The Growth of the Patients’ Movement

The last decade and a half has seen a considerable increase in the criticism of experts and the assertion of the rights of clients (whether they be individuals or communities) not to surrender their autonomy to technocrats.

Medicine has not been immune from this process, and the conglomeration of forces which assert the patient’s independence, or challenge established modes of practice, can be referred to as the patients’ movement.

One of the prime moving forces behind the patients’ movement has been the women’s movement, and women’s health is therefore the area in which the campaign is most well developed.

Two strands of the women’s movement come together to create the concern with health. One is the recognition, within the male doctor/female patient relationship, of a relationship of dominance shaped by patriarchy. This relationship is not rendered any the less patriarchal by the substitution of a woman in the doctor’s role, if that woman merely plays out the role that was shaped by patriarchal assumptions and that she was taught to play. The woman doctor then becomes, in that relationship at least, an ‘honorary man’. Nor can the analysis of the relationship as patriarchal be repudiated by asserting that parents may well be men, since evidence exists of a difference in the way that men and women are treated in the doctor/patient relationship, for example a greater willingness to label women as ‘hysterical’. Many feminists would, in any case, broaden the message of the women’s movement from a specific concern with the oppression of women to a concern with the power relationships that were shaped by men, embody men’s values and embody competitive, authoritarian principles. The patronising nature of the doctor/patient relationship would, for them, be a feminist issue, whether or not women suffered dispro­portionately.

The second health strand of the women’s movement arises from the concern of the movement with fertility control. Fertility control is essential to women’s control of their economic and social lives and is therefore an issue of economic liberation as much as it is a health issue. It centres on the right to abortion and family planning, and therefore manifests itself as a demand firstly for services in those areas and secondly for the right of women to be the controlling customer rather than the passive patient within those services. It is inevitable that these essentially economic demands should broaden into claims for control in other areas of health care, where the patient may equally assert a ‘controlling customer’ position, and also into a general concern with the quality of the obstetric, gynaecological and family planning services.

These two health strands of the women’s movement interweave to create the women’s health movement, characterised by a concern with the way in which the health service specifically affects women, coupled with concern about power relationships in health care.

Alongside the women’s health movement, and to some extent fuelled by it, are organisations which are not explicitly feminist but which share the concern with power relationships. Chief amongst these is the Patients’ Association.

The Patients’ Association was founded in 1963, partly as a result of the thalidomide tragedy and partly as a result of reports about unethical experiments on patients. In its recruitment leaflet it claims that its campaigns have ‘led or contributed to action in such areas as the appointment of an NHS Ombudsman, a code of practice for the medical profession in using patients for teaching, improved hospital visiting hours, and improvements in drug safety’. One of its former secretaries, Jean Robinson, is one of the Crown nominees on the General Medical Council.

The Association provides an advice service for individuals as well as campaigning on general issues. It has produced leaflets on the rights of patients, on changing doctors, on going into hospital, and on using the NHS, and a leaflet entitled ‘Can I insist?’. It has also produced two books, entitled Self-Help and the Patient and A Patient’s Guide to the NHS.

It describes itself as campaigning for better health services. Its main campaigns have been in the field of patients’ rights and the need to take consumer satisfaction into account in service planning.

The Patients’ Association, and the other voluntary organisations, in turn influence and stimulate the official patients’ watchdogs, the Community Health Councils.

CHCs originated in the 1975 NHS reorganisation. They cannot in any way be said to represent a well thought out development, or even a deliberate one. The 1970-74 Tory government had produced a plan for reorganisation of the NHS which was heavily criticised as excessively undemocratic and managerially oriented. The concept of a consumer watchdog, the Community Health Council, was grafted on as a sop to this criticism. The Labour Party took office in February 1974, with the new structure due to be implemented on 1 April 1974. Reluctantly Barbara Castle concluded that it was too late to delay implementation.

The CHC is not a democratically elected body, being partly chosen by local authorities and partly by voluntary organisations. Nor does it have any formal power, other than the power to receive information and to be consulted. Its power derives entirely from the influence it is able to bring to bear, its perceived legitimacy as a watchdog, and the strength of the case it is able to make.

Many CHCs, however, have been able to bring new ideas to light and to be a potent force for change in the NHS, although it must be recognised that many have had only a limited impact. The personality and politics of the CHC Secretary seem to have been more important than those of the members in determining the behaviour of the CHC, so that what started out as an attempt to graft democracy on to a technocratic structure has evolved into a system of licensed health campaigners employed by the NHS.

