In this week's Perspectives section, Hilary and Steven Rose describe the moving film Playing Against Time. This film describes the life and music of Barbara Thompson, a jazz saxophonist, and her efforts to continue with her music despite the diagnosis of Parkinson's disease in 1996, including her struggle to obtain care and treatment. The diagnosis of a neurological disorder, such as Parkinson's disease, multiple sclerosis, or motor neuron disease, is a devastating one. Not only is there no cure—treatment will at best delay progression—there is also the predicament of a continuing decline in health, functioning, and quality of life, and a long-term reliance on professionals within the health and social care system.

An estimated 2 million people in the UK live with a neurological disorder, excluding migraine, but there is no centrally collated disease register. It has long been recognised that there is a lack of prompt access to a diagnosis, to appropriate care, and to long-term personal plans for people with neurological disorders in the UK. In 2005, the National Service Framework for Long-Term Conditions highlighted that people with neurological disorders faced lengthy delays in diagnosis, scarce information on their condition and available services, little integration of health and social services, and poor hospital care. It identified 11 areas of relevant quality requirements, such as patient-centred care and supporting family and carers, but without clear targets and without a clear plan of data collection and monitoring. These requirements were to be fulfilled by 2015. A midpoint review was abandoned by the new government. It is therefore perhaps not surprising, but still deeply disappointing, that a National Audit Office report published shortly before the end of 2011 showed that: newly diagnosed people often do not receive information about their disease, for example 35% of people newly diagnosed with multiple sclerosis were not given information about the disorder; the number of emergency admissions to hospital has increased rather than decreased; and many people with neurological disorders admitted to hospital as an emergency do not see a neurologist. In a study done by Oxford University, only 22% had a personal care plan. Spending has increased by 38% since 2005 but it was unclear from the available data where and how this money was used.

Following these findings, the Neurological Alliance, an umbrella organisation representing charities, warned of a “neurology time bomb” with projected increases in prevalence in an ageing population. Without a focused, nationally led strategy and strong clinical leadership within the Department of Health, the service provision might further deteriorate rather than improve. Steve Ford, chief executive of the charity Parkinson's UK and chair of the Neurological Alliance, told a House of Commons public accounts committee last week that without a clear outcome strategy and a national clinical director, neurological disorders are likely to remain low priority for the new commissioning groups. Unlike cancer, stroke, and diabetes, which all have strategies and clinical champions, degenerative neurological disorders are heterogeneous and complex. Success or progress is not easily measured in terms of decrease in mortality or incidence. New treatments are urgently needed but costly and difficult to develop. In 2011, many new initially promising treatment avenues, for example for dementia, have been abandoned by pharmaceutical companies because of futility or harm. The new US initiative of developing new treatments through national networks, the national Network for Excellence in Neuroscience Clinical Trials ( https://doi.org/10.1016/S1470-2045(10)70032-2 ), is to be applauded. But it will take many years for these initiatives to translate into direct benefits for patients.

In the meantime, urgent attention should be paid to an integrated patient-centred approach to diagnosis, treatment, support, and care for patients with neurological disorders and their families. There are good examples in some communities. Steve Pollock, consultant neurologist in Kent, explained to the public accounts committee how specialist multiple sclerosis nurses had been used as navigators through the complex landscape of health and social care services and achieved a drop in hospital admissions. With the new Health and Social Care Bill focused on competition and cost-efficiency, an already fragmented, unequal, and poorly functioning system might become even more so for people with neurological disorders. Without a clear targeted focus on neurological disorders, the government's new long-term conditions strategy that is currently being developed will fail this growing group of patients yet again. A clinical champion for neurology who will present a national strategy with clear targets, an inbuilt monitoring and data collection system, and priorities for research is urgently needed and long overdue.

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Article Info Publication History Identification DOI: https://doi.org/10.1016/S0140-6736(12)60123-8 Copyright © 2012 Elsevier Ltd. All rights reserved. ScienceDirect Access this article on ScienceDirect