Tuesday morning 14th January’14 found me sitting in my lovely room in the Cancer Centre at Belfast City Hospital.
Leah was going for a CT scan of her lungs.
The policies of the ICU did not permit relatives to accompany patients for these procedures.
My TYA (teenage & young adult) oncology nurse specialist came to see me in my room.
She said that she & my TYA Social Worker were concerned about some of the issues I was experiencing in ICU and the impact of these on my stress levels.
She said that she would speak to the nurse in charge on my behalf and wanted to know which issues I wanted addressed.
I explained that most of the nurses were brilliant and some of the doctors, especially the younger ones, were good at communicating with me – the problem was that how I fared on any given day depended on who was on duty.
I said that there was really only two issues that I wanted addressed.
One was the fact that when certain consultants were in charge I had to beg for information.
Whenever I was asked to leave ICU during Doctors rounds I would say to the nurse looking after Leah “Please ask the consultant to give me an update when he has finished his rounds.”
On more than one occasion this request elicited the following reply from a nurse “It is not the norm in this unit for doctors to speak to relatives on a daily basis.”
I told my TYA nurse that I NEVER wanted to hear that phrase again – the patient in the bed was 16 years old, she was just a child, I was not just a relative I was her mummy, she was dying and I didn’t care what the norm was in that unit – I wanted the opportunity to discuss my daughter’s medical condition with the doctor looking after her, on a daily basis.
The other issue I wanted raised was the amount of time I spent sitting outside ICU in the corridor, separated from my child.
I accepted that the policies of the unit meant that I was asked to leave for all sorts of reasons.
Most of the nurses kept this time as short as possible, but sometimes it seemed that the amount of time I was left sitting out in the corridor varied according to who was on duty.
My time with my critically ill child was so precious to me and I felt actual physical pain in my heart when forcibly separated from her.
I asked my TYA nurse to ask the staff to please keep separations as short as possible.
My TYA nurse was very understanding and went and spoke to the nurse in charge in ICU.
The particular nurse in charge that day was one of the kindest, gentlest people you could ever wish to meet and she was maybe a little taken aback to hear that a small minority of staff treated me very differently to how she treated me.
However, she took on board what was said.
Leah’s CT scan that day showed serious deterioration and we very quickly found ourselves discussing end of life plans, so the goal posts moved quite dramatically.
However, it was so important for me to know that I had professionals like my TYA Oncology Nurse Specialist & Clic Sargent SW who would listen to me, support me and advocate on my behalf.