The development of a patients’ movement within the voluntary and statutory sector was matched by growing academic criticism of the practice of medicine. Much of this criticism derived from the growing academic specialism of medical sociology. However, the most radical criticism came from Ivan Illich, who applied to medicine his general criticism of the self-defeating complexity of modern society. He argued that medicine removed the power of individuals and communities to cope with their own problems of illness and health and to arrange their own caring mechanisms. Although few accepted this critique in toto, many acknowledged it as an important strand of argument in resisting the power of the technocrats.

The Response of the Medical Profession

It is extremely hard for the medical profession to visualise itself in the role of a potential oppressor of its patients. The centrepiece of medical ethics is the concept that an obligation to the patient is the prime motivator of a doctor’s behaviour. This ethic of service subordinates the interests of the doctor to the interest of the patient, and therefore the patient needs no protector, since doctors are themselves the protectors of their patients. Those who assert a conflict of interest between doctors and patients must therefore have some hidden motive – they must be part of a conspiracy to do doctors down. Or alternatively they must have misunderstood. They must not have appreciated the fact that doctors are doing their best, constrained by inadequate time, inadequate resources and the limitations imposed by other components of a hostile world.

Were it to be conceded that there is a conflict of interest between doctors and their patients one of the mainstays of the status and authority of the doctor – the service ethic – would suffer a major blow. How can people be engaged in altruistic service of the community if the community needs to organise to protect itself against them? If people are not engaged in the altruistic service of the community, how can the community accord them the total trust which allows it to accept their opinions unquestioningly? Or, to put it the other way round, if society does not accept doctors’ opinions unquestioningly, how can it be said that it accords the profession total trust? If the community does not, or cannot, accord doctors total trust, how can it accord them the complete autonomy in the organisation of their work which it currently grants them? If it cannot accord doctors total trust how can it accord them a mystical status? If it cannot accord them a mystical status must it accord them the high social status that it currently accords them? If they have no mystical status need they be paid as much?

The patients’ movement raises issues which strike at power and money. It may be that they do not immediately threaten autonomy or pay. But they certainly strike at the roots of that autonomy and pay. On those grounds alone the medical profession would have reason to resist the very concept of the need for a patients’ movement.

It is also important to ask ourselves how doctors view their patients. The service ethic places the interests of the patient perpetually above the interests of the doctor. The patient therefore becomes the controller of the doctor’s life. The hospital doctor is never free of the call of the bleep, nor the GP of the telephone. The bleep or telephone may go as the doctor is about to start a meal, is about to go to sleep, has just gone to sleep, or is five minutes away from the end of an on-call period and about to take the family away for the weekend. There is no more horrible sound than the bleep at 8.55 am on the Saturday morning of one’s weekend off, or at 5.25 pm on the afternoon before a planned evening at the theatre. But both must be obeyed. No worker hates the foreman more than the doctor hates the bleep.

When asked to contemplate a possible conflict of interest between patients and doctors, the doctor is more likely to consider the representative of patients to be the bleep rather than the Patients’ Association Secretary. The patient may well be perceived as the oppressor.

Doctors moan and grumble amongst themselves about patients. They grumble at their unreasonable demands upon the doctor’s time. They grumble about their failure to express the symptoms clearly, their failure to mention important details of their failure to take the treatment.

In part that moaning and grumbling reflects the reality of a bleep-controlled life. The most unreasonable of patients become the archetype. The patient who came to the Casualty Department saying that he couldn’t bother his own doctor at that time of night is a legend.

Even if doctors did not actually feel oppressed by their patients it would be necessary for them to grumble and moan and pretend that they were oppressed in order to give substance to the service ethic. The moans and grumbles are therefore ideologically magnified.

We must remember the Laager mentality which the medical profession acquired in its process of historical ascendance by professionalisation. All external criticism adds to that mentality. Finally, it must not be forgotten that the historical ascendance of the profession was from a situation where physicians were the domestic servants of the rich.

Add these threads together and we can see the medical profession’s perception of the patients’ movement. A group which oppresses doctors on an individual basis is now organising in order to provide mutual and organisational support to make the oppression more effective, and is allying with the many enemies which surround the profession in order to erode its autonomy and pay, and roll back the achievements of the last 150 years.

This perception is at odds with the patients’ perceptions of themselves as powerless victims of a system which demands that they surrender their individuality and autonomy to well paid professionals in return for the essential, possibly life-saving, services over which those professionals maintain a monopolistic control and which they only supply on their own terms. These two perceptions are so much at variance with each other that the profession and the patients’ movement exist in a state of mutual incomprehension, in which the position of the other side is so contrary to one’s own perception of reality that it must either be psychotic or a screen for an ulterior purpose.

