Monday, May 21, 2007

NHS ignorance

I can't believe the ignorance of some so called NHS professionals.*

Today I had an appointment with the local Psychiatrist, a very experienced guy, Clinical Director of my local trust. So I held out a bit of a hope that he may know his stuff. Oh how wrong I was.

If any of you have read my post here, you will know I have been struggling with the symptoms of what I, my psychologist, my social worker and my friends believe to be Tourette's Syndrome.

Having done a lot of research on the matter, I have had many a light bulb moment while reading about it and for the first time in my life I didn't feel like a fool, I finally felt that I may actually have something real, something with a name, something that explained the way I was.

I was very anxious about today, moments of anxiety kept creeping up on me. I kept internally talking to myself, what was the worst thing that could happen? My psychologist and social worker believe me, they don't think I am making it up so why should he.... Breathe.

When I finally arrived and walked in everything shattered, just as I had suspected. At least I had come prepared for the worst.

I started by telling him how my friends and housemates had first mentioned it and how they had given me the research and findings they had done into it and how I had refused to listen, but then on reading the information it seemed to be like a light bulb moment and everything fitted. I gave him a print out of my post that won post of the week. He skim read it, handed it back to me and just said "Listen to me - you DO NOT have Tourettes, ok, now get this nonsense out of your head" .... I felt kicked down, silenced,... again. I felt angry, frustrated and decided that I would stand my ground. So I asked him how he had come to that instant conclusion? And then came the line I had been waiting for "You don't swear, no where have you told me that you swear or use foul language"..

I replied, "But only 8% of people with Tourettes actually swear" ... I could see he was getting a little agitated at my questioning him, but I had waited 3 months for this appointment I was not going to just sit back and leave feeling cross with myself for not getting everything I needed to across. He replied "Well I am the doctor here, and I have had the training, and as far as I was taught you HAVE to swear to have Tourettes". I told him that simply was not true. After being in the room with him a little longer he went so far as to admit that I clearly had a tic disorder and that he would refer me to a Neurologist.

He asked me where I had got this "silly idea" from, and I told him it was my housemates that had pushed me into seeing someone. He very condescendingly asked my housemates background, and what could they possibly they know? I told him one was a Doctor of chemistry and the other a computer programmer. His reply was "Well, hardly a psychology background then?". I agreed, no, but they were both highly intelligent and they were the ones that lived with me, not him.

He came round a bit toward the end of the appointment, and did admit that he did not know much about Tourette's except what he had learned a long time ago. He also said that maybe the diagnostic criteria had changed and he was not aware of the changes.

I am still simply astounded by his ignorance!

What hope is there in gaining social understanding in society for people with TS if even the professionals don't understand it? I feel very disappointed... but not surprised in the least.

*Not all NHS professionals are ignorant, just today's and I feel very sad about that..

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15 Comments:

Blogger Justin White said...

I have tourettes syndrome as well and for the first few months I didn't swear at all. I dont know where your docter got that from but he's wrong and he had an aditude about it as well. I would go tho a neroalogist..

8:16 PM  
Blogger Penny L. Richards said...

Maybe get him a copy of Amy Wilensky's Passing for Normal, which is her memoir about growing up with undiagnosed Tourettes and OCD. He might learn something. Meanwhile, I hope you see a more openminded specialist next time! How frustrating.

9:32 PM  
Blogger badgerdaddy said...

What a complete fuckwit. I'm not sure if I would have laughed at him or punched him.

And that's the constructive side of me coming out.

2:45 PM  
Blogger Drak said...

In my automatic devil's advocate position - mental health is a very big and rapidly changing field, it is probably a bit much to expect one person to be completely up to date. But yeah. Stupid man, he should at least have prefaced it with 'In my opinion' or some such- One thing a specialist should always know is that they don't know it all!

I worked for a very experienced anaesthetist for a while and he was always reading up on new techniques and the like. He was always keen to point out to colleagues and patients that he could only give the best advice based on what he knw 'right now' and while the basics of knocking people unconscious/ removin their facility to recognise painhas been around for at least a 1000 years or more there were always new things he hadn't heard of, or hadn't had the opportunity to study yet. And anaesthesia is a much narrower subject than mental health.

