"Poor hospital care at St Johns, Livingston Scotland ENT Ward"

In late July I presented at the Edinburgh Royal Infirmary out of hours service suffering from weakness in the right side of my face (Bell's palsy), which had come on in the previous 12 hours or so.

My hunch was that the paralysis was linked to an ear infection from which I had been suffering for the previous 7 - 9 days. The infection was severe, and as well as leading to hearing loss and dizziness, had led to a suspected burst ear drum.

The nurse practitioner at the Royal initially diagnosed Bell's palsy, and was about to prescribe steroids, when she decided to consult with ENT specialists at St Johns hospital. Having done so, she informed me that St Johns staff had requested to see me at 08.15 the following morning. She then did not go ahead and give me the steroids, saying that the specialists would make an accurate overall diagnosis and proceed accordingly.

I arrived at Ward 19A of St Johns hospital shortly after 8am, and was ushered into a day room to wait. By 9.45, no one had joined me other than fellow patients. By this time I was overdue for medication, some of which required to be taken with food, so I asked the nurse if I could go and get something to eat. She offered to make me some toast, and this allowed me to take my medication.

Around 11am a doctor took me to a consulting room, and after several interruptions and apparent problems with equipment which he appeared unable to operate, he looked in both my ears, 'hoovered' the right one, and took me through the same simple tests for the weakness in my face that the nurse practitioner had done the previous evening.

He then disappeared to answer a pager call, came back around 10 mins later and told me that he would be sending me to Audiology for a hearing test. He did not tell me what I should do after the hearing test, to whom or where I should take the results, nor what was likely to happen subsequently. No apology or explanation was given for the 3 hour delay up to then, and no timeframe for future events was laid out. Such information that was given was difficult to make out, as despite my repeatedly telling him I was deaf, he spoke (to me at least) very quietly.

In the meantime, I waited in the day room, until the same doctor told me just after noon that the first time Audiology could see me would be 13.30. Exhausted and in pain, I retreated to my car to try and rest for an hour.

The Audiology appointment was taken on time, and with no surprise confirmed that I had hearing loss in both ears, but especially my right. I was then and am now unsure what value this added. At 14.00 I returned to the same waiting room I had first entered at 08.00.

At 14.45, I approached the nursing station and asked what was happening. The nurse apologised, summoned the doctor and they both agreed I would be seen 'literally' in 5 minutes. 25 minutes later, the doctor had peregrinated past my day room base once more, studiedly ignoring me through the window. But nobody came to see or talk to me.

I returned to the nursing station and in some anger and distress demanded to speak to someone in charge. Having made a fuss, amazingly and by coincidence a registrar and the ward sister were suddenly available. They went into a room with the doctor who had been 'treating' me since 8am, and held a private conference to which I was not privy. When they came out, I was taken into a consulting room by the registrar, who repeated the same examination as the doctor had at 11am, with the added bonus of a nasal endoscopy. By this time, it was nearly 4pm. The issue of what may have been causing the facial paralysis was not further explored.

When I raised my concerns about the delay, lack of information, and lack of expectation management, the registrar's responses were defensive and unapologetic. I had been made to feel a burden on resources throughout the day as I was ignored, and was now being made to feel as if local staffing issues were my responsibility too, or as if I should have been aware of such resource limitations. The only staff who expressed sympathy for my situation were some of the nurses, who agreed I had not been treated well.

Someone in the St Johns team thought my condition serious enough that I needed to be seen first thing in the morning. Yet, I spent the entire next day being shunted from pillar to post, with very little diagnostic work going on that had not either been done before (for instance by my GP or by the Royal out of hours service), or which added little light to what was causing my deafness, still less what was causing my paralysis. If the matter was urgent, then why was I left to fester doing nothing for so long? If the matter was not urgent, then why waste my - and everyone else's - time? Why not send me home with an apology for the wasted journey?

In the end, I got prescribed steroids for my face. This was what the nurse practitioner was poised to do 17 hours beforehand, before she made the well intentioned error of consulting the apparently chaotically managed St Johns. (Time is of the essence in administering steroids to ameliorate Bell's palsy, I have since learned.)

More evidence of the disorganisation: at the point of making a complaint about the doctor, I asked a nurse on the ward his name. She did not know, other than a first name. Not exactly indicative of good team communication.