Community Huntington's Disease
Aims and objectives of service
This service provides specialist workers to support people with Huntington’s Disease and their carers to manage their condition and to live as independently as possible. Specialist rehabilitation and support is provided for people with long term neurological conditions.
Objectives of the service are to: prevent avoidable deterioration; to promote faster recovery where possible; to promote independent living and maximise skills; to avoid excessive length of stay in hospital; to reduce unnecessary admissions to secondary care; to support and maintain appropriate care packages and avoid inappropriate or premature admission to long term care; to implement best practice palliative and end of life care tools.
A key aim of the service is to create a seamless pathway of care between all services including acute, primary, secondary, tertiary and social services.
Patients accessing the service are given a single point of access to the service and a named individual is responsible for co-ordinating their care. They receive a specialist assessment of their needs (multi-disciplinary where appropriate) and a personal care plan, which is transferable between agencies and becomes a point of reference for contact details and advice for their condition.
The service is provided by a specialist, multi-professional team including: Physiotherapists, Occupational Therapists, Speech and Language Therapists, Specialist Mental Health Nurses, Psychologists, Social Workers, Dieticians, Support Workers (Assistant Practitioners and Rehabilitation Support Workers) and Specialist Nurses.
The service links with Nottingham University Hospital neurology services, Nottingham University Hospital rehabilitation unit, Linden Lodge, ASH and other community services e.g. community matrons, community stroke team, Community Macmillan Service, district nursing teams, the end of life team, the return to work team, mental health services, continuing care, relevant end of life care services such as Hospice at Home, palliative day care and carer respite services.
Days/hours of operation
Access to advice and support is seven days a week.
The service provides guidance to ensure referrals are appropriate and managed in a timely manner. The agreed referral form and pathway includes direct access from the neurology clinics via the specialist nurses.
The service covers patients with diagnosed Huntingdon’s Disease who are registered with a GP in the Nottinghamshire County Clinical Commissioning Groups (CCGs) and the South of Nottinghamshire County CCGs: Rushcliffe, Nottingham West, Nottingham North and East.