Humane Treatment

The demand for humane treatment was first coherently advanced by the women’s health movement in respect of ‘cattle market’ antenatal clinics. The complaint was that, in order to see as many patients as possible in as short a time as possible with as few staff as possible, the antenatal clinic had been turned into an efficient machine for processing women without regard to their feelings of humanity.

Women are exhorted to attend antenatal clinics and are led to believe that failure to do so is irresponsible and likely to damage their baby, although the evidence for this is actually somewhat tenuous. The clinics are usually centralised so that long journeys must be made, are timed to suit the convenience of providers rather than of attenders, and are likely to involve long delays. Women may have to arrange the care of other children and yet crèche facilities are not provided at the clinic. Women may find it difficult to cope with such arrangements for what is, after all, a precautionary screening measure connected with a normal physiological activity in a healthy person. If so they will be held responsible in phrases like ‘Social class 5 women neglect their antenatal care and have high perinatal mortality rates’.

At the clinic women tell of long waits and of poor communication. A not untypical experience would be for a woman to be kept waiting for an hour or two, then to be taken into a cubicle and told to undress, and then left lying there for a further period until a doctor comes in, examines her, takes some blood, writes her notes and then leaves the cubicle without saying anything.

This situation is a cross between a cattle market and a very slow conveyor belt. The development of this argument in respect of antenatal clinics led on to similar criticisms of other areas of health care. Long waiting times in out-patient clinics or in general practice surgeries, coupled with the treatment of the patient as a machine to be put right rather than as a person, were the essential complaints.

The response of doctors to such complaints has been to argue that inhumane treatment results from denial of resources. Doctors are denied the time to talk to their patients as fully as they would like. It is this pressure on time which makes it necessary to book appointments with little leeway for delay, and with an element of deliberate overbooking. Not all patients keep their appointments, so if appointments do not take account of this doctors will be left twiddling their thumbs. On the other hand if appointments do take account of this, there will be occasions when patients all turn up and have a long wait. Patients should recognise that such situations create stress for the doctor too, so they should be tolerant of the wait, and they should also be tolerant if the doctor perhaps seems distracted or under pressure and unable to give them the personal attention they desire.

This explanation hangs together and has obvious elements of truth. It is genuinely difficult to fix precise appointments when patients differ in the amount of time they need, their need cannot be predicted when the appointment is made, and some of them don’t keep the appointment anyway.

But the explanation falls short of being a complete rebuttal of the charge. For one thing, clinics contain elements of non-patient time, such as tea breaks and administrative work which provide some leeway and could be undertaken when gaps occur. A clinic which lasts four hours and books all its appoint­ments in the first two (or even worse books all of them for the starting time of the clinic) is overcompensating for the difficulty of making appointments.

More importantly, waiting times are the most quantifiable criticism and therefore the one to be picked on first when dissatisfaction arises. There are doctors who often keep their patients waiting for a long time, but are never criticised because their treatment of their patients is not inhumane. With these doctors, patients do not substitute for their real complaint by focusing on that which can be criticised, since they do not have a real complaint to start with. Patients of such doctors are likely to assume that if they are kept waiting it is because some earlier patient needed an unusual amount of care and attention, which they know this particular doctor would unthinkingly give, whatever the effect on the schedule. They may actually be right, although all doctors soon learn that they can be unpunctual and get away with it, since it will be assumed to be due to patients needs.

If the fundamental complaint is that doctors do not treat patients as human beings, it is less easy to see how inadequate resources can be pleaded as the root cause. Courtesy and sympathy do not cost money. They may cost time, but hardly in such quantities as to render them uneconomic.

It is here that the medical profession must face up to the complaint that it ceases to regard patients as people. However much it criticises the tendency to refer to patients as ‘the TB in the fourth bed’ or ‘the hemi we discharged last week’, such phraseology is widely used. It is even more widely avoided only by an act of will, rather than by the absence of the thought process it reflects. Medical education encourages this thought process by its mechanistic rather than holistic model, and doctors are expected to avoid excessive emotional involvement.

The curative model of medicine encourages, indeed necessi­tates, this emotional suppression by surrounding doctors with disasters. If doctors became emotionally involved with every human being they treated they would become very anguished with the plight of those they could not cure. In contrast, a system of medical thought which derived emotional satisfaction from such goals as supporting the bereaved, enabling death free of pain and with dignity or rehabilitating the disabled, would find far fewer failures to brood over amongst its patients. It may therefore be able to afford the emotional involvement which it now sees as dangerous.

