The need to distinguish demands for health care from need

The demand for care is the recognition by people of their desire for care—what people might be willing to pay for in a market, or might wish to use in a system of free health care which had no restraints on resources. Demand is influenced by the current prevailing culture, and by information available to potential patients through many channels—friends and relatives, the media, and doctors. An example of demand might be for electrical stimulation of the facial muscles after Bell’s palsy, not of proved efficacy. The need for care is the call for medical interventions for deficiencies in health determined by health professionals, because they recognise an individual patient’s or a population’s ability to benefit.1 With regard to rights to care, King has written:

 “By adding “rights” to “wants” and “needs”, we make a difficult pair into an even more difficult trio. The right to personal health care can be considered as a group of interventions that an individual will only sometimes need, may not always want, which are not to be imposed upon him, but which must be available.”2

 The “right” to care will vary in different societies but many would agree that it is more appropriate for developing countries to provide efficient and effective prevention and treatment of common infectious illnesses, and efficient and effective maternal and child health services, rather than “high tech” hospitals in a few urban sites.3

The American Academy of Neurology in a recent position statement states that “patients have the right to specialty care”.4 On first thought, this reads unexceptionally enough, but the term “right” has become degraded from the universal rights of liberty and freedom of speech to lesser considerations (a cartoon has shown an Oxbridge don in his quadrangle passing a notice on the lawn which reads “Respect the rights of grass”). Lesser “rights” have to be considered within resources. As an example in the medical context, a patient admitted as an emergency with an episode of acute asthma may find him or herself under the care of a duty physician who happens to be a gastroenterologist. It will always be impossible to ensure immediate care by a relevant specialist, whatever is written about “rights” to specialty care.

Even if rights are reduced in stature to needs, some needs are greater than others. Attempts to arrange a hierarchy of needs are reflected in the current interest in attempts to measure benefit by measurement of change in health status, disease specific outcomes, functional capacity, quality of life, and so on. Although there is no reason to suppose that improvement in these measures will not continue, there is an enormous gulf between technical issues of measurement and the capacity to agree on a hierarchy of needs which might be met by rational allocation (rationing) from constrained resources.5 6

The evidence for a growing demand for neurological care

There is evidence of a growing demand by patients in the United Kingdom for care of neurological symptoms. For example, evidence from the third and fourth National Morbidity Surveys from general practice in the United Kingdom, showed the following changes between the third Survey in 1981-2 and the fourth Survey in 1991-2.7-9

• An increase in patient consulting rates* for all diseases and conditions coded in chapter 9 of the International Classification of Diseases-ninth revision (ICD-9) (diseases of the nervous system and sense organs) from 1409 to 1732 per 10 000 person years at risk (+23%)

• An increase of 40% in patient consulting rates for migraine (an increase of 58% for females aged 15-24)

• An increase of 49% in patient consulting rates for vertiginous symptoms.

It is noteworthy, however, that patient consulting rates were much more stable for organic neurological disease:

• For epilepsy, from 35 per 10 000 in 1981 to 36 per 10 000 in 1991 (+3%)

• For Parkinson’s disease, from 14 per 10 000 in 1981 to 15 per 10 000 in 1991 (+7%) For multiple sclerosis, from eight per 10 000

• in 1981 to seven per 10 000 in 1991 (−12%).†

 Changes in coding prevent easy comparisons for cerebrovascular disease, but David Perkin has reviewed the evidence for a fall in incidence of stroke in his background paper, a fall which is probably now stabilising.10

The figures from these morbidity surveys suggest that neurological need, in terms of what is needed to fulfil the requirements for care by general practitioners of definite neurological disorders such as epilepsy, Parkinson’s disease, and multiple sclerosis has not changed significantly between 1981-2 and 1991-2. This is what would be expected if the incidence of these disorders was more or less static (influenced only by the demographic changes outlined in the background paper prepared by David Perkin), and if general practitioners were seeing all or nearly all of these patients. However, demand on general practitioners, as reflected in more patients requiring consultations for symptoms such as headache and dizziness, has increased.

