in defence of a national sickness service

7/29/2019 In Defence of a National Sickness Service

1/5

doi:10.1136/bmj.39066.541678.B72007;334;19-BMJ

Iona HeathIn defence of a National Sickness Service

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2/5

observations

Whats happened?

The NHSs ill fated computer project hasmade the news again, this time over the gov-ernments climbdown from putting medicalrecords on a national database.

With public confidence in the ongoing20bn upgrade of NHS computer systemsright down there with the governmentshandling of Iraq, the news that electronicmedical records would not, as originallyplanned, be automatically uploaded to acentral computer spine was mothersmilk to British newspapers. The security ofthe sinister sounding spine was the mainfocus of press concern. Do people want torisk others finding out they were a teenagebed wetter, or once had anal warts?

Under the initial proposals, summarypatient recordsincluding medicines taken,adverse reactions, and allergieswere tobe made available for access nationally byGPs and hospitals. Under pressure, healthminister Lord Warner produced a report theweek before Christmas, promising patientsan opt out. This softened approach would

also allow patients to access and amendonline records before they are sent to thenational database.

What the papers say

The Guardian, which had been running acampaign against a compulsory nationaldatabase of medical records, showedadmirable self restraint on hearing of theclimbdown. Instead of going with it wasthe Guardianwot won it headlines, it wasalmost downcast.

In a comment article, Ross Anderson, pro-

fessor of security engineering at CambridgeUniversity, warned that a lot more was atstake: Dont break out the champagne yet.The [Warner] report was cleverly spun; hid-den in an appendix is confirmation that youcan opt out of the summary care record, butnot the detailed care record.

Over the next few years, detailed carerecords (the whole medical record, whichwill replace GP and hospital records) will beuploaded to a regional hosting centre run bya government contractor. The chief medicalofficer will eventually be in control of the

lot. The government is not offering such aneasy opt-out here, Anderson warned, and

the week in medicine

Medcal record: are patet

ecret up for grab?there will be plenty of opportunity to breachpatients privacy.

He said: Once the records of millions ofpeople are on one system, to which a courtwill give access without GPs knowledge, thepolice will be sorely tempted. They alreadycollect all sorts of operationally useful data:they have had access to opiate prescrip-tions for years, and theres been a steadyrise in their requests for journey data fromLondons Oyster card [electronic ticketing]system.

Christina Odone, in the Telegraph, contin-ued with the thin end of the wedge theme.She urged readers to write to their GP inorder to opt out of the latest and maddestdrive to centralisation.

Otherwise, our medical recordsthe sex-ually transmitted disease we kept a secret,the addiction to sleeping pills we overcame10 years ago, the mental breakdown at uni-versitywill be loaded on one mammoth,central database.

In Odones opinion, centrally availableelectronic patient records would spell an

end to privacy. What about all those mil-lions of NHS employees who would haveaccess to your data? And this is before weget started on the hackers. As one NHSworker who emailed the Todayprogrammeconfirmed, the NHS is as leaky as a sieve.Something as big as the NHS centralisedsystem is just the kind of headline-grabbingtarget hackers love to tackle, she wrote.

The Timesfound ample grist for the col-umnists mill. Alice Miles, in an article omi-nously titled Sending a shiver down myspine, was almost nostalgic that patients

experiences of disappearing notes couldsoon be a thing of the past.

It has always been part of the NHS expe-rience: turn up for long awaited outpatientappointment; consultant doesnt know yourname, no one has given him your notes.Somewhere in the bowels of the hospitala porter is wheeling them around, spillingfrom bulging envelopes, with dozens ofother patient records packed on to a trolley.They might get there, they might not, shewrote.

A little patience, please, said aGuardian

leader. At least the government has shownsome signs of having listened. When the

QUOteS OF the week

Some GPs aretaking larger profitsfrom their practices.That was never theintention of thenew contract. Imcertainly surprisedby individual GPs onover 200 000.

Health secretary Patricia Hewitt

Patients dont need specialists to tellthem they are fighting fit, most will knowthis themselves and those who want extraadvice and reassurance would get this

from their local GP.The current system needs a

complete rethink; it is like asking aMichelin-starred chef to cook microwavemeals all day, a waste of their skills andresources.National Clinical Director for PrimaryCare Dr David Colin-Thom on the planto scrap routine consultant check-upsfollowing elective surgery

The irony of the one-size-fits-all proposalbeing suggested by the government isthat patients will lose the right to seewhom they choose to see, unless they

are prepared to pay for the privilege. Thisflies in the face of the governments ownchoice agenda. It is time thegovernment listens to those who know theNHS bestits doctors and patients, ratherthan those stuck in the ivory towers ofpolicy-making.Dr Jonathan Fielden, Chairman, BMAConsultants Committee, quoted in theGuardian

