Motor Neurone Disease Association Research Specialist Nurse

Job overview

1.To act as a specialist in knowledge in MND (motor neurone disease) and MND patients research participation as well as advise on the complex nursing care of MND patients when participating in MND research. To proactively support MND patients and their carers and health colleagues across the South West region to promote inclusion of MND patients into research across the South West region.

• Proactively lead and develop an MND person‑centred research service as part of an MND research nurse network. Working alongside patients and carers as well as stakeholders across the South West region.
• To ensure that everyone diagnosed with MND in the South West region has access to the support and opportunity to take part in research across the region, working across organisations and linking closely with complex care services and research delivery teams and research leads.
• To support people with MND to navigate the research process, providing information about current MND research opportunities, identifying research that people living with MND are eligible for, explaining what is involved, and supporting people with their application and ongoing involvement in trials—while ensuring their complex care needs are recognised and supported throughout.

Main duties of the job

• Contribute to the progress of MND research and clinical trials, dedicating 100% of efforts to supporting, delivering, and leading initiatives that contribute to breakthroughs in MND care and understanding.
• Collaborate effectively with the MND Association to support the strategic development and growth of the Research Nurse Network in the South West region.
• Oversee and support clinical trials across the region and research efforts aimed at improving outcomes for people living with MND, playing a pivotal role in facilitating high-quality research and trial execution
• Collaborate with multidisciplinary teams across the South West region to ensure studies are conducted smoothly and in full compliance with protocols, legislation, and relevant guidelines.
• Maintain and manage clinical research databases for MND studies, ensuring accuracy and currency of all research data to support impactful finding. Also ensuring the data is pulled from the differing services across the south west region and these complex data sets are interpreted correctly for the purposes of research.

Detailed job description and main responsibilities

1 To drive collaborative opportunities within the MDT team. Working closely with care coordinators and other MDT members, emphasising seamless coordination, shared goals, and effective communication across departments to enhance complex care delivery in research for MND patients, and ensure alignment with the latest research insights and objectives.

2 To champion the diverse and often complex care needs of people living with MND by working in a manner that facilitates inclusion and collaboration, within and beyond the MND Association.

3 Responsibilities include coordination of care of people living with MND on trials and studies, ensuring effective communication between Care Centre / Networks and research teams, with a strong focus on meeting complex care requirements during research participation.

• Serve as an expert resource for patients, caregivers, and healthcare professionals, offering information and support on MND research and clinical trials.
• Handle additional responsibilities essential to the efficient operation of MND research network and trial initiatives, such as patient meetings to disseminate study findings for example or work within MDT groups to align MND patient research participation in current care pathways.

***Preference will be given to internal Trust staff, as well as ‘Priority’ and 'At Risk' status including NHS At Risk staff throughout Devon who are able to display recent relevant experience as dictated by the Person Specification.***

Applicant requirements

You must have appropriate UK professional registration.

This post is subject to the Rehabilitation of Offenders Act 1974 (Exceptions) Order 1975 (Amendment) (England and Wales) Order 2020 and it will be necessary for a submission for Disclosure to be made to the Disclosure and Barring Service.