2. JOB PURPOSE/SUMMARY The Jobholder is responsible for the management of a defined caseload. The jobholder carries continuing responsibility for the assessment of care needs, the development, implementation and evaluation of programmes of care and the setting of standards of care. The jobholder will provide specialist nursing care and advice to a specific patient group and will contribute to the development of the speciality service. The jobholder will ensure cost effective use of resources. The PNH service is a nationally commissioned service, which is one of two designated centres commissioned to provide specialist support to patients with PNH and their families throughout the country. The service is delivered from the Haematology department in Bexley Wing, St Jamess University Hospital. The team deliver eight outreach clinics in cities throughout the United Kingdom, requiring the successful candidate to be flexible in their working hours and have a commitment to travel across the UK. PNH is a very rare, acquired bone marrow disorder characterised by intravascular haemolysis with resultant anaemia often leading to transfusion dependence, severe disabling symptoms of haemolysis and increased risk of thrombosis. Aplastic anaemia is a rare haematological disorder, characterised by bone marrow failure. There can be overlap between Aplastic Anaemia and PNH. The role involves maintaining clear lines of communication with the multidisciplinary team, referring hospitals, and tertiary referral centres across the UK, providing advice, support and education where appropriate and to ensure cohesive multidisciplinary management of patients and being committed to the development and delivery of this specialised service.. PRINCIPAL DUTIES & AREAS OF RESPONSIBILITY Acts in accordance with the Nursing and Midwifery Code of Conduct Clinical Clinical care delivery - Provide a clinical lead and role model to nursing staff by delivering high quality care. - Undertakes clinical procedures where dexterity and accuracy are required. - Maintain a safe working environment Responsibilities for patient and client care - Assesses, plans, implements and evaluates care and treatments using specialist clinical knowledge and skills. - Organises own clinical workload. - Receives supervision of clinical care and outcomes from Matron. Freedom to act - Refer patients as appropriate to other members of the multi-disciplinary team - Make clinical assessments and treatment decisions within clearly defined policies and protocols Communication - Maintains accurate clinical and other records using the Leeds Teaching Hospitals Trusts documentation. - Support patients and their families communicating sensitive condition related information and ensuring they receive required information to enable them to participate in their care delivery - Liaise with Community Services (as appropriate) to ensure seamless provision of care delivery Education and Training - Provide training and education of learners and other junior staff - Actively participate in the development of own personal development plan and performance review - Provide education and training to patients and their carers. - Keep up to date with developments, advances within the specialty Leadership and management - Investigate and respond to accidents, complaints, untoward incidents and other significant events - Work with Matron to promote the development of nurses undertaking the CNO Ten Key Roles as considered appropriate - Under the direction of Matron participates in or leads the development of specific elements of nursing practice, reflecting the CMT and Nursing Directorate business plans - Participates in the setting, monitoring and improvement of standards and the quality of patient care, including those standards defined in the National Benchmarks for Essential Care - Promote evidence based practice, wherever possible - Engages users and carers views on service delivery and development - Implement policy and practice guidelines specific to the clinical specialty, proposing changes where appropriate - Contribute to policy and protocol development for speciality area - Exercises a personal duty of care in relation to equipment, resource and stock control utilising equipment and supplies appropriately. Research and Audit - Contribute to the research agenda - Undertake audit programmes specific to client group, treatments and developments. - Participate in clinical trials as appropriate.. THE LEEDS WAY VALUES Our values are part of what make us different from other trusts, so we see this as a strength, as well as a responsibility. They have been developed by our staff and set out what they see as important to how we work. Our five values are: Patient-centred Collaborative Fair Accountable Empowered All our actions and endeavours will be guided and evaluated through these values Additionally the following are core values which relate specifically to this post: Commitment to delivering high quality evidence based care Commitment to working in a multi-disciplinary team Commitment to the specialty area, valuing the contribution of all team members, encouraging a positive and creative working environment Commitment to own personal and professional development and to the development of others within the team.