From Christmas onwards, I have beenstanding on my head.Expectant mother Antje Grimm, one ofmany heavily pregnant Germanwomen said to be trying to delaygiving birth until 1 January 2007,because a new lawto boost theflagging birth rate in Germanywillmean a difference of tens of thousandsof pounds in benefits

Compiled by Rebecca Coombes,

journalist, London

[email protected]

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JOhnStillwell/PA/emPicS

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3/5

Quick backgroundin 1998,children began testing positive forHIV in a major hospital in Libyassecond-largest city, sparking ahealth crisis. An investigationfound the infections occurred in anarea where many Bulgarian nurseswere assigned, and Libyan dictator

Qaddafi accused health care workersof acting on the orders of the CIA andIsraels Mossad. So far, so ridiculous.A Libyan court eventually convictedthe six health professionals ofintentionally infecting the children,despite extensive testimony that thatthe virus predated the nurses arrivaland was likely spread through theuse of contaminated needles.americablog.blogspot.com

Weve heard yet again that theLibyan courts have upheld thedeath sentence of the Bulgariannurses and Palestinian doctor who

were convicted of deliberatelyinfecting 426 Libyan children withthe HIV virus. Through the miracle ofmagnification we can actually honein on the real culprits of this debacle. . . At 500X we have the naked HIVvirus; at 2500X we have the HIVvirus in much greater detail and one

can see how the virus envelope isespecially evolved to allow it to eludethe human immune system; [and] at50 000 X we have the worlds mostwretched low life, in a golden muumuu. This pathogen will sanctionthe execution of trained healthprofessionals.talesfromthewomb.blogspot.com

Such madness does nothelp mein any way to want to help peoplein the form of foreign missions.Basically, if thats the way theyregoing to treat people, they can keeptheir HIV epidemic and deal with it

themselves. What went wrong is thatthey went to a country not knownfor its human rights, or fair justicesystem.allnurses.com/forums

The prestigious journal Naturepublished an unusually strongly-

worded denunciation of Libyasattempt to scapegoat innocentpeopleImagine that five Americannurses and a British doctor havebeen detained and tortured in aLibyan prison since 1999, and thata Libyan prosecutor called at theend of August for their execution. . . on trumped-up charges ofdeliberately contaminating morethan 400 children with HIV in 1998.Meanwhile, the internationalcommunity and its leaders sit by,spectators of a farce of a trial, leavinga handful of dedicated volunteerhumanitarian lawyers and scientists

to try to secure their release. majikthise.typepad.com

A Libyan Court sentenced 6Bulgarian medics [sic] to death. Andthats because Gaddafi wanted theseunfortunate guys to be bargainingchips in exchange for:the convicted Pan Am Flight 103bomber Megrahi, serving a lifesentence in a Scottish jail . . . to bereleased; and,US$2.7bn compensation . . . paidto Libya for the care of the HIV-infected patients (the exact sumoffered by Libya in compensationfor the 270 lives lost in the 1988Lockerbie bombing).Well, isnt that kidnap for ransom?www.alburbohol.net/blog

Compiled by Balaji Ravichandran,editor, [email protected]

whAtS On the web libYAn hiv deAth SentenceS

observation

first information is uploaded in trials nextyear there will be clear, clinical advantages,but much more needed to be done to quellfears. The sealed envelope technology, forexample, which allows patients to restrictaccess to parts of their record, is still at the

planning and development stage, accordingto the Department of Health.Seeking to look at both sides of the story,

the Independentran a Q and A: The bigquestion: should we fear plans to put medi-cal records on a national database?

Ministers think these risks have beenoverplayed. They believe that the interestsof the majority of elderly vulnerable patientswho have most to gain from the new systemare being drowned out by a vocal minorityworried about the privacy aspects and thethreat to confidentiality, it said.

What happened next

Chancellor Gordon Brown will soon have todecide the fate of the NHS computer system.Dont make it your Waterloo, warned theGuardianin a comment article. The systemis showing all the classic symptoms of turn-ing into a software project disaster. The con-voy is heading for the rocks. Gordon Brownwill have to decide soon whether to scrapthe central database and build safe systemsthat will work. If he calls it wrongas withBlair and Iraqit may well be the decisionfor which he is remembered, it declared.Ra coos, jouras, loo

[email protected]

BMJ| 6 JANUARY 2007 | VolUMe 334 17

somethg abg a the nHscetraledytem jut thekd of headle-grabbg targethacker love totackleChristina odn,

Daiy Tgraph

PhOtOS.c

Om

Paper record: wll we m them?

http://www.alburbohol.net/bloghttp://bmj.com/http://bmj.com/http://bmj.com/http://bmj.com/http://www.alburbohol.net/blog


4/5

observations

I was diagnosed with HER2 positive breastcancer in August 2005. Before my diagnosis,I had little knowledge of the modern manage-ment of breast cancer and, like many patients,used online resources for information. TheBreast Cancer Care website was running acampaign to make Herceptin (trastuzumab)available to all HER2+ women and I signedup. I simply could not understand from thedata presented on the website and in the

media why such an effective agent shouldbe denied to women who, if they relapsed,would receive it anyway. The logic seemedflawed. I wrote letters to everyoneboth pri-mary care trusts (PCTs) in the area, the chairof policy at the Cancer Network, my memberof parliament, the prime minister, the chiefexecutives of the strategic health authorityand the hospital trustasking when and ifthe drug would be made available to me andother HER2+ women.

