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Doctor, What's Wrong?
Making the NHS Human Again
Sophie Petit-Zeman
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eBook - ePub
Doctor, What's Wrong?
Making the NHS Human Again
Sophie Petit-Zeman
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About This Book
Does your doctor really care about you? Do you have time to care about your patients in the middle of all the red tape? Can we claw back tender, loving healthcare before losing sight of what it is?
The medical machine is spinning out of control. Making the NHS better is about people, not about politics and posturing. It's about recognising that, well or ill, we're in it together.
Being promised we'll be able to choose our hospital tomorrow is cold comfort when fighting to see a doctor today. From the pitfalls of communication to waiting lists, MMR to MRSA, this book discusses things we know of but may know little about; the ins and outs, drivers and obstacles, to treating each other well. The first half is a novel, an engaging story set across doctors' surgeries, cafes, pubs and homes. A story about a woman with a neurological illness who also has depression, her conscientious consultant who worries too much about everything while his GP wife anguishes over MMR, an oncologist with terminal cancer, a hospital manager with a heart, even a love-life. A series of accessible, informative essays then explores the 'big issues' that beset the NHS today, from the political football of choice, to jargon, mistakes and superbugs.
Essential and enjoyable reading for anyone who uses or works in healthcare, this book argues that it can be rescued, become human again, if we all help.
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Part One
Note: Thereās no one in Part One Iāve ever met, nowhere Iāve ever worked or been a patient. Any of that, portrayed as fiction, would be unbelievable.
The main characters
Camilla Green: a social worker, with a nerve and muscle disease
Guy Green: Camillaās husband
Chris Powell: Camillaās neurologist at the Royal United Hospital
Jenny Powell: Chrisās wife, a GP
Graham Crew: Chrisās colleague and friend
Geoff Gerrard: cancer specialist and patient at the Royal United Hospital
Chloe Gerrard: Geoffās wife
Jack Barton: Geoffās colleague, his doctor and friend
Mary Barton: Jackās wife
Sir Robin Roper: Chief Executive of the Royal United Hospital
Walter Grausing: Retired lawyer, Chairman of the Royal United Hospital patientās forum
Jim Billington: Cab driver, whose wifeās cancer is treated at the Royal United Hospital
The way it is
Camilla Green is waiting to see the doctor. Sheās been waiting since just before ten oāclock, and itās 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) isnāt where sheād have chosen to spend the morning. But choice hasnāt featured big in her life lately, all in all.
Itās horrible outside. Rainās pouring from a slate grey sky, sirens wail intermittently as ambulances bring casualties to A&E and somewhere someoneās 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, thereās a television on a metal arm sticking out of the wall. Sheās 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 āthe racketā was giving her a headache; no oneās turned it up since she left and Camilla doesnāt really feel itās her place.
Sheās just asked the receptionist for the second time about the progress of her appointment.
āDonāt worry love, youāve not been forgotten. The doctorās stuck on the ward. Weāre short today because of the bad weather ā thereās one doctor canāt get in so theyāre all doubling up. Tell you what, shall we move you over to see the registrar instead? I canāt promise anything, but he might be quicker?ā
Camilla had taken that option before, and regretted it, mildly.
āTo be honest, Iām not that keen. I know the consultant and itāll be easier to talk to him than start again with someone else, have to explain it all from scratchā¦.ā
āYes love, I know youāre a regular, I recognise you. Itās up to you, but itāll all be in your notes.ā
Camilla wonders whether āitā will be, on past experience, but anyway sheād much rather talk things through with the doctor she knows, especially as heād left her to think about joining a trial last time she was here. āItās OK, thanks. Iāll wait.ā
Sheās written off the day now, made a quick call to work (sheās a social worker, running a team working mainly with young refugees) saying theyāll 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 theyād 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.
Sheās 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 canāt face looking at it before she sees him, not again. Sheās 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 āItās never too late for chiropodyā over and over again and one of a stack of leaflets about incontinence. Sheās 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 ā āThe surgeons have cut off your legs by mistake, but the chap in the next bed needs to buy some slippersā ā and the hospitalās in-house staff magazine.
From that, sheās discovered thereās some crisis going on because the hospital doesnāt 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 hasnāt got if she completes the sentence āMy ideal work/life balance is ā¦ā in not more than fifteen words.
Sheās been scribbling possibilities on the back of one of the incontinence leaflets ā 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 ātotally buggered since getting illā and the only thing thatās 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. Theyād started a list headed: ā173 things to do while waiting to see your doctorā and, at the bottom of the page, had written āRepeat at regular intervals.ā That had made her smile.
Camillaās consultant, Dr Chris Powell, has just arrived. In a small room across the corridor from Camilla heās wondering how heāll 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. Sheās 36; looks younger. Heād forgotten that, though it canāt 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 āthat test,ā 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 thereās 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 thatās how they feel to him.
