Genetic Counselling Specialist Nurse | Royal Free London NHS Foundation Trust

Posting date:	06 May 2025
Salary:	Not specified
Additional salary information:	£51,883 - £58,544 per annum inclusive of HCAs
Hours:	Full time
Closing date:	05 June 2025
Location:	London, N18 1QX
Company:	Royal Free London NHS Foundation Trust
Job type:	Permanent
Job reference:	7106920/391-NMUH-7106920

Summary

The Sickle Cell and Thalassaemia Antenatal and Newborn Screening Specialist Genetic Nurse Counsellor plays a pivotal and autonomous role in the effective delivery and strategic leadership of the NHS Sickle Cell and Thalassaemia Screening Programme, as well as the Newborn Blood Spot Screening Programme. As a highly skilled clinical expert and genetic counsellor, the postholder provides comprehensive information, guidance, and psychosocial support to individuals and couples identified as carriers or at risk of having a child affected by a serious haemoglobin disorder. This support empowers patients to make informed decisions regarding reproductive choices and care pathways.

Acting as a central resource for women, their families, and the wider multidisciplinary team, the postholder ensures the delivery of a high-quality, clinically effective, and person-centred service. The role involves leading and managing a specialist clinical and counselling service that meets the needs of a diverse population and adheres to national best practice and standards. A key aspect of the position includes liaising with the National Screening Committee and other external bodies to ensure full compliance with national guidelines and quality assurance measures, as well as preparing reports and updates on behalf of the Trust.


1. Provide counselling, support, and advice to women and their partners throughout maternity care regarding genetic concerns and the availability of relevant services.
2. Deliver ongoing counselling and arrange partner testing for all women identified as carriers of a haemoglobin variant.
3. Offer counselling to couples receiving high-risk screening results, ensuring clear communication and emotional support.
4. Support women identified as being at risk of having a baby with a major haemoglobinopathy, offering guidance on available options.
5. Provide ongoing support and effective liaison for women who opt for antenatal diagnostic procedures.
6. Offer sensitive support and coordination of care for women who choose to terminate their pregnancy following diagnosis



NMUH North Middlesex University Hospital NHS Hospital Trust (NMUH) is one of London’s busiest healthcare providers, providing hospital care and community services for the 350,000 people living in Enfield, Haringey and beyond. Our specialist services include HIV, cardiology, blood disorders, diabetes, fertility, sickle cell and thalassemia. In addition to a full range of cancer diagnosis and treatment services, the Helen Rollason Cancer Support Centre is based on-site and provides services to support cancer patients’ wellbeing. We also provide community services and have a dedicated 0-19 service for children and young people in Enfield so that they can get the best possible start in life. This includes health visitors and school nurses who are delivering the national Healthy Child Programme, which provides a structured framework for the delivery of key interventions to support the health and wellbeing of children and families from 0 to 5 and school aged children from 5-19. The 0-19 service aims to improve pathways and partnerships with services in the hospital and deliver excellent care for the children and families. For more information, please access the following link:https://www.northmid.nhs.uk/
1. RESPONSIBILITY FOR POLICY AND SERVICE DEVELOPMENT
1. Support the implementation of new developments in antenatal and newborn screening services, in collaboration with other members of the screening team.
2. Contribute to shaping the strategic direction of the service by identifying and implementing solutions that ensure effective delivery of national and local standards, including those set by the National Screening Programmes.
3. Work collaboratively with key stakeholders involved in Antenatal and Newborn Screening, including Maternity and Neonatal Services, Haematology, specialist laboratory clinicians, primary care (GPs and health visitors), other Sickle Cell and Thalassaemia centres, Clinical Commissioners, and Public Health England.
4. Coordinate the antenatal and newborn screening programmes in accordance with national and local policies and guidelines.
5. Serve as a specialist resource, offering expert advice and support to staff within the Trust and the wider community.
6. Support the coordination, delivery, monitoring, and performance management of antenatal and newborn screening services to ensure the provision of a high-quality service for women and their families.
7. Provide support to staff and offer cover for the Service Manager during periods of absence.
2. RESPONSIBILITY FOR LEADING AND MANAGING
1. Develop, implement, and deliver educational programmes to equip staff with the knowledge and skills necessary to provide high-quality care to clients.
2. Facilitate the effective induction of staff in line with national antenatal and newborn screening policies, including the management of women with major haemoglobinopathies during pregnancy.
3. Plan, implement, and deliver both formal and informal training sessions to enhance understanding of genetically inherited haemoglobinopathies across the multidisciplinary team.
4. Participate in basic and continuing education programmes within the College of Nursing and Midwifery to support professional development and service excellence.
5. Maintain and enhance personal professional knowledge through active engagement in local, regional, and national networks, including collaboration with members of the national Haemoglobinopathy teams.
Professional / Personal Development
1. Always adhere to the NMC Code of Professional Conduct, Midwives’ Rules, relevant codes of practice, and Trust policies and procedures.
2. Demonstrate professional behaviour by upholding and adhering to the Trust's Code of Conduct and professional standards.
3. Take responsibility for maintaining accurate, timely, and confidential written and electronic records of patient care in accordance with Trust and professional guidelines.
4. Manage time effectively and take responsibility for planning and prioritising own workload.
5. Maintain professional knowledge, skills, and clinical credibility by regularly undertaking relevant clinical duties.
6. Ensure confidentiality is always maintained in relation to staff, women, and their families.
7. Provide supervision, guidance, and support to other team members as required to promote development and maintain high standards of practice.
3. RESPONSIBILITY FOR INFORMATION RESOURCES

1. Ensure accurate, timely, and confidential documentation of all patient interactions in both written and electronic records, in accordance with Trust policies and professional guidelines.

2. Maintain and update patient information within relevant databases, including the Haemoglobinopathy Register and national screening systems.

3. Interpret, record, and manage complex genetic and screening data to support effective clinical decision-making and continuity of care.

4. Ensure secure handling, storage, and sharing of sensitive personal and medical information, in line with data protection legislation and information governance standards.

5. Contribute to the preparation of reports and data summaries for audits, service evaluations, and submissions to commissioning or regulatory bodies

6. To Create leaflets and posters for patient information and update webpages, communication via social media .

7. Act as a knowledgeable resource for colleagues and external partners in accessing, understanding, and utilising screening and genetic information appropriately.
4. RESPONSIBILITY FOR RESEARCH AND DEVELOPMENT
1. Develop, implement, and agree clinical guidelines and protocols based on current best evidence and practice.
2. Regularly review existing practices and lead the development of strategies to implement changes where improvements are identified.
3. Establish, monitor, and audit the quality of services against standards set by Sickle Cell and Thalassaemia service commissioners and the clinical governance framework.
4. Collect, analyse, and report data on antenatal and newborn screening to monitor service uptake and inform continuous improvement.
5. Identify, measure, and audit clinical outcomes, and provide relevant statistical reports as required for service evaluation and planning.
6. Ensure robust failsafe procedures are in place to confirm that all screen-positive haemoglobinopathy results have been communicated to women, and that appropriate referrals and follow-up actions have been completed within nationally agreed timeframes—this includes failsafe checks during pregnancy and for partner testing.
7. Consistently demonstrate and uphold the Trust’s core values:Personal, Safe, Respectful, and Responsible.
8. Promote, facilitate, and participate in research activities within the Sickle Cell and Thalassaemia team to support evidence-based practice and service improvement.
















This advert closes on Tuesday 20 May 2025