The complaint of inhumane treatment therefore strikes at fundamental roots. It challenges an emotional suppression which was painfully learned. It challenges the divinity which that emotional suppression is supposed to protect. It challenges the system of medical thought which could not function without that emotional suppression. It therefore threatens to unravel the whole process of medical socialisation.

Control of Treatment

The consent of patients is required, both in law and in medical ethics, to any treatment which is administered to them. However, the expectation of doctors is that consent will be formally granted unquestioningly upon the doctor’s advice. American law has an extensive doctrine of informed consent, which requires patients to be told the risks associated with the treatment and the reasons for rejecting alternatives. British law has no such concept, and consent to surgical operations is a clerical task carried out by the house surgeon the day before the operation, usually in words like, ‘Hello, Mrs X, we are doing your operation tomorrow, could you sign here, please?’

The patients’ movement demands a change in this situation. They demand that doctors should advise the patient of the alternatives, and of the pros and cons of each alternative, finally making their recommendation and expressing their reasons. The patient should then make the decision.

Such demands are attacked by doctors on three grounds. The first is that patients do not want this responsibility. The second is that patients could not understand the medical decision. The third is that explaining it would take too much time.

Each of these responses is inadequate. Patients who do not want the responsibility can always accept medical advice, or actively relieve doctors of the duty to explain by saying, ‘Oh, don’t explain doctor, just do what you think is right.’ In any case, even if most patients don’t want to make their own decisions, it is no reason to withhold the facility from those who do, or to explain to them grudgingly in a ‘God, just my luck to be stuck with a troublemaker at the end of the clinic’ manner.

Doctors ought to acquire the skill to explain medical matters to patients in ways they can understand. Experts who cannot explain their subjects to intelligent and interested lay people probably don’t understand them themselves. ‘I don’t understand’ is an accusation, not a confession. It is noticeable that at scientific conferences the only people who ever say ‘I don’t understand’ are the more distinguished and respected members of the audience. The statement carries no implication of self-doubt and induces no sense of satisfaction in the person presenting their research. Our patients should acquire the same attitude.

The argument that explaining would take too much time is perhaps the strangest of all. If it is possible to respect the individuality, liberty and autonomy of other human beings are we entitled to refuse to do so on grounds only of convenience to ourselves and our institutions?

In reality the argument does not centre on the desire of the patient, nor upon the practicality of patient control of treatment, nor upon resource implications. It centres on rival views of the role of experts.

One view, shared by the patients’ movement, sees experts as custodians of skills and knowledge which they will apply to facilitate and enable the making of decisions by their clients. They will acquire status from the trust freely won from those they assist.

The other view sees experts as people with autonomous power over others, based upon incomprehensible and exclusive bodies of knowledge, who derive status from the power and mystique of their position. This is the view which is embodied in the traditional medical view of the doctor/patient relationship.

Good Treatment Guides

The development of consumer guides to medical treatment is a logical extension of the concept of the patient as the controlling customer. Through such guides the patients may choose the doctor whose approach to treatment most accords with her or his own expectations. The Good Birth Guide was an assessment of hospital maternity services written from reports made by women who had used the service. Recently the College of Health has produced a guide which allows patients to find out where waiting lists are shortest.

Most controversial, however, have been the attempts by certain consumer organisations to obtain information from doctors about the kind of service they provide and publish this information in a guide to good practice in primary care which will set out for patients details of where they can find a doctor who carries out a particular service or has a particular approach to medicine.

The problem is the medical profession’s ban on advertising. Doctors are supposed to gain patients by recommendations from other patients not by advertising. It is unethical to advertise, and indeed advertising is one of the five ‘A’s (Alcoholism, Addiction, Adultery, Advertising and Associa­tion with an Unqualified Practitioner) for which a doctor is highly likely to be struck off. (Abortion used to be a sixth ‘A’.)

Restrictions on advertising are quite strict. Doctors are allowed to write to colleagues telling them of their willingness to receive referrals of particular kinds of patients, but must not solicit custom directly from patients. They must not arrange to be entered in any directory not open to all other doctors in their area, nor must they even have their telephone directory entry in heavy print. There are restrictions on the size of plaques to be displayed at surgeries.

