Sunday, 14 December 2014

85. How to turn a person into a nameless patient

It is 9.30am. I walk into a leading cancer hospital feeling confident, strong and in control. I am Irene.

I have come to discuss with the doctor whether or not to have radiotherapy. My husband has come with me, wearing his suit and towing a smart little case on wheels because he has to fly off on a business trip after my appointment. He looks the part as the companion of someone confident, strong and in control. 

By 10.15am, my confidence has dissolved. I am Irene no more.

I am an anonymous patient. My personality has crumbled, the pieces strewn across the shiny hospital floor. Anyone can come along now and kick them into a corner.

It is only when the doctor finally arrives and picks up the pieces, addressing me as if I am Irene, a whole person with a brain and a unique story, that I slowly begin to reassemble myself. Who am I again? Ah, yes, I remember. I'm me, not just any old patient.

I am due back at this hospital tomorrow morning. I feel fairly strong again, and this time, I will try and hold on to myself.

I will not be cowed by receptionists who give you the feeling that you ought not ask any questions, however bewildered you are by the unfamiliar procedures, because they know what they are doing and you should just trust them. Not bother them with anxious questions, am I waiting in the right place, have they forgotten me? My wife is due at another hospital at noon, will she get there in time?

Then, in January, I will have to go every day. I will undoubtedly get to know the routine. I'll know exactly where to go. I'll be a seasoned patient and I may even have a name. If I'm really lucky, they will know how to pronounce it (ee-RAY-na!).

I will forget that very first day.

But it is worth remembering how it happened, the rapid deconstruction of my personhood. So let me take you back to that morning.

It isn't for lack of facilities. This is a world-famous state-of-the-art cancer hospital. The place looks clean, organised, efficient. Fragrant coffee shop, gleaming floors, fresh paint, clear signs everywhere. Radiotherapy Downstairs. (Well, it doesn't say Downstairs, but there's a clear arrow pointing down the stairs.)

When we finally make it to Radiotherapy Downstairs, the waiting room there is spacious and calm, with inviting comfy chairs. It even has a machine that spews out free coffee and hot chocolate. There is a huge sparkling tropical fish tank, perfect for those who don't want to look at their shoes, or their fellow patients, or the bountiful leaflets on The Long Term Effects Of Pelvic Radiotherapy On Men.

My appointment is at 10am.

We walk into the hospital half an hour early, because I have telephoned the doctor's secretary to ask how long it will take. Will I make it to the lunchtime appointment at my own hospital? Oh yes, she had said. But come 20 minutes earlier, because you have some forms to fill in first.

"Take a seat," says the receptionist, gesturing broadly towards the assorted chairs. "There are a couple of people before you."

What, wait here? How about Radiotherapy Downstairs? Better not ask. She seems so sure of herself, and she's taken my appointment letter so I'm without evidence that I need Radiotherapy Downstairs, and anyway, we still have half an hour.

I choose strategically placed seats from where I can observe proceedings. Time ticks by. Ten minutes. Fifteen minutes. Twenty minutes.

"I'm going to ask again," says my husband, concerned that I'll miss my 10am slot and he'll miss his plane. (Not an ideal day, this, but the referral letter only came in the post one working day ago, so we didn't have time to arrange things better. The short notice is a bit annoying, as I've been asking for this referral for the past two months. But hey, let's just be delighted that we are here at last.)

"No, wait," I tell my husband, "I think I've figured it out." Clearly, the system is so obvious to the receptionist that it doesn't need explaining, but it isn't obvious to me, so some figuring out is needed. At ten minute intervals, someone is called into a room that says Registration. I think we're next. Perhaps this is where the form filling happens?

Ah, yes, I am right. Someone emerges from the room and calls out, Eye-reen Tuffrey!

(I don't think the system was clear to the crying woman who went in before me, either, nor to her bewildered looking husband. At least I had a head start, with my confidence-on-entry.)

In we go. ("Should I come with you?" my husband asks. I don't know, because I have no idea what will happen in that room. We play it safe and go in together.) Tiny room, two empty chairs. Sit down. The woman slides in behind the desk.

Nurse? Administrator? No idea. She hasn't introduced herself, or told us what we are doing here.

Only doctors, I have found, unfailingly introduce themselves and explain what their job is.

Utter silence for the next two minutes or so. She looks at her computer screen, types things, looks at the forms lying on her desk (mine?). She doesn't look at us. We look at each other. Should we talk amongst ourselves? Would she notice if we did? I'm glad I'm not alone, because at least in my husband's eyes, I am important.

Finally, Silent Woman looks up and hands me my form to fill in. Including a consent form for "my tissues" to be used for medical research.

"You understand what that means, don't you?" asks Silent Woman.

I smile and nod, yes of course, although in truth I am puzzled because hasn't everything that needed cutting out of me already been cut out and (presumably) incinerated? I sign anyway, and then I spot in the small print that "blood samples" are also tissues, so perhaps I can help advance medical science after all. And at least I did understand that they weren't talking about the tissues in my handbag.

