Neuromuscular Advisor

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 and to plan ahead and obtain the right equipment, adaptations & educational support in good time. Manage a patient caseload within agreed service guidelines and effectively work in partnership with other professionals. To liaise with other professionals and to raise concerns over unmet needs and areas of risk. To identify gaps in local services relating to neuromuscular conditions and promote and champion the development of these services within specified areas To seek and identify funding for resources on behalf of people living with a neuromuscular condition and to work towards creative/alternative resolutions regarding funding as necessary.

The post holder will be responsible for advising on the availability of clinical services. The post holder will be expected to work as part of a team to develop service delivery. The post holder will work with clinicians on reviews of clinical governance arrangements, the standards of care, services and outcomes for patients. The post holder will work closely with colleagues to help develop a collaborative culture among clinicians and other professionals delivering neuromuscular services; ensuring effective dialogue between key stakeholders.

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 will manage a caseload within their specific region and will be responsible for prioritising their own workload. 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. To maintain professional registration and take part in relevant training to maintain continuing professional development. The post holder will contribute to the development of public engagement within neuromuscular and related services.