It would be unethical for a doctor to solicit patients to run a campaign of attracting patients, but not unethical to be the beneficiary of such a campaign run spontaneously. For a CHC to obtain information about doctors from their patients and publish it would be perfectly compatible with medical ethics, and in any case there would be nothing the GMC could do about it even if it wasn’t. The problem comes in asking doctors to supply the information. Is this advertising? Or is it simply a spontaneously organised patient recommendation which the doctor has co-operated with by supplying information?

It would presumably be ethical for a doctor to talk to a prospective patient, at that patient’s request, and answer questions about the practice facilities and philosophy. It would presumably be ethical for a doctor to fill in a questionnaire which a prospective patient had sent to several potential GPs asking them about their practice and philosophy with a view to finding out which of them to register with. What is the difference in supplying such information to an organisation representing patients for the purpose of allowing it to formulate recommendations? The distinction between advertising and patient recommendation is surely that the former is doctor-initiated and the latter is patient-initiated, and that must always be the test, in which case the CHC questionnaire is ethical. This view ultimately prevailed in 1985 with a resolution of the BMA ARM which ruled that the provision of such information was ethically acceptable. The very fact that the debate took place is itself interesting, and it should be noted that questionnaires of this kind continue to meet opposition on the ground, even though they are now endorsed both by the BMA and by the Royal College of General Practitioners.

Indeed perhaps the opposite point of view represents a shrewder understanding of the nature of medical ethics than the formal position. For, however much doctors may formally state their commitment to freedom of choice for patients and to the principle of patient recommendations as the basis of that choice, the reality is one of doctor’s ownership of their patients.

Doctors will often refuse to accept transfer of patients from other doctors, and there are rules against poaching. Doctors exercise great care not to treat other doctors’ patients without the doctor’s consent, whatever the patient may think about it.

This system is not designed to give power in the relationship to the patient, and it is instinctively felt that it must not be exploited so as to create that control.

The Self-Help Movement

Along with the growth of the campaigning sectors of the patients’ movement has been a parallel growth of self-help organisations.

There are essentially two kinds of self-help organisation, with some organisations combining the two types. The first type is based on the idea that fellow sufferers from the same chronic disease can help each other by sharing their experiences and providing emotional support. Alcoholics Anonymous is probably the best known of this type of organisation. Lists of such organisations now run to several hundred.

A typical example (more typical, perhaps, than AA) would be the Ileostomy Society which brings together people with ileostomies (surgical removal of the intestines, with faeces discharging into an external bag) to share each other’s experiences of coping with ileostomies. The idea that underlies this organisation is that the best person to give a new ileostomy patient advice about coping with the ileostomy is not the professional but somebody who has had several years’ experience of coping with the consequences of the operation and can pass on tips based on their experience.

The second type of self-help organisation would be one which brought sufferers together to bring about the provision of a service which they need, not by campaigning for its provision by the statutory sector, but by actually providing it themselves. An example, chosen because my guide to self-help organisations fell open at the appropriate page, is an organisation to provide housebound and handicapped people with specially prepared cassette tapes. There are several hundred organisations of this type also.

The attitude of the medical profession to the self-help movement has been mixed. At one extreme is the attitude of the BMA Division in a certain London health authority which objected to the health-education department running anti-smoking groups unless all members of the group had their doctors’ consent to participate. Some doctors charged fees for the consent form. However the BMA at national level refused, when pressed, to defend that position, and the attitude of the profession seems more to be one of neutrality.

Self-help is a reality which cannot be realistically denied, but it does not figure in professional assumptions. Whilst some self-help groups, such as Alcoholics Anonymous, are likely to receive referrals from doctors, there is no sense on the part of doctors that they have an obligation to inform themselves of the full range of self-help groups and direct their patients to them, in the same way that they would feel such an obligation in respect of professional services or drugs. However referral to self-help groups is not seen as unethical in the way that referral to a non-medically-qualified practitioner of alternative medicine would be, nor are doctors on the whole actively hostile.

The development of co-operation between the self-help movement and the medical profession is hindered by the model of the doctor-patient relationship which presumes that the doctor will provide the patient with all the advice the patient needs, or will arrange for such advice to be provided from elsewhere in the professional health care system. The existence of knowledge rooted in the experiences of other sufferers does not fit that model, and can only be made to fit by regarding self-help groups either as colleagues to whom patients can be referred or as treatment which can be prescribed. Insofar as co-operation does exist between the self-help movement and the medical profession, and insofar as it can be developed and stimulated, it must be by acceptance of one or other of those ways of fitting it to the model. This must be galling for the self-help movement since either is a denial of its self-image. It is also dangerous, because on either of those models there is a danger of becoming trapped in the doctors’ ethically-derived property rights in their patients.

