The way it is
Camilla Green is waiting to see the doctor. Sheâs been waiting since just before ten oâclock, and itâs after one now. Outpatients in the Royal United Hospitals NHS Trust (known by most as the RU, by some as the RUT, occasionally, perhaps unfairly, as the RUNT) isnât where sheâd have chosen to spend the morning. But choice hasnât featured big in her life lately, all in all.
Itâs horrible outside. Rainâs pouring from a slate grey sky, sirens wail intermittently as ambulances bring casualties to A&E and somewhere someoneâs using a drill, its repetitive whining, screeching crescendo cutting through the dull drone of a huge generator in the basement five floors below.
Opposite Camilla, thereâs a television on a metal arm sticking out of the wall. Sheâs now seen three episodes of local news, an hour apart. But only seen them, because the sound was turned down after an elderly lady complained that âthe racketâ was giving her a headache; no oneâs turned it up since she left and Camilla doesnât really feel itâs her place.
Sheâs just asked the receptionist for the second time about the progress of her appointment.
âDonât worry love, youâve not been forgotten. The doctorâs stuck on the ward. Weâre short today because of the bad weather â thereâs one doctor canât get in so theyâre all doubling up. Tell you what, shall we move you over to see the registrar instead? I canât promise anything, but he might be quicker?â
Camilla had taken that option before, and regretted it, mildly.
âTo be honest, Iâm not that keen. I know the consultant and itâll be easier to talk to him than start again with someone else, have to explain it all from scratchâŠ.â
âYes love, I know youâre a regular, I recognise you. Itâs up to you, but itâll all be in your notes.â
Camilla wonders whether âitâ will be, on past experience, but anyway sheâd much rather talk things through with the doctor she knows, especially as heâd left her to think about joining a trial last time she was here. âItâs OK, thanks. Iâll wait.â
Sheâs written off the day now, made a quick call to work (sheâs a social worker, running a team working mainly with young refugees) saying theyâll probably not see her, and is contemplating going down to the cafe for a sandwich. She bought a cup of coffee from the trolley that came round at about 11, but theyâd run out of milk and it was so bitter she only managed to drink half of it before admitting defeat.
Pulling her coat round her, not so much for warmth as for comfort against cross resignation about where her day has gone and numb resignation about what lies ahead, she realises she must have left her book behind, or on the bus, and looks around for something else to take her mind off it all.
Sheâs got a bag full of stuff printed out from the internet about this new drug, the one on trial, to discuss with the doctor, but canât face looking at it before she sees him, not again. Sheâs played the game of wondering what the other people waiting are in for, worked it out to her own satisfaction, read the torn poster that proudly announces âItâs never too late for chiropodyâ over and over again and one of a stack of leaflets about incontinence. Sheâs also got all she can out of an old Sunday supplement, which contained an interesting article about global warming, the last page of which was missing because someone had torn out a voucher on the other side, a copy of Private Eye, which had a surprisingly tough article linked to the latest NHS scandal accompanied by a cartoon of a man in a hospital bed being told there was good and bad news â âThe surgeons have cut off your legs by mistake, but the chap in the next bed needs to buy some slippersâ â and the hospitalâs in-house staff magazine.
From that, sheâs discovered thereâs some crisis going on because the hospital doesnât look set to meet its target of being paperless by 2007, that there were 13 cases of MRSA in the previous six months (good? bad? fiddled figures?) and that if she was on the payroll she could win a trip to Alton Towers for herself and children she hasnât got if she completes the sentence âMy ideal work/life balance is âŠâ in not more than fifteen words.
Sheâs been scribbling possibilities on the back of one of the incontinence leaflets â great for the purpose because the bladder diagrams provide vistas of pink space. Her ideas started out facetious, but have begun to reflect her darkening mood. The last one she wrote was âtotally buggered since getting illâ and the only thing thatâs cheered her up since was, flicking through the leaflet for the third time, seeing that someone else had been using a bladder as a notepad. Theyâd started a list headed: â173 things to do while waiting to see your doctorâ and, at the bottom of the page, had written âRepeat at regular intervals.â That had made her smile.
