Blunders

I had a telephone appointment for a consultation - the only chance to speak to my oncologist every 6 weeks. 

The appointed time came and went and after 3 hours nobody had called. Eventually I rang the hospital to ask if they forgot to ring me and was told that my appointment had been rescheduled for an hour later but nobody had informed me about that plus of course, by then there was a 2 hour delay for that appointment.

Finally, another hour later, the oncologist rang. There was no apology for being 4 hours late. 

Of course I understand that there can be emergencies and/or delays but would it not be possible to just send a text and let the patients know? In those 4 hours I have been checking repeatedly if my phone is fully charged, if the volume is on and up and of course I didn’t venture out because I didn’t want to be out and about for my consultation - I did prepare for the consultation and had questions written down. For me it was 4 hours wasted waiting for a scheduled phone call but what was worse was the feeling of being forgotten and the feeling of ‘not being that important’ to the people I depend on which is pretty disturbing as my health is the only thing that is super important to me and it is in the hands of the people who call me 4 hours later than expected.

Now, would they mind me turning up 4 hours late for an appointment? I don’t think so!  

I received an appointment letter to come in for a face-to-face consultation. 

The week before the appointment the receptionist of that clinic left a message on my voice mail confirming a telephone appointment. I immediately called her back and explained that I had in fact received an invite for a face-to-face appointment.

She told me that she needs to check with the consultant who wasn’t in for the rest of the week but that she would get back to me on Monday (the appointment was for Wednesday). Nothing happened on Monday so I called the hospital and spoke to the appointment team as this was the only contact number given on the original invite. The very helpful lady double checked and confirmed that this was definitely a face-to-face appointment. 

When I got there on Wednesday I was told that this is a telephone appointment, that they only offer telephone appointments and that the consultant is not even in clinic. I was gobsmacked and really didn’t know what to do. Was I supposed to find a quiet place in the hospital to take the phone call from the consultant? It was too late to go home in time too. 

The receptionist took pity on me and tried to find a member of the consultant team to see me. Whilst she was sorting that out, the consultant rang me and I told her that I was at the hospital. She said she can’t really see me because there is no room. I suggested using a waiting area which was empty but she stated that we needed privacy. 

Eventually she came to see me and we went room hunting and managed to find an empty room where we had a really good consultation - meaning, a friendly face and not just a voice on the phone who is eager to get you off the phone asap. 

My question though is, why was I sent a face-to-face invitation if they only offer telephone consultations? That kind of stress for me was totally avoidable and so unnecessary and it could so easily be avoided by giving clear instructions to the patient and sticking with them.

For over a year I never received my consultation letters - and I'm still awaiting my latest one.

After every consultation I waited and waited and waited and finally called the hospital to ask if they could email it over to me. 

These letters are really important as often I simply couldn't take everything on board that the oncologist said. Also, sometimes there were things mentioned in the letters that weren't mentioned during the consultation or maybe I didn't remember them fully. And of course it is really important for me to get something in writing that I can refer to especially if it is about a change in my medication. 

So, calling the hospital and asking for the letter takes about 10 min or so. This is time that could be saved by simply printing out a minimum of 2 copies of each consultation letter that gets issued - one for the patient and the other one for the GP. 

On Wednesday the UCH called to make an appointment for a bronchoscopy and biopsy for the following Saturday. They told me that I need to do a covid test the next day, on Thursday and that they will contact the Whittington to contact me and make an appointment for that. 

Thursday arrived and nobody had called so I contacted the hospital and asked about it. I was told to come in that day. 

On Friday morning I was asked to come in again asap because apparently they’d labelled the test wrongly and it had to be done again. I was very worried if the results will get back in time as it was less than 24 hours before the scheduled bronchoscopy. I was told “it should be ok”. 

Well, turns out, it was only ok because I asked for a clear and concise answer and the lovely head cancer nurse emailed me the results at 10pm the night before the scheduled bronchoscopy. 

And guess what, when I got to UCH they told me that they hadn’t received the test results but luckily I could show the nurse the email I had received from the head cancer nurse. If I hadn’t, I guess they would have to reschedule the whole bronchoscopy and biopsy….. 

Why is it up to the patient to make and chase appointments? 

I was diagnosed with pulmonary embolism when the doctors found my cancer and I had to start taking blood thinners immediately. 

I injected myself daily for 8 months and was put on tablets twice daily after that. 

My oncologist at the time suggested that maybe, just maybe we could look into coming off them or at least lowering the dosage if the treatment goes well. 

The treatment has greatly reduced the cancer and as the cancer made my blood clot I, as a lay person, reasoned that now that the cancer is reduced surely the risk of my blood clotting again is also reduced. Therefore, I asked for an appointment with the haematology team to check on this. 

I finally got the appointment 5 (!!!) months after that consultation. 

The consultant was really friendly and interested and after a thorough consideration suggested to come off the blood thinners immediately and completely. 

Now, I was and still am super happy about that. But there is this narky little voice saying two things:

1. If I had the appointment earlier I would be off the blood thinners for weeks or months by now. Surely every medication you take has also some sort of side effects and/or is an additional strain to your body.
2. I was the one pushing for this appointment. My original - and brilliant - oncologist left over a year ago and I am on oncologist number 4 now, number 3 and 4 I have never even met -they are distant voices over the phone during a consultation. Nobody questioned if we could change the meds or even come off it. If it wasn’t for me pushing/ questioning things again I would be happily (well, not really) popping those blood thinners twice a day. Surely it shouldn’t be down to the patient to initiate important changes regarding their mediation?!?!?