Job Overview

To provide an essential role in supporting individuals with neuromuscular conditions Pan BCUHB. The post holder is expected to successfully co-ordinate the health and social care needs, provide support and information to families and ensure a seamless transition from child to adult services, where applicable.

To provide a regional point of contact for information and advice for those affected by a neuromuscular condition, their families and the professionals working with them.

To support the neuromuscular network in the planning and provision of neuromuscular services, providing a regional planning role for these services.

Main duties of the job

• The post holder will be responsible for engaging in the development and implementation of care pathways, protocols and communication strategy with colleagues from the public, private and voluntary sectors across Wales.
• The post holder will co-ordinate the specialist advice and support in the stages immediately following the outcome from the Newborn Screening process and following the diagnosis of a neuromuscular condition.
• The post holder will provide awareness raising sessions for staff groups involved in providing health and social care services and support to those living with a neuromuscular condition and their carers.
• The post holder will attend multidisciplinary clinics with the lead clinicians to provide expert advice and support to families, carers and children or young people living with a neuromuscular condition.
• The post holder will develop self and the advisory post in line with the recommendations from the Thomas Report (2010) and the recommendations from the Wales Neurosciences review.
• The post holder will be responsible for developing and maintaining an up to date database of local resources that can meet the needs of people with neuromuscular conditions and their families.
• The post holder is expected to build and maintain links with local professionals and voluntary services and develop expert knowledge of other resources that can provide help and support with e.g. benefits and bereavement services.