Should Consultant Appointments be Treated Like Business Meetings?

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.

Hypermobility Syndrome

When Ram was younger he used to hate shopping and as soon as we got into a shop he would lay down on the floor. I always thought it was to do with the autistic side of things, but eventually we realised that there was more to it than that. When he was nine we consulted with a physiotherapist and found out that Ram had hypermobility syndrome which is a condition where the joints are more lax, causing pain and fatigue.

That is when we started using a buggy which turned out to be a life saver is so many ways. Many health professionals don't like children in wheelchairs or buggies as to them it 'makes' them disabled, but our experience was far from that. It gave us a new freedom as it meant that we could go further and faster, knowing that at any time Ram could rest comfortably. It also addressed his autistic side as it meant with the sun shade down no one would talk to him!

However, once puberty hit his hypermobility became worse, something that we had heard about. As the tendons in the joints are weaker than normal, the muscles have to work harder to keep things in place, which can lead to tiredness, especially after a day of activity. The idea is that people should pace themselves, but try telling that to a boy!

Basically, Ram's feet don't just hurt when he is walking but even just standing cleaning his teeth. Various joints feel like they will sublux if he is not careful, and any amount of activity will have him exhausted for a few days afterwards. This means that we have to space activities, so if the Dxh comes on Saturday, we have to keep Sunday and preferably Monday too clear to rest. And two days are needed after a home ed robotics meeting, even though now that they are teens they spend most of the time 'loitering without tent'. You know, the opposite of loitering with intent.

We had got used to this, and took it all in our stride. He does have exercises which are very hard to get him to do because of his oppositional side, but we were coping. However, in the last six months it had got a lot worse. He was feeling dizzy not just when standing up quickly, but when laughing, something we do a lot around here. He was also showing extreme fatigue. Some days hardly being able to walk. In fact after one robotics outing to the regional heats of The Big Bang Fair when he got home he had to crawl from the sofa to the kitchen to eat dinner!

So we finally bit the bullet and went to see the GP. First time in 10 years! But I will save that story for tomorrow.