The Impact of neurological illness and disability Discussion Paper.

Epidemiological aspects

Neurological disorders have certain notable characteristics:

• They are large in number

• Few neurological disorders are totally curable, although new, and expensive, treatments are currently being introduced for many of the major neurological disorders including multiple sclerosis, motor neuron disease, stroke, epilepsy, and Alzheimer’s disease

• Neurological disorders are associated with many symptoms

• Neurological disorders are a major cause of disability and account for a high proportion of severely disabled people under the age of 65.

• The adverse effects of most neurological diseases can be reduced.

Three arbitrary groups of neurological disorders can be identified according to their frequency in the general population. Neurological disease, looked at as a group, may be likened to an animal having a small head, a rather large body, and a very long tail. There are a few common diseases, a greater number of less common disorders, and a huge number of uncommon disorders comprising hundreds of separately identifiable conditions. The total cost of the many uncommon diseases taken together is considerable and may well approach that of the common diseases.

Neurological disorders characterised by full recovery

There are a few disorders that are followed by full recovery (for example, carpal tunnel syndrome and some forms of meningitis). Some are cured by neurosurgery (for example, benign tumours). Overall, these disorders probably do not contribute in any major way to the total burden of neurological disease although they have the potential to do so if they are not dealt with properly. Although the disease process may be arrested by neurological, neurosurgical, or other interventions, some patients are left with permanent disability.

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Disorders that cannot be cured

Many patients in this group can be helped by various medical or surgical procedures. Rehabilitation is often of much importance. The group contains many disabled people. A large proportion of the total personal and national burden is produced by this group.

There are several ways of considering the problems of those with chronic neurological disorders. Each of the following classifications underscores the importance of prolonged disability on personal and economic capacity.

The first classification is by dominant clinical problem.

Those for whom the main problem concerns physical disability—Examples of disability are inability to walk, incontinence, and difficulty with performing activities of self care). The group includes those with multiple sclerosis, motor neuron disease, and Parkinson’s disease.

Cognitive impairment—This group includes the survivors of closed head injuries, Alzheimer’s disease, and Huntington’s disease. The burden of this group may include the difficult problems of wandering, aggressiveness, incontinence, and concerns about safety (for example, some people with dementia may risk their own and other lives through unsafe use of matches and cigarettes).

Intermittent disturbance—Examples include epilepsy, narcolepsy, movement disorders, and migraine. People in this group experience much difficulty with planning their lives because of the uncertainty caused by the condition.

Pain—This group contains those patients whose principal problem is pain. Example disorders are trigeminal neuralgia, sciatica and chronic back pain, migraine, and diabetic neuropathy.

Those in whom a mixture of two or more of the previously listed problems are present—For instance, Parkinson’s disease may be associated with dementia and indeed cognitive disturbance may eventually come to dominate the clinical picture. The above classification allows identification of the principal clinical problem(s).

Another classification involves a consideration of how the burden of disease is determined by the age of onset. This grouping was originally suggested by Warren.

Disorders with onset in childhood —Disorders with onset in childhood include cerebral palsy, epilepsy, muscular dystrophy, and spina bifida. A huge personal burden is likely to fall on the family—often preventing one of the parents from working, with obvious financial implications. The main National Health Service (NHS) burden will fall initially on the paediatric services and the primary care team. The organisation of appropriate schooling is essential. The Impact of neurological illness and disability Discussion Paper.

Disorders with onset in adolescence and early adult life—The objectives of normal adolescents include becoming independent of parents, moving away from home, completing education, obtaining employment, developing sexual competence, learning to drive, and becoming financially independent. Additionally, there are the usual emotional upheavals to be tolerated! All these objectives are more difficult to achieve if the person has a major neurological problem—especially if there is associated appreciable disability. Closed head injuries resulting from road traffic accidents are a particular problem at this age.

A major investment of time, skill, and resources is required if the young person is to achieve his or her full potential. Arrangements for transition from school to work and from paediatric to adult health services need to be considered at this time.

Age 26–55—This is the stage of life at which children are being conceived and reared. Employment and career are important, and often a house is being bought. Additionally, sexual activity is at a high level. Rates of separation and divorce are high. Parents are becoming increasingly frail and are often less able to help. All those social elements are likely to be important in considering the effects of a major neurological illness such as multiple sclerosis. Other relevant conditions include epilepsy, migraine, and other headache syndromes.

Diseases occurring in this age group have important effects on employability, with a resultant strain on personal finances, as well as loss of tax revenue on earned income and a drain on the social security budget.

Age 55–75—The average person retires in this time and is able to anticipate a number of years of disability free life. Many people remain physically and mentally fit. Parents have usually died by now. Neurological disease may affect this otherwise enjoyable phase of life. Some of the disorders of later life start to appear including stroke, Parkinson’s disease, Alzheimer’s disease, and motor neuron disease.

