Tuesday, May 22, 2012

Discussing Doctors

My first thoughts as I left the appointment probably shouldn't have been "how on earth do I blog about this". Considering the discussion we'd just had it probably should have been "actually I don't fancy the idea of a progressive neurological disorder" but blogging is easier on the psyche.

When I started to write, five years ago today, it was under a pseudonym, no-one in the tiny corner of the internet talking about being bendy and broken bureaucracy knew who I was, so it didn't really matter what I said. Even so, I was never comfortable naming the medical professionals I was discussing, it didn't seem fair to leave a critical record of a doctor that they could find without putting my name to it too. Five years on, this blog is connected with my real name, and whilst I still don't name doctors they would certainly be able to recognise themselves should they care to look.

Which is why its now becoming more difficult to be so honest, but the point of a blog is to be that honest, and its important to find a way to do so, to be critical or complimentary in a fair way. So, before I start to explain what was discussed, some context; my rheumatologist is a lovely man, kind, gentle and empathetic. He takes time to explain things and is generally the kind of doctor who'd sit and hold a patient's hand should they need it. His intention was clearly to reassure me and be supportive not unkind or cruel, but, many of the explanations he gave me were also factually incorrect, and it would be dishonest not to address that.

I didn't feel I was really able to communicate just how bad the past six months have been health wise, but we discussed the investigations from respiratory & ENT. Doctors aren't generally trained in disability medicine, there isn't really such a speciality, the closest you could get would be to combine a GP, a general physician (who generally don't exist any more) an Occupational medicine specialist, physiotherapists, Occupational Therapists, social workers CPN's and psychologists with a bizarre side order of some of the skills used by benefits assessing doctors - preferably their pre Work Capability Assessment skills! This lack of speciality means that NHS doctors generally don't pick up on the cues patients give about their level of disability. 'My neighbours bring meals in' doesn't typically translate to 'I don't have the co-ordination, strength or dexterity to prepare myself food'. To be fair, it's not supposed to, the whole training of NHS doctors is geared towards curing patients and returning them to health.

When I heard the rheumatologist say that Ehlers Danlos isn't degenerative my initial thought was 'eh, what, are we talking about the same condition?' Then there was the 'EDS isn't disabling by itself but the chronic pain can be' which confused me further - generally speaking dislocating, falling over and lacking enough muscle stregnth and co-ordination to properly work a remote control are fairly disabling things, with or without a side order of chronic pain. But, it was really the statement that EDS doesn't make people floppy that finished me off. I came away wondering if that was really the case, if somehow myself and all the other floppy bendy people and the expert EDS doctors might be wrong, but no, a quick google reassured me that if even the official NHS conditions information list EDS as one of the potential diagnosis related to hypotonia then it's my rheumatologist that's wrong, not me.

The work is generally good for you explanation made me giggle on the inside - my doctor has no idea what I do, if he had he wouldn't have given me a patronising explanation about not giving up and doing nothing, but like with the hypotonia and degeneration misinformation I just didn't have it in me to correct him. It's very difficult for both patient and doctor when the patient is extremely well informed about a condition the doctor is less familiar with and not dealing with the situation correctly will rapidly derail a consultation from either side. I was also left somewhat baffled by the 'spines are supposed to rotate...like in Chinese contortionists with EDS' theory...um, yes, of course spines are supposed to rotate...but I'm fairly confident that individual bony bits are not supposed to move off on their own, rotate in a different direction to the rest of the spine then get stuck there like an Occupy protest waiting for someone to move them along.

In what was a clear attempt to reassure me about the DWP my rheumatologist explained that he would certainly fill out any forms he received from them, and that he would emphasise that I'm being tested for an unknown degenerative neurological disorder too, so that should hold them off. To his credit he was aware that interpretation of the descriptors varies...but definitely not aware of what those descriptors are or the intention behind them. Funnily enough I was not overly comforted by this, and required a great deal of reassurance later from a GP friend that 'no, you're not mad', 'yes, EDS is degenerative and it very definitely makes some, but not all people floppy'.

My rheumatologist is correct to state that we shouldn't assume everything is caused by my EDS in case we miss something, so I'm being referred to Walton Neurological Centre for some tests. These are tests I've had before, prior to my diagnosis of EDS which were all completely normal then so I'm not expecting that to be any different now, but it does concern me that they are being ordered because of the assumption that EDS doesn't cause floppiness, or to term it properly, hypotonia.

