"Mixed feelings about care received"

My parent, who recently passed away was well cared for during their final days (shared here). However, I have mixed feelings about the care my parent received over the last few months and the lead up to my parent's last few days in hospital leaves me jaded.

They had multiple presentations to ED since earlier this year with abdominal (abdo) pain. The other visits at another hospital earlier this year and then 3 at Sir Charles Gairdner Hospital (SCGH) and each time a CT scan was performed (I now know that these are performed without dye and therefore the full picture is not seen) nothing was found and my parent was sent home. I feel that if a CT scan with dye was performed my parent’s condition would have been identified and treated before it was too late.

A few months ago my parent was admitted to SCGH with pneumonia. They were sent home a few days later. I called prior to discharge to voice my concern that my parent was too unwell to be sent home, the nurse I spoke to, I felt, dismissed my concerns and said that they had been medically cleared and would be sent to the discharge lounge. I feel they did not listen to my concerns.

A few days after that, my parent was again in Emergency Department (ED) at SCGH with abdo pain and this time it showed that their diverticulitis was inflamed. I told the ED staff that this was an ongoing issue and this was now the 4th abdo pain admission in a few months but I was not listened to. As soon as they found the inflamed diverticulitis they stopped looking. My parent was sent home a few days after that. Again I called, this time I spoke to a Dr and asked if my parent could be discharged to another hospital as I felt they were too unwell to go home. The Dr told me that my parent had been up and walking around, taken up and downstairs and was fine to go home. I felt uncomfortable taking my parent home but you know Dr knows best!!

Within 24hrs we were back at SCGH! This time I left work to be at the hospital early morning but the medical round had already happened. I told the nurse who was looking after my parent of my concerns and that I felt no one was listening, and this nurse was amazing. They passed this info on to the Shift Coordinator and the CNS and the medical team were coming to speak to me. Then we had the first MET call and the staff were amazing, and suddenly the medical team listened. A CT scan with dye was done and my parent was found to have a swollen colon and bowel. I believe they were worried about it bursting as it was so swollen but couldn't find the cause. Our options at this stage were major surgery on a patient that was now very weak or conservative care. We chose conservative care but by the next day, my parent's tummy was so swollen it looked like they were pregnant with twins in my opinion. This was distressing to both my parent and me. I believe they were in excruciating pain and could only lie on their right side as the swelling was on the left. After speaking to the Consultant looking after my parent we decided to go palliative and later that night my parent passed.

My impression of the ED process is to find the first cause and treat it, don’t look further. I feel it is more important for them to meet KPI's and that awful under 4-hour rule. In my opinion, you proudly display those figures but what you don’t display is your readmission rate, the representations to ED, the stress on the patient and the family. If my parent and I had been listened to there could have been a better outcome and my parent may still have been with us. My parent was a strong healthy person who was very health conscious and always looked after their health.

I understand and see how busy the staff in ED and on the wards are and sympathise with them, they are doing their best within the rules and regulations they must adhere to. It is such a shame that this becomes more important than the patient. The ‘Care call' process is a step in the right direction but it shouldn’t take a ‘call’ for patients and family to be listened to, I believe it should always happen.