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Being a ‘test patient’ – Caroline Towler

Posted By HMSA Social Media Coordinator, April 6, 2018

Being a ‘test patient’ – Caroline Towler describes her experience of helping to educate medical students about EDS.

My name is Caroline Towler. I have Ehlers-Danlos syndrome classical type, and many of the other conditions that go alongside it.

Back in February, I was asked, by my cardiologist, if I would be prepared to help out as a ‘test patient’, as part of post graduate exams for junior doctors becoming registrars. I jumped at this chance, as the more doctors that get hands on experience of EDS the better for those of us who end up seeing them. I also wanted to make examiners more aware that connective tissue disorders aren’t covered enough during the training process of these young doctors, and many haven’t a clue how to deal with someone like myself.

On March the 10th 2015, I set off to my local hospital where I was met with great enthusiasm by the coordinator of the exams. He had worked hard to create a scenario that would lead candidates to my condition without revealing huge details that would make it too easy on them. I was given a brief of what I was allowed to tell them and what they could and couldn’t do to me. Then I met with the candidate’s examiner, who could tell from my very clear physical signs that I have EDS, such as extremely hypermobile joints, very thin, fragile and stretchy skin with easy bruising, and paper tissue scarring. The brief I had to give the candidates was extreme joint pain, easy dislocation of the large joints, and history of bruising, and that a genetic condition affected my parents. Nothing else was allowed in the history, but, being such a clinical text book presentation, the examiner felt it was enough for the candidates. I was extremely nervous and excited to do this.

At 9.30am I met the first doctor – he asked very clear questions and asked why I needed a wheelchair. I carefully explained that the pain was too great for me to walk any distance and I was very unstable on my joints. He examined me very carefully, not totally sure of what he was dealing with, and found my joints to be very unstable. He told the examiner he wasn’t 100 percent sure and would need further blood tests, along with MRI and CT scans, to be sure of what he was dealing with. He said that he believed it was a connective tissue disorder, but was not fully sure of which one as he had only detected a slight murmur on my heart, and that, together with my height (5ft 2), it didn’t lead him to believe it was Marfan syndrome. He felt it was more likely that I had Ehlers- Danlos syndrome. This young doctor had a great bedside manner and a caring side, which gave me huge hope for the day ahead.

The second candidate was amazing; she was so clued up on EDS that she even impressed the examiner with her knowledge on what issues it could hold for me. She even examined my mouth, which hadn’t been discussed beforehand, and I have an extremely high palate. She refused to over move my joints – after finding how flexible my hands were she turned to the examiner and said “in the interest of the patent’s welfare, I can see her joints are very unstable, so I wont check the others as I don’t wish to do harm” (woohooo – a doctor who understands that floppy joints can mean: ‘Yes, it hurts a lot and may cause damage’). This young lady was amazing in her care, her knowledge, and first and foremost she treated me like a person every step of the way. She diagnosed me with EDS and said she would arrange for occupational therapy, physiotherapy and psychology, in order to be made aware of my needs. She made me feel great and respected, and that if this is what the rest of the day held then I was in for a great day. Sadly it wasn’t.

The third candidate was sadly clueless. She picked up that I had muscle wastage and latched on it, even after a few questions by the examiners to help lead her in a better direction. She diagnosed me with muscular dystrophy and stated that I required palliative care. Her bedside manner was lovely though.
A similar thing followed with the next 2 candidates, both latching on one aspect of my body and running with that, so I was diagnosed with haemophilia, and a neurotic spastic disorder which baffled the examiners.

The sixth candidate shocked me greatly, his manner was horrendous and quite frankly brutal, and he pulled my joints while telling the examiner I was stiff, then just shoved my top up without asking or warning anyone what his intentions were. I felt completely violated and in so much pain, but thankfully he was last before lunch. If any doctor had treated me like that before I would have been outraged, but I was so shocked that someone in his position could treat someone like myself in that way, that I could barely speak. I can’t remember his diagnosis because I was in total shock, and the examiners were not happy either. They asked how I felt – I told them if I was under his care I would refuse to be treated and ask for another doctor, and they understood my feelings. I told them I would need my extra pain meds because of the abuse my joints had just had. These meds I very rarely take, so to need them should give you an understanding of the pain he had caused (safe to say this doctor failed his exam on many levels, and as it was his final attempt at passing, we are safe to know he will not get to registrar in any capacity).

Lunch was lovely, not the usual hospital fare, and chatting with other people there was fun, learning about other weird and bizarre conditions such as a type of diabetes cause by a pituitary tumour. I increased my knowledge of other people’s needs and conditions, but the best thing was that I wasn’t stuck at home with no one to talk to. I was exercising the grey matter, having a great time
and genuinely happy to be there.

The examiners checked to make sure I could continue after the last candidates attack, but I was determined to finish what I had started no matter what, because, even if these doctors failed, they would learn what EDS is, and that was what I came here to do.
The next two candidates were lovely, very carefully sensing my discomfort and trying their level best to put me first – trying to diagnose my condition, but not very sure, they said they would refer me to a rheumatologist for a full diagnosis, which made me very aware that they hadn’t done much in the field, but knew enough to pass me to someone who was more qualified to help. This really encouraged me about them – they weren’t afraid to say “I don’t know”, which I respect from doctors, as they are human after all.

The ninth candidate felt it was a good idea to shake my legs up and down and say they were nerve damaged which isn’t true, then they proceeded to do same with my arm. Suddenly POP, out comes my shoulder fully, and don’t you just love seeing that green tinge that comes to someone who wasn’t expecting a dislocated joint to be in their hands. It was my right shoulder, and this happens so often I can pop it back very quickly with no fuss. This threw the candidate, and she couldn’t finish her exam correctly. Examiners were concerned I was hurt, but I told them it was ok, I’m fine, its back and only like having a bad toothache, to play it down.

Finally the last candidate – this young lady was like the second, a pure breath of fresh air. I needed humour and good grace, and hooray, she carefully examined me, was able to clearly diagnose me, and asked what I wanted from her to make things easier for me. I wish I could have told her frankly that she needed to teach the others how to be like her.

Out of ten doctors that saw me, four passed the exam, some, with further training, will make fantastic doctors and will pass next time, but sadly it also taught me that just because you can pass medical school doesn’t make you a good doctor, and boy did my body feel that too. We were debriefed and given some Marks and Spencer vouchers for our time, and yes, I have booked myself on the next round of exams in June. Going through this process hasn’t deterred my convictions, it has strengthened them. Many of those who failed this exam will go away and research EDS and learn what we go through daily. They will pass the word to other colleagues who are studying for their exams, telling them that they came across me, and they, in turn, will do their own research, and maybe one day a trip to A and E will not involve Google by the time my children are my age.

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To find teaching hospitals or universities that require the services of volunteer patients, try entering ‘Volunteer patients for students’ into your search engine. Some examples are:

http://www.ucl.ac.uk/…/partnerships-cons…/patient-volunteers
http://www.rgu.ac.uk/…/volunte…/volunteer-patient-programme/
http://medicine.st-andrews.ac.uk/volunteer/
https://www.bradfordhospitals.nhs.uk/volunteers-needed-as-p…

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This ‘Your Say’ piece was originally featured in an HMSA Journal. The Journal is an HMSA member’s benefit sent out twice yearly. To become a member visit: http://hypermobility.org/membership/

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Image attribution: Creative Commons Attribution-Share Alike 4.0 International license – B.globa, training of friendly doctors in AMC


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