It also concerns me that this is my doctor long term. Over the years I've found that some doctors instinctively and immediately grasp the fact that if your collagen, or building block of the structures is defective, then pretty much anything can be affected by that, others simply can't get to grips with that concept and talk alot about 'impossible'. Those doctors who do understand talk about 'not normal except in EDS'. This means I'm faced with the increasingly common dilemma many people with chronic and 'rare' conditions face, lack of medical expertise. I have a kind, pleasant doctor, but I'm at a bit of a loss as how to educate him on a condition that falls within his speciality but which he is clearly misinformed upon.

As people use the internet and social media more often, this situation will become more frequent. Most patients name doctors when talking or writing about them, not understanding that could leave them open to libel accusations and certainly prevent any positive therapuetic relationship should the doctor see their comments. Doctors using social media have picked up on this issue and it's fantastic to see professionals discussing it in an open, constructive manner which patients can read should they wish to do so. But as patients we don't have any codes of professional conduct to follow, so its down to the individual to act responsibly. It is certainly an issue that we as patients should also discuss amongst ourselves and the most constructive way forward seems to be to have that discussion alongside doctors to find a workable balance.


jackie said...

Love, love, love this. My local rheumy ignores EDS as they don't 'get it' and concentrates on the fibromyalgia - in fact there exact words are "well you probably know more now about this than I ever will, hypermobility can't be cured". Trying to make them understand it's not just the hypermobility that's an issue is like trying to move a mountain. Thank you for reminding me I'm not alone x

ellyoracle.com said...

My brother's GP was surprisingly helpful when we went to discuss getting his aspergers diagnosed. I'd done my research (I'm an NHS pharmacist so I'd made sure even the structure of how I presented what I was saying was GP-friendly, which undoubtedly helped). He was honest and said, look you've obviously done your research, and this isn't something I know much about, so how would you like me to help? We worked out the details of the referral process between us.
Fortunately I'm at a huge advantage in being able to speak GP language, but if you can set out your stall at via start of the consultation in a calm, co-operative, rational and not demanding way, that acknowledges you don't expect the Dr to have all the answers (a big problem for healthcare professionals is feeling they do have to have all the answers and know everything) - and importantly, that you don't come across as thinking you have all the answers (even if you do!), then that's a good start. A really good tip I think, is bringing some resources that back up what you're saying to leave for the Dr. We love evidence and facts we can digest later to improve our knowledge (or analyse so we can explain why it's junk) and it's actually a subtle way of non-verbally giving permission to do some more reading around after the consultation. Be prepared to listen as much as tell though - the atmosphere should be "let's work together"

Anonymous said...

Excellent article. I'm currently being tested for auto-immune arthritis and I feel my Rheumy number 3 isn't listening to me as much as I'd like.

Rheumy 1 who diagnosed Benign HMS was very dismissive of it, saying it was a very minor issue and that the Fibro is worse. He also said my fingers weren't affected when they demonstrably are. He said the little fingers bending back were irrelevant, it was the 3rd finger that mattered. I know from the internet, my GP, Physio and Rheumy 3 that that's wrong.

The good thing is that Rheumy 3 seems ever so slightly open to the possibility that I have EDS 3. My sclerae have a blue tinge (not 1 Rheumy has looked at them to date). My skin is stretchy, bruises easily, scars easily and I take ages to recover from cuts, wounds etc.

I just wish someone would send me for the appropriate testing etc so that I would know once and for all what the cause is. Both parents are bendy, even my 72 year old father. My brother and niece are bendy. Mum's sisters and my cousin on are all bendy. So is my maternal grandmother. We have a history of heart problems in later middle age (50s).

I think a lot of Drs focus in on each symptom seperately, rather than stepping back and looking at it as a whole.

Anonymous said...

YES! Just how do we educate them on a condition that falls within their speciality but which they are clearly misinformed upon? It's a huge dilemma. Every time I have tried I either get the 'patronising look' - intended to make you shrivel up and shut up. Or the 'stunned look' - intended to make you tremble in your boots (in my case crocs) for daring to have an opinion. Or the 'glazed look' - intended to make you feel like they're not listening (which they're not) so you give up the pointless attempt. Or the ' tolerant look' - intended to make you think they are listening to you whilst you know they are just waiting for you to finish so they can carry on ignoring you.

Arrogance and Ego and lack of time or will to become better informed appear to be the main problems.

They really don't like it if you know more than they do - or they use that as an excuse not to educate themselves.

