Critically Ill in PED – the Patient Perspective at #smaccMINI #smaccDUB

 

One of my favourite sections of the #smaccMINI workshop at #smaccDUB last year was when my Paediatric ED colleague Roisin McNamara from Dublin and I got the chance to speak a young woman called Eimear.

Roisin had already spoken about her personal communication nightmares in PED (you can listen to her talk here) – I’d really recommend you have a listen and reflect on how you could communicate better. Roisin and I had been working hard in the run up to the conference to find someone who could provide a much needed patient perspective, something that is often missing from medical conferences. Even when we remember to involve patients in improving the care we deliver, we usually opt for adults.

Advocates for the child/young person’s voice in healthcare (sometimes abbreviated to CYP) will tell you that although these patients are often overlooked  they can bring huge value to healthcare improvement. I’ll admit I’ve been following Kath Evans, a children’s nurse and experience of care lead at NHS England, on Twitter for a few years – Kath tweets lots of great reminders about the importance of seeking the CYP voice and ways we can do just that.

So in the run-up to smaccDUB I contacted some of my Irish colleagues to see if they could think of a young person with a recent critical illness who might be willing and able to come to talk to us about their experiences. We were delighted to have Eimear (aged 11) and her mum, Rachel, join us and speak to us at the workshop.

I’ll let Eimear tell you her own story – that’s why we invited her, after all. Rest assured, we have consent to share this story from Eimear, her mother and the treating hospital. The podcast link is below and I’ve summarised some of Eimear’s key messages underneath.

Eimear & Rachel’s Key Messages

  • It’s scary to be surrounded by lots of unfamiliar faces in resus and in theatre (and theatre smells unfamiliar)
  • If someone talks to you, you will feel less scared
  • It’s very hard to take on complicated information when it’s late at night and you’re tired!
  • Waking up in ICU is scary; it can be very uncomfortable and it’s hard to understand why you can’t do normal things if the reasons aren’t explained
  • Don’t use long words to explain things! “No-one understands them if they’re not a doctor!”
  • It’s better to explain things (I’ll feel less scared), rather than hiding things because you think they’ll scare me
  • Being in an isolation room is scary, particularly when everyone who comes near you has to wear a gown, mask and gloves
  • It’s very uncomfortable trying to eat with an NG tube in place
  • When a patient has been critically ill, the discharge process is a big step and quite anxiety-inducing; particularly if it’s brought forward unexpectedly
  • When you discharge someone it’s important to make sure that the patient and their carer(s) understand what is a normal part of their recovery and when to get help
  • Making the wards and bed spaces more friendly (with art, for example, or cartoon characters) would help patients feel less scared

Further Reading

Healthcare Devon’s Independent Inquiry Report on Children & Young People speaking out on health and care services

The RCPCH CYP Child Health Research Charter

If you are looking for healthcare professionals with a good grasp of CYP advocacy issues, follow Kath Evans and/or Andrew Rowland

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1 Comment

  1. Pingback: Critically Ill in PED – the Patient Perspective at #smaccMINI #smaccDUB – Global Intensive Care

Thanks so much for following. Viva la #FOAMed

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