Genetic Counsellor and PGT Lead

Job Description

Job Title: Genetic Counsellor and PGT Lead

Location: CRGH, Great Portland Street

Accountable to: Medical Director

Qualifications: Registered Genetic Counsellor (minimum level Principal GC)

Hours: Full Time 37.5 hours

Purpose of the Job: To provide a clinical service, leadership role and co-ordination of the patient pathway within CRGH for the provision of genetics services including PGT-M/SR; Expanded carrier Screening; and general Genetic Counselling. This role includes the development and education of others within CRGH, and the promotion of CRGHs services more widely.

Key Working relationships:

• Head of CRGH PGT Programme
• PGD Nursing Team
• PGD Assistant / Genetic Test Co-ordinator
• External laboratory providers

PGT Lead GC Responsibilities:

Patient Management

• Continuing responsibility for a clinical case-load using advanced genetic counselling skills, taking a lead role in providing expert genetic counselling in the defined area of the specialisation of PGT.
• Review all new PGT referrals, deciding initial appointments and investigations. Answer general pre-referral queries from patients and referrers.
• Carry out first PGT consultations for each new case.
• Liaise with primary and secondary health care providers, including referring geneticists/ genetic counsellors and scientists, to obtain full information for patients seeking PGT.
• Determining when variation of the HFEA licence to practise PGT is required, and obtaining any necessary variation to the HFEA licence.
• Assess patients eligibility for NHS funding, and make applications for funding for any patients for whom an individual funding request (IFR) is required.
• Co-ordinate treatment dates for PGT, ensuring the timely availability of testing facilities within and outside CRGH.
• Oversee PGT work ups, together with the PGT Assistant, liaising with laboratory providers to agree the sample requirements for each case.
• Remain available to patients as the primary contact point and source of information and support within CRGH throughout the duration of their PGT treatment.
• Inform patients of any complex PGT test results.
• Plan, review and monitor the individual patient pathway.

NHS Contract management

• Maintain accurate and ongoing records of NHS funded treatments, reporting completed activity to the Commissioners each month.
• Manage and track the annual budget from NHS England, including the creation and updating of waiting lists where necessary, and keeping referrers/patients informed of current timelines.
• Act as a primary liaison with NHS Commissioners, for annual contract negotiations, and for requests for in-year uplift funding where appropriate.
• Participate in the NHS England PGT forum for case discussions and NHS funding queries.
• Represent CRGH in funding policy discussions with the NHS.

Provide Genetics Expertise

• Act as a resource to internal colleagues and external enquirers (eg secondary genetic services, national embassies, charities and private individuals) regarding PGT, NIPT, and carrier screening.
• Take a lead role in audit, evaluation and presentation of PGT data.
• Collaborate with research where appropriate.
• Ensure that all staff are educated to the necessary level in all aspects of the genetics programme, delivering individual and group training to staff, differentiated according to their role.

Other clinical Genetic Counselling services within CRGH, including, but not limited to:

• Patients requesting expanded carrier screening (CarrierMatch); and other genetic tests based on family history, as requested.
• Patients using gamete donors who are considering expanded or targeted carrier screening
• Patients with complex PGT-A results (eg. mosaic or segmental results)
• Patients with abnormal NIPT results
• Patients whose gamete donor is blocked (eg. due to the notification of a child born with a genetic condition in another family who used the same donor)

General Patient Care

• Ensure that the views of patients, or those speaking on their behalf, are heard and that complaints, both formal and informal, are received courteously and responded to promptly according to company guidelines.
• Ensure that standards of care are maintained and that effective procedures exist to assess and review the quality of services offered regularly.
• Maintain the safety and well-being of patients and staff in accordance with the Health and Safety Policy, and ensure that all accidents/incidents are reported and documented.
• Attend monthly counselling reflective sessions to discuss difficult cases with a counselling supervisor, as specified within the AGNC / GCRB guidelines.

  Management

  Personal Responsibilities:

• Take personal responsibility for continuing professional selfdevelopment and competence within appropriate codes of conduct.
• Keep up to date with changes in genetic counselling / PGT practice and AGNC developments

Skills

High level communication skills.