In the meantime, I was contacted by theSunnewspaper, whose health editor was

championing the Herceptin campaign. Shewas interested in my storyI was both a doc-tor and a cancer victimand ran an articleabout my case. The next day the womenssection was devoted to breast cancer. Itincluded an emotive piece showing photo-graphs of a number of women with HER2+breast cancer, one of whom would die if thedrug were not made available. But overallthe issues were covered fairly. After this pub-licity I was asked to appear on the morningtelevision programme, GMTV, to talk aboutHerceptin. But as this was very early on in

my chemotherapy, I did not feel emotionallyup to discussing the issues in person.

medicine And the mediA

sucked to

the Herceptmaeltrombras ar pa a

oorJae Keda arroy

sap g ur o a

a sar apagg

o g prsr hrp. is

s a pas sg s

ra ar o r o?

The Herceptin campaign rose to feverpitch as several women took their PCTsor trusts to court. Articles appeared almostdaily in the press and featured on radio andtelevision. I began to feel that if I did notreceive this drug then I would have very

little chance of surviving my cancer. At thisstage I received replies to my various let-ters. A representative from the Departmentof Health replied and was sympathetic, butstated that the drug could not be made gen-erally available until it was both licensedfor use in early breast cancer and approvedfor this by NICE (the National Institutefor Health and Clinical Excellence). I wasassured that the health secretary, PatriciaHewitt, had requested the drug to be fasttracked by NICE, subject to licensing. Therepresentative explained that the drug mightbe available to me in exceptional circum-stances but this was a decision for the localPCT, and the health secretary had statedthat PCTs should not refuse to fund Her-ceptin solely on groundsof cost. They alsoemphasised that in theinterim period betweena drug being licensedand NICE guidancebeing available . . . theNHS should not refuseto fund specific drugsor treatments simply

because they have notyet been appraised byNICE.

The Cancer Networksuggested that I ask myoncologist to submit arequest for exceptionalfunding as Herceptinwould not be availablegenerally until the nor-mal process of approvalhad occurred and thiscould take some time.

Their letter was copiedto the PCT. The PCTproduced a standardletter stating that thedrug would be availableto women with earlybreast cancer in 9-12monthstoo late for mebut I could havemy individual case considered by the PCTon an exceptional named patient basis.

Throughout my treatment the health edi-tor of the Sunkept in contact by telephoneand emphasised that if I experienced dif-

ficulty obtaining Herceptin they would bewilling to push on my behalf by contact-

ing the relevant PCT to discuss the issuefurther. However I was feeling demoralisedby this stage and I decided to take no furtheraction until I had completed my chemother-apy, when I hoped some of the questionsabout the drug would have been clarified.

After finishing chemotherapy, I discussedHerceptin treatment with my oncologist.He expressed concerns about the long termcardiac effects which had emerged in studiesbut had received very little attention eitheron the Breast Cancer Care website or fromthe media. More careful analysis of the 50%benefit which had been widely quoted in themedical and non-medical press (www.dh.gov.uk/assetRoot/04/12/63/84/04126384.pdfand Pharm J2005:274:605), and fixed in mymind, actually translated into a 4-5% benefitto me, which equally balanced the cardiacrisk. So I elected not to receive the drug andwill be happy with this decision even if mytumour returns.

This story illustrates how even a medi-cally trained and usu-ally rational womanbecomes vulnerablewhen diagnosed ashaving a potentiallylife threatening illness.I believe much of theinformation about theuse of Herceptin inearly breast cancer was

generated artificially bythe media and industry,fuelled by individualcases such as mine.

Having been suckedinto this maelstrom, Ihave concerns for theindependent role ofNICE and the PCTs,onto whom everyoneseemed to load the finaldecision about availabil-ity of funding for such

drugs in exceptionalcases. What makes anexceptional casepublicity in the Sun,threats of court action?How are we to avoidthis madness happening

with future agents? I dont know the answer,but as a vulnerable person caught up in themiddle of these events, I hope that a bettersolution can be found for patients and forour health service.Ja ka s a osua aaoogs, Qu

eza hospa, kgs ly nhS [email protected]

18 BMJ| 6 JANUARY 2007 | VolUMe 334

dRPmARAzzi/SPl



5/5

observations

It has become commonplace to

describe our current healthcare

arrangements as a National Sickness

Service and to call for a transformation

to a genuine National Health Service

that would prioritise prevention

above cure. This is the sort of facile

sloganeering, beloved of politicians

and policymakers, that systematically

ignores the implications of the rhetoric.

