This is the 49th #WILTW

I met an inspirational couple this week who lost their son, Oscar, to a very rare complication of a viral infection. Oscar had come to hospital with a infection in his bone but at some stage during his illness caught rotavirus (a virus which commonly causes diarrhoea and vomiting in children). Unusually the virus spread to his brain and he was not able to recover from this.

During their time in hospital they both eloquently describe how they knew that there was something wrong with Oscar but felt no-one was really appreciating their concern. You hear this story all too often after tragedies, regardless of whether medical error has occurred. I have written previously on engaging parents in the identification of ill children and the great work Cincinnati’s children’s hospital have done on this. Their narrative really hit home as during a clinical shift earlier in the week I had been humbled by a mother’s comments to me, “Thank you for listening“. From my perspective that was the least I had done but for her the ‘medical’ interventions less relevant than the validation of concerns following numerous consultations.

A friend from the ASK SNIFF research group uses the term enacted criticism in the relationship between parents/carers and health care professionals which is described in this video.

One thing that stood out for me in talking to Oscar’s parents was Hannah’s comment, “isn’t there a difference between being unconscious and sleeping?” There certainly is but that difference may only be appreciated by someone who knows their child well or is very experienced. The term ‘lethargy’ is a ill-defined dangerous word. I will always review a child if someone describes them as lethargic. The divide between being tired and obtunded (a medical description of someone who is very unwell) is wide in principle but sometimes not so in practice.

There is then a double dilemma. The ability to listen well, by truly hearing what you are being told, but also have a common language, by using words which are understood by all. In a world of increasingly reliant on technology and protocol there will always remain the need to teach all health care professionals these simple, but vital, communication skills.

What have you learnt this week? #WILTW

Oscar’s parents have set up a charity Thinking of Oscar