"I have no confidence in my treatment and no-one seems to care."

I was referred to the dental hospital in August 2015 after having a strong salty taste in one side of my mouth that my own dentist could not explain. At my first appointment in October, the specialist I saw was still unsure what the issue was, but upon pressing down on a wisdom tooth under my gum, he noticed that some fluid emerged in this area. In December an X-ray revealed a mass underneath my gum. I was told that an appointment would be arranged to take a biopsy, and that I would receive an appointment for a CT scan.

In March I attended oral surgery. The mass was quite far under my gum so under local anaesthetic, the surgeons drilled into my jaw to take the biopsy. I was given an appointment for 6 weeks later to receive the biopsy results, and informed that at this appointment a treatment plan would be arranged. I was also told that I had been marked as urgent for the CT scan. I had to return to the dental hospital shortly after the biopsy to receive antibiotics for an infection (and a very swollen face), but other than that, my mouth healed quite well.

After waiting 5 weeks, I called the dental hospital and spoke to a nurse, as I wanted to check that I wouldn't receive any surgery at my appointment, and could return to work. She confirmed that the appointment would be to receive the biopsy results and discuss a treatment plan.

I finally had the appointment this week. I felt quite nervous as I know that the taste that I have in my mouth (for 15 months now) is not normal, and I've been concerned that none of the specialists who have treated me can offer a diagnosis. I was met by a student nurse, who said that she had been asked to speak to me about the swelling I had after the biopsy. I felt confused, as I received the appointment before I had the infection, and to be honest, If I still had swelling after 6 weeks I would have returned sooner. I had to go right back to the start to explain my current situation, and that I was there to receive the biopsy results. She was both concerned that I hadn't had the results, and then justified this by telling me that biopsies typically take 8 weeks to come back. She had my notes in her hand, but appeared to have no idea why I was there or what to tell me. After telling me 'not to get myself upset', she left to find a slightly more senior specialist (I assume). He looked at my notes and told me that the biopsy results showed a follicle which had formed a bud – this meant nothing to me. He didn't explain how it would be treated or what would happen next. He did ask if he could look in my mouth – which around ten specialists have already done, and have assured me that there is nothing to see. Apart from asking me if I grind my teeth, he couldn't offer any insight. He asked me if I was still doing salt water mouth washes, and suggested that this might be a reason for the taste. He also said that I should get my iron levels checked by my GP as this might explain the taste in my mouth. I found both these suggestions completely patronising – the taste I'm experiencing is coming from the site of the biopsy, at one side of my mouth. I can almost feel it leaking into my mouth.

I felt everything I said was falling on deaf ears, and was getting very angry. He almost laughed at me and told me not to worry – 'I'm sure its not anything sinister'. I have absolutely no confidence in anything I was told. I appreciate that it will not always be possible to see the same specialist more than once, but the ones I did see had no knowledge of my situation, and very little compassion for the way I've been feeling. If no-one can give me a straight answer, how am I supposed to trust the (often conflicting) information I'm being given?

He finally left to find yet another specialist. After sitting in the room on my own for 25 minutes, a more experienced specialist (I have no idea what roles any of these people have, so am unable to be more specific! ) came into the room and apologised for how long I've had to wait for answers. She said that I should have had my CT scan between having the biopsy and this appointment, and that I had been marked as urgent. She arranged an appointment for the CT scan in a months time, and then another follow up with a consultant in 3 months time. Incidentally, when I got home from work that day, I had a letter with an appointment for the CT scan. My guess is that when I called the previous week and a nurse looked at my notes over the phone, she realised that I should have had the scan before I received the results, and quickly sent this letter.

Although I finally feel that some progress was made, I feel none of this would have happened if I hadn't got upset and demanded more information. I'm genuinely not a confrontational person or a complainer, but the misinformation and general way that I was treated really shocked me. I now have a much longer wait for any real answers, and I'm not even confident that this will happen. During the appointment, it dawned on me that I have become one in a long line of patients who wait months between appointment times. I have continually received inconsistent information, and felt treated as a number, rather than a person.