• Elicit clients concerns and expectations
• Elicit and accurately document clients detailed family history
• Interpret medical, family, and psychological history
• Manage queries and concerns of patients.
• Confirm diagnostic information
• Communicate genetic information and reproductive options to patients
• Receive and provide highly complex and possibly conflicting information
• Identify and respond to emerging issues for the patient
• Identify changes of risk within the family
• Communicate and apply emerging scientific information for the benefit of the family
• Interpret and communicate normal and abnormal genetic test results to patients and health care professionals
• Take a lead role in providing expert genetic counselling by managing an individual caseload
• Expertly communicate highly sensitive and potentially psychologically damaging information, which may cause high levels of distress.
• Communicate with patients who are distressed or bereaved, and provide support e.g. around pregnancy loss, failed IVF/PGT cycles.
• Identify and manage conflict within families created by sensitive genetic information
• Skilfully manage confidentiality issues
• Manage conflict when patients demands are incompatible to professional responsibilities and resources
• Deal with patients who have great difficulty accepting a clinical diagnosis or a genetic test result
• Use advanced counselling skills to communicate sensitively in the presence of language, cultural and/or medical issues, or when dealing with cases where there is antagonism and/or a highly sensitive atmosphere, e.g. in the presence of a complex ethical, cultural or psychiatric issue, when there is need for an interpreter, or when patients have learning difficulties or psychiatric illness.
• Write letters to patients, summarising clinic discussion and giving test results
• Provide clear information to enable informed consent
• Liaise with laboratory colleagues to order and communicate about genetic tests, and to discuss complex test results, which are difficult to interpret
• Liaise regionally, nationally and internationally with other laboratories, and clinical services, to obtain and provide information.
• Liaise with colleagues in other genetic centres to obtain and provide information and to establish understanding and cooperation.
• Write letters to referring clinicians summarising outcomes and test results
• Write, review and update content for patient information leaflets, websites etc
• Liaise with medical colleagues about issues that have diagnostic or clinical complexity
• Discuss cases with ethical complexity with colleagues where appropriate

  Excellent analytical and judgemental abilities:

• Make decisions where expert opinion differs or some information is unavailable. In order to do this source and interpret complex scientific papers and genetic test results
• Assess patients to determine where there is need for referral to specialist therapeutic counselling, psychiatric assessment or screening. Make appropriate referrals

  Planning, time management and organisational skills:

• Time management for complex tasks with fluctuating workload
• Manage a caseload of new and known patients and their families and prioritise actions accordingly. Ensure patients are seen in a timely manner including flexibility to accommodate urgent clinical cases as needed.
• Respond in a timely manner to patient and professional queries.
• Refer appropriately to other specialities.Provide information on the care of other family members, to identify at-risk relatives and advise on how they could obtain genetic counselling or screening.
• Have a broad understanding of general management and relationships within the NHS, charity sector and private sector

  IT skills and Information Governance

• Highly proficient MS Excel and Word skills.
• Ensure that all clinical documents are uptodate, accurate, legible and appropriately filed.
• Use word processor to accurately send standard and nonstandard letters, and other communications as appropriate.
• Accurately record data on patient information systems and use the inhouse databases.
• Occasional requirement to create databases or spreadsheets using computerised systems.

• Line manager for the Genetic Test Co-ordinator and any junior GC colleagues.
• Contribute to service planning and development, including assessing the suitability of potential new laboratory providers or new tests.
• Take an active role within the strategic development of CRGH as a provider of assisted conception.

• To act at all times in accordance with the Human Fertilisation & Embryology Authority (HFEA) Code of Practice and CMA guidelines.
• To practice within the AGNC Code of Ethics
• To work with the Quality and Compliance Team to keep abreast of the latest developments with regard to the HFEA, CQC, HSE, Data Protection, Home Office, ICO, and any other relevant regulators.
• To promote and maintain a high standard of patient care at all times following and adherence to all the CRGH policies and protocols.
• To communicate effectively with all members of the Unit and maintain continuity of patient care without discrimination or prejudice against a persons sex, religion, age, race, ethnicity.
• Responsible for ensuring own mandatory training kept up to date.
• Observe duty of care with equipment and resources used in course of work.

Required:

• Registered Genetic Counsellor, already working at Principal GC level (or equivalent in the private sector)

• Knowledge and experience of PGT

• Practical experience of genetic counselling

• Strong administrative skills, including computer literacy

• Experience of managing other staff

• Past rapport with patients and colleagues, and ability to work as part of a team and to refer patients to colleagues within and beyond CRGH

• Financial awareness and understanding

• Ability to educate and inform others regarding PGT and principles of genetics

Desirable:

• At least 5 years post-registration

• At least 2 years working in a PGT service

• Specific experience in the field of fertility and prenatal diagnosis

• Knowledge and experience of expanded carrier screening and NIPT

• Other counselling qualification

• Demonstrated abilities to collect and present data; to undertake audit and evaluation

• Demonstrated abilities in delegation

• Demonstrated ability to refer patients onward to other medical colleagues

• Past experience of budgets, their setting and maintaining; and of funding applications

• Devising, implementing, and delivering educational training

• Past significant contribution to research and publications

• Attendance and presentation of research at practitioners/patients/scientific conferences

• Experience in the sector of assisted conception and fertility treatment

What We Offer:

• Access to continuous professional development and training opportunities.
• A supportive, collaborative, and inclusive working environment.
• Opportunity to make a meaningful impact on patients lives.
• Pension Scheme provided by Royal London.
• 25 days annual leave plus public bank holidays.
• Long Service: after a significant number of years working at the company, employees are entitled to additional days of annual leave.
• Wellbeing benefits, shopping and leisure vouchers through Perkbox.
• Buy or sell annual leave.
• Treatment discounts.
• Private Medical Insurance.