Family Support Co-ordinator

Wolfram Syndrome UK Family Support Co-ordinator job description

 Purpose of the role

To support the aims, objectives and demonstrate the values of Wolfram Syndrome UK (WSUK) and in particular to: provide on-going support to children and young people affected by Wolfram Syndrome (WS) and their families, both during and outside of the NHS WS multi-disciplinary clinics (MDT) at Birmingham Children’s Hospital (BCH), to help improve the quality of their lives.

Terms of service:

·        0.6 FTE / 22.5 hours per week – working over 4-5 days, specific days/times to be agreed.

·       This role will be home based and will involve some travel to: - i) attend the WS MDT clinics at BCH (once an NHS Honorary Contract is secured); ii) attend the annual UK WS conference; iii) visit WS affected families, schools or colleges; and iv) attend any other events / activities as may be required.

·       Some limited evening and weekend work and occasional overnight stays may be required.

·       This role will involve participation (on-line) in: - i) regular team meetings and ii) training relevant to their specific responsibilities.

·       There is a three-month probationary period.

Overall responsibilities:

·       Support WS affected children and young people and their parents/families during their life journey through childhood and adolescence, both during and outside of the WS MDT clinics at BCH.

·       Together with the established FSC, act as the key WSUK contact for the clinical and administration teams at BCH, liaising with these teams to help support and administer the coordination of the WS MDT clinics (both F2F and virtual) for children and young people.

·       Liaise with professionals, supporting external organisations, and agencies supporting children and young people, to i) ensure they have a good understanding of WS and the impact of living with sensory loss; and ii) to understand how WS affected families can access their services.

·       Ensure the confidentiality, safety and welfare of WS affected children and young people and their parents/families is maintained at all times.

·       Support WS affected children and young people to empower, enrich and enable them to live the life they choose.

Responsible to: The WSUK Board of Trustees

Line Manager: Contracts Manager

Specific areas of responsibility:

The Family Support Co-ordinator develops and maintains effective support for children and young people who are affected by WS and their parents/families; and facilitates their engagement with the WS MDT clinic services provided by BCH teams to ensure that they gain the most value from their interactions with expert health professionals. The role also liaises with NHS teams locally (such as CAMHS) to help families secure additional local expert support and help deliver co-ordinated care.

This is achieved by:

·       Liaising with the clinical teams and administrators to support the coordination of the WS MDT clinics for children and young people at BCH (~4 F2F and ~2 virtual per year; once NHS Honorary Contract is secured). Managing the administration of clinics to ensure patients attend (i.e. minimise Do Not Attends) and supporting families both during and after clinics.

·       Supporting the monitoring of the quality of the children and young people’s support service provided by WSUK and the WS MDT clinics through regular evaluation (e.g. gathering feedback on their experiences both during and outside of clinics through assessment forms, questionnaires and surveys as appropriate).

·       Attending relevant WSUK and NHS pre and post clinic meetings and the bi-annual WS audit meeting.

·       Contributing to end of year WSUK contract reports delivered to BCH teams, to ensure the level of support provided and value to WS affected families are appropriately described.

·       Developing and implementing person centred profiles that involve WS affected children and young people throughout the process. Ensuring that all statutory duties are carried out and are person centred.

·       Identifying professionals and organisations who can adequately support the emotional impact of children and young people and their parents/families who live with a rare, complex and progressive condition and/or provide additional support in their local area.

·       Facilitating the access to relevant advocacy services for children and young people and their parents/families to obtain equal access to financial support, benefits and specialist advice to which they are entitled (such as assessments and assistance with applications, social services referrals, OT referrals, DLA/PIP assessments and Blue Badge applications).

·       Supporting WS affected children and young people and their families to cope with living with their WS, helping children and young people to increase their confidence and independence, enabling and empowering them to lead the life they choose.

·       Being responsible for ensuring that children and young people are safeguarded.

·       Working with schools and colleges to enable children and young people to reach their potential.

·       Working with the adult support co-ordinator to help transition young people to adult services at the appropriate time, which includes attending their transition clinic at the Queen Elizabeth Hospital (QEH) in Birmingham.

·       Building and maintaining effective relationships internally and externally for the good of the charity, contributing to fundraising efforts where appropriate.

·       Occasionally, respond to telephone calls/