Patient Participation

Another interesting aspect of the patients’ movement is the development of the idea of patient participation in general practice. This movement developed with the active support of several radical general practitioners. One of its early protagonists was Alistair Wilson, a South Wales Communist GP, who died tragically early of a heart attack whilst participating in the People’s March for Jobs. (The MPU responded to his death by launching a memorial lecture on the theme ‘the health of the people is the concern of the people themselves,’ a well known quotation from Lenin.)

The idea of patient participation in general practice is that the patients in a particular practice will elect a patients’ committee. This committee will be able to advise doctors on the way in which services should develop, and may be able to participate in, for example, health-promotion events. A number of practices now have such committees, and come together in the Association for Patient Participation in General Practice.

The movement acquired an early critic in the form of the BMA Ethical Committee, which commented that doctors who set up such groups were effectively advertising since the patient participation group would publicise the practice. Michael Rapaport, MPU delegate to the GMSC, was scathing in his attack on this advice: ‘I expect any day now to hear that it is unethical to run a practice that is better than average in case it attracts patients from other practices.’

In fact the BMA ethical advice was quietly dropped and the movement continued to grow. However once again we see the idea that there must be something wrong with co-operating with the patients’ movement, and the willingness to seize on advertising as the rationale for the objection. This makes me wonder whether the concept of advertising as a medical sin does not go beyond its legalistic definition, and its ostensible purpose. Is the essence of the sin that the doctor subjects herself or himself to scrutiny by the public? Those who advertise do so by openly competing with their colleagues, but the sin can be committed in other ways, is most dastardly when it is motivated by principle rather than greed, and especially so when it does not constitute a punishable breach of ethics.

Access to Notes

The patients’ movement would tend to support the idea that patients should have access to their own clinical notes so that they can see what the doctor is writing about them. This is especially so since the notes follow the patient through the health-care system and will be seen by succeeding doctors.

This demand fits in with the growing emphasis amongst civil liberties organisations on privacy and data protection.

The profession resists such claims. Its approach to data protection is conditioned more by the need to keep notes confidential than to open them up. Major battles have been fought over medical confidentiality (see Chapter Seven).

Confidentiality of notes from patients is not a matter of medical confidentiality. The right to confidentiality vests in the patient and the patient has the right to release the doctor from the duty of confidentiality, so it clearly raises no obstacle to a request which is patient-initiated. Nonetheless it does condition the profession’s response to its notes, creating a protective attitude.

The profession has sound objections to patient access. Firstly there may be occasions when patients ought not to know what is wrong with them. Secondly doctors need to be free to exchange frank comments about patients (for example to warn consultants about the character of a referred patient by saying, ‘Please see this irresponsible demanding patient who has made my life a misery for the last 20 years with her hypochondriasis. I would welcome your opinion on whether there is anything wrong with the old fool.’) Thirdly doctors need to record thoughts and possibilities which may acquire excessive importance in the patient’s mind. For example the idea of cancer crosses the doctor’s mind, and as a reminder not to overlook it, he writes ‘R/O carcinoma’. (‘R/O’ means ‘rule out’.) The diagnosis is ruled out, but subsequently the patient reads the notes and concludes he has cancer.

There are rational responses to each of these arguments.

To the first argument it may be responded that patients who want to know what is wrong with them have a right to be told, and those who want to collude at being deceived will not ask to see their notes.

To the second argument it may be said that it is wrong for the opinions of one doctor to follow a patient through subsequent care without the patient having a chance to correct them, and if doctors really think a patient is a hypochondriac old fool they should be prepared to justify the opinion. This argument simply repeats a wider debate within our society as to the openness with which negative opinions of people should be expressed. Some subcultures, those of the Pennine Valleys or of the West Indian community for example, would have as an approved norm the idea that you should say to somebody’s face anything you intend to say behind that person’s back. Other subcultures, such as those of the Asian communities or of the Surrey suburbs, would regard it as very rude to tell somebody of the message which you feel it your duty to pass round the grapevine.

The doctor/patient relationship does not escape this debate. The solution to the third argument is that the patient should find a doctor or nurse who will be able to go through and explain the notes. The Patients’ Association could even retain a panel of doctors for that purpose. The rational arguments on patient access to notes are finely balanced, and the profession’s position is far from unjustifiable even in liberal terms. However it is also true that the profession’s position is emotionally bolstered by resistance to subjecting itself to public scrutiny. I almost expect it to be claimed that doctors who allow patients to read their notes are guilty of advertising.

