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Job description

Job Title: Paediatric Haemophilia Clinical Specialist Nurse

Band: Band 6 / Band 7 with relevant education skills and experience

Hours of Work (p/w): Job share [0.6 WTE] (Permanent post)

Service Centre/Directorate: Haematology

Base: St George’s Hospital.

Accountable to: Paediatric Consultant in Haematology/ Haemophilia Centre Director

Reports to: Lead Haemophilia Clinical Nurse Specialist

Responsible for: Supervision and care of the caseload

Key working relationships: Paediatric haematology team, paediatric departments and

adult haemophilia service, haemostasis laboratory

CRB Checks: CRB – enhanced

1. The nurse will support the consultant in providing patient reviews, school liaison and education, patient and family community support, GP support, as well as establishing a robust nursing education programme. They will support protocol and patient information development, develop nursing documents to support the care and management of patients; develop and maintain databases as well as support data entry to the national haemophilia database. In addition, the Clinical Nurse Specialist(CNS) will work closely patients attending day care, special dentistry or admitted to hospital and co-ordinate the smooth and appropriately timed transition from paediatric to adult services..

Trust Vision & Values:
The post holder is expected to have a clear understanding of how this post contributes to the achievement of the trust vision of:

A thriving Foundation Trust at the heart of an integrated healthcare system. One that delivers improved patient care at a community, hospital and specialist setting, supported by a unique and nationally recognised programme of research, education and employee engagement.

We expect all our staff to share the values that are important to the Trust, being Excellent, Kind, Responsible & Respectful, and behave in a way that reflects these.

St George’s University Hospitals NHS Foundation Trust is committed to safeguarding children and vulnerable adults and expects that all staff will share in this commitment. The Trust is clear that all staff have a responsibility to be aware of children and adult safeguarding policies and procedures and that each member of staff, clinical and non-clinical, will attend child or adult safeguarding training that is provided at an appropriate level to suit their role. The Trust has the additional expectation that all staff will be able to identify concerns and know what action to take.

Clinical Practice:

• Work at an advanced level and practice autonomously as well as within a multi-disciplinary team and are self-directed.
• Work clinically to optimise the health and wellbeing of patients with inherited bleeding disorders and other non-malignant haematological conditions.
• Work at an advanced level drawing on a diverse range of knowledge in complex decision making to determine evidence-based therapeutic interventions, which may include prescribing medication or changing dosages based on pre-determined criteria.
• Plan, prioritise and manage complete episodes of care, working in partnership with others, delegating and referring as appropriate to optimise health outcomes and resource use, providing direct support to patients and clients. Act as key worker for patients with inherited bleeding disorders
• Use professional judgement in managing complex and unpredictable care events.
• Draw upon an appropriate range of multi-agency and inter-professional resources in their practice.
• Appropriately define boundaries in practice.
• Promote a high standard of advanced specialist nursing by initiating and co-ordinating the assessment, planning, delivery and evaluation of the holistic needs of patients/families through evidence-based practice following agreed policies, protocols and guidelines.
• Practice a high standard of communication including highly sensitive and complex information to develop and sustain partnership working with individuals, groups, communities and agencies. Utilise evidence-based information through a variety of communication media.
• Maintain adequate patient documentation to NMC requirements for all patients seen and advice given in any practice setting and contribute to clinical activity/data collection as required.
• He/she will be expected to undertake clinical duties at St George’s Hospitals, including regular outpatient clinics, ward reviews, triage assessment and the provision of telephone advice for regional patients. Active involvement and development of the paediatric to adult transitional service is also expected.
• To administer a number of drugs and clotting factor products in accordance with patient group directives
• To be proficient in venepuncture and cannulation. To extend this knowledge to educate and train parents, patients and staff.

• Collaborate with the multi-professional team to develop a shared vision of the service which can then be formally designed and developed. Key components will include: the generation of a model of regional nursing practice for this vulnerable patient group with chronic and complex patient needs; the design and implementation of a telephone based consultation system; the critical review and development of patient pathways to achieve best care in the optimal environment.
• Act as a role model and resource in expert clinical evidence based practice.
• Work collaboratively with colleagues to develop effective documentation, pathways, protocols and guidelines for care. Demonstrate a commitment to share expertise and disseminate information.
• Contribute to the development of the team and the service to continuously improve patient care
• Participate in implementing national standards and frameworks at a local level. This will include working within the multidisciplinary team to ensure that the standards for national peer review of haemophilia are met and robustly maintained.
• Network locally, regionally, nationally and internationally and seek opportunities to develop the role.
• Use effective change management skills to initiate and implement service and practice development, making the best use of resources to improve practice and health outcomes.
• Line manage members of the team where appropriate.
• Maintain involvement and active input in multidisciplinary meetings and appropriate local and national bodies / forums to contribute to practice and service development
• Develop and maintain strategic relationships with the adult haemophilia service, ensuring seamless young to adult transition providing an element of mutually agreed cross cover.
• Strive to provide a family orientated service in collaboration with the adult haemophilia team which exhibits cohesive intergenerational care.

• Ensure the provision of specialist expertise, support and education to community staff, schools, employers and other agencies to facilitate continuity of care and to represent the interest of patients with inherited bleeding disorders.
• Provide specialist support to patients and their families in the community where required.
• Co-ordinate care between home, the primary health care services and the hospital.

• Work closely with colleagues to develop evidenced-based practice within this area of adult and paediatric nursing.
• Lead in developing and performing audit and review all of aspects of the inherited bleeding disorder service both locally and nationally.
• Collaborate, develop, implement and monitor protocols and standards, ensuring they are reviewed and updated regularly. Verify that they are evidence based whilst adhering to the guidelines for best practice as laid out in UK national guidelines.
• Seek opportunities to take the lead on or participate in research projects within this speciality and to present findings locally, nationally and internationally.
• Use expert knowledge of the patients’ medical and psychological history together with their cultural needs and when recruiting suitable patients for the trials/research whilst ensuring that they are fully aware of what will be involved in the trial.
• Ensure Advanced Good Clinical Practice guidelines are adhered to.
• Develop links with local basic and translational research staff to support the ongoing investigation into inherited bleeding disorders.

• Maintain, advance and develop personal theoretical knowledge, high standards of clinical competence and professional development through ongoing self-education and attendance at relevant courses of study.
• Develop and maintain a peer network of support, information and learning with other nurse specialists at a local and national level.
• Maintain own professional portfolio.
• Identify and address the educational needs of patients, families, and carers, and take steps to address these individually and via the service more generally (e.g. through the development and maintenance of patient education documentation).
• Contribute to the teaching and support of students from the multi-disciplinary team within relevant educational programmes.
• Provide an appropriate learning environment, including mentorship, coaching and preceptorship.
• Organise and contribute to relevant educational programmes and in house study days.