The proposed transformation is already

shifting the focus of health care away

from the needs of the sick towards

those of the well, from the old to the

young and from the poor to the rich. Is

this really what we want or need?

Societies fail whenever someone

who succumbs to a treatable illness

causing pain, suffering, or premature

death is unable to avail themselves

of effective treatment because of

the lack of money to pay for it. In the

context of heightened social solidarity

immediately after the second world

war, UK society set out to ensure that

this situation would not arise againthrough the creation of the NHS. In

1948, Aneurin Bevan expressed this

resolve: We ought to take pride in

the fact that, despite our financial and

economic anxieties, we are still able

to do the most civilised thing in the

worldput the welfare of the sick in

front of every other consideration.

The proposal to move away from a

National Sickness Service undoes this

over-riding commitment to the welfare

of the sick.

Relieving suffering is an enduringmoral imperative; the contemporary

obsession with maintaining

health is part of the persistent, but

recurrently illusory, human dream of

controlling the future. The present

day manifestation of this dream is

mediated through science, with the

new holy grail being a long life, devoid

of suffering, and ending in extreme old

age with rapid decline and death, also

miraculously devoid of suffering. The

pretence that this is deliverable by a

reconstituted National Health Service

betrays all those who are suffering here

and now.

Those who promulgate the dream

vastly underestimate the role of luck

and contingency in human health. They

want to believe that health is a simple

opposite of sickness, that it is in the

gift of medical science, and that it can

be delivered to order. Health becomes

a commodity like any other, and it is

clear that the rhetoric is underpinning

the rapid commercialisation of

healthcare and the exploitation of

sickness and fears of sickness for the

pursuit of profit. Doctors are colluding

with politicians and journalists in the

systematic exaggeration of the power

of preventive medicine, with the

dangerous and misleading suggestion

that more can be done to promote

health through reconstituting the

health service than through reforming

society. Despite all the emphasis on

diet and exercise, the most powerful

determinants of health remain wealth

and happiness. The more equaldistribution of hope and opportunity

achieves more than the life long

prescription of cholesterol lowering

drugs and the stapling of stomachs.

The emphasis on lifestyle risk factors

for health implies that those who have

had no luck are somehow morally

deficient. This is both unnecessary and

vindictive.

None of this is to deny the

importance of preventive health

interventions within clinical

encounters, where there is muchthat can and should be done. Recent

smoking cessation interventions

have been very successful but, even

with smoking, more can be achieved

through taxation and by minimising

smoking opportunities at work and in

public places than through cajoling

individuals. Immunisation campaigns

and similar public health interventions

have been hugely beneficial, but the

current trend to define risk factors for

ill health as diseases in themselves

and therefore to define disease on the

liFe And deAthioa Heath

A rosu nhS a prorss pro of sss ou fa a os o ar o

i defece of a natoal scke servce

BMJ| 6 JANUARY 2007 | VolUMe 334 19

Doctor arecolludg wthpoltca ad

jouralt the ytematcexaggeratoof the powerof prevetvemedce

basis of a biometric number rather than

an understanding of suffering is deeply

worrying and is actively turning people

into patients.

A National Health Service committed

to prioritising the prevention of

sickness above its treatment would

accelerate the pursuit of biometric risk

factors for this or that disease and the

development of statistically effective

treatments for each one in turn. This

process legitimises investment in

the wholesale drug treatment of

healthy people and the increasing

costs of this begin to pose a very real

threat to the provision of universal

healthcare systems that are available

and accessible to all. No universal

healthcare system, funded through

taxation, can possibly pay for the

pharmaceutical treatment of all risks

to health. An excessive and unrealistic

commitment to prevention of sickness

could destroy our capacity to care for

those who are already sick; everyone,

in time, must become sick and die.One of the ambitions of preventive

health care is that it will reduce the

gap between rich and poor, but health

inequalities reflect wider societal

inequalities and cannot be solved by

a health service operating within a

persistently unequal society. As Peter

Skrabanek asked many years ago,

why does poverty matter only when it

creates illness and disease? Why are

we not appalled by poverty because

it is cruel, demeaning and unjust

long before it manifests itself as illhealth? Through recent advances in

psychoneuroimmunology, we begin

to understand how the chronic psycho-

social stress of finding oneself at

the bottom of societys pile leads to

compromised immunity, disordered

metabolism, and premature disease.

The primary solution should not be

medication but a genuine commitment

to fairness and justice in a humane

society.

Iona Heath is a general practitioner,

London [email protected]


in defence of a national sickness service

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