I have tried explaining, giving them written information, sending them written information so they can read at leisure, sending them information about talks or conferences they could attend, asking them to discuss it with other colleagues... nothing.

If anyone has any other ideas...PLEASE let us have them!!!

hossylass said...

We are not alone.

Now that sounds positive!

Actually the fact is that we are not alone in being treated like this.

Many thnks to those who have outlined their experiences above, saves me the effort of repeating it.


misspiggy said...

Beautifully put post. I used to think older Rheumatologists had out of date ideas, but then I found that a younger person from the same team as a certain wonderful EDS expert came out with all these inaccurate points. She ignored the list of symptoms that she had checked off during our appointment, and diagnosed me Benign JHS.

18 months later, having pushed, I was diagnosed with EDS 3 by the lovely expert. However - when I got the EDS 3 diagnosis I was having a bad day and could hardly move or speak. I think that made a difference to the interest that the lovely EDS expert took in me. So my suggestion for Anonymous would be to keep pushing for a new diagnosis if yours doesn't fit, and to constantly show and tell doctors how bad things are.

Then again, when I went to Barts for gastro support they did a pretty objective set of questions and tests, including for skin stretchiness. Using this made it easy for them to tell what kind of bendy I was.

So if a junior gastroenterologist can spot EDS issues easily with the right checklist, what is it about rheumatologists' backgrounds which blocks them from applying their own tools and knowledge?

Becca said...

Urgh. That's no bloody good! You need to come into Manchester and see Dr. Ho at the Kellgren Centre for Rheumatology (rearrange those at your leisure, I can't remember which way round the name is). You're right - this doctor cannot provide you with safe long-term EDS care.

That said, the Walton centre are world-leaders - for neurology, yes, which is unlikely to be relevant - but also for assistive technology! See if someone there will send you to see the Electronic Assistive Technology team while you're around. It's the best in the country by a very, very long way (they cover the entire NW) and may have some safety- or quality of life-improving gadgetry to give you.

A way to open your front door a) remotely and b) without using any grip strength at all, for instance.

Anonymous said...

Thanks Miss Piggy, I'm going to keep pushing for answers. I had a bladder scan yesterday and the Nurses gave me a letter to give to my GP and told me to make an appointment with him asap (will see him tomorrow as he's off today). I know EDS can cause bladder issues (was born with them, am 24 in 2 weeks and this is the first time anyone has ever scanned my bladder, despite spending most of my early life seeing Hospital Counsultants about it...) so hopefully I may have some more evidence to show my Rheumy after tomorrow.

It might just be BHMS, but if they don't consider the possibility that it might be EDS then I can't trust that diagnosis.

When I move back to London I'm going to push to see the Specialist you mentioned if I've still not got answers. I know who you mean :)

S Sutherland said...

Bravo. Doctors can learn a lot from their patients, but don't seem to want to listen in many cases. I have told Doctors over the years many things about how my body reacts to various stimuli and they have literally told me I was nuts. Years later, studies proved what I was telling them! Never did get to say I told you so.

Good Job.

Chris Page said...

Congrats on the Orwell nomination - so proud of you!

Bitethehand said...

. 'My neighbours bring meals in' doesn't typically translate to 'I don't have the co-ordination, strength or dexterity to prepare myself food'.

In which case why not simply say "'I don't have the co-ordination, strength or dexterity to prepare myself food'?

Nemonie said...

There was a paper published in 2010 by the leaders in the field of connective tissue disorders - in which they said that Hypermobility syndrome (of which BJHS is just another name) is clinically indistinguishable from EDS-hypermobility type, and thus they should be treated the same clinically. In fact if you get a diagnosis from one of the authors of the paper, it says EDS-H (formally known as HMS).
Search out the paper and send it to your rheumy as they should be up to date on the current thinking in the clinical area.

misspiggy said...

Bitethehand - you'd think it would be easy, wouldn't you. But try actually doing it, particularly when you have 30 seconds to explain in the face of a doctor's quizzical stare.

It's very very hard, especially as you tend to assume that doctors will see through the understatement to what you really mean - when in fact it's more like the opposite. Perhaps partly because for some reason one doesn't want to be thought of as a wuss..?

The hardest thing is probably acknowledging these things out loud to a stranger. I find myself saying things like 'I have quite a lot of pain', when I mean, 'I spend hours in agony unable to move a muscle.' But try as I might, I just can't come out with it in a 10 minute medical appointment.

Carruthers said...

