What follows is based on my experience being treated by the UK NHS as both an in-patient and an outpatient, mainly with gastroenterologists but more recently haematologists and hepatologists as well. The dynamics described may be different where you are funding your healthcare privately and paying a consultant directly or via an insurance company.
If this post seems rather analytical and cold, with few emotional considerations, it is because I have found this “matter of fact” approach has made the Crohn’s, other minor annoyances such as PVT, potential PSC, BAM, hospital stays and consultants, a lot easier to deal with.
I thought long and hard about how I could encapsulate my attitude in the length of a Tweet and came up with this :
I AM THE EXPERT IN MY HEALTH
MY CONSULTANT IS THE EXPERT IN MY CONDITION
For old hands at the “health game” most of this will probably seem blindingly obvious so it’s aimed at newer patients, ones that become tongue tied in front of their consultant or that find appointments difficult to handle.
1) Making Lists – Definitely in the “blindingly obvious” category. This has to be the best thing I’ve ever started doing. 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 a male arrogance thing. I’d then arrive home and my wife would say “and what about x?” Blank stare. “Why didn’t you write a list?” Another blank stare. This went on for many years (male arrogance is a long term condition) until the penny finally dropped. Nowadays I start preparing a list several days before the appointment date. (The one shown below was compiled in preparation for seeing the haematologist prior to weighing up the advantages/disadvantages of starting Warfarin).
Once you’ve written it out talk it through with someone close to you as they may have spotted things in your appearance or behaviour that they are concerned about but “didn’t like to mention” or didn’t think were significant.
Nowadays, I print out the list and make a point of having it in my hand as I enter the consulting room and after the initial pleasantries explain that there are a number of questions I want to get answered and point to the list. This sets the scene for what follows i.e. don’t expect to finish this consultation until we’ve been through it all.
It is worth noting down the answers, although these should be covered in the follow-up letter that you get sent a few days later. (Or rather SHOULD be sent – more about that further on). Another advantage of having a paper list is that if you print it, or write it out nice and legibly, and then become emotional or tongue tied you can hand it over and let the doctor work their way through it.
2) Manage Your Appointments – This may or may not be necessary depending upon how your hospital works. I get treated by two different departments in the same hospital. One of them will make the next appointment for you there and then so that you leave the hospital with the appointment letter in your hand. The other department says they will contact you closer to the time but there is always that doubt at the back of my mind that the request will get lost somewhere in the system and by the time I realise there’s a problem the appointment gets delayed.
Nowadays I set a reminder in my calendar, two months before the appointment is due, to contact the consultant’s secretary just to remind them and that does the trick. Two months is the right length of time for me but it may differ in your area. For Guys and St.Thomas’ (GSTT) it’s usually between 3 and 6 weeks to get an appointment with a particular consultant or to book up for a procedure such as an endoscopy.
3) Continuity – Generally 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. I didn’t used to question it when I was seen by different registrars or junior doctors but as my health worsened I really felt it could become a matter of life or death (maybe slightly over dramatic!) that I saw the person with the most experience/expertise and who understood my case.
The best way to approach this is to tell the nurse that weighs you that you need to see a particular consultant and they can then put a note to that effect on the front of your file or make sure your notes get put in the right pile. Occasionally it doesn’t work and you end up being called in by another doctor. At that point I politely explain that I’m not doubting their medical knowledge but I do need to see my usual doctor. This has always worked OK.
All the above goes out the window if I’m just having a routine, follow-up appointment where no important decisions need to be made. If that’s the case I’m happy to see any of the doctors. I do actually question whether this type of appointment has any value and would be quite happy to do it by email, Skype or even an old fashioned telephone call. The only advantage of the face-to-face contact that I can think of is the doctor being able to spot something of concern that you haven’t noticed or the ability to carry out a physical examination.
4) Medical History – important if you are seeing new doctors or consultants. If you’ve only been suffering from Crohn’s, or whatever disease you’ve got, for a short period then it’s likely that you can remember all the key dates and events that have brought you to this particular appointment.
If you’ve always been treated by the same hospital then your medical history should be available to any of the professionals treating you via their records system but if you’ve moved around between hospitals, health authorities and consultants then it is likely that there won’t be one single, unified set of records.
When moving to a new consultant and/or hospital, or if you are unfortunate to have been admitted to a new hospital as an emergency, possibly unconscious, then a brief outline of your history can save a lot of time in the early stages of working out what has gone wrong or which will be the best area to start investigations or treatment.
|35 years of medical records|
[For years I was always being asked when was my first Crohn’s operation and what exactly the surgeon did at that time. I knew it was an emergency admission to Croydon General Hospital sometime in 1979 (suspected appendicitis) and that it turned out to be a perforated bowel, but I couldn’t say whether any gut had been removed or if it had simply been repaired. It was only in 2011, when I obtained copies of all my medical records from Croydon Health Authority that I could finally give the definitive answer.