The fourth National Survey, unlike the third, does not tabulate referral rates from general practice to hospital based specialists. However, for the 1981-2 data, I have previously drawn attention to how general practitioners absorb much of the burden of potential neurological work.8 For example, general practitioners referred only 3.5% of their patients with headache. It would need only a small change in general practitioners’ confidence in dealing with patients with headache, and in their tolerance of them, for neurological services to be totally swamped. Probably the biggest “choke” on further referrals to neurologists is the length of waiting lists for outpatient appointments, and tacit understandings between general practitioners and their local neurologists that the first will not flood the clinics of the second to the extent that patients with major neurological problems cannot rapidly be seen. If this “choke” is lessened by the provision of further neurological sessions, a supply induced demand may result. The calculations by David Stevens, published by the Association of British Neurologists,11 which set out to make a case for an increased number of neurologists in the United Kingdom, are based on demand, as disclosed by audit of the workload of 34 neurologists in 1991,12 and by “ideal” time expenditures per neurological outpatient.13 The suggested ideal time for a new patient seen by a consultant is 30 minutes. These calculations reflect existing patterns of work, and hoped for time. They do not, however, take note of the distinction between need or demand.

To consider how neurologists may fulfil the needs of the population, as defined on the first page of this paper, we must also consider the effectiveness of neurologists in benefiting the population’s health.

The evidence for the effectiveness of specialists, and of neurologists in particular

There is certainly now evidence of the effectiveness of various neurological therapies. Examples include:

• Antiepileptic drugs

• Dopamine agonists for movement disorders

• Antibiotics for meningitis

• Cholinesterase inhibitors, plasmapheresis, and thymectomy for myasthenia gravis

• Acylovir for Herpes simplex infections

• Thiamine in Wernicke’s encephalopathy

• Anticoagulation in atrial fibrillation, for preventing stroke.

 The cost effectiveness of some of these interventions has been analysed, as far as the limited evidence allows, by Richard Langton-Hewer in his background paper. We need to distinguish, however, between the therapeutic interventions and the people who diagnose and treat neurological disease.

If we consider firstly the question of whether specialists in general “do better” than other physicians, the evidence is surprisingly scant. I have been able to find little published comparative work. However, in a study designed to compare the quality of care of Health Maintenance Organisations with fee for service medicine, Greenfieldet al reported that patients with hypertension or with non-insulin dependent diabetes mellitus (NIDDM) had similar outcomes at two and four years after the study began, irrespective of whether they were managed by generalist physicians or by cardiologists (for hypertension) or endocrinologists (for NIDDM).14 The only notable exception was better outcome for infection and ulceration of the feet for patients managed by the endocrinologists—and this aspect may reflect nursing or communication rather than strictly endocrine skills.

For asthma, Bucknall et al showed that respiratory physicians did use more appropriate and effective management in acute episodes than did physicians who were not specialists in respiratory medicine.15

For neurology, the emphasis of such research, where it exists, has been rather different. There is, rightly I think, particular emphasis on diagnostic accuracy in our specialty, and the investigations used to supplement clinical examination are often expensive. It is helpful, therefore, to know from the work of Patterson and Esmonde in Northern Ireland that a neurologist did manage outpatients referred with neurological symptoms more efficiently than other hospital physicians. The characteristics of patients referred to each were similar, but the neurologist discharged more patients, had fewer uncertain diagnoses, instituted fewer investigations, prescribed fewer drugs, and arranged fewer referrals to other health professionals including other consultants. His actions also generated fewer inpatient bed days.16 Hillen and Sage have attempted to evaluate the “worth of neurologists” (their title) in relation to inpatient consultations.17 Using no more than ad hoc judgement criteria, the authors concluded that 43% of 72 consultations had been useful, and they give some examples with which most neurologists would agree. Stronger evidence is available for stroke, in which one study showed that patients are discharged more rapidly, with more appropriate and cost effective care, if they had been admitted to a neurological service than a general medical ward.18 The cost effectiveness (efficiency) of neurologists is, however, challenged by other evidence from the United States, where neurologists earn a large proportion of their fee income from in office investigations such as electrodiagnostic studies,19 and such comparative studies as there are suggest that United States neurologists undertake some investigations which would be considered inappropriate in the United Kingdom.20

One important difference, of course, is the strong primary care sector in the United Kingdom. The more neurologists there are, the more they will be taking on aspects of work currently done by general practitioners and their primary care teams. Menken has drawn attention to how, in the United States, neurologists may become the only healthcare provider for long periods of time and how “some policy analysts have questioned the quality and cost effectiveness of the primary care provided by specialists”.19

Comparisons have also been made between the effectiveness of specialists and of nurse practitioners, who have received appropriate focused training. For example, patients with chronic rheumatoid arthritis followed up by a rheumatology nurse practitioner had, at the end of one year, better mean pain scores, increased knowledge of their disease, and higher overall satisfaction with their care than patients followed up by a consultant rheumatologist. Measures of technical progress of the disease, such as the Ritchie articular index, were not significantly different.21 As a further example, nurses can carry out screening for colorectal cancer by flexible sigmoidoscopy as accurately and safely as experienced gastroenterologists.22 Other examples of successful substitution of professional skills are reviewed by Hopkins et al.23

There has been little or no work on substituting other professional skills for those of neurologists. The employment of specialised nurses in relation to epilepsy or Parkinson’s disease has usually been an added rather than a substitutive service, although such nurses may free up time for clinical neurologists by taking on some responsibilities for patient education and counselling.