Chris is tired, probably a bit hungry if only he could tell, but mainly heās drained. Resting his elbows on the table he puts his head in his hands, runs his fingers through his hair. He needs a good nightās 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 havenāt got the willpower to make it happen.
Thereās 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 doesnāt work. Ideally heād wash his hands before seeing patients, even between them on a good day. So this wonāt be one of those.
*
āCamilla Green, Camilla, come on in.ā
As she stands up, Camillaās 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.
āThanks, thank you ā¦. Itās a bit like when the doctor asks you to get undressed ā¦ā Camilla says, nervously, shuffling into his room, clutching coat, carrier bag, handbag, āYou know, how they always leave you alone to take your clothes off even though theyāll see you naked thirty seconds later. So you shouldnāt watch while Iām trying to get into the room either, so inelegantlyā¦.ā
Camilla knew exactly what she meant but wished she hadnāt started. Wished sheād 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 sheās mad.
Chris feels for her. Doesnāt really know what to say. Wonders if sheās already finding even simple movements getting harder.
āHow are you? Oh, and Iām sorry about the wait ā have you been outside long?ā
Camilla feels for Chris, his tired face, and sheās grateful that heās ignored her clumsiness and stupid comments.
āWell, Iām OK. I think Iāve decided to join that trial, if I still can, and if you agree that itās a good idea? Iāve researched it a lot and I want to just a check a few things with youā¦.ā
Now sheās here, with him and her bag of bits of paper, she canāt think where to begin, wishes sheād made a list of questions rather than come with half a ton of paper in a mess.
Shit. This wasnāt just a regular review. Chris vaguely remembered talking last time with Camilla about her joining the Imyelon trial; that heād said she could think it over for a month or so because they wouldnāt be recruiting for a while anyway. Not until the protocol had been finalised ā who was eligible, how theyād run the trial and how long for ā 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 ābullet point overviewsā and āthe heads-up on the latest scoopā that theyād 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 heād said, especially whether Camilla would be eligible. He thought maybe she was too young, or had been ill a bit too long.
āā¦ is that right?ā
āSorry Camilla, what was that?ā 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.
āI was just saying that I was reading about the American trial and how theyād said that Imyelon was OK for people whoād been ill as long as me if they were under 40. Is that right?ā
God bless Camilla. That was right. That was one of the things that had been said in the meeting.
āThatās right, yes. I think if youāre keen to go ahead, it would be the right decision.ā
āThe only thing I really want to ask you about is the whole sort of risk thing, really. Well not risk so much, butā¦.ā
āMmmm?ā 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.
āItās just that I read somewhere how if the trial goes well itāll get the drug through, but if it doesnāt, 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 doesnāt work, or that itās even harmful? Itās that that worries me, not for me really, I mean, being a guinea pigās OK because I know Iām getting iller and I want to give it a go, so in a way Iāve got nothing to lose. But what about the others? Whatās the point in doing this trial to see if it works and then if it doesnāt it just all gets hushed up ā¦?ā
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 itās 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 hadnāt 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 Chrisās knowledge, and based on that, there was little he could say to reassure her. It was a pity that Camilla didnāt seem to want to know more about Imyelon. There was a stack of leaflets somewhere, and snippets of spiel from last weekās visit by corporate man were coming back to Chris: āSome evidence of improvement after only six weeksā¦. Complete remission in 17% of the patients in the Boston/New York trialā¦. Among the men, nothing worse than weight gain, though that can be severe, gynaecomastia, impotence and very occasionally maniaā¦.ā
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 didnāt have to tackle the things that were.
āOK. The first thing to say is thatā¦.ā He paused briefly, wondering what the first thing to say should be. āI know what you mean about guinea pig, but itās really not like that. As you know, weāve 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 ā¦ā (he wondered if he had, hoped he had), āIād normally want to try you on a couple of these, but if youād like to join the trial, Iād certainly support your decision. You do understand that you might not get Imyelon even in the trialā¦.ā
Chrisās account trailed off. Camilla nodded. She knew all this.
āI guess the way to look at it is that youāre 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 Iāve explainedā¦.ā Chris could feel difficulties looming, feared heād been fuelling her doubts.
āOK, 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? Thereās no law that says the drug company has to reveal what doesnāt suit them, or any of it at all, to anyone except a handful of regulators?ā
āI ā¦ā Chris wished heād had a chance to even begin to try and find out which rumblings were true. āThere is certainly some feeling that the process isnāt perhaps as rigorous, as transparent, as it should beā¦.ā
āSo you mean I could do all this and itād be pointless?ā
āWell, I wouldnāt say that, no. First off, in the short term, the drug might help you. And of course if it doesnāt work out that way in the trial youād still have been part of finding out something worthwhileā¦.ā
āBut what about if it helps, but, oh I donāt know, the trial finds that the drug really harms some tiny percent of ...