Since then I’ve painstakingly, some would say anally, extracted all the key points from consultation notes and follow-up letters and summarised the whole lot, in date order, onto a spreadsheet. This is my “back-up” evidence from which I have then drawn up a simple, one page chart representing my full Crohn’s history and a second, more detailed one, covering the last 6 years. My current set of consultants seem to approve of this approach and have put copies into my notes.
Unfortunately very few x-rays were still available but I consoled myself with a couple of more recent CT scans which I can view using Osiri-X Lite (available as a free download). I find them fascinating but my work colleagues are not quite so sure.]
|Maybe a step too far! Scenes from CT scans on my ‘phone|
5) Contacting your consultant between appointments – Some consultants are happy for you to email them directly when you have a query or a problem or there may be a dedicated, condition specific, helpline that you can use as the first point of contact. It really does seem to vary. I have read of other patient’s experiences where the “patient confidentiality card” is played to avoid email contact. I’ve never come up against this. So far so good. You should be able to work out an individual email address as organisations like to follow a particular format or you could simply ring up their secretary and ask for it straight out. Nowadays many hospital websites clearly display the consultants contact details.
This doesn’t come without some responsibility from the patient’s side. I make sure that I only contact the consultants directly if I have something that is urgent and only they can answer or they’ve asked me to report back about a problem. I was being treated by three different specialities during 2012/3 so I usually copied any emails to all three consultants as it helped to maintain the co-ordinated care.
It is worth keeping copies of the emails as I found out when I went to have a second bone marrow biopsy and the doctor performing the procedure was not aware that she needed to use a blood thinner to get usable samples (which is why the second biopsy was required). I was able to show her, on my phone, the email trail that explained it all after the previous biopsy.
6) Follow-up letters – shortly after an appointment or procedure your consultant should write a letter to your GP – secondary care provider to primary care provider. These letters are important to keep your GP up-to-date with your condition and a copy should also be sent to you, normally with a caveat that it is a communication between medical professionals.
This system of follow-up letters has always worked smoothly for me with gastroenterology and hepatology issuing them a couple of days after the appointment but then I came up against Haematology. The appointments were fine. Lots of good, open discussion but no follow-up letters. Four appointments and no follow-up letters. I did query this a number of times but still no letters, just apologies.
A few months on and guess what, still no follow-up letters. In the end I looked at my hospital’s website and found the name and email address of Haematology’s head of department. I contacted her, explaining the situation and suddenly I had four, retrospectively written, follow-up letters.
Are there lessons to be learned? I think so.
Lesson 1 – If you are not getting the service you should expect then go to the top and explain the problem. Will this always work? No, but might at least set the wheels in motion to getting a solution.
Lesson 2 – Keeping your own record of what gets discussed and agreed during a consultation is worthwhile if you end up in a similar situation to the above. I use a blog to record what goes on but if you don’t want to share your experiences with others then keep your own private health diary for future reference.
7) Manage Your Appointments 2 – er, haven’t we already done this one? Yes, but this is managing how the actual appointment goes. I’ve left this one almost until the last as it’s fairly new territory for me. I hope to develop the theme in the future to reinforce the notion that the patient should actively manage how the appointment goes and make best use of the resources available i.e. your consultant’s experience and advice.
This train of thought was triggered by a visit to, yes you guessed, Haematology when things started to go very wrong. My usual consultant wasn’t available so I was being seen by a new doctor. The lack of follow-up letters meant that he started discussing a subject that had been “parked” a year previously.
At that point it struck me that going into the appointment I had a very clear idea of the outcome I was expecting and of the information/areas/risk factors we needed to discuss to arrive at a conclusion. (The decision was whether to start Warfarin or not). Clearly my issue wasn’t with the new doctor, as he had simply referred to the latest notes, so I asked to see the Head of Department. I knew this would never happen, but at least it had the effect of getting the appointment back on track with the appearance of one of the senior consultants who had been a party to reviewing my case at a recent MDM (multi-disciplinary meeting). I ended up with the decision I had been expecting.
I’m wondering if it would be worthwhile starting the next appointment by explaining where I want to be the end of the appointment and how I see us getting there. Would that be too pushy?
8) and finally – as always – keep a sense of humour if you can – useful in surviving ALL medical encounters but I accept this is not easy if you feel really terrible; you’ve been waiting an hour to be seen; the phlebotomist has made several attempts at finding a vein; that person who arrived after you has just been called in before you; etc. – I’m sure we’ve all been there.
Sometimes humour doesn’t work. A few of the doctors I have met do seem to have had a “humour bypass” (I’d just like to make it clear that this doesn’t apply to any of the fine doctors who are treating me at Guys and St.Thomas’, especially the ones that drive the endoscopes or biopsy needles). I have however been left in the situation in other, lesser establishments where my witty remark has gone down like a lead balloon and I’m left staring at a doctor who is clearly thinking “should he be in the psychiatric ward?”.
..and remember if you’ve been kept waiting longer than you were expecting it’s probably because your consultant has spent more time with preceding patients than the allotted 10 minutes. This works both ways. You may also need more than your ten minutes.