"How not to give a patient bad news"

I had an Endometrial biopsy at Gynae Outpatients, Simpson Centre for Reproductive Health, Royal Infirmary of Edinburgh: The doctor promised to write to me directly at my home address within two weeks.

Despite their promise, I was phoned by their Secretary, 8 days later to offer me an appointment with the doctor for my biopsy results 5 days after that at Gynae Outpatients at the RIE. The Secretary did offer to call me back as was out and about with no pen/paper to take her number down which was helpful.

Not unreasonably, I assumed the appointment would be with the same doctor as before. Their secretary wouldn’t give me any more information about what would happen then or what the results were as they were not a doctor. So just had to sit it out all over the Easter Weekend.

When I checked in at Gynae O/P the receptionist said that my initial doctor wasn't in that day and brusquely asked me to complete a new form with my name, address, and contact details for my next of kin etc. I explained that I was already in the system but they didn’t want to know. I told them that the Secretary had phoned to give me this appointment at which I would get my diagnosis. As I was already in the system I was puzzled as to why I had to fill in another form. They weren’t impressed by this. When I told them again that I’d been given this appointment by the doctor's Secretary to get my diagnosis they said it’s a triage appointment, like A & E, nothing to worry about.

My heart sank into my boots as I feared the results must be very, very serious. This was very frightening news indeed. I was by this time so scared and confused I excused myself and went to the toilet to have a good cry.

When I’d regained my composure, I went back to reception again and told them about my previous appointment with the doctor, but they didn’t want to hear about this or see the original appointment letter either. I reluctantly filled in the form and as instructed and went to sit in the waiting area.

What happened next: a while later, a someone who I assumed was a nurse, called out my name and took me through to an examination room. I asked them what was happening and they also said there was nothing to worry about as this was a Gynae A & E Triage Clinic. They said they couldn’t tell me anything else as they weren't a nurse. They did say that as there was only 1 doctor in that day, They didn’t know how long I had to wait. ” But they couldn’t tell me what would happen next or whether I would have to have another internal examination or not. And, of course, while I appreciate that waits are sometimes necessary, it would have been kinder to have left me in the waiting area rather than an examination room.

After waiting about 15 minutes another staff member came in to the examination room and offered me a cup of tea. By this time I was almost on the ceiling with fear. The first person later brought me the cup of tea and again said they couldn’t help me. I asked them to find someone who could and they again explained that it’s Gynae Accident and Emergency Triage and left me on my own again. I was now more than terrified, expecting the worst of news. I apologised to both of these staff as they were clearly trying their best to be reassuring and neither was responsible for this very difficult situation.

Half an hour later a doctor appeared and seemed quite disconcerted when I asked them what on earth was going on. They clearly realised that I was very, very distressed. I said I was sorry they were having to deal with my panic. They then asked me how long I’d been waiting in the examination room. They seemed more than a little taken aback when I said over half an hour.

They then gave me my diagnosis which they said is very curable and amenable to surgical treatment ie hysterectomy, (possibly keyhole/laparoscopic) with an almost 90% success rate. The lymph nodes might also be removed as a precautionary measure. I would meet with the surgeon before my op. I would spend one to two days in hospital after the op. I had to ask them to slow down and repeat some things to give me time to write all of this down as I couldn’t really take it all in. They also said that the Gynae Cancer MTD (I now know that this is a multi-disciplinary team), which meets every Thursday, had decided to refer me for both MRI (pelvis) & CT (chest) scans. I asked them when this would be and they said the scans had been ordered. There could be 2 separate appointments within four weeks. I didn’t really understand what this was all about as, unsurprisingly, the only piece of news I could take in was that I have cancer. The doctor was very kind and consoling and I did feel a bit calmer after listening to them and asking them questions.

They left me alone again and came back with the date and time of my appointment at Clinical Radiology on a post it note which was helpful. They recommended a specialist nurse for Gynae Cancer who would be key after my op. They didn’t explain how I could contact them. They didn’t give me any written information but suggested I look at the Endometrial Cancer section on the Macmillan website.

I asked him why this had all happened and if they could make sure it didn’t happen to anyone else in future. They didn’t seem to know. I’ve no idea if they did this or not. I was still so spooked at the end of this session I was completely disorientated and had to ask the doctor to show me how to find my way back to the reception area.

I did feel sorry for the doctor as they’d had to deal with my panic and fear as it presumably wasn’t their fault that I’d been put through this quite unnecessary and unpleasant experience. I sent them a thank you card the next day as I thought they handled it very well. However, I definitely felt much sorrier for myself.

When I later met a different Gynae Oncology doctor and the CNS for the scan results and consent to surgery discussion a month later they didn’t know anything about my duff experience. The doctor said it should never have happened. I don’t know whether they took this any further either.

I should add that this doctor was very helpful, reassuring and kind, answering all my questions. They gave me the Macmillan Endometrial Cancer information booklet, a much easier read that the onscreen version. They and the CNS restored my confidence in Gynae services and I was left feeling much less anxious about my impending operation. I sent them both thank you cards as well.