What neurologists set out to do

Most participants at the workshop will, I think, agree that the primary functions of neurologists are to provide diagnostic services, to prescribe pharmacological treatment, and to arrange and monitor related professional services such as physiotherapy that have a significant impact on the progress and outcome of major and minor neurological disorders, and which improve the quality of life of patients.

In addition, neurologists should:

• Act as proxy for patients, raising concerns locally and nationally over the impact of neurological disease

• Inform patients and their families about options for treatment, to allow them to reach informed choices

• Support and advise primary care teams, and other local health professionals such as physiotherapists

• Respond to patients’ somatic neurological symptoms which may not have a basis in organic disease

• Support and advise physicians and others in district general hospitals in relation to emergency admissions, ward consultative work, and outpatient care

• Promote leadership in the management of chronic neurological disability and rehabilitation

• Maintain links for clinical and research purposes with neurosurgeons and experts in other disciplines, notably neuroradiologists, clinical neurophysiologists, neuropathologists, geneticists, clinical psychologists, psychiatrists etc, to provide effective coordinated care

• Teach medical students and educate and train young health professionals, both the small minority who will themselves become neurologists, and the majority who need to have sufficient neurological knowledge to practice effectively in other branches of medicine

• Congregate populations of similar patient populations for clinical and biological research

• Lead or participate in research into the basic mechanisms of neurological disease.

All these requirements of neurologists should be met by a service which:

• Provides reasonably easy access, in terms of both geography and waiting time. Fortunately, because of the National Health Service (NHS), patients in the United Kingdom do not currently face problems of personal financial constraints on access to neurological services, but research has shown that the uninsured population in the United States has less access to and less utilisation of many neurological services than the insured population24

• Incorporates the values of patients and carers, within available resources

• Manages the tensions between the local demands of general practitioners and of district general hospital physicians (particularly in regard to help with emergency admissions and prompt consultative advice) and the necessity, on the grounds of efficiency, of centralisation of many investigative and support services, such as neurosurgery

• Provides resources for research, education, and training.

Different ways of meeting the need and demand for neurological services

The Association of British Neurologists thinks that training and employing more neurologists to fulfil the functions listed above is the best way forward in meeting the need and demand for neurological services. Table 1 shows the rapid increase in number of neurologists in the United Kingdom, and the recommended reduction in ratio of neurologists per head of population.

There is also considerable international variation in numbers of neurologists (table 2)

Such international variations in numbers of neurologists suggest variations in the importance that the population attaches to neurological services—in short, cultural variations in demand.

The culture in many other respects of, for example, Norway and Austria is not very different from ours, and yet, even if the most recent proposals of the Association of British Neurologists were accepted, we would still have 4.5 and 5.2 times fewer neurologists per head than these countries. There are medical cultural differences other than the differences in ratios of neurologists to the population. In Austria, neurology is linked much more closely with psychiatry than in any other country in the European Union, and in Spain there are more clinical neurophysiologists than neurologists.

Increasing the number of neurologists is certainly one way of providing better neurological services, but may be neither necessary nor the most efficient way. Other possibilities need to be considered.

(1) The intention of government is to encourage a primary care led NHS, with less activity in the secondary care sector.38 The question arises therefore as to whether general practitioners could take on a larger role in the provision of neurological care. Undoubtedly, their knowledge and skills could be improved by focused training, but unfortunately, the research evidence is that doctors with particular knowledge and experience of a specialty tend to refer more patients to their local consultants in this specialty.39The content of weekly medical magazines also suggests that general practitioners are so burdened with work that they are not likely to wish to take on further responsibilities. The reverse suggestion, that neurologists play a greater part in primary care in the United States40 was vigorously resisted in subsequent correspondence.41

(2) Efforts might be made to educate the public better about the relevance of neurological symptoms. I know of no evidence to suggest that educational messages of the sort “Don’t worry, the fact that you have a headache doesn’t necessarily mean you have a brain tumour” is likely to reduce referrals to neurologists—more likely the reverse.

