"Lack of investigations and poor communication"

My son was very unwell in January and ended up staying in hospital for 2 weeks. His infection did not respond to  a number of strong IV antibiotics until the start of the 2nd week. Several blood tests and other investigations were done almost daily. Eventually his infection symptoms responded to the antibiotic and he was then discharged  but had to come in for his antibiotics for approx 2 days then was fully discharged with no final diagnosis. We had to wait for the ultrasound appointment because, though not definite, the Drs thought it was a kidney infection yet urine tests were fine.

The day for the out patient ultrasound came and it was fine and there was a plan for another ultrasound with a dye which we are still waiting for. While we are waiting for that Ultrasound, he has been sick and had to go to St Mary’s and QA 3 times. Last week he was admitted and treated with iv antibiotics. Still no diagnosis. The Drs are treating the symptoms and then discharge him. We as parents raised our concerns about treating symptoms or recurrent infections without knowing the course since January. We asked if the team can extend their level of investigations to exclude other possible causes of infection to make sure there is no delay in treating the actual course. The Drs said they cannot do further investigations unless it is necessary! That worried us as parents who are very health aware (Professionals to be exact.)

In this admission, his blood tests and fever showed signs of infection and he was then commenced on iv antibiotics. He developed an allergic reaction in the first dose of his antibiotics (severe stomach cramps, skin rash, general body felt like burning and he vomited within 5-10 minutes which was then stopped, antihistamine given and bloods sent straight away for allergy test. While waiting for allergy blood results, he was transferred to Starfish ward for further management and observations. 

The porters wheeled him to starfish ward and told us that the nurse was coming to meet us after the report/handover. We waited for 45 min+ and we felt that there was no one coming to meet us especially because the boy has had an allergic reaction before being wheeled in. Seeing that  it was strange not to be seen for that long and not even doing a set of obs or give a jug of water in a new ward, I walked to the door and realised that there were nurses and other uniformed staff members sitting and some standing and chatting in the corridor, even the porters who brought us in were there. I introduced myself to one of the nearest nurses who was just chatting with their colleagues and I told them that our boy has not been seen by the named nurse since we came to the ward. They leisurely told me that they received the handover and his nurse has gone for lunch and there was no medication due as per report handover. I stated that our son had an allergic reaction just before he left the Assessment Unit and I thought a normal introduction, an update, a jug of water and quick obs were a normal thing to do for each patient that comes in and allowing own professional discretion based on the handover and the state/condition of the patient. They made it clear that there was nothing to worry about because the named nurse was aware of everything. We felt uneasy! I had to thank them for at-least walking from the corridor to the bed side with me then they left.

The bed side table was obviously not cleaned after the previous patient and we had to clean it before placing our bags on it. When the named nurse came after approx 1 hour, they introduced themselves and told us they were out for lunch. I asked for water and they kindly brought the jug and cups. When they came with water they then told us that ultrasound Unit was already calling for my son and he must drink before the scan. I wished we were informed earlier. Had to convince him to drink as he was taken to the Scan unit.

The kidney scan was NAD. Relieved but where is this infection coming from?! We asked the Drs to do further tests but they said they do not do such unless it is necessary.

After 2 days, the symptoms disappeared and he was discharged on abx to take home. We raised our concerns  more than once about extra tests. I then asked to see the medical records as parents. The Dr just told me right in my face that medical records are not for -lay people-. I wondered what criteria they used to label us as lay people? Was is the race and ethnicity or  what?! I am still shocked. The Dr did not introduce themselves as would be polite. They told us they were going to find out how we can get medical records if we need them. I told them that I just wanted to read and see how the communication is like about our son or we are missing something.

I hope the Drs will understand what it is like to have a child who is treated with broad spectrum abx and discharged as soon as symptoms ease without a diagnosis.