We seek a Marfan Support Nurse to report to Dr Anne Child. Are you interested? If so, write to: Dr Anne Child

Band 7 – Fixed-term, One year (renewable), 0.5 WTE

Job Summary:

1. To provide support and sign-post members of the public that make incoming
calls to the Marfan Trust Helpline, this includes incoming emails, post and social

2. To maintain efficient and clear record keeping for enquiries and responses.

3. To liaise and work with other members of the Marfan Trust team, Marfan clinic
staff RBHT and other health care professionals.

4. Provide teaching and education to those affected by Marfan Syndrome,
healthcare professionals and members of the public.

5. To provide six-monthly comprehensive reviews and progress reports to the
Marfan Trust, their donors and funding bodies when required identifying
achievements and future developments of the organisation. Each report also needs
to include case studies which highlight the impact that the nurse post holder is

6. Attend the quarterly Marfan Trust trustee meetings

7. Attend the annual Marfan Trust Conference and be expected to speak and
network. Speaking at least one conference in two years is required.

8. Author and co-author articles and publications for the Marfan Trust’s bi-annual
newsletter, ‘Marfan Matters’ and their online content. At least one publication in two
years is required.

9. Support fundraising by assisting with reports.

10. Contribute with the application for research grants.

11. Always act as ambassador to the Marfan Trust. 

Main tasks & responsibilities:

Member/customer care (both direct & indirect)

Work effectively ensuring a very high standard of care throughout the member’s journey from the earliest point at which concern for the individual/child is raised to the preparation, as a young person into adulthood and beyond.

Give support that is appropriately planned to meet each individual’s needs empowering them to manage their care, to recognise any deterioration or acute episodes requiring immediate specialist attention and how to access the necessary support.

Will be able to communicate very sensitive and distressing information to members, parents and families. This will be within an ongoing relationship that commences at an early stage of diagnosis.

Be able to support the members before, during and after interventions, surgical operations and device implantations as per the indicated management plans.

Visit schools as assessed by the needs of the child, especially regarding bullying, and assist teachers in understanding special requirements of the child.

Arrange school/nursery/visits write care plans as appropriate for each child to ensure child’s safety at school or nursery.

Be available via mobile phone and email, as an expert resource for members and their families.

Have an active understanding of the physiology and pathophysiology of the heart, and the genetic factors leading to possible and inherited cardiac conditions (ICC) which will enable the nurse specialist to give complex explanations to the child/young person and their family on their condition and in an approachable way.

Have genetic counselling skills as needed and undergo further training towards this end.

Compile detailed genetic family histories and draft family trees/pedigrees in accordance with the internationally recognised symbols, keys and format.

Work in collaboration with the genetic laboratory, clinical geneticists, genetic counsellors and Marfan Trust specialist advisory consultant committee.

Be responsible for giving advice and education about diagnosis, treatment and lifestyle modifications backed with appropriate written and IT information. Also putting families in touch with support groups and agencies.

Prioritise care that can be offered to families taking a flexible approach.

Working with the consultant and psychologists specifically giving support to families during bereavement and loss.

Be aware of professional boundaries between nurse, member and family.

Able to assess and advise members and relatives in crisis situations and ensure that their needs are met by the whole team.

Be responsible for overseeing that the member and family’s care, responds to their need for emotional support and information as well as practical, social, education and financial needs. This care will be flexible, responding to changing health and psychosocial circumstances. 


Act as an advocate for the person and the family enabling them to express their needs effectively when dealing with the care team and communicating back to the family. Evaluate and respond specifically to any disabilities and or additional learning needs.

Obtain, evaluate and disseminate information to facilitate best practice for all family members affected or at risk of an ICC.

Teach on courses relevant to ICC’s; teaching nurses, doctors and other allied healthcare professionals.

Participate in the presentation and publication of relevant research and evidence-based/best practice initiatives.

Be actively involved in conferences and meetings, developing presenting skills in the national and international field; representing the Marfan Trust.

Network with other cardiac CNSs throughout the UK, joining appropriate organisations in order to collaborate, share and benchmark practices and initiatives.

Act as a role model and clinical expert when liaising with local primary healthcare teams, teachers and other relevant community healthcare professionals in order to promote a better ongoing understanding of each person’s condition and associated symptoms and treatment regimens to promote effective community care.

Developing and maintaining clinical networks in primary and secondary care services ensuring the constant provision of effective, high-quality nursing care to all members with cardiac disease in the community setting.

Record all professional communications and interventions on GDPR approved electronic member records. Document telephone, virtual (video) and face-to-face appointments by sending letter(s) to member/parents and GP, and specialist Marfan clinics. Dispensing literature to members and doctors electronically and by post. 

Policy & service development

To participate in the development of competencies for the expanding service.

Develop and write articles and educational literature for Marfan Trust as necessary in discussion with the team.

Assist in applying for research funding with members of the Marfan Trust administration team.

Be aware and act in accordance with evidence-based/best practice, informing the development of standard operating procedures and policies.

Resource management

Delegate ordering of any supplies i.e. printed information for members and

Ensure accurate recordings of journeys or mileage.

People management

Manage own caseload, managing own time on a weekly and monthly basis.

Recognise the level of emotional stress that the post holder encounters with members and their families who are dealing with life limiting issues and to seek appropriate support for self.

Meet regularly with Marfan Trust staff to consider responses to members.

Act as a specialist resource for healthcare professionals, schools/colleges, social services and voluntary organisation personnel providing education as appropriate.

Have an ambassadorial role when representing the Marfan Trust in peripheral clinics, the community and educational forums.

Identify and be responsible for own professional development in collaboration with the medical director, creating a pertinent professional development plan.

Manage leave/time-off and delegate care of members appropriately. 

Information management

Maintain data quality standards for Marfan Trust electronic systems or similar systems in the future.

Ensure self-undertaking training for electronic information systems in place and under development.

Be able to organise own presentations of data and education in an effective way using updated software.

Have an active, Marfan Trust approved, email account, Outlook (Microsoft) for member information shared beyond the Marfan Trust and use this as one of the methods of disseminating information.

Be fully aware of the role of Microsoft Teams, its uses and possible implications when liaising with colleagues and members/families, and other virtual communication formats endorsed by the Trust.

Research & development

Identify, recommend and develop relevant areas for audit and research within
speciality which will benefit member care.

Participate in ongoing research within the charity.

Under guidance of medical director, develop own research collaborating with peers, engaging members and families.

Share outcomes and learning both internally, nationally and internationally at meetings and conferences.

Publish findings in appropriate journals. 

Marfan Trust, a CIO registered as a charity in England in Wales with charity number 1198847 at: c/o 24 Oakfield Lane, Keston, Kent, BR2 6BY. Contact us at [email protected] or by phone on + 44 (0)333 011 5256
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