Camillaâs consultant, Dr Chris Powell, has just arrived. In a small room across the corridor from Camilla heâs wondering how heâll fit in the five people booked for morning clinic before the afternoon lot arrive. Camilla Green: her notes are on top of the precarious pile on his desk and he saw her outside when he came in. Sheâs 36; looks younger. Heâd forgotten that, though it canât be much more than a month since she was last here, and indeed he knows he ought to look through her notes again before he calls her in, remind himself about her.
He hates that, not being able to hold more in his mind about each patient between visits. He knows some of them set so much store by their session with him, come with hope their fears will be eased, their questions answered. He knows because they tell him. Some come hoping for miracles. And when they ask about the results of âthat test,â and see him rifling through the notes, wondering what test, what result, he knows that what they want is a personal touch, and sometimes, when thereâs time, it makes him sad. He wonders if they feel like an army of ill ants parading past him on a conveyor belt, because a lot of the time these days thatâs how they feel to him.
Chris is tired, probably a bit hungry if only he could tell, but mainly heâs drained. Resting his elbows on the table he puts his head in his hands, runs his fingers through his hair. He needs a good nightâs sleep, time for some exercise, a bit less alcohol. Not that he drinks too much, not at all, but he always has a glass or two with Jenny when he gets home. A day without would be a good idea, but they just havenât got the willpower to make it happen.
Thereâs a man with autism being seen in the room next door, banging his head against the wall. Chris knows just how he feels, rummages in his briefcase for a couple of aspirin, which he swallows without water because the tap doesnât work. Ideally heâd wash his hands before seeing patients, even between them on a good day. So this wonât be one of those.
*
âCamilla Green, Camilla, come on in.â
As she stands up, Camillaâs coat slips off her shoulders, and grabbing at it she knocks over the carrier bag on the chair beside her, printouts from the internet spilling onto the floor. She feels like an old bag lady as she bends down to gather them up, embarrassed that Dr Powell is watching her, waiting, holding open the door to his room.
âThanks, thank you âŠ. Itâs a bit like when the doctor asks you to get undressed âŠâ Camilla says, nervously, shuffling into his room, clutching coat, carrier bag, handbag, âYou know, how they always leave you alone to take your clothes off even though theyâll see you naked thirty seconds later. So you shouldnât watch while Iâm trying to get into the room either, so inelegantlyâŠ.â
Camilla knew exactly what she meant but wished she hadnât started. Wished sheâd said almost anything else rather than draw yet more attention to her ungainly entrance and then blather on about taking her clothes off. He must think sheâs mad.
Chris feels for her. Doesnât really know what to say. Wonders if sheâs already finding even simple movements getting harder.
âHow are you? Oh, and Iâm sorry about the wait â have you been outside long?â
Camilla feels for Chris, his tired face, and sheâs grateful that heâs ignored her clumsiness and stupid comments.
âWell, Iâm OK. I think Iâve decided to join that trial, if I still can, and if you agree that itâs a good idea? Iâve researched it a lot and I want to just a check a few things with youâŠ.â
Now sheâs here, with him and her bag of bits of paper, she canât think where to begin, wishes sheâd made a list of questions rather than come with half a ton of paper in a mess.
Shit. This wasnât just a regular review. Chris vaguely remembered talking last time with Camilla about her joining the Imyelon trial; that heâd said she could think it over for a month or so because they wouldnât be recruiting for a while anyway. Not until the protocol had been finalised â who was eligible, how theyâd run the trial and how long for â and ethics committee approval had come through. And it was only last Friday when his department had gathered to meet the dreadful man from NeuroProtek who was co-ordinating the three UK centres in the trial. A man who wore a tie covered in green cartoon brains, smelt of cigarette smoke and hair gel and offered them âbullet point overviewsâ and âthe heads-up on the latest scoopâ that theyâd finally decided to start enrolling patients.
Chris had tried hard to forget Imyelon man and his unappealing manner, but wished he could remember more about what heâd said, especially whether Camilla would be eligible. He thought maybe she was too young, or had been ill a bit too long.
â⊠is that right?â
âSorry Camilla, what was that?â Chris was thankful for the drill that had started up again outside, for the chance it gave him to walk across and close the window, buying a few seconds composure time and an excuse for not having heard her.
