he is now treated in the community.

I’ve noticed a difference in the level of knowledge about his condition between the hospital respiratory nurses and the asthma nurses in the community.

On a few occasions, I believe I’ve known more about the sort of drugs my child should be taking than the community nurses yet, even though I’ve acquired expertise in this area, they did not seem to recognise this.

Sometimes I felt they lacked empathy and that my concerns were being pushed aside. They didn’t seem to appreciate the severity of James’s asthma – it felt like they were simply following a checklist rather than thinking of him as an individual.

This is in total contrast to how the hospital respiratory nurses treated both James and me.

As a result, I eventually lost confidence in the community nursing staff and moved to another GP practice. Now I conduct any discussions about altering my son’s medicines with my GP.

Nurses specialising in asthma care in the community should have frequent and thorough training to keep abreast of the latest developments in this area. Ensuring that hospital respiratory units are better linked to asthma nurses in the community could also be useful.

I would also urge nurses caring for children with long-term conditions to really listen to parents. We know our children. Respiratory nurses listened to my instincts – and this helped to save James’s life so many times.

* The patient’s name has been changed

Expert comment

I was pleased to read that Jill’s son received excellent care in hospital. It is good she has raised her concerns about the care he has received from community nurses, so lessons can be learned.

Unfortunately, community nurses can often fall into the role of asthma nurse without any asthma training or qualifications. Nurses need to demand support and training before they can care for people with asthma – or any other long-term condition. They need to negotiate with colleagues to get sufficient consulting time.

Providing care for people with asthma requires expert knowledge of the asthma guidelines, information on treatments, and expertise in how to teach and check inhaler technique.

Excellent communication skills are required. It is impossible to assess asthma control and give good care without detailed dialogue with patients or their families.

I would expect families of children with asthma to be at the centre of their child’s care and involved in all decisions about treatment. They should have the right to see trained health professionals who follow the British Guideline on the Management of Asthma and have a recognised respiratory qualification. They should also have access to specialist health professionals and services that meet their individual needs.

This is not possible without community staff being supported. With all the changes in the NHS, I would like to see care and treatment of asthma taken more seriously.

 

Learning points

  • Nurses should recognise that parents know their children best, respect this knowledge and take their concerns on board
  • Nurses should treat patients as an individuals and listen and discuss their health with them
  • Nurses should keep up to date with respiratory medicine and discuss training with managers

 

Angela Jones is an asthma nurse specialist, Asthma UK. www.asthma.org.uk

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