By Nigel Horwood
Nigel guest blogs regularly for Bowel Research UK, and is an active participant in Bowel Research UK’s People and Research Together (PART) network.
There was a period when I seemed to have an outpatient appointment every other week to talk blood, digestive system or liver and, occasionally, surgery. At the end of this very intense period I realised that there were some things that had helped manage these appointments and I’ve used them ever since. What follows is based on my experience as a long-term Crohn’s patient navigating the NHS system.
For old hands at the “health game” most of what follows will probably seem blindingly obvious so it’s aimed at newer patients, ones that may become tongue tied in front of their consultant or that find appointments difficult to handle. This is written based on face-to-face encounters rather than tele-appointments which now account for around 50% of consultations.
Continuity of Consultants
I like to see the same consultant each time so there is continuity in approach and it is not necessary for them to go through my whole medical history before starting the consultation. At first, I didn’t use to question it when I was seen by different registrars but as my health worsened, I felt it was important to see the person who fully understood my case. (It turns out seeing the same doctor has clear health benefits, and indeed the BMJ published a research review which found that consistently seeing the same doctor is associated with a lower risk of death.)
When I get to the clinic I check to see if my particular consultant is in that day and then ask for a note to be put on the front of my file saying that I wish to see them. Sometimes I have ended up being called in by the “wrong” doctor at which point I politely explain that I’m not doubting their medical ability but I have asked to see a specific person. It won’t always be possible but, in 11 years, I’ve only had the odd occasion when I have been seen by someone else, usually because “my” consultant was jetting off to some conference on the other side of the world!
I relax the rule for routine, follow-up appointments, where no important decisions need to be made. Then I’m happy to see any of the doctors or swap to a tele-appointment. The advantage of face-to-face encounters is that the doctor may spot something in your appearance or demeanour that you haven’t noticed and want to carry out a physical examination.
Making A List
I used to go into the consulting room with the attitude “of course I’ll remember all the things I want to ask”. It was probably a male arrogance thing. I’d arrive home and my wife would say “…did you ask about x?” Blank stare. “Why didn’t you write a list?” Another blank stare. This went on for many years until the penny finally dropped. Male arrogance is a long-term condition, though not incurable. Nowadays I start preparing the list several days before the appointment. Once I’ve written it out I talk it through with my wife to see if I have missed anything off or there is something she wishes to ask.
I print out the list and make a point of having it in my hand as I enter the consulting room. After the initial pleasantries I explain that there are a number of questions that I would like to get answers to during the appointment.
It is worth noting down the responses, although these should be covered in the follow-up letter that arrives a few days later (more about follow-up letters, or lack of, in the second part of this post). Another advantage of having a paper list is that if you, at some point, become emotional or find it difficult to speak, you can hand it over and let the doctor work their way through it whilst you compose yourself.
If I could only give one tip this would be the one.
Manage Your Appointments
If your particular hospital runs like a well-oiled machine or your consultant has a very efficient administrator then this may not be necessary. I get treated by two different departments in the same hospital. One of them makes the next appointment there and then so that you leave with the date set. The other says that they will contact you closer to the time but I worry about the possibility of the request getting lost somewhere in the system.
I set a reminder in my calendar, two months before the appointment is due, to contact the department to ask if it has been booked. This has worked well and two months was the right lead time for that particular department but with COVID19 these waiting times have gone out of the window. Nowadays I use my bi-monthly trips to the IBD infusion unit to check that the necessary requests are on the system for appointments and procedures.
It may be worthwhile having a blood test (and possibly a calprotectin test) two or three weeks before your appointment so you are able to discuss the latest results with your doctor. I accept this may sometimes be difficult to arrange as there will need to be a request form on the system before these are carried out.
Manage Your Appointments 2
Haven’t we already done this one? Yes, but this is managing how the actual appointment goes.
Let me explain what triggered this. I had an appointment when things started to go wrong. My usual consultant wasn’t available so I was being seen by a new doctor. There had been a lack of follow-up letters from four previous appointments which meant that he started discussing a subject that had been “parked” a year previously. Had I let him continue we would have wasted both our times. Things were not going well.
Clearly my issue wasn’t with the new doctor as he had simply referred to the latest notes. I asked to see the Head of Department, knowing that this was unlikely to happen, but one of the senior consultants did appear. She had reviewed my case at a recent MDM and was able to steer the appointment back on track.
When I entered the consulting room I had a clear idea of the outcome I was after and the information we needed to get there. (In this instance it was the decision not to start blood thinners.) If you know where you want to get to then it makes it a lot easier if things start to go awry. Nowadays I go into every appointment with a clear idea of what would constitute a “successful” consultation.
All the above have served me well over the last decade. A lot, of course, depends upon the relationship with your HCPs. A while ago I was asked to sum it up. Simply put it is:
I am the expert in my health.
My consultant is the expert in my condition.