Neuromuscular Advisor

The role of the Neuromuscular Advisor is to provide specialist, holistic support, advice and education for adults & children with neuromuscular conditions, their families and carers; in Bristol, North Somerset, South Gloucestershire, Gloucestershire, Wiltshire & Somerset.

The Advisor will promote a culture of service excellence, adopting and promoting national standards of care.They will support, enable and empower individuals with neuromuscular conditions and their carers to make informed choices about their health and other care. They will beinvolved and provide advice on care pathways and research regarding neuromuscular conditions at a local and national level.

The Advisor willmaximise independence with the flexibility, sensitivity and forethought required to meet the specific physical, emotional, spiritual, cultural and social needs of the individual.

The advisor will work in partnership with other Specialist Neuromuscular Network staff, to contribute to the development of the service, andwork in partnership with other service providers to maximise the health, independence and quality of life of people living with a neuromuscular condition. They will alsoliaise with the Neuromuscular Care Advisors across the UK in order to develop neuromuscular services.

The post will involve regular contact with clinical staff, patients, carers and provide ongoing support and information for people living with a neuromuscular condition and their families/carers.

The post holder will attend specialist clinics (adult, paediatric & transition), liaise with clinicians & provide support within the clinic. The post holder will also provide education, teaching and training to patients, families/carers and other professionals about living with a neuromuscular condition.

The post holder will provide information and advice to school and workplace professionals in order that people living with a neuromuscular condition are supported in these environments.

They will offer home visits at time of diagnosis and at other times to provide specialist advice, practical and psychosocial support.

The post holder support at times of crisis, including at times of bereavement and act as an advocate assisting families to proactively plan for future needs, liaising with statutory and voluntary agencies.

The post holder will manage a patient caseload within agreed service guidelines and effectively work in partnership with other professionals.

The post holder will spend a considerable amount of time as a lone worker. They will need to follow North Bristol NHS Trust guidance on safe practice.

The post holder may be required to attend national and regional conferences.

The post holder will develop knowledge & manage records regarding the community services available.

The South West Neuromuscular Operational Delivery Network (SWNODN) is a clinically driven network of key stakeholders including doctors, allied health professionals, NHS managers, commissioners, patients, carers and their families.

Our aim is to develop and establish world class and equitable care for people of all ages living with rare neuromuscular conditions in the South West of England, and to improve their quality of life and overall experience of NHS services.

As part of the team, you will be based in Southmead hospital, but work in the Childrens Hospital and Gloucester Royal to help deliver our service. There will also be travel to other outreach clinics and home visits as necessary.

The role will involve regular contact with clinical staff, patients, carers and non-statutory groups and organisations associated with neuromuscular services.

To provide ongoing support and information for people living with a neuromuscular condition and their families/carers.

To attend specialist clinics (adult, paediatric & transition), liaise with clinicians & provide support within the clinic.

To provide education, teaching and training to patients, families/carers and other professionals about living with a neuromuscular condition.

To provide a proactive service to people living with a neuromuscular condition.

To provide ongoing support and information to people living with a neuromuscular condition and their families/carers in a variety of settings e.g. home, hospital, public engagement events, etc.

To engage with and provide information and advice to school and workplace professionals in order that people living with a neuromuscular condition are supported in these environments.

To offer home visits at time of diagnosis and at other times to provide specialist advice, practical and psychosocial support.

To secure services for families as appropriate.

To facilitate and support at times of crisis, including at times of bereavement.

To act as an advocate assisting families to proactively plan for future needs, liaising with statutory and voluntary agencies.

To provide specialist information and education to enable families to make informed choices about their futures