I wonder whether the woman before me has managed to read all this through her tears.

Now we're done and ready for my appointment. Silent Woman insists on taking us to the lift and pressing the Down button, although the one place we would have found with confidence is Radiotherapy Downstairs, courtesy of the clear arrow. And when the lift takes ages to come, we decide to take the stairs anyway, following that arrow. It feels strangely rebellious: not taking the lift = not doing as we're told.

I present myself to the next receptionist and settle down by the tropical fish.

"I think someone is calling you," my husband says after a decent wait.

Yes, now I hear it too, a repeated: Eye-reen Tuffrey? I go off in search of the voice and find its owner around a corner. Probably a nurse, but again I'm not sure: no introduction or explanation. I rush back to my husband, "it's my turn," and he gathers coats, bags, suitcase-on-wheels. Unnecessarily, it turns out, as I've only been summoned to stand on the scales in a far corner, my husband looking rather forlorn, like an overloaded coat stand.

"Weight and height," mumbles Probably A Nurse. I step onto the scales, back turned to the measuring post attached to it. I feel a push against my shoulders. What?! Ah, she's pushed me off, before (not after) offering "Other way!" as an explanation. Oh, I see, turn round. First weight, then height. I should have guessed. Silly patient.

Remembering this now... started with a grin (Ha! Wait until I report this in my blog!) but when I'm actually writing it down, I suddenly have to swallow back the tears. They seem so small and insignificant, all these things. Not worth complaining about. Not even worth mentioning.

And yet that is how it happens, the disintegration of the self, bit by bit. Being called into this strange new alien world, this world that is the radiotherapy hospital, and not being helped to understand how it works. Being made to feel silly because you don't quite understand it.

And that is me, Irene the nurse, who speaks Hospital Language. When I use that language here, ask the receptionists questions, ask the nurses who they are, I am wordlessly put in my place. Don't you worry, dear, is the unspoken message. We know what we are doing. We have an excellent system here. They are polite, these staff; the message is a subtle undercurrent.

It is why I am sometimes tempted to keep my professional badge around my neck when I go for appointments at my own hospital (although I never do that on purpose, but sometimes, when I pop down for an appointment during a day at work, I forget to take it off). When receptionists think that your are a staff member rather than a patient, they treat you differently. With more courtesy and respect.

The last straw is being put into a small clinical room by Probably A Nurse.

"Wait here for the doctor," we think she has said, before going out and closing the door, leaving us without a view or a clue.

We sit down on the hard chairs, confused, staring at the examination bed and the syringe trolley. Five minutes. Perhaps they've put us to wait here, rather than by the lovely fish and the free hot chocolate, so we'll stop causing trouble?

Ten minutes. Hm. 

"I'm going to ask," I say, trying hard to hold on to being someone with a name. Irene is my name.

"Let me do it," says my husband, and off he goes.

He returns with a resigned smile, shaking his head. "They're perfectly friendly," he says. "It's not that they tell you to just wait and be quiet. It's just the feeling you get."

And then, thank goodness, the doctor strides in, sits down on the examination bed, and talks with us (with us! not to us!), restoring me.

None of this registers on the scale of hospital disasters.

Nobody was expressly unkind or unhelpful. I bet the receptionists would have described themselves as very kind indeed. And as for Silent Woman, and Probably A Nurse, well, didn't they just do their job and get the necessary results? Forms filled in, consent obtained, patient weighed and measured and ready for the doctor.

But I do wonder whether a very simple change in attitude would transform the patient experience. Receptionists, I have found, are crucial in helping patients cope with new and worrying situations.

So here, for all it's worth, are my tips for hospital staff. Any staff, but especially those on the front line.

1. Look at your patient and smile. Please. And also at their partner/daughter/friend. Please. I know that's a lot of smiling to be done in a day, but I'm telling you, it makes all the difference. Especially if you are a receptionist.

2. Treat every patient as if they've never been here before and are lost. You'll find out quickly enough if the patient is experienced and not at all lost. Better be safe than sorry (and that's the patient I'm talking about, who will feel un-safe and very sorry if they feel lost. You can help!)

3. Introduce yourself. Introduce your job. Tell the patient why you are seeing them and what you will be doing. You have done this (whatever it is) a thousand times. Your procedures are blindingly obvious to you, but believe me, no procedure is obvious to the uninitiated.

4. Perhaps more important than anything, this: your procedure may be the same a hundred times over; but you will have a hundred different patients, and that turns it into a hundred different procedures. Every patient has a different story. Please remember that. Please see all patients as the unique individuals that they are.

Here is the good news.

One friendly and helpful receptionist, one personable nurse, can transform a patient's day. That could be you.

Imagine that: a hundred patients a day; a hundred transformations. Marvellous.

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