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Good Practice Guide and examples

Clinical Nurse Specialist for Rare Neurological Conditions, West Berkshire

Last modified date:

14 January 2008

The Berkshire West Rare Neurological Conditions Nurse Specialist post was initially funded by 4 local charities (West Berkshire Nuerological Alliance, MND Association (Reading and West Berkshire), British Polio Fellowship (Berkshire branch) and Huntington’s Disease Association (Reading branch)) from October 2005-07, and, following positive findings of an impact study, is now funded by the NHS.

The post is 80% community based, with a strong emphasis on prevention. The nurse provides support and interventions which among other things reduce hospitalisation rates and other undesirable experiences for patients affected by Motor Neurone Disease, Huntington's Disease, Ataxia, Multiple System Atrophy, Myasthenia Gravis, Late Effects of Polio and Supranuclear Palsy. The post has been found to be both clinically and cost effective by independent research conducted by Reading University showing a payback of over twice the cost, coupled with very strong approval ratings from patients and carers.

http://www.wbna.org.uk (opens new window)

In setting up this post the seven conditions covered were those defined as 'rare conditions' only because the more common neurological conditions of MS, Stroke and Parkinson's already had nurse specialists in post locally and specific services were under consideration or development for epilepsy and for head & spinal injuries. The population covered by the nurse is 450,000, in a semi rural setting of about 900 square miles. In such an area an active caseload of about 50 patients is manageable.

For further information please contact:
Methodology of the Impact Study and significance of the findings: Dr Ann Quinn, Reading University