Would this doctor win the most annoying doctor award? Would certainly irritate me!
I listened to the account of one person’s attempt to get treatment for her illness for Lyme’s disease, or ME, or whatever she has, and was lost for words hearing the account. I said, “You must write this down!”
She did and this is her account. The added hyper-links are mine:
This week I was sent to a psychiatric hospital by mistake. I discovered that this happens to a lot of people in the UK. Doctors are increasingly referring patients with viral, bacterial or neurological illnesses to psychiatric clinics instead of to the relevant specialists – deliberately.
In my case I’d been ill for a while. There were a lot of symptoms, but the two that I thought were most important were the twitches and tremors in my muscles, and the fact that I had become immune to catching colds and ‘flu.
My GP tested me for the usual things like anaemia and thyroid trouble, but didn’t find the cause of my symptoms. He pronounced that it was probably Myalgic Encephelomylitis. I said surely it couldn’t be, but he said that he’d done all the tests, so it must be.
I went away and researched the matter. I discovered that there was a strong chance that I had Lyme’s disease. I returned to the twelve year old GP, told him what I’d found out and with a look of amazement and dawning realization on his face he ordered the test. I was surprised when the test result came back negative, and the doctors must have been just a little bit suspicious because they tested me again and at one point started treating me for it with antibiotics. It was only months later that the laboratory that performed the tests confirmed that they’d tested for the wrong illness.
With the knowledge that I might still have Lyme’s disease after all, I went this week to the ME/CFS specialist clinic in Lazy Town (not its real name , obviously). The GP (after running all the basic tests) had referred me to them with the assurance that this wasn’t a diagnosis of ME/CFS but an opportunity for the specialists there to do more specialised tests to find out what was really wrong.
I arrived by train in Lazy Town and followed the directions to the bus station that the clinic had posted me. I discovered that the place where the bus stop was had long since been re-named and the bus station was being demolished and all the buses had moved. I plumped for a taxi.
I told the taxi driver that I wanted to go to the Joe Bloggs clinic in the SmithJones hospital. He reassured me that he’d get me to the job interview in time.
“No job interview I’m afraid, I’m a patient.”
“Oh, really? Well don’t you worry” the taxi driver said “I don’t judge, I don’t judge, I’ve had cancer, I have, so I don’t judge.”
“Oh, is it a cancer hospital then?”
“Don’t you know?” he said
“No. Just going where the doctor told me to go. I got an insect bite on holiday and the doctor thought I’d got an infection from it that’s made me ill. He’s sent me here because they do more specialised tests.”
The taxi driver looked very surprised and finally decided to speak up “Now don’t get offended,” he said “don’t get offended! But was there anything about your illness that was, well… mental?”
“Well,” I said “I did hallucinate an electric jellyfish once. You don’t mean it’s a mental hospital do you?”
“I’m not saying anything, I’m not saying anything. I don’t know anything, all I’m saying is, it’s known as a place you go to for that sort of thing.”
And the taxi driver was right, it was the psychiatric hospital. However, I went with a hopeful heart because there was every chance that the clinic was being run by plucky underdogs who had very little budget and had only just managed to get a building at all and had to take what they could get, wherever it was. I was wrong.
On arrival I presented myself at the first reception desk and was pointed in the direction of the out-patient’s waiting room.
In the out-patient’s waiting room I found a group of suited officials, wielding A4 pads, pens and zipped leather folders seated in the oddest arrangement and directions, none of them facing each other, conducting a job interview with an applicant that was perched awkwardly behind the door. They all stopped speaking and looked at me as I entered the room. I asked if I was in the wrong place, or if this was the out-patient waiting room? The most put-out looking suit (a middle-aged woman with an official identity badge) said “we didn’t have a room” in a brusque sort of way.
I shrugged it off, sat myself down and let them carry on while I consulted my papers. I heard the suit ask the woman in the corner behind the door “What makes you want to stay in mental health?”
After a while I decided that I wasn’t confident that I was in the right place. I went back to the reception desk and tried again to communicate through the remarkably thick security glass. Sure enough I was meant to be upstairs. I walked past two older ladies who were meandering aimlessly down the corridor, propping each other up. One of them burst into song, I can’t remember whether it was a song by Queen or Status Quo, but I shan’t forget the lolloping giant of a man that joined in the song as he plodded aimlessly in a different direction. The taxi driver had been right.
Upstairs I found the correct waiting room. It was empty except for a couple who looked about 65. It seemed by their body language that the man was accompanying the woman, who was neatly groomed and very afraid. Her husband went to fetch a drink, and I thought I’d take the opportunity to cheer her up.
“Hey, you’ll never guess what just happened to me. I was in the wrong waiting room, and it turned out that there were job interviews going on in there and I ended up sitting in on them.”