Age 75 onwards—The proportion of people who are disabled increases markedly from age 75 onwards. The period is responsible for a large proportion of health costs. There is increasing general frailty with multiple health problems. Geriatric services are heavily involved. An increasing number of people live alone. The important neurological diseases include stroke (responsible for about 25% of severe disability in people living in their own homes), Alzheimer’s disease, and Parkinson’s disease. Another way of examining the burden of neurological disorders involves the time course of disease. Six arbitrary groups of conditions emerge. Disorders which cause sudden death, or which are followed by rapid recovery, are not included in the discussion as they add little to the burden on health care services. The Impact of neurological illness and disability Discussion Paper.

Sudden onset with severe damage and little, or no, subsequent improvement—This group includes catastrophic head injury, Herpes simplex encephalitis, severe stroke, and spinal cord transection. The results may be a persistent vegetative state, the locked in syndrome, or permanent paraplegia/tetraplegia. Some patients remain totally dependent and are a major burden on the hospital and other services, as well as to their families.

Sudden or gradual onset with at least some subsequent improvement—Many disorders fall into this group including stroke, head injury, incomplete spinal cord injury, and Guillain-Barré syndrome. In some instances there is complete recovery and in others there is permanent disability. High quality intensive care is often initially needed followed by rehabilitation input, representing a significant burden on the health services.

Lifelong disability from childhood—Many disorders in this group are non-progressive or only slowly so. Examples are spina bifida, cerebral palsy, treated hydrocephalus, and early onset epilepsy. These disorders represent a major burden for families—leading to, for instance, restricted employment for at least one of the parents.

Disorders characterised by fluctuation and uncertainty—Multiple sclerosis, epilepsy, narcolepsy, and migraine are examples. The personal burden involves difficulty in planning ahead and a major effect on employment opportunities and relationships. Secondary psychological and psychiatric problems are common.

Gradual onset with predictable death within six months to five years—Creutzfeldt-Jakob disease, malignant glioma, and motor neuron disease are in this group. Death is sometimes preceded by distressing symptoms. Expert terminal care is often needed.

Gradual onset with death due to the disease many years after onset—This group contains disorders that can occur at any age—Duchenne muscular dystrophy, Friedreich’s ataxia, some leukodystrophies, Huntington’s disease, severe multiple sclerosis, Alzheimer’s disease, and Parkinson’s disease are examples. Prolonged and severe disability may ensue. The group has major personal and national implications. For instance, the vast majority of the people in units for younger disabled people are there because of the effects of neurological disease. The Impact of neurological illness and disability Discussion Paper.

The perspective of the patient and his or her family

Many accounts of personal experiences of neurological diseases exist and illustrate that the burden on the patient and family may be enormous.

Many patients are reluctant to admit secret fears related to the diagnosis. Thus a patient with severe headache may harbour fears that he may have a brain tumour. A thorough clinical assessment may reassure him that his fears are groundless. The devotion of half an hour of consultant time (and possibly a brain scan) may totally relieve him of his secret burden.

The effective making, and telling, of a serious diagnosis is much appreciated. If appropriate, a second opinion may be arranged. Unnecessary uncertainty regarding the diagnosis is a burden that should be avoided if possible. There may be anxieties about other matters including the availability of treatment, the outlook, and any genetic implications. The Impact of neurological illness and disability Discussion Paper.

There are “medical” outcomes that may be particularly feared. It may be possible to provide reassurance in many instances or to adopt some other approach, again reducing burden.

They include the following:

• Dementia and change in personality—“will I lose my mind?”

• Incontinence

• Uncontrollable pain

• Severe physical disability and dependancy

• Change in physical appearance (for example, facial palsy in a teenage girl, loss of hair with neurosurgery or radiotherapy, loss of facial expression in Parkinson’s disease)

• Adverse effects on sexuality or reproductive life

• Inability to communicate with others (for example, pseudobulbar palsy due to motor neuron disease).

There are also socioeconomic concerns including the following;

• Dependency—“will I become a burden?”

• Children—“who will look after the children?”

• Employment—“what will happen if I lose my job?”

• Finances—“how will we cope?”

• Driving—loss of driving mobility can represent a major burden and may even result in loss of a job

• Leisure activities—“will I still be able to watch my favourite football club on Saturdays?”

• Effect on my family and career—“will I continue to be able to look after my spouse and children?”

 Patients require a considerable amount of help at the time the diagnosis is made and also at times of crisis, such as during a major relapse of multiple sclerosis. This help should come from various sources including the neurologist, the family doctor, and the multidisciplinary team (which will include a social worker, community nurse, and therapist). Many patients appreciate the availability of professional, and lay, support (including that given by voluntary organisations). Expert advice relating to state and other financial benefits and allowances is a further important matter and professional guidance on this topic is provided by social workers.

 Effective interventions along the above lines are likely to lessen personal burden. Patients need to know that they will not be abandoned by the specialist services, and that expert or informed help and advice is always available. The Impact of neurological illness and disability Discussion Paper.