Complaints

Doctors are human beings. Like all human beings they make mistakes. When mistakes occur which have serious conse­quences it is necessary that they should be investigated, so that lessons can be learned, and that those who suffer from them should be compensated.

The practice of medicine sometimes involves the taking of calculated risks. These risks may go wrong, or some unforeseeable accident may intervene which turns a routine medical procedure into a disaster – a rare drug allergy for example. In these situations the patient is likely to feel that compensation is justified, even though the doctor is not at fault. It may be that it would be a legitimate goal of public policy to provide for this, hence the argument for ‘no fault compensation’.

There needs to be a system of punishing doctors who are guilty of serious misconduct or neglect of patients, although doctors should not be punished for mere mistakes. There also needs to be a system of removing from practice doctors who are no longer fit to practise.

These objectives are met by a range of complaints procedures. The General Medical Council can discipline doctors who are guilty of professional misconduct and can suspend from practice doctors who are unfit to practise on grounds of health. General practitioners can be fined by the Family Practitioner Committee if it is found that they have broken their terms of service, whilst hospitals investigate complaints made by patients and could discipline doctors as their employees. Patients can sue doctors who are negligent, although negligence implies more than simply making a mistake – it implies making an unreasonable mistake. The Health Service Commissioner can investigate complaints about health services.

To doctors these complaints procedures offer patients a plethora of alternative routes for pursuing any argument they may have with them, and even the most trivial complaint has to be taken seriously.

To the patient however these procedures are a bureaucratic maze. Five main defects can be identified.

Firstly, the differing procedures create confusion. Which complaint procedure should the patient use? Here the patients’ interests correspond with those of doctors who complain that they are subjected to multiple jeopardy from a complex of interacting systems. It should be practicable to devise an integrated system.

In the second place the system is slow in handling problems of unfitness to practise on health grounds, and there is no procedure for handling unfitness to practise on grounds of incompetence. The medical profession would probably not dispute this complaint. There has been some debate within the profession about the slowness of doctors to respond to situations where colleagues are becoming unfit to practise. However the problem is one of medical solidarity, deeply ingrained by the history of the profession.

Thirdly, the system is geared for major issues. It is cumbersome when all the patient wants is an apology for discourtesy or an explanation of what went wrong. Again there is no reason to see it as against the interests of doctors to have a simpler system. Such a system may indeed avoid the need for complex procedures, which waste the time of doctors and cause emotional hassle, when all the patient wants is an explanation. CHC secretaries believe that most complaints fall in this category.

Fourthly, there is no system of compensation of medical accidents where nobody is at fault, or for doctors’ mistakes which do not amount to negligence. There is, again, no reason for doctors to oppose such a compensation system. Indeed it may make patients less likely to pursue negligence claims.

Finally, patients complain that doctors stick together and the patient can never find a doctor who will say that another doctor was negligent. This solidarity is a deeply-rooted emotion which owes its origins to the profession’s shared struggle for advancement.

A Case Study of Medical Negligence

I would like to explore these issues further with a case study. Since it seems unfair to select another doctor’s mistakes as the basis for the study, I will choose one in which I was personally involved.

In the second half of 1977 I was employed as a Casualty Officer. I had been qualified for three-and-a-half years and was beginning to acquire a degree of expertise in the field of my main interest, general medicine. I was quite inexperienced at orthopaedic surgery, which is an important part of Casualty work, and I recall spending the day before I took up my new post reading the textbook to remind myself of the basic principles of orthopaedics. However after a few months in the job I had learned a great deal, much of it from my own mistakes, most of which had been averted by the prompt intervention of the experienced nursing staff, under whose clinical supervision any sensible new Casualty Officer works.

The Casualty Department is busy. It is necessary to deal with patients quickly. One day a young woman presented herself at the Casualty with an infected finger. To this day I do not remember the encounter, but according to my clinical notes I prescribed antibiotics, sent a letter to her own GP and told her to contact her own GP the next day if the infection had not begun to recover. I neglected to carry out a test for an infection spreading to the deep tissues of the hand. This was an act of negligence. I do not plead ignorance -1 was aware of the importance of carrying out such a test. To this day I do not know why I neglected it.

I never saw this patient again. Oddly, she claims to have seen me on a subsequent visit, but the notes reveal that she actually saw another doctor. Had the patient visited her own GP the next day, and had he acted promptly, the consequence of my negligence, namely the amputation of the woman’s finger, might have been averted. In fact she did not visit her own GP for three days. Whether this was her fault for ignoring my advice or my fault for not impressing my advice clearly enough is a question that cannot be answered.