The woman suddenly began grinning at the details and got very excited. Her husband came back and, elated, she said:
“Here Keith, Keith, listen to this, listen to what happened to this lady.”
At this point, I was called away by the doctor. Once in the corridor I was struck by the uncanny similarity to the corridor of cells at the local police station (which I had previously visited in a voluntary capacity). The clean, newly build rows of doors had even been equipped with special door handles on both the inside and out that would make it easier to dart in and out in a hurry. Each door had a small window in it at eye level, and once inside the interview room, which could only be described as a small, narrow cell, I noticed that the window was high up, reinforced and and of an unusually secure design.
I sat down, still cheerfully hoping that all the misunderstandings would be smoothed out. The doctor began by asking me what my expectations were of ‘The Service’, by which I presume she meant the clinic.
“Oh, well, my doctor sent me here because he said he’s done all of the basic tests and he said that you’d be able to test me for all the more specialised things that are commonly misdiagnosed as ME and work out what the trouble is.” I said it cheerily enough, but as I was saying it I could see the doctors face curl up into a condescending smile.
She shook her head “Oh, no, no, no” and she used my first name in a way that was offensively over-familiar “No, we don’t do any tests here, we wouldn’t have the resources, no, your doctor has done all the tests. He has sent you here because he can’t find anything physically wrong with you.”
She was wrong there, and I was going to tell her so. “I think there’s been a mistake-”
“No mistake” and she used my first name again.
“No, I know there has been a mistake. You see, the laboratory confirmed it just a few days ago and I discussed it with my doctor yesterday. The laboratory that did my test for Lyme’s disease say that they did the wrong test, We didn’t realise until just last week.”
“Oh, no” and my name was taken in vain again “I’ve got all your notes here” and she smiled like a menacing cat “The test came back negative, it was performed last June, it was negative.”
“Yes, but just days ago the laboratory said that it was the wrong test. The GP didn’t know where to go for the right test, so he sent me here for investigation.”
“No, no. ME/CFS is a diagnosis of exclusion and we have excluded all of the things it could be. We don’t do any testing here. We have the O.T.s [I presume she meant Occupational therapists] and then I am a Psychiatric doctor because you have to have a doctor here to tease out symptoms.”
At the mention of symptoms I pulled out the list I’d made earlier and offered her a copy and referred to one I’d made for myself. I said that I’d brought the list as an aid to memory and she jumped on this as evidence that I had trouble concentrating. I told her that I didn’t. In all honesty my symptoms are distracting and sometimes de-motivating, but I can still read in two languages and interpret intimidating medical data. Again and again she kept fishing for the same things “You have trouble concentrating?” it was as though she needed to to be able to tick it off her list.
The list that I had prepared contained symptoms that pointed to a couple of obvious clinical illnesses. I’d deliberately written it this way to see what the ME specialist made of it. She was foxed. She didn’t recognise the tell-tale symptoms of Lyme’s disease, she also contradicted the leaflets that she would later hand me, saying that twitching and strange food allergies were nothing to do with ME. In actually fact, the literature from her own department tried to claim them as common symptoms.
I asked her what the usual recovery time was for ME/CFS. She said that it never really went away, but that you could suppress the symptoms by working with the O.T.s, but that people don’t recover from ME. This is, of course, not accurate. I didn’t it point out to her at the time, but total recovery from ME is possible and does happen, but if it is going to happen then it is more likely to happen within the first two years.
The doctor then suggested that perhaps I should do some reading about ME. I disguised my growing contempt for her with a sugary smile and chirpy tone “Oh, I have been reading up on it.”
“Really? Tell me what you know.” This was a foolish question to have asked me, because we would not have time for me to recite all that my eidetic memory has retained on the subject.
I settled for saying “Well, I thought the history of the first two ME outbreaks was very interesting.”
“Outbreaks? What outbreaks?”
“You know, the first two recorded, widely studied outbreaks of ME. The second one was studied by that doctor, what was his name? Dr Ramsey, I think, or something like that, and that was when ME first got it’s name and the doctor wrote a famous book on the subject. Do you really not know anything about it? Are you joking with me?”
“No, I don’t know anything about this, I don’t know what it is. Tell me.”
“Well, the first two recorded outbreaks of ME were in the Los Angeles County Hospital in 1934 and the Royal Free Hospital in London in 1955. They were both outbreaks amongst the staff and not the patients. They really are very famous in ME circles. First they were called out breaks of a-typical polio and then this doctor came along and made a real study of the second one and called it Myalgic En-”
And at this point she quickly finished my sentence for me to show me that she did know the correct pronunciation of the illness, and so was not so ill-informed as all that.
She began to delve a little further into my medical history. She wanted to know what my parents did for a living and if I had suffered any severe childhood illnesses. “None that I can think of. My sister and I both had whooping cough because we didn’t have all of our vaccinations (we lived abroad, you know, where there was no NHS) but we were all right in the end and got over it soon enough. She appeared uninterested in the fact that I had missed my vaccinations and instead wanted the spelling of the place that I had lived, because she had never heard of these Channel Islands.
