Case Study: Improving a Community Based Huntington’s Disease Service – A Family-Centred Approach

  • Sharon J. WilliamsEmail author
  • Lynne Caley


This chapter provides a case study of research undertaken in the UK, to examine the improvement activities of a community-based Huntington’s Disease specialist multi-disciplinary team. From undertaking experience based interviews with staff, patients and relatives and observing relative and patient group meetings it was possible to map a generic patient journey. Using the principles of person-centred care and a conceptual co-production model, we discuss the wider learning for co-producing improvement activity from this case. We recognise the provision of Huntington’s Disease services will differ across the UK and therefore the involvement models illustrated here may not be fully applicable to all service models for this complex long-term condition.


Co-production Huntington’s Disease (HD) Person-centred Family-centred Multi-disciplinary Patient and public involvement (PPI) Plan-Do-Study-Act (PDSA) Model for Improvement 


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Copyright information

© The Author(s) 2020

Authors and Affiliations

  1. 1.College of Human & Health SciencesSwansea UniversitySwanseaUK
  2. 2.Consolidated Caley LtdPeterboroughUK

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