When she did visit her own GP he sent her back to the Casualty Department. Here another doctor repeated my error. So a few days later did another. A few days later a fourth doctor made the correct diagnosis but continued with the inappropriate treatment. This was the most inexplicable of the mistakes, but did not cause harm, since the finger was by then almost certainly doomed. A week later correct treatment was set in hand, but amputation of the finger was by then inevitable.

My first knowledge of this affair came several months later with a letter from the patient’s solicitor. I travelled to Leeds to see the Medical Protection Society (MPS), who patiently pointed out to me my error, explained that the action was indefensible, and reminded me of the human consequences of loss of a finger in a young housewife. It was a rather chastening interview.

I was then told to forget about the whole affair and worry about it no more. There would be no need to go to court since the case was indefensible and would be settled out of court. In due course a sum would be negotiated and the Society would pay. However the question did arise as to how far the responsibility rested with me, how far it rested with the other doctors involved (who were members of a different protection society), and how far it rested with the Area Health Authority concerned for employing inexperienced casualty officers.

Several months later I received a letter asking me to comment on a statement made by one of the other doctors involved which conflicted with my own account of things. I pointed out that my own account was borne out by the clinical notes, indeed was derived from them since I did not recall the patient. I also said, ‘I hope my patient is not having to wait for her compensation whilst the MPS, MDU and Health Authority sort out who is responsible.’

About a year after the original solicitor’s letter the case was settled. I was not told about this until several months later when I enquired about the outcome. The Protection Society told me that they thought they had done quite well in the settlement, which I take to mean that my patient really deserved more.

As a way of handling the situation this procedure has some things to commend it. The patient received compensation, the doctors involved were sufficiently chastened to learn from their errors, but not sufficiently worried to make them practise defensive medicine, and other doctors were able to learn from our mistakes, since cases are reported anonymously in the Protection Society’s annual report.

However there are things that weren’t done very well. The patient was kept waiting for a year for compensation that everybody knew was owing to her. I doubt if the adversarial system of British law ever paused to explain to this woman exactly why she had lost her finger, or what had gone wrong. The whole affair was impersonal, and I never met the complainant to explain or apologise or to allow her to work through her anger or me my guilt. I wanted to visit her and talk to her, but something told me that the Protection Society would not approve. The doctors concerned never got together to work out how between us we made such an appalling error.

Did we learn the real lesson of this case, which is the way that a group of uncertain people reinforce each other in their mistakes by tending to stick with the first decision reached even as events unfold to make that decision, mistaken in the first instance, even less justifiable? Did we learn the other lesson of the case – that it is not enough just to tell a patient to go back to her GP the next day unless the reason is properly explained? (Dare I have said what I ought to have said, ‘I’m not really sure that what I am doing is right, so if it doesn’t work by tomorrow I want another doctor to have a fresh look.’) Did we learn that there is no point passing the buck to somebody else without telling him or her what you’re doing?

I suppose I did learn that lesson, but it was by good luck rather than good management, for, whilst my clinical errors were stressed in my interview with the MPS, my communication errors were ignored. Yet the clinical error would have been discovered and remedied without the communication error.

Scope for Agreed Improvements

It would seem, rationally, that there is scope for considerable improvement in the complaints procedure before conflict of interests between doctors and patients becomes inevitable. But such developments are difficult given the state of mutual incomprehension and distrust between the profession and the patients’ movement.

Indeed one of the concerns of the profession has been to keep the patients’ movement at arm’s length in the complaints procedure. Doctors have fought very hard (and with considerable success) to prevent community health councils representing patients at complaint hearings. This may have backfired for it has led the patients’ movement to evolve an organisation specifically to deal with the problem of complaints and compensation.

The Association for the Victims of Medical Accidents (AVMA) was started in 1982 as a result of a BBC play Minor Complications which described the two-and-a-half-year fight for compensation of Stella Burnett who nearly died after a medical accident. The AVMA recognises that the victim of a medical accident is faced by powerful organisations -protection societies and health authorities – but has to prove negligence to obtain compensation. The AVMA tries to put the victim in touch with legal and medical experts who will help, and in its first year dealt with over 1,000 enquiries and opened an advice centre in London.

Sooner or later the profession and the patients’ movement must begin to understand each other and evolve a complaints/compensation machinery which each can have confidence in. It may be that a Labour government committed to reform of the machinery could bring about such a meeting of minds so long as it understood that the issue is not just a rational one.

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