I was beginning to tire of her nonsense and realised that she had too little clinical knowledge to be useful to me. I started to demonstrate that I was ready to leave by folding up my paper and replacing it in my handbag and picking up my jacket. We had talked for a long time, on a whole list of subjects, I had talked about the group of girls that I had been coaching when I became suddenly ill. I talked about my last big race and how I had had to stop running suddenly. I told her about how my sister had become ill, with the same symptoms, at a time when she too was running a lot.
The doctor nodded and smiled, with the worst kind of condescension. She produced two leaflets for me, both produced by her department, one for me, and one for my father who she said was my ‘career’.
“I think he put some curtains up for me a while ago, but I wouldn’t have gone so far as to call him my carer.”
“No, no” and she just managed to stop short of playfully wagging her finger at me “you’ve put here on your form that your father is your carer.”
“No, you asked for my next of kin, I put his name down as my next of kin, that’s different to a carer.”
“Well then who brought you here today?”
“My feet, but I’ll take the leaflet all the same for him to read.”
“Well now, we have to decide how we would like to proceed you can either have group sessions, which are very helpful, or perhaps one-to-ones?”
“Hang on, do you mean that you are diagnosing me with ME?”
“Yes, but you mustn’t see it as a label, ME/CFS isn’t a label, it’s a diagnosis of exclusion, it’s just your symptoms that are ME/CFS, not you. Now, some people find group sessions very helpful.”
“Group sessions of what?”
“Well we need to work together to manage your symptoms and keep them under control, so group sessions can be very helpful, lots of tips and tricks, tips and tricks.”
“Yes, but group sessions of what? What are these group sessions?”
“They’re tips, tips, people find them quite helpful.”
“I’m sorry, but you’re being quite vague, you aren’t telling me what these sessions consist of, are you talking about the Lightning Therapy? Because, quite frankly-”
“Light therapy, do you mean light therapy?”
“No, the Lightning Therapy, the famous, but controversial therapy for ME that everyone interested in ME is talking about. Because quite frankly, I can’t see the scientific basis for it, and I don’t believe in its efficacy-”
“You mean light therapy” she said “energy from very bright light bulbs?” she was obviously talking about the therapy for Seasonally Affected Disorder.
“No, the famous Lightning Therapy program, it’s based on what I can only describe as Scientology. It includes self-hypnosis, among other things.”
“No, I haven’t heard of that. We only work on proven treatment here, only proven treatments, we follow the NICE guidelines.”
“Good, but you still haven’t told me what your sessions consist of, if you’ll forgive me for pressing you, you’re being extremely vague. Are you talking about CBT, Graded Exercise Therapy?”
“Yes, yes, graded exercise therapy” here she turned to a page in her leaflet for help it listed all kinds of things, including CBT, psychiatric help and diet advice “I won’t be recommending you for CBT because you have a very positive outlook, very positive, and there is a saying, is there not, a job well begun, it is half done? And I will not be recommending you to the dietician because I think you have a very healthy diet because you have told me that you do not drink alcohol” [little does she know that I live entirely off eggs and crystallized ginger]. “Some people eat things that make them tired, so they go to the dietician. You, I think we will have graded exercise and tips from the OT. The group sessions are once a week and if you miss one they what not be repeated.”
What? I thought, Once a week! I’m not schlepping it all the way over to Lazy Town once a week and paying the train fare to listen to this rubbish.
“But” she said “You can have sessions one-to-one instead, and these can be done over the phone. Now you are not to go running today, no, no, you would be ill tomorrow. You must talk to the O.T.s and they will guide you through increasing your exercise gradually.”
In short, it appeared that she was saying that gradually getting back into the habit of doing some exercise was the answer for me. I wondered why, if exercise was the answer, I had become ill in the first place. I was someone who could finish a 10k race in under an hour.
I glanced at the leaflet and noted that by their standards I was considered a mild case and that severe cases were bed-bound and fed through a straw. These cases were offered home visits. I wondered what was really wrong with them, and if they would ever get an accurate diagnosis.
I decided that it was time to go and so stood up. The specialist that appeared not to be a specialist at all escorted me back past all the other cells and I thought to myself of the famous and ancient poem:
“Doubtless, you are the voice of the people,
and when you die, wisdom will die with you!
But I have a brain, as well as you,
I am in no way inferior to you,
And who, in any case, does not know all that?
I have seen all this with my own eyes,
Heard all this with my own ears and understood.
Whatever you know, I know too;
I am in no way inferior to you.
As for you, you are only charlatans,
all worthless as doctors!
Will no one teach you to be quiet
– the only wisdom that becomes you!”