We recently had an appointment with an consultant orthopaedic surgeon to discuss my son's longstanding (not sure if that pun is intended or not!) foot pain. At least that is what I thought it was for.
He did indeed take a comprehensive series of x-rays, the first Ram has had in his life (he is now 17) which showed no structural abnormality.
The consultant was good in that he showed us the x-rays, explained where all the bones were and said that as there was nothing there that could be causing pain, it is likely that his pain is caused by fat pad atrophy. That bit makes sense, because Ram has so much pain in his feet when he puts pressure on them, it makes sense that the fat pads on his feet are no longer right.
But that was not quite how it came out in the consultant's letter. You have to bare in mind that this letter is sent to our GP who originally referred us, not to us. I have no idea if the consultant even realises that I get a copy of all correspondence. So it is important that the letter reflect what happened in the appointment.
First off the actual wording of the letter is “Diagnosis: Pain in both feet, probably due to fat pad atrophy secondary to long standing disuse.” Then he goes on to say, “The history is somewhat unusual in that his parents report that from a very young age (around the age of 3) he appeared to not like walking and therefore took to putting him in a buggy out of doors.” Nope. We didn't even own a buggy! Living in the countryside with no pavements there wasn't much use for one. Once Ram grew out of the backpack he had no choice but to walk everywhere. We didn't start using a buggy until he was 8, and even then Ram was very active swimming, climbing, trampolining and tricycling after that. It was only when he hit puberty that the fatigue set in and he slowly lost all his fitness.
But secondly, and perhaps more bizarrely, he said, “He is currently understood by his parents to be on the autistic spectrum disorder. In clinic today I found him to be articulate and did not obviously fall on the autistic spectrum disorder although I will admit that I am not expert in such matters.”
Hmmmm...we were not seeking an opinion on whether or not our son is on the Autistic Spectrum and if we were, we wouldn't have gone to an orthopaedic surgeon! By his own admission he is not an expert, so why even mention it when it wasn't on the agenda.
Oh. Agenda? But there wasn't one! At least not a written one. I suspect there is possibly a hidden one, perhaps our GP made some comment in his referral letter that lead the consultant to think that the parents have made up all this stuff about their son. Or maybe the GP just mentioned it as a way of warning the consultant that this young man will show up wearing a strange hat and have a stim that involves spinning the cord of his hoodie.
And the report? Serious inaccuracies which have already be distributed to the GP and physiotherapist. How does this leave us as parents feeling? We feel that we have not been listened to, that the judgements were made before we even got to the appointment or at the very least within the first few minutes, and that we are not partners in our son's health matters.
So how can this be avoided? I got to thinking about various business meetings that I have been involved with. There seems to be two types, those that have someone taking the minutes; they are typed up, distributed for comment, then officially agreed at or before the next meeting. The other type is where the minutes are prepared as the meeting happens, being agreed on the spot.
If I had produced minutes that were that wrong, or if I was charing a meeting that strayed from the agenda, I wouldn't last as a chair for very long. So why should consultants get away with it?
Maybe it is time for appointments with consultants to become more like business meetings where there is an agenda, where people's contributions are valued, where minutes are agreed before they are distributed, and where people feel listened to.
As for our situation just now, our consultant will have a two page letter hitting his desk next week copied in to our GP and physio, telling him just what he got wrong in his letter, explaining a little more about ASD, and containing some of the history that he didn't bother to take in the appointment. Maybe next time he will be more careful and treat the parents of his patients more like business partners and less like bystanders.
4 comments:
Abbie
I expect that many many patients have the same agenda and minutes, problem that you so eloquently describe. And I also expect that very few patients have corrected their consultant's mistaken assumptions. And, now you have made me feel guilty now that I have missed opportunities to write the sort of letter you are going to send your consultant.
Your idea of treating a consultation like a business meeting, with agenda and minutes, is great.
Part of the reason letters from consultant to GP are poorly structured and leave out key details, or get them wrong, is that the letters are typically dictated in a great hurry, typed by a poorly paid secretary, and then posted without being checked by the consultant.
One consultant I have been fortunate to see a few times addresses his letters to me, with a copy to the GP, and dictates it while I am listening so I can correct any mistakes there and then.
The biggest problem however is the consultant's mistaken assumptions, preconceived ideas, and inability to understand your concerns and then incorporate them into a shared decision-making process.
Setting the agenda, and agreeing the minutes will be a big nudge in the right direction. An even bigger nudge would be a letter from the patient (or parents) to their consultant, copied to their GP.
Another approach, which could be used as well, is to leave a rating on a website such as:
http://en.wikipedia.org/wiki/IWantGreatCare
Some doctors are very opposed to such sites, as there have been abuses that doctors find hurtful and difficult to respond to. But other doctors routinely ask their patients to make an honest rating on the site. Why don't you suggest this to your consultant? Or, even better, to the chief executive of the hospital that employs him.
I presume that Barn School Banter will let us know the response you get.
Best of luck. I am sure your letter will provoke a response.
I hope other patients and parents of patients follow your example.
Thank you for your comment Michael. You are right that one of the biggest problems is the consultant's mistaken assumptions ad preconceived ideas. I can forgive typographic and structure mistakes. In fact the letter came with "Dictated by XXX but unsigned to avoid delay" which I have no problem with. A one week turn around for a response from a consultant is pretty good! But material inaccuracies are not acceptable.
I hope that this will encourage more people to try to correct this problem, both at the level of patients correcting their notes, as well as chief executives and management and the consultants themselves. And yes, I will report what response I get when I get one.
I think that when you have an autistic child it sadly becomes the norm to have to correct letters,a lack of understanding of both autism and home education is still prevelant and biased opinions rather than fact often creep in. Sadly the letters are then circulated to other professionals so the myth perpetuates itself!
From my experience of meetings, there are the public sector and private sector.
In the public sector, meetings are attended as a duty and minuted to record who said what to ensure that views are expressed. It is usually the the most junior member who is delegated to taking the minutes, which makes a statement about how important they are considered. It is rare for actions to be assigned and it is usual or at least common for 'defer' to be closest to an action word.
Conversely in the private sector, meetings are to establish actions and there often a slight tussle as to who will write up the actions, as he who wields the pen(keyboard?) had the power to determine what the outcome actually was. It is in your interest to attend these meetings as otherwise you will find that you are the one with all the actions.
But these slightly sarcastic comments aside I am sure it is in patients' interest to treat appointments as business meetings by which I mean:
* prepare
* research
* write out your agenda
* write out your goals. What do you want to come away with
* establish actions. This can mean asking the consultant, and what are you going to do next?
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