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.
Part one of this two-part blog series was about attending appointments. This second article covers the information that helps inform decisions and makes communication easier.
After an appointment, your consultant should write a letter to your GP – secondary care to primary care. 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. (Some hospitals have now swapped this around by writing to the patient and copying the GP in.)
The letters should explain what was discussed during the appointment, list any follow-up actions and any changes to your medication. This latter point is important to ensure that your GP is aware of any new items to be added to your prescription.
If you have received a letter starting with “It was a pleasure to see this very pleasant x year old patient…” don’t think you’ve been singled out. This used to be a standard introduction but is now changing. I’ve noticed that recent letters, from all disciplines, follow a set pattern which I’m guessing is due to the introduction of the eNotes system.
Issuing follow-up letters had usually worked smoothly but one department let the side down. The appointments were fine. Lots of good, open discussion but no follow-up letters. After four appointments – nothing. I queried this a number of times but to no avail, just apologies and promises. In the end, I emailed the head of the department one Sunday evening, explaining the situation and was amazed to receive a reply, a few minutes later, saying that she would deal with the matter. A few days later I had four, retrospectively written, follow-up letters which accurately reflected the appointments so clearly the notes were on file somewhere but had not been translated into letters.
There were a couple of occasions when the lack of up-to-date information on my file could have led to a wasted appointment or procedure. Are there lessons to be learned? I think so.
Lesson 1 – Keep your own record of what gets discussed and agreed during a consultation as it will be invaluable if the follow-up letter never arrives.
Lesson 2 – If you are not getting the service you would expect, then go to the top and explain the problem. Will this always work? No, but it may set some wheels in motion that will get you a solution.
If you are recently diagnosed it is likely that you can remember key dates and events in your medical history. If you’ve always been treated by the same hospital your complete medical notes should be available to any of the health care professionals with access to the records system but if you’ve moved around between hospitals and health authorities it becomes more difficult. Similarly, if you have multiple conditions or have a long history of treatment then remembering the details can prove impossible.
One question I kept being asked was “what exactly did they do when you had emergency surgery in 1979?”. All I knew was suspected appendicitis turned out to be a perforated bowel. In 2015 I decided to try and find a definitive answer by requesting full sets of my medical notes from the three health authorities I had been treated by. (The request forms you need are available online).
The notes arrived in a mixture of CDs and paper copies going all the way back to 1977, pre-diagnosis of Crohn’s. I trawled through them, extracting a list of important dates and medication changes then, to try and make some sense of it all I drew them up into a logical diagram. (Some may question “logical”).
When I was unfortunate enough to end up in A&E one night I handed the outline of my medical history to the registrar. He was impressed. It allowed my treatment to start sooner as it explained why some of the blood test results were abnormal, and prevented them being re-investigated. Nowadays I use the diagram whenever meeting a new doctor as it gives them a quick overview of the patient sitting before them – physically and mentally.
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. It does seem to vary. Many hospital websites now clearly display the consultants’ contact details but I have heard of other patients’ experiences where the “confidentiality card” is played to avoid email contact.
Having this access puts the onus on the patient to use it responsibly. I only make contact directly if there is something urgent that only they can answer or I’ve been asked to report back about a problem or test result. During 2012/3, whilst being treated by three different disciplines, I copied any emails to all three consultants as it helped to maintain the co-ordinated care.
It is worth keeping the relevant emails on your smartphone if you use one, as I discovered when I went to have a second bone marrow biopsy. The doctor performing the procedure was unaware that she needed to use a blood thinner to get good aspirate samples (which is why I was having the second biopsy). I was able to show her the email trail that explained it all and, as a result, the second procedure was successful.
Try to keep a sense of humour, if you can. Useful in surviving ALL medical encounters but I accept this is not easy if you feel terrible; you’ve been waiting over an hour to be seen; the phlebotomist has made several attempts at finding a vein; and that person who arrived just after you has been called in before you; etc. – I’m sure we’ve all been there.
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 ten minutes. This works both ways. You may also need more than your ten minutes one day. I try to be a patient patient.
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