Unfortunately a lot of psychs, therapists etc feel thay have to be definite about everything - probably to compensate for the fact that they are working with one of the least definite sciences.
Go see a neurologist, and if they cannot give you a good and clear explanation of what you've got, see if they can refer you to a consultant neurologist specialising in TS or some similar family of neurological 'misfunction'. It may be that what you have will turn out to be 'pseudo-Tourrettes' or even Badger's Syndrome. The label doesn't matter. The acknowledgement that you have a condition is important at this moment, but exactly what it is, afaik, isn't.

12:06 AM  
Blogger Miss Tickle said...

Badger, well done for being so brave and going to see him at all, and well done for sticking with it and not letting him get away with being a twat.

And here's hoping the neurologist isn't a twat.

4:39 PM  
Blogger PurpleSparkleBright said...

He reminds me of the GP who said to me "I see a lot of histrionic women like you, cutting would be normal if you were a Maori, and anyway, its in little patterns and SOME people almost cut their entire hands off, its obviously not serious, why don't you get a boyfriend and cheer up"
What a pile of old wankers the NHS has in it's midst. It's part of their "Doctors" contract to be CONSTANTLY LEARNING AND RESEARCHING, not just sitting on their bums being rude to patients. My current GP is almost as bad: he won't put my meds on repeat becasue I seem "positive" !!!!!!!!!!!!!!!!!

8:50 PM  
Anonymous TicAlex said...

Disgusting. Just disgusting.
Im sorry, but no matter how fast psychology/psychiatry are changing, that is no excuse for gross ignorance.
I would suggest, in my opinion, that if you get diagnosed, you report him. Im sure theres something that could be done - even if it is as small as forcing him to learn a little more about tourette's!
Good luck with the neurologist, Ive been lucky - my psychiatrist(s) (ive had 3 of them since dx!) are great. I need to see them more than the neurologist because I have some other psychological issues along with the tourette's. I found that the neurologist wasnt much use to me - as they just wanted to bang me on meds and not help me work around it. If you do get dx, then you should probably look into finding a psychiatrist/specialist in TS who can help you with coping strategies too!

Sorry if this comment is a bit rambling, Im half asleep!
-Al
~x~

8:40 PM  
Blogger Stray said...

badger badger burning bright ...

I may only be a little computer programmer, but he's a twat and he hasn't got a clue, and until he has shared a bed with you on holiday, heard you tic in the middle of the night, seen you have to stick your leg out the window in a traffic jam and heard your conversations with the chicken he hasn't really got any bloody right to say what you have or haven't got!

What a tosser.

Well done for complaining!

Mr Neuro will love you for being a rare girl with tourettes, he will love the fact that you don't give a toss that you've got it and he will want to show you off to all his friends ;)

Sx

12:14 AM  
Blogger But Why? said...

Woah there just a moment, Stray. If medics can't be trusted to make a diagnosis until they've shared beds with patients on holiday, primary health care would grind to a halt, the cost of seeing your local GP would skyrocket as you whizz them off for a short break to share a bed in the Maldives every time you want some antibiotics, waiting lists would be more ridiculously long than as now, and as for seeing people stick their legs out of car windows whilst stuck in traffic jams, well, all those poor sods with arthritis would never get a diagnosis, not to mention double amputees.

But on the point in hand, yes, the guy sounds like a prize vegetable. I expect he'll be on display at the County Show. Perhaps we should go along and throw rotten tomatoes at him?

5:56 PM  
Anonymous R Bray said...

What a numpty!

I have strolled over here to nose your blog from I can't remember where. I do hope you don't mind.

Whilst it is indeed true that no medical professional can be "up to speed" on every condition at all times, I think it is fairly well established that coprolalia is not a key diagnostic feature of Tourettes, isn't it?

I have had similar-ish experiences of out-dated medics telling me stuff that is totally obsolete (like being diagnosed with Obscure Auditory Dysfunction two years ago - a diagnosis that went out with the ark, and being told by the audiologist that it is in no way linked to Dyspraxia, Dyslexia, or Autistic Spectrum Disorders.)

3:08 PM  
Anonymous Your boss! said...

Well I'm surprised you didn't feel moved to swear at him - what a arse!

And by doing so you would have then fulfilled his ludicrous diagnosis requirement.

Perhaps we need a new syndrome to explain the medical profession's tremendous fear of patients who may already know what is wrong with them!

Anyone got a good name for it? Internetaphobia? Googlitius?

11:31 AM  
Anonymous Dave Ross said...

I've heard of doctors with egos, but wow! When I saw a GP about getting a neurologist referral and explained why I thought I had Tourette's, the first thing he did was say "excuse me" and he came back with a big book.

I hope everything works out for you with the neurologist.

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