H024 Establishment of a multidisciplinary HD clinic and the importance of clinical nurse specialist

<h3></h3> The NHS in England does not have a service model that outlines the delivery of care for patients and families affected by Huntington’s Disease (HD). This results in the standard of care being variable dependant on local services and proximity to specialist clinics. A collaborative project developed a proposed HD Service model to improve the care of patients with HD, their family members and carers residing in SW London, Surrey and West Sussex establishing funding for a Clinical Nurse Specialist (CNS) in 2022. Here we present the impact of the establishment of this role with a Service Audit (April 2023 to April 2024) and importance of the role in complex case management. During the audit period there is record of 249 patient contacts with CNS. This number represents a cluster of clinic appointments, professionals’ meetings for support and advice, research activity and referrals. The Clinical Nurse Specialist has become a single point of contact for patients and their families across the region; with a fundamental role in communication across primary, secondary and community care agencies including mental health services to integrate care between specialities. They provide regular follow up and monitoring reducing face to face hospital appointments where possible and early escalation of concern and have established a complex MDT case forum. During a recent complex case management, the nurse (with support of HD consultants) liaised with 34 professionals in multi-agency meetings and case discussions to establish adequate care provision and safeguard a vulnerable 32-year-old female with manifest HD.