In March 2005 the UK Department of Health released the national service framework for long term conditions. 1 This framework comprises 11 requirements for improving, over the next 10 years, the quality of health and social care services for people with long term neurological conditions: persistent brain disorders with a wide range of complex physical, social, and psychological complications. This document may go some way towards raising awareness of some of the greatest unmet needs in the NHS.
The burden of such conditions is huge. Fifteen years ago the World Health Organization showed that broadly defined neuropsychiatric disorders were the most important cause of disability worldwide. w1 Some 10 million people across the United Kingdom have a neurological condition, and nearly 2 million care for someone with either a neurological or a mental health problem. w2
Around half the patients with long term active neurological conditions in the United Kingdom receive no help beyond that of their general practitioner. 2 Unmet needs reduce quality of life both of patients and carers. 3 The needs that are most commonly overlooked are psychological, psychiatric, and behavioural—often referred to collectively as “neuropsychiatric” in nature. 4
Most of the principles of care are shared across specialties for people with neurological and psychiatric disorders. Yet some will disagree with the idea of a combined strategy for these disorders, especially those who have trained in the UK, where the two services are almost entirely separate. Relatively disparate training and service provision may explain why referrals from neurology to psychiatry under-represent the burden of psychiatric comorbidity and why patients' psychological needs may be detected relatively late. 5 Conversely, the detection of important chronic medical conditions in psychiatric settings is often delayed. w3 Diagnostic delays seem to be particularly lengthy for conditions with prominent neuropsychiatric features, such as epilepsy, w4 motor neurone disease, w5 Parkinson's disease, w6 and Wilson's disease .w7 Yet, although the new framework highlights the need for specialist care from mental health services, it does not mention the need for better medical care within psychiatric services. Relatively few specialists working in local services will be equipped to deal adequately with such combinations of neuropsychiatric problems. But neurologists could be required to give further emphasis to psychiatric aspects of disease and psychiatrists may need to give equal emphasis to neurological aspects. 6
The framework's focus on patients' psychological, social, and emotional needs is of more than academic interest. Half of people newly assessed in neurological outpatient clinics have a comorbid psychiatric disorder, and at least a third of neurological patients want additional psychological support. 7 Psychiatric and behavioural symptoms are often the earliest presenting complaints of many common neurological conditions. w8-w11 In addition, psychiatric complications predict poor outcomes from rehabilitation in most chronic neurological disorders and may even be associated with early death in several conditions w12-w14
Equally importantly, psychiatric complications considerably reduce quality of life in all neurological conditions studied to date. w15-w20 Moreover, psychiatric complications of neurological disease cause most distress and burden to patients and their carers. 8 But will the framework be sufficient to change practice, when the evidence base for such interventions is incomplete and acceptable interventions that can improve quality of life for chronic conditions are not uniformly available? 9
Evidence shows that inpatient rehabilitation for people with injuries to the spinal cord and brain is most effective when delays are short, when the package of care is comprehensive, and when there is follow-up in the community. w21 w22 The framework supports such care from multidisciplinary specialist teams, and those that can provide little neuropsychiatric care should forge clear and accessible links with mental health services to ensure that patients with comorbid psychological conditions are recognised and treated appropriately. Holistic and integrated care will require further improvement of neuropsychiatric services. Quality improvement approaches can help multiprofessional teams to detect psychiatric disorders among patients in acute neurological wards and in long term care settings. 10 Studies in primary care and accident and emergency units show that participation in educational programmes can improve staff's recognition of mental health problems: similar training could be adopted in neurology. However, to retain skills staff will need ongoing education and support. w23
The national service framework for long term conditions heralds a welcome shift away from the narrow medical models of the past and, if interpreted in the right spirit, it could be a catalyst for much better care. Although the framework applies only to the NHS, its criteria for high quality care are universally applicable. The cost of providing such good quality care will undoubtedly be high, but the cost to society of not providing it could be much higher. 11 ,12
Additional reference w1-w23 are on bmj.com