"Internal Communications"

I brought my boy of 21 months into the Bluebell ward last Thursday. He was due to have an NG tube fitted, due to failure to thrive, a symptom of his genetic illness. This was particularly apt timing since my son had contracted a virus which was, at worst, crippling as he wouldn’t eat or drink.

The staff, particularly the nurses, couldn’t do more for him, and me. We stayed over night and were discharged earlier than planned, Friday afternoon (the night before was very disrupted and we both had little sleep). This couldn’t have been done if it weren’t for the nurses’ promptness in fully training me to feed using the tube and liaising between consultants and dietician. They arranged adequate supplies for the first few days and contacted Abbott to deliver a full supply to my home on Monday. I couldn’t have been more grateful.

On Sunday morning my boy was sick and the tube came out, so we had to come into Chlidrens A&E for a new one to be fitted. Having been in two days before I was surprised that I had to explain my boy’s diagnosis and symptoms, as well as confirm which tube and how many cms it need to be fitted. Apparently A&E can’t access other ward’s systems which considering we were a five minute walk away seemed ridiculous. The nurse was very helpful despite having no information on my boy but the whole situation was unnecessarily difficult due to them not having all of his notes to hand. I had developed an awful cold and was exhausted, and really didn’t want to be talking through something that has shattered my world since diagnosis a few months ago. I understand the NHS are under a lot of pressure, so why can’t internal communications be made more accessible?

I purposely came back to Lister for the reason that his recent and relevant history was on file - I could have gone to Harlow which is nearer for me.

This does not take away the excellent care that has been provided to us but I think valid feedback to consider. Many thanks,