âI was just saying that I was reading about the American trial and how theyâd said that Imyelon was OK for people whoâd been ill as long as me if they were under 40. Is that right?â
God bless Camilla. That was right. That was one of the things that had been said in the meeting.
âThatâs right, yes. I think if youâre keen to go ahead, it would be the right decision.â
âThe only thing I really want to ask you about is the whole sort of risk thing, really. Well not risk so much, butâŠ.â
âMmmm?â Chris leaned back slightly, folded his arms. He wanted to make sure Camilla knew she had all the time she wanted to ask questions, but as soon as he thought that, he remembered about all the other people waiting to see him just the other side of the door.
âItâs just that I read somewhere how if the trial goes well itâll get the drug through, but if it doesnât, if it turns out not really to work, the people who produce it can just choose not to make whatever gets found out public. Is that true? Can they hush it up if it doesnât work, or that itâs even harmful? Itâs that that worries me, not for me really, I mean, being a guinea pigâs OK because I know Iâm getting iller and I want to give it a go, so in a way Iâve got nothing to lose. But what about the others? Whatâs the point in doing this trial to see if it works and then if it doesnât it just all gets hushed up âŠ?â
Camilla had done her homework, that was clear, and not just about whether Imyelon might make her constipated or give her blurred vision.
Chris hardly ever has time to read a newspaper these days, but itâs been impossible to escape all the stuff in the media about that anti-depressant, about how it worked OK for some people but could have gruesome side-effects and was hard for others to stop taking it. The company that made it had apparently known about this, to some degree at least, but hadnât been obliged to tell anyone. Drug regulators were slowly coming out of the woodwork to say that the testing system was somewhere between dodgy and disgraceful.
That was about the extent of Chrisâs knowledge, and based on that, there was little he could say to reassure her. It was a pity that Camilla didnât seem to want to know more about Imyelon. There was a stack of leaflets somewhere, and snippets of spiel from last weekâs visit by corporate man were coming back to Chris: âSome evidence of improvement after only six weeksâŠ. Complete remission in 17% of the patients in the Boston/New York trialâŠ. Among the men, nothing worse than weight gain, though that can be severe, gynaecomastia, impotence and very occasionally maniaâŠ.â
Chris chased from his mind an image of enormous men with pendulous breasts going off sex and off the rails, and tried instead to remember what had been said about side-effects in women. Not that this was apparently worrying Camilla. He wished he didnât have to tackle the things that were.
âOK. The first thing to say is thatâŠ.â He paused briefly, wondering what the first thing to say should be. âI know what you mean about guinea pig, but itâs really not like that. As you know, weâve not got a good drug for your condition yet, at least not one that slows progression, though for someone of your age and stage there are some options which can help to relieve the symptoms. As I mentioned last time we met âŠâ (he wondered if he had, hoped he had), âIâd normally want to try you on a couple of these, but if youâd like to join the trial, Iâd certainly support your decision. You do understand that you might not get Imyelon even in the trialâŠ.â
Chrisâs account trailed off. Camilla nodded. She knew all this.
âI guess the way to look at it is that youâre a guinea pig in as much as we need to know how good Imyelon is, and the only way we can find out is to test it, like Iâve explainedâŠ.â Chris could feel difficulties looming, feared heâd been fuelling her doubts.
âOK, I get that, I understand. But is it true that I could go through all this and any bad stuff that comes out of the trial will just get hushed up? Thereâs no law that says the drug company has to reveal what doesnât suit them, or any of it at all, to anyone except a handful of regulators?â
âI âŠâ Chris wished heâd had a chance to even begin to try and find out which rumblings were true. âThere is certainly some feeling that the process isnât perhaps as rigorous, as transparent, as it should beâŠ.â
âSo you mean I could do all this and itâd be pointless?â
âWell, I wouldnât say that, no. First off, in the short term, the drug might help you. And of course if it doesnât work out that way in the trial youâd still have been part of finding out something worthwhileâŠ.â
âBut what about if it helps, but, oh I donât know, the trial finds that the drug really harms some tiny percent of ...