Who should look after people with Parkinson's disease?

With the support of the World Health Organization and the blessing of the Pope, the 1997 charter for people with Parkinson's disease declared that patients have the right to consult a doctor with a special interest in Parkinson's disease (box).¹ This demand was reinforced at the launch of the global declaration on Parkinson's disease in Mumbai, India, last month at a symposium of a working group originally formed by WHO. Yet where can this reasonable demand be met at present? Not in India, and perhaps not in most other places in the world—developing or developed. A doctor with a special interest usually means a neurologist (but it could be a geriatrician or a general practitioner), and given the shortage of neurologists in most countries including the United Kingdom this demand is unlikely to be met till the shortage is addressed.^{2 w1 w2} Moreover, neurologists on their own are perhaps not suited to look after people with Parkinson's disease, and these patients need to be looked after by multidisciplinary teams, keeping in mind the needs of patients as identified by patients and doctors. This charter could easily be applicable to other chronic neurological disorders too.

Although the number of incident cases of Parkinson's disease is relatively small (20 per 100 000 per year) the prevalence of the disorder is high (200-300/100 000 in the United Kingdom) and poses a sizeable burden.³,⁴ Moreover, Parkinson's disease is complicated by falls and fractures, and depression, which further increase the burden of illness. In the United Kingdom this is largely carried by general practitioners with help from neurologists and geriatricians. A low incidence of Parkinson's disease, however, means that general practitioners see few “new” patients with the disorder, which might be responsible for the relatively high rate of misdiagnosis in the early stage of the illness⁵,⁶ and the need for an early specialist opinion. Misdiagnosis also results in people with atypical parkinsonian disorders being wrongly labelled as having Parkinson's disease and treated with drugs to which they usually don't respond. A shortage of neurologists means that patients may wait up to six months to see a neurologist and consultations may occur less often than is necessary. These delays reflect poorly on the health service of one of the richest countries in the world.

Parkinson's disease charter

Be referred to a doctor with a special interest in

Parkinson's disease

Receive an accurate diagnosis

Have access to support services

Receive continuous care

Take part in managing the illness

As one measure to alleviate the workforce conundrum, specialist nurses have been trained to look after people with Parkinson's disease. In a randomised controlled trial no notable differences in health outcome were found between patients receiving care from a nurse specialist and those receiving standard care from their general practitioner.⁷ An improvement in the subjective wellbeing of patients cared for by a nurse was seen without any increase in costs. Is using specialist nurses part of the solution or part of the problem? A nurse trained and dedicated to look after a particular illness means one less nurse to deal with other illnesses in a health system where nurses too are in short supply.^w3 Training some nurses and general doctors to deal with such patients is a plausible fix, but how many patients will be satisfied as the disorder progresses and their management gets more complicated? Such patients also need to be seen by specialists quickly and as often as needed.

Parkinson's disease is one of many chronic neurological illnesses that general practitioners encounter, but they are uncomfortable dealing with such disorders. This perhaps reflects a “neurophobia” that arises from the deficiencies of undergraduate medical education.⁸,⁹ Most general practitioners would much rather put their stethoscopes on the chest of a breathless patient than fiddle with reflex hammers and tuning forks to diagnose a patient who complains of difficulty in walking, or pins and needles. The durable solution to this problem lies with the medical schools, who have so far failed to demystify neurology.¹⁰ Knowing how to deal with common neurological problems requires little knowledge of complicated neuroanatomy, and the neurology needed to manage patients with Parkinson's disease, dementia, or strokes is well within the ability of students who enter medical school with plenty of “A”s.

Are neurologists on their own well equipped to deal with Parkinson's disease? Given that this illness affects people mostly after the age of 40, many of these patients will have associated general medical illnesses. Arguably, neurologists may do a great job of looking after the patient's nervous system but may be found lacking when dealing with associated illnesses such as diabetes and hypertension and the resulting polypharmacy. And they would need the help of trauma surgeons to deal with falls and injuries and geriatricians to handle the behavioural and cognitive problems in some patients. Most neurologists would not welcome a primary care role and are perhaps poorly prepared for it.

Is there a role for non-governmental organisations, such as the European Parkinson's Disease Association, in the management of these patients? In an ideal service they would have little or no part to play. For the service would meet patients' special needs for health care and information, and patients would not need advocacy to obtain government support—financial and otherwise. But in our real world, “we need to get the movers and shakers in government to be movers and shapers for people with movement disorders,” says Mary Baker, president of the European Parkinson's Disease Association. The educational mission of non-governmental organisations was used in the Mumbai meeting to organise a programme of parallel sessions for doctors and for patients and carers addressed by opinion leaders. Professor B S Singhal, who organised the symposium, noted that “the experts had to answer tough questions from the audience in both halls. But the tougher questions were from patients and carers.”(B S Singhal, personal communication, 2003.)

So who should manage people with Parkinson's disease? Like most patients with chronic neurological disorders they need to be looked after by a multidisciplinary team that includes a general practitioner, a neurologist, a geriatrician, pharmacists, specialist nurses, and physiotherapists. We also need to balance the regionalisation of care to specialised centres and teams against the desire of patients to be treated in their own communities so that they can enjoy independent living and a better quality of life. Moreover, we need to keep in sight that what these patients want might be much more and different than what doctors think they want.¹¹,¹² The global declaration of Mumbai is a good first step in meeting the needs of patients. Service providers will need to think hard about how they can go about delivering what patients have stated in their charter.