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Professor John Newsom-Davis
I shall now attempt to summarise the discussions. As always in meetings of this kind, we have identified many problems and rather few solutions.
The first factor to consider is the influence of demographic change and the aging of the population, with the resulting impact on the incidence and prevalence of neurological disease. This will have implications for our specialty. We need to develop stronger links with gerontologists. Some neurological disorders may begin to move out of our orbit and into theirs.
Next, the paper by Charles Wolfe and colleagues showed that the opportunities for prevention of neurological disease other than stroke are fewer than we would like to think.
We are agreed that there is a woeful lack of data about neurological disease services and their outcome. It is also clear that young neurologists do not seem at present to be keen to garner such useful data. That may change, if academic units take on board the need to carry out not only laboratory based or molecular research, but also health service research. Once there is an emphasis of that sort within an academic centre, then we will find bright young people who will be keen to do it.
One issue to emerge today is that there is a real need for neurologists to communicate and cooperate with those in all the specialties with which we interact. These include general practitioners and gerontologists as well as those professionals who presently work with us (clinical neurophysiologists, neurosurgeons, nurses, and physiotherapists). But we should seek more help from voluntary organisations and patient support groups.
The question of demand versus need has not been resolved. In the end there will have to be a compromise, because some patients will always demand interventions, even though neurologists may tell them that they are likely to be ineffective. Some of us may not be able to hold out and will do a little of what patients want, but not everything. There will be no resolution of this tension in the short term.
We agreed that there is a need for superspecialisation. Patients seem to want it. Many of the bigger centres now, Queen Square being an example, together with the Maudsley Hospital and hospitals in Oxford and Liverpool, have individual neurologists with particular expertise—for example, in Parkinson’s disease, epilepsy, or multiple sclerosis.
We need to maintain flexibility in anything we try to put into place, because none of us can be really sure about the changes that will occur. The genetic advances that Martin Rossor talked about will be a major challenge to neurologists over the next 10 to 20 years, by which time the human genome is expected to be completely sequenced. We might have all sorts of insights into why people are susceptible to environmental agents as a consequence of their own genetic make up, and this will have huge implications for the way we manage our patients.
All of that will inevitably and substantially increase the workload on neurologists unless numbers increase. We are working with junior staff who (quite properly) are not required to work as long hours as once was the case. Furthermore, clinical neurologists are now expected to undertake more administration and more teaching. These requirements also have to be met by honorary clinical neurologists working in University departments who are also expected to be active in raising funds for their research.
Dr Anthony Hopkins
It is appropriate that neurologists should sometimes think in depth about where their specialty should be moving, and how they may best improve public health.
Probably because of the articulate nature of the propositions of Shirley Dalby and Mary Baker, we are persuaded that we have to link even more strongly with patient organisations than we have in the past. Much of this needs to be at a local level. Although we may have some research ideas about how a service should best be delivered, patient organisations themselves have to strengthen their local chapters and encourage their people to liaise with their local community health councils, purchasers, and neurologists, so that the local service is delivered in the best possible way.
As editor, perhaps I may be allowed to emphasise the other priorities as I see them. Firstly, neurologists should bring home to government the effect of social deprivation and poverty on the prevalence and morbidity of neurological disorders. Examples include the impact of social deprivation on antenatal and perinatal brain disorders, and on rates of head injury. An equitable society is likely to achieve better health for all its population.1 Unfortunately there is evidence that the government’s economic policy in the past two decades has led to greater inequalities in health. Neurologists should take a moral lead as educators and advocates of social exclusion.2 In particular, neurologists should recognise that the United Kingdom is a multicultural, multiethnic society, and services should be provided in a way that is appropriate and accessible to all ethnic groups.3
Secondly, neurologists must continue to act as advocates for their individual patients. In the United Kingdom, and more particularly in the United States consequent on the rapid introduction of Health Maintenance Organisations, there has been a shift from the primary focus on the patient as the duty of the physicians to the subservience of the physician to the healthcare systems.4 I acknowledge the “public health” or “system” emphasis in the title of this supplement, but a nation’s good health comes from an aggregate of individual good professional interventions, based on an infrastructure of good housing, education, nutrition, employment, and other social policies.
Thirdly, neurologists should consider novel ways of organising and delivering their care. Most hospital systems are set up to manage acute episodes of illness, and neurologists play their full part in this. However, the management of chronic disease is less well organised. Wagner and colleagues have identified five components which figure repeatedly in publications on this topic:
The reorganisation of practice to meet the needs of patients who require more time, and a broader array of resources
The use of explicit evidence based plans or guidelines
Systematic attention to the informational needs of patients and their empowerment by encouraging self management
Ready access to expertise
Good clinical information systems.5
For medical education, we should enlarge the range of educational settings, so that all health resources of the community are used, not neurological centres or specialist firms alone (see Appendix B). We need to broaden the population of health professionals who have some neurological skills. We should also develop better understanding among medical students and young doctors of the concepts of need and demand, and of illness behaviour.
There are research priorities. I list some, most of which have been discussed today. We need:
Research into the impact of neurological disease on patients’ lives and that of their families
Research into why some people with neurological disease can cope, and why others with similar symptoms and similar disease fail to do so
More basic neuroscience research, taking particular advantage, as Martin Rossor has said, of the insights that are likely to be afforded by similarities in phenotype between genetic and apparently sporadic disease;
Research into the effectiveness of different interventions in different patient groups, recognising the relevance of age, severity of illness, and comorbidity. A necessary feature of such work will be clearer definitions of the outcomes of neurological care that are valued by patients
Research into how best to inform patients about their disorder, and to discover their preferences for intervention
Research into the costs to families and to our wider society
Research into the cost effectiveness of neurological care
Research into identifying the clinical features of common neurological symptoms which have high sensitivity and specificity for neurological disease that requires active intervention. We also need to identify the sensitivity and specificity of different investigations in different clinical situations and in different combinations
Research into the effectiveness of delivery of neurological services, specifically into innovative and cost effective ways of organising the investigation of those patients whose symptoms or signs require it. One stop clinics are a means of achieving this—as long as investigations are planned on grounds of reason rather than as a “battery“
Different solutions to different local needs. These might include joint clinics with, for example, physiotherapists; disease or disability focused clinics; open access clinics; and telephone clinics. Some of these solutions may require much greater reliance on other health professionals than heretofore, but novel ways of delivering care must be properly evaluated
Better liaison with general practitioners, so that primary healthcare teams play a full and informed part in the management of neurological symptoms and disease
Innovative and cost effective ways of caring for patients with neurological illness. The examples given in Robin Howard’s paper for this workshop are just some among many possibilities.
As to training, we need to ensure that the realities of clinical practice are reflected in training programmes. David Perkin’s work has shown that 25% of patients attending neurological clinics end up without a specific diagnosis. Neurologists in training should receive more teaching about the most effective ways of handling, for example, somatisation disorders. We should also encourage the recognition by trainees in neurology that education and professional development is lifelong, and that the completion of specialist training provides entry to many different ways by which they may contribute to the neurological health of the nation. We should also encourage the recognition of the pluralism of types of neurologist.6Some have a close relation to general internal medicine and other subspecialties of medicine, some to rehabilitation, some to neurosurgery, some to basic science, and some to health services research. Some will choose to concentrate their practice within a subspecialty of neurology such as epilepsy.
Our specialty has a scientific base which is becoming increasingly strong, but which does not always translate into the delivery of better care. Public health physicians, neurologists, scientists, and patients need to work together to overcome this deficiency.