Wednesday, February 04, 2009

Diagnosis, what diagnosis?

Early mornings and a bendy body do not mix so I was not thrilled to realise I'd forgotten to change my rheumatology appointment and so had to be at the hospital for 8.50am this morning. I was even less happy when I arrived to find that someone in their infinite wisdom had allocated the most distant clinic to a group of patients likely to have mobility issues. Tripping over a nurse on my way in was all my fault though!

A few days after I moved I went to Leeds for my appointment with the extra special bendy people Professor so I'd already been able to discuss most of the issues I had concerns about whilst I was there, and any not dealt with were because I forgot about them. Despite taking a list. It was the usual mix of the bizarre and sublime as it always is when seeing 'The Prof'. Lying on an examination couch in one's knickers with legs wrapped around the back of your head might be considered strange in some circles but is absolutely normal in bendy circles. As are discussions about 'smarties' Ssshh, don't talk too loudly, even in private as that means cannabis which seems to be much more dangerous of late. Couldn't have anything to do with £80 on the spot fines could it?

So, today's appointment was routine which considering I was barely awake was a good thing. I saw the same consultant as last time which is not always the case, especially when it's a consultant you might want to see again! In a typical medical and therefore non government approved fashion 'The Prof' and the locum consultant (LC) had been at a meeting together and had a chat there about my condition. LC had previously expressed concern at the severity of my symptoms and seemed relieved to hear that 'The Prof' had (once again) told me that I'm one of the most severely hypermobile people they've ever honour which quite frankly I'd happily give away to one of the (many) very mildly affected people who moan about how terrible the pain is from the one dislocation they might have experienced 3 years ago along with the ability to dislocate 3 times in as many seconds. takers? Anyone...anyone...Bueller? The funny thing is that no matter how many times I'm told this kind of thing I just can't see it in myself. The default thought process of 'there's nothing wrong, you're just lazy etc' resulting from being mislabelled as an attention seeking hypochondriac always kicks in and I wonder if that will ever change.

Whilst I was waiting to see LC two second year medical students sat down near me. They were talking about how they hoped they'd be together in clinic and generally about their own health. The girls got their wish and were able to observe my appointment. LC asked me not to tell the students what condition I had and instructed them to examine my hands. They had to be told (by both LC and the nurse) to make sure they used alcohol gel before they touched me. Examining a hand each it was immediately obvious they were both out of their depth. Whilst LC was reading the letter I'd brought with me from 'The Prof' the students were looking more and more bewildered. I told one not to be distracted by the swelling she could feel around some of my finger joints but it didn't seem to help. Eventually I asked them to think about what rheumatological conditions there were and try to rule them out one by one. Unfortunately they didn't know of any conditions apart from arthritis and lupus, neither of which were they confident of the symptoms anyway. One of the students did manage to say she thought my fingers were 'loose' and moved very easily, but even after I'd told them to look at the other joints too they still were unsure. Whilst I wouldn't expect them to know about Ehlers Danlos Syndrome I was horrified at the low level of their knowledge. LC instructed them to look at my eyes and describe what they saw. After much leading, including my putting a piece of white paper up next to my eye for comparison the best they could come up with was that the whites of my eyes looked a bit grey. LC asked them if they'd done paediatrics yet and to tell him what condition caused blue sclerae in children. Shockingly they didn't recognise the word sclerae, and nor had they ever heard of Ostegenesis Imperfecta. One girl was rather well endowed, and as she leant over me to examine my hand I was treated to a view of her impressive assets and black lacey bra all the way down to her tummy. I predict the rate of heart attacks going through the roof and greatly increased morale amongst certain patient groups when she gets to the wards!

I don't know what kind of knowledge level second year medical students are expected to have, so if any of the medical professionals who read here would like to comment that would be very helpful. I was left with the impression that not only was their medical knowledge lacking, but that their general knowledge was very weak and they seemed to have no idea about how to go about the process of making a diagnosis/examining a patient. They were lovely girls, and didn't seem to lack intelligence so if this is a result of the changes to medial education made in recent years then the government have acheived their aimsthe future of medical provision in the UK does not look good.


Fire Byrd said...

One can only hope that by the time they qualify that they have gained more knowledge!!
Must make you feel so special being a guinea pig????

david cameron's forehead said...

Surely if they are intelligent & curious they will make the effort to go & find out about the work they are doing, formal education or no.

This strikes me as more a reflection of not reading & general hostility to intellectual pursuits which has been fostered by the "culture" for several decades.

I am quite impatient with people who blame schools, universities et al for their ignorance. No one stops them self-learning, if they care, which perhaps they don't.

Daphne said...

I work with second year medical students in the area of communication skills. They don't have a lot of medical knowledge at that stage - the course is five years of course - and there is a tremendous amount to cover. Even so, I often find them lacking in the general knowledge that intelligent non-medical people know. I must say they often - though not always - have excellent communication skills and these are vital.

Casdok said...

This is why we end up the experts!

Mr. Nighttime said...

While it is not unusual for second-year med students not to have a ton of knowledge, especially when it comes to esoteric diseases and conditions that they may have never encountered, not knowing the term 'sclerae" is inexcusable. They should have learned that in a basic anatomy and physiology course that they took in their undergrad studies.

Sounds as though they weren't paying close attention in class. To be sure if that happened here, they would be taken to task over it.

I used to have med students from time-to-time ride with me on the ambulance. They thought they were hot stuff, and knew more than I did - until their first cardiac arrest that they encountered with me. More often than not, they would make the wrong decisions regarding what intervention needed to be done, and they got a good lesson in learning to listen when the paramedics tell them to do something.

Ah, I miss those days sometimes.

LceeL said...

The only hope for EDS people lies in gene research and gene therapies. I hope they come in time to help you, Bendy, you and my Annie both.

Anonymous said...

While I really ought to be concerned about the future of our health service and shocked at these ladies' ignorance, I'm afraid I can think of no more than the well-endowed girl's cleavage - and your good fortune to witness it. It would certainly be enough to lift my spirits on a trip to hospital. In fact it's lifted my spirits and I'm just sitting at home.

qw88nb88 said...


I have a question regarding getting a diagnosis, and yes, I realise that you’re “just a patient”; I’m just asking for ideas. But I would appreciate your input on the question posted here.