"Let down by a lack of communication"

First all let me stress that this is not a criticism of any individual, but highlighting where information is not available, shared or passed on between people, Departments and different NHS Regions.

On the whole, my care was excellent (with one small exception), but a lack of communication failed all of us in several areas.

I came into St. John's Hospital for a planned tracheostomy, which pretty much seems to have gone as expected. I also feed through a tube in my tummy. The one thing that did go wrong was when I was given saline instead of sterile water to assist with bolas feeding, and I had used 600 ml before anyone noticed and swapped it for sterile water. At least it explained my headache and raging thirst.

There were on-ward issues with data when, for example the one of the Doctors told me that my infection markers were going down. I pointed out that I had only had one set of blood tests, so how could they tell that the infection markers were going down from a single set of results? The Doctor couldn't answer that and said they would order more blood tests. Those tests didn't happen for another 2 days.

On two separate occasions, the Doctors said they would like to take a look down the tracheostomy tube with a small camera to see how things were positioned and healing. This never happened at all.

The biggest issue from my point of view was my formal discharge being delayed by 2 days while the Hospital tried to contact my local District Nurses in Fife to look after me when I got home. I think the first day of delay was caused by someone either forgetting to call them or getting no answer initially and forgetting to call again.

I was eventually discharged and waited 48 hours for the District Nurses to get in touch. When we didn't hear anything, we went to our local Health Centre to try and find out what was going on. We could not get to see the District Nurses directly, but the Health Centre receptionist said they could message them for us and ask them to call my wife.

They called the following day with a message that was clearly untrue when they said - Is he the one who was just discharged from St. John's? No, we don't know anything about him. Those statements are mutually exclusive.

We then travelled back from Fife to St. John's to ask the staff to contact the District Nurses again. The Nurse from St. John's rang back later in the day to say that they had spoken to the District Nurses in Fife, but that they had refused to come out and see me because I was classed as independent.

We have since been to the Health Centre again to see a Nurse Practitioner in the General Surgery, and we have managed to order things like extra dressings. We don't mind travelling to the Health Centre to sort these things out, but if that had been made clear at the outset instead of trying to get the District Nurses (who were never going to come), it would have saved me and the staff at St. John's a load of time and wasted effort and I would have been discharged 2 days earlier.