The nurse specialist role in managing Huntington's Disease and other complex dementias

Short Title Nurse Specialist Role
Category Post Diagnosis
Organisation HE-W, CLAHRC, UHS FT
Contact Name Fiona Chaabane
Contact Email
Web Link
Sector Hospital/Acute Care Community
Region Hampshire
Postcode SO165YA
Active Yes

Quality improvement project to map and evaluate patient and carer experiences of service provision to identify the types of services needed, when and where they are required in LTC management and how they respond to changes in clinical, neurological or psychiatric status.

Work will focus on the development of an integrated care pathway and care navigator role for those with Huntington's Disease and other complex dementias, and their families.


The introduction of the CNS role has facilitated follow up domiciliary care, including crisis intervention, enabling identification of areas for improvement in accessing service provision and a first-hand  insight into negotiating service pathways  for younger patients with neurodegenerative conditions.

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