KEY RESPONSIBILITIES Operational Under the guidance and supervision of the CNS: To provide a telephone or face-to-face triage service within an agreed scope of practice. Signposting of queries as appropriate to the clinical, information or administrative teams. Ensure prompt documentation of patient/carer contacts, on recognising that the key worker has personal accountability for entries to patient records made by others under their supervision so must be informed. Using excellent communication skills, and appropriate tools and procedures, liaising as appropriate with the CNS when non routine and refer complex decisions to the team for assessment and review. To support the CNS in coordination of care for Haemoglobinopathy patients from referral throughout their treatment. To visit patients as in-patients or out-patients as directed by the CNS providing information and support as directed. Support patients by helping to complete Patient Feedback forms and developing Care Plans at pivotal points during their Haemoglobinopathy care pathway. To provide a touch point for patients to ensure two-way communication during treatment. To provide guidance, contact and support for Haemoglobinopathy patients as they journey through our hospital(s). To ensure all relevant patient appointments for nurse led services are notified in a timely manner providing an excellent patient experience providing required information. Support people affected by Haemoglobinopathies to self-manage during and after their treatments. Coordinate face to face appointments as per MDT instructions. Support and contribute to audit processes, governance, research, clinical research trials and service development. Support the planning/inviting/organising of informative events for patients. Plans own workload daily and sets priorities for workload management. Able to complete tasks in a timely manner and according to relevant protocols for service. Care coordination and navigation of care and support. Under the guidance and supervision of the CNS: To coordinate the follow up investigations required as part of the patients treatment. To maintain an accurate and validated Haemoglobinopathy data base(s) e.g., hydroxycarbamide To develop and maintain a good professional relationship with patients and with the specialist Haemoglobinopathy team. To facilitate access to health and well-being services and other support services. To provide basic telephone advice and refer on or signpost to other sources of support as per instruction. To be a point of contact for patients and families whilst they remain Haemoglobinopathy patients. Prepare relevant written patient information folders. Provide supported self-management through coaching around managing side-effects of the disease or treatment as well the psychological, financial, social and employment burdens of living with a Haemoglobinopathy. Provide health promotion advice to patients and their carers/relatives around being active and making healthy lifestyle choices and make referrals as appropriate. Coordination of education and provision of advice Support patients and carers to access up-to-date and appropriate information and support, including sign posting to a range of support services. Support the direction of the patient or carer to education or support areas. Encourage and support active and healthy lifestyle choices. Support patients and carers to understand what signs, symptoms, or situations to be aware of that would indicate concern. Inform patients and carers on how to make contact when they feel that their condition or needs have changed, including what to do out of hours. General Responsibilities Identify personal education needs and skills development with the Clinical Nurse Specialist Be responsible for own personal educational, keeping up to date with changes to practice, to ensure highest possible standards of work. Participate in an annual review with the Clinical Nurse Specialist and Lead Haemoglobinopathy Nurse ensuring highest possible standards of work. Review own work and identify with the relevant people the activities to be undertaken to support learning and development. Participate in annual staff appraisal, staff development and training activities. Actively take part in learning activities and maintain a record of these in personal portfolio to obtain skills required for the post. Carry out administration duties required by the role including filing, report writing, documenting decisions made, and minute taking for Local/Network meetings. Understand that there will be some distressing situations and when to seek appropriate support/advice. Demonstrate an awareness of the limits of own practice and knowledge and when to seek appropriate support/advice. Feedback patient and carer concerns / unmet needs to CNS as appropriate. Information Management Records information on database and prepares reports when requested. Good general Office keyboard skills.