"Lack of communication and no follow up care"

I would like to address some concerns I have about my ward's recent stay in Fiona Stanley hospital.

I am the legal guardian of an adult who lives with multiple disabilities. I want to be able to better support them next time they have to have a stay in hospital so there are no gaps in their care as they are a very vulnerable person so I feel if we can work through these concerns together this will help not only my ward but other people with disabilities that stay at Fiona Stanley in the future too.

My ward went in recently to have a PFO closure done but the closure device was displaced.

The cardiologist tried to retrieve the closure device by snaring it but couldn’t so they had to get a vascular surgeon to come and surgically remove it from my ward's aorta.

Originally they were just meant to stay in hospital for one night but they ended up staying for 13 days due to the nature of the surgery they ended up having being a much bigger surgery.

I was at the hospital from the afternoon while they were still trying to do the PFO closure device retrieval for 10 hours when I was finally informed they were in recovery from the aortic surgery in the early hours of the morning. I found it very hard to get any updates about what was happening with my ward while they were in having the procedures done. As the retrieval was only meant to take 2 hours maximum and and they were in there for almost 5 hours it was concerning.

And then for the major surgery I was told it would take around 3 hours and it took 5.5 hours and no one updated me and when I asked I was told everything was fine. When my ward finally in recovery in the early hours of the morning and I had been told it all went well I went home and asked for a phone call to let me know how the surgery had went.

I received a phone call the next morning and was just told the surgery all went well. I asked how long the actual surgery took because they were in the Lee for so long and the Doctor didn’t know. I asked if my ward had received blood products and the Doctor didn’t know and looked it up and informed me my ward had but didn’t know why.

When they were discharged from hospital they were given their discharge paperwork and I wasn’t emailed a copy from the hospital. When I eventually got to read their discharge summary I was shocked to find out that at the start of their surgery and post-op, my ward had a haematemesis, with the post OP one being 200ML and requiring a MET call. I would have still been at the hospital at this stage and feel like I should have been informed, if not at this point then definitely the next day.

Also I was told that the catheter that was put in them was going to stay in them permanently, that the continence team had put it in my ward and that they wanted it to stay in long term, due to problems they have emptying their bladder, even though they hadn’t been given permission to put a permanent catheter in. A temporary one for surgery obviously but they made it clear that it was to stay in. Fortunately one of the nurses accidentally took it out not realising that the continence clinic had wanted it left in. 

And when my ward was discharged from the hospital they were discharged without any aftercare instructions for their wound.

They had 56 staples from their aortic surgery and nothing was in place for dressing changes, no silver chain arranged to come and change the dressing and no appointment made for the staples to be removed.

I had travelled overseas before they were released from hospital and my ward lives in a group home so it took until one of their support workers took them to their GP on day 17 and they saw my ward's staples and they had to organise getting them out, by then the staples were getting overgrown with skin and they were looking infected, a swab was done and found a staph infection. The support worker also arranged silver chain to go to my ward's house and change their dressings. I don’t like to think what could have happened if they didn’t have a great GP.

I’m not sure if the hospital thought my ward's support workers could provide medical care for them or where the confusion was. 

The staff that I spoke to were all very nice and everyone treated my ward well.

I believe there is a lack of communication between the different departments of the hospital.