"... why not simply say "'I don't have the co-ordination, strength or dexterity to prepare myself food'?"

This is a good question, and the various answers provide an interesting light on the relationship between doctors and patients.

The first answer is the most important. If you say, "My neighbours bring meals in," then you are making a statement of a fact about your everyday life. This is something that your doctor does not, cannot, know. It is something which you can be assumed to know. This maintains the traditional relationship between doctor and patient.

Once you use phrases like "co-ordination, strength or dexterity," then you are using the words that the doctor will usually be using to write up his notes. For quite a lot of doctors this smacks of you trying to tell them what to write. You are using those words because it sums up the problems you have in that particular area, and allows for the extension of that description to other areas, and you hope that the doctor will pick up on that.

It can sound like the patient dictating the diagnosis to the doctor. Sometimes that's what it is - more often you are trying to use the right words to sum up a complicated situation. Unfortunately this can be seen as an affront to the doctor's dignity and a suggestion that his training and experience still leave you better able to do his job than he can. (I'm using "he" - it could as easily be "she", though at consultant level there are, I think, more men.)

There is also the not unfounded belief that the Internet has led to many people who have diagnosed themselves, and have probably got it wrong. The self-diagnosed patient may be talking to the wrong doctor and producing an edited (perhaps even padded) list of symptoms designed to prove the point the patient is making.

Thus the comforting doctor and the snotty doctor are both trying to say the same thing, "Don't tell me how to do my job."

Many of us have wanted to say, "Why not? You don't seem to know."

It rarely helps.

The only way round that I can see is for the patient to accept that they are to have to handle the doctor very carefully. You say, "My neighbour brings meals in," and then you let him lead you gently through the process of establishing that your don't have the coordination, strength or dexterity to do it yourself.

It wastes time, and it would really help if doctors would trust your intelligence and your grasp of facts.

The only tactic that I have ever found work - and then only with some doctors - is to spend the first few visits letting them tell you things, and passing the odd comment which is designed to demonstrate (as subtly as possible) that you are not an idiot, not someone who needs protecting from harsh truths and can (co)operate with medical terminology, then they may start taking you seriously later.

One hospital consultant (a genuinely nice man as well) upped his level of description to me one day on the ward round. I only worked out why a couple of hours later - my copy of "Scientific American" had been open on the table.

Anonymous said...

"In which case why not simply say "'I don't have the co-ordination, strength or dexterity to prepare myself food'?"

Many patients may not have that kind of vocabulary to describe their own limitations or disabilities, in which case they can't speak about their problems in such a manner to their doctor.

Other patients who are educated about their diseases and do have a medical vocabulary often find that if they use 'medical terminology' to describe their condition or to ask questions, that comes as an affront to the doctor's ego.

For example, after an annual eye examination a doctor gave me no feedback whatsoever. As the condition is one that I am expected to self-manage and my own actions can influence the course of the disease, I asked the doctor what he had seen in my eye.

The doctor told me 'some changes' and prepared for me to leave. I asked the doctor to be more specific and asked 'what grade of changes'. The doctor replied, 'what have you been reading some textbooks eh? Think you know about grading do you? You're that level of education are you? I'll write a letter to your GP." And that was that. I left with no specific information about what changes had been seen, even though I am the one who manages my condition (not my GP).

Such doctors think that they and only they are entitled to know medical terminology and that patients are too stupid to understand. On the one hand they decry patients who don't 'take responsibility for managing their own condition' (in my case diabetes), yet on the other hand they hate empowered/knowledgeable patients.

As a patient you often have to walk the line between pandering to a doctor's ego and making them feel like the big and clever 'expert' (even when they clearly aren't), at the same time as subtly trying to extract the information that you require to manage your own disease

Anonymous said...

I was once told that EDS isn't progressive, meaning that the process itself actually changes over time, but it's degenerative in that cumulatively things happen which together result in generally increasing amounts of trouble, over time. Of course it's made more complicated by the fact that some people have 'blips' that they can somehow compensate for with muscles and physio, and appear not to have long term and increasing difficulties as a result of. Not for the rest of us, though...

misspiggy said...

ooh thank you Anonymous, I will cut out and keep that description!

Ronnie (Sale Cheshire) said...

Ronnie (Sale Cheshire)

Where does this blog get its title from? "Benefit Scrounging Scum" just founf this while looking into RA and Ank Spon, which i have had for almost 50 years, i am a very young and active 57 now, and keep smiling through the pain ;-)