This is based on my experiences whilst being treated by the UK NHS as both in-patient and outpatient. My treatment has been mainly under gastroenterologists but I also encounter haematologists, hepatologists, colorectal and upper GI surgeons. The dynamics described here may be different if you are funding your healthcare privately. I’ve used a couple of my own experiences to illustrate my points.
With the NHS coming under increased pressure from ever rising demand, I believe that we can, as patients, help to make a difference by using the resources available to us as efficiently as possible. These resources include our consultant’s time, tests, procedures, etc.
I work on the principle that :
I AM THE EXPERT IN MY HEALTH
MY CONSULTANT IS THE EXPERT IN MY CONDITION
…and by “my health” I mean both physical and mental well being and the effect my conditions have on QOL, work and chosen lifestyle.
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 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 though not incurable) 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 a 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.
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 I would like 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 them all.
(This assumes a face-to-face meeting, not one of those rather impersonal tele-appointments).
It is worth noting down the answers, although these should be covered in the follow-up letter that arrives a few days later (or rather SHOULD arrive – more about that in a minute). Another advantage of having a paper list is that if you, at some point, 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 with the appointment letter in your hand. The other one says they will contact you closer to the time but there is always a 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’ it used to be between 3 and 6 weeks to get an appointment with a particular consultant or to book up for a procedure, such as an endoscopy, but I fear this has now become extended. (With COVID19 these waiting times have gone out of the window)
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 use 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 who fully understood my case.
Seeing your chosen doctor won’t always be possible but so far, in 9 years, I’ve only had one gastro appointment when I was seen by someone else.
I have found the best approach is to explain to the nurse running the clinic that you wish to see a particular consultant and ask them to put a note to that effect on the front of your file (and make sure it gets put on the right pile). Sometimes you may still end up being called in by the “wrong” doctor. At this point I politely explain that I’m not doubting their medical ability but I do need to see my “normal” doctor. This has usually worked.
For routine, follow-up appointments, where no important decisions need to be made, I’m happy to see any of the doctors. I do question whether this type of appointment needs a visit to a hospiral and would be quite happy to do it by Skype, FaceTime or even an old fashioned telephone call. The only advantage of the face-to-face contact, that I can think of, is the doctor may spot something in your appearance or demeanour that you haven’t noticed or they might want to carry out a physical examination.
4) Medical History
If you’ve only been affected by a single condition, or may have been recently diagnosed, then it’s likely that you will remember all the key dates and events and be able to reel them off. This will help if you have to see new doctors or consultants.
If you’ve always been treated by the same hospital then your medical notes should be available to any of the professionals via their records system but if you’ve moved around between hospitals and health authorities it becomes more difficult. (If only we had a universal record system in the NHS. Has been tried and failed!). Likewise if you have multiple conditions or have a long history of treatment thennremembering the details can prove impossible.
It’s worth keeping a list of the important dates and medication changes with you in case you are seen by a new doctor and can save them having to wade through pages of notes (if available). If you are unfortunate enough to get admitted to A&E then a brief outline of your history may speed up the start of your treatment and prevent you being re-investigated for issues that have already been “parked”.
|35 years of medical records|
I have taken the concept further. I found the necessary forms online, and obtained full sets of my medical records from the three Health Authorities I have been treated under.
Since then I’ve painstakingly, some would say anally, extracted all the key points from consultation notes and follow-up letters. Initially in the form of a simple list of dates but that didn’t really convey the history of some complex co-morbidities. Ideally I needed to be able to represent 40+ years of medical history onto a single sheet of A4. That’s when I came up with the idea compressing it into a diagram. The detail is beyond the scope of this piece so there’s a post written about its evolution. This link will open a new window showing how it was done.
5) Contacting your consultant between appointments
There may be a dedicated, condition specific, helpline that you can use as the first point of contact but some consultants are happy for you to email them directly when you have a query or a problem. It really does seem to vary. Many hospital websites now clearly display the consultants contact details but I have read of other patient’s experiences where the “patient confidentiality card” is played to avoid email contact.
This doesn’t come without responsibility from the patient’s side. I make sure that I only contact the consultants directly if there is something urgent; or only they can answer; or they’ve asked me to report back about a problem/test result. During 2012/3, whilst being treated by three different disciplines, 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. The doctor performing the procedure was not aware that she needed to use a blood thinner to get usable samples (which is why I was having the second biopsy). I was able to show her, on my phone, the email trail that explained it all. She subsequently asked for a copy so it could be added to my file.
6) Follow-up letters
Shortly after an appointment your consultant usually writes 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 health and a copy should also be sent to you, with the caveat that it is a communication between medical professionals.
Often they will simply state that the patient was seen in clinic, they’re doing fine and will be seen again in 12 month’s time but there will be times where they record a change in condition and the proposed next steps in treatment.
The system of follow-up letters has usually worked smoothly for me but one department let the side down. 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 and promises. In the end I emailed the head of department, explaining the situation, and suddenly I had four, retrospectively written, follow-up letters. In the meantime there were a couple of occasions when the lack of up-to-date information on my file could have lead to a wasted appointment or procedure (bone marrow biopsy!)
Are there lessons to be learned? I think so.
Lesson 1 – 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.
Lesson 2 – 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 get a solution.
7) Manage Your Appointments 2 – er, 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 appontment with the aforementioned department when things started to go 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. Had I let him continue we would have wasted the appointment. Things were not going well as I had a clear idea of the outcome I was expecting and the information, areas, risk factors we needed to discuss to arrive there.
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 was unlikely to 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 reviewed my case at a recent MDM. I ended up with the decision I had been expecting.
It helps to have a clear idea of what you want to get from an appointment – a preferred outcome – and the things you need to discuss to get there.
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 over an hour to be seen; the phlebotomist has made several attempts at finding a vein; or 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 a 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.