Learning from experience: How can we best help people with rare, difficult to diagnose, or controversial conditions?

Fish, J. , Betteridge, S. and Wilson, B. A. (2023) Learning from experience: How can we best help people with rare, difficult to diagnose, or controversial conditions? In: Fish, J., Betteridge, S. and Wilson, B. A. (eds.) Rare Conditions, Diagnostic Challenges, and Controversies in Clinical Neuropsychology: Out of the Ordinary. Routledge: London, pp. 360-367. ISBN 9781032132242 (doi: 10.4324/9781003228226-28)

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Abstract

The Neurological Alliance published a report finding that relative to those with more common neurological conditions, people with rare neurological conditions are less likely to understand their condition, less likely to receive either written information about their condition or signposting towards this information, less likely to receive a care plan, less likely to see a specialist nurse, less likely to be asked about their mental health, and more likely to experience poor transmission of information between professionals and to have a poor experience of social care. Service delivery models and clinicians’ job plans both need to account for this, but public health services are often designed and funded based on face-to-face activity for the ‘average patient’ or the most common patient presentation.

Item Type:Book Sections
Status:Published
Glasgow Author(s) Enlighten ID:Fish, Dr Jessica
Authors: Fish, J., Betteridge, S., and Wilson, B. A.
College/School:College of Medical Veterinary and Life Sciences > School of Health & Wellbeing > Mental Health and Wellbeing
Publisher:Routledge
ISBN:9781032132242
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