(3) Consultant physicians other than neurologists might become more involved in neurological care.30 The involvement of physicians with an interest in neurological care is an old chestnut, and, out of respect to the previously expressed views of most colleagues, I am not repeating the arguments here. I have, however, been interested to see just how far back this argument goes, so I have included as an to this paper some extracts from the minutes of the Royal College of Physicians’ Committee on Neurology since its inception in 1944.

(4) The skills of other health professionals might be more effectively used, but substituting for some of the work of neurologists, rather than duplicating it or adding ineffectively to it.

(5) The profession has not, to my knowledge, considered a possible reduction in the numbers of neurologists. By choking supply, demand would be decreased. Primary care would of necessity then take on a larger role in neurological care. General practitioners would themselves certainly respond by choking attendance at their surgeries, with all the attendant problems of potential patient disaffection and litigation. The smaller number of neurologists would, however, be seeing more serious disease and would maintain more easily their clinical investigative and therapeutic skills, a point raised by Menken.19 There is much evidence from surgical practice that outcomes are related to the volume of procedures undertaken, and it seems reasonable to suppose that the same relation holds in medical specialties.

(6) Fiscal measures may relevant. The need for full or part payment for a consultation would almost certainly reduce the demand for neurological care, but at the risk of putting up an appreciable barrier to those who might benefit. Even a small copayment has been shown to reduce demand considerably.42

The role of academic centres

Academic medical centres have three principal functions—to provide a locus and a focus for multidisciplinary research, to educate and train the next generation of researchers and clinicians in the specialty, and to lead, in partnership with any professional association, the development of the specialty.

Experience over the past few years has shown that academic centres are less stable than they had seemed. They are partly victims of their own success, in so far as the diffusion of specialists throughout the country has meant that patients are managed nearer their own homes, so it is harder to recruit patients for trials and other research. Much relevant basic science will always take place in university departments which have few links with the academic centre. Such basic scientists (for example, geneticists, biochemists) may see their primary affiliation to their own university department or discipline rather than neuroscience. Some basic scientists are developing stronger affiliations with commerce.

Blumenthal and Meyer have suggested three possible scenarios for the future of academic medical centres.43 Firstly, existing functions may be broken up and parcelled out to other institutions that show that they can perform a subset of the functions as well or better. Secondly, academic centres may separate into two distinct classes—a small group of “supertertiary” institutions that concentrate on biomedical research and training of researchers, and the care of patients with very complex conditions, and a much larger group of community oriented academic institutions that focus on training less specialised doctors, and providing secondary care.

Thirdly, academic centres may develop or affiliate with integrated healthcare systems, maintaining leadership by becoming as adept in health services and outcomes research as they have been in biomedical research. Although there are many alternatives, the third scenario is perhaps the most attractive, in so far as it seems likely to encourage delivery of better health care to more people, and the rapid evaluation and dissemination of new advances in care. In short, academic centres such as the Institute of Neurology might usefully broaden their role to research into innovative and better ways of providing neurological care.

Conclusion

This paper outlines some of the tensions which need to be considered when determining the shape of neurological services. Sometimes sudden advances in medicine do occur, and services have to be radically restructured. The advent of haemodialysis and coronary bypass surgery are two such examples. Probably the ability to respond rapidly to sudden advances in neurological research is more important than attempting to guess the future. We certainly have to plan our neurological services to fulfil the foreseeable need for them. Our natural ambitions for the development of the specialty may, however, encourage us to respond too readily to the demand.

The health service reforms of 1989-90 have already had a significant impact on the distribution of neurological services in the United Kingdom. Purchasers have responded to local demand by encouraging trusts to create such a large number of new neurological posts that the supply of appropriate trainees has been exhausted. Commissioning tertiary care is to be reviewed by the Audit Commission,44and it would not be surprising if they supported the cost effectiveness of centralisation of neurosurgical services, as recommended by the Society of British Neurological Surgeons.45 Yet it remains unclear how well relatively large numbers of neurologists will work in association with a few centres, or how much research can be carried out in this model of provision of care. It is also uncertain how much professional job satisfaction and maintenance of energies will result from what might be termed the “districtisation” of neurological care.46 There is a conflict for some between training at specialist centres, followed by a consultant lifetime undertaking a very different pattern of work. There is no easy resolution to these tensions which have been recognised for more than 50 years (see to this chapter).