Sources of evidence

Neurologists, specialist nurses and general practitioners are able to provide reports confirming the diagnosis of motor neurone disease. Additional information regarding the extent of the disabling effects and treatments being used may be obtained from other multidisciplinary team members i.e. specialist nurses, physiotherapists, speech therapists, occupational therapists, community nurses and social workers. The work of the health care professionals may be

coordinated by one member of the team, who is designated the key worker or care coordinator.

Many people experiencing rapidly progressive motor neurone disease will be receiving palliative care. Evidence that death may be reasonably expected within six months can provided by general practitioners, hospice doctors, neurologists and palliative care nurses. Advice should be obtained from Medical Services

to establish the stage of the disease, if it is not clear from medical reports. It is important to distinguish cases with rapidly progressive functional restrictions and a short life expectancy, from those cases of the less common types of motor neurone disease who have a longer survival time.

A HCP Examination report is likely to be useful only in the minority of cases with longer life expectancy, where the disabling effects of the condition are localised and less severe earlier in the disease.

Amended June 2008