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FAQ - To recognise the unique role of the general practitioner from diagnosis to death

What is the role of the GP?
It used to be stated that a GP might expect to see a maximum of one or two patients with Motor Neurone Disease (MND, commonly called ALS – amytrophic lateral sclerosis) during their professional lifetime. Now with large shared lists, exposure to and experience of this condition in primary care is probably more frequent, although it remains very uncommon. As such, it is entirely understandable that the index of suspicion is low when a patient presents with what appear to be non-specific symptoms. If there are lengthy waits for neurology appointments and subsequent tests, this can lead to anxiety, dissatisfaction and may delay symptomatic intervention. However, most neurology departments in England and Wales work to a maximum 11 week outpatient wait and some even less.
Putting patients on the Supportive Care Register (Gold Standards Framework) will help those in the primary care team to ensure regular reviews are undertaken and planning made for the future needs.
In the face of rapidly progressive disease with no cure available, it is easy for the patient's GP and hospital physicians to develop a sense of helplessness. However, the GP's role is pivotal, not just in co-ordinating services but also in the prompt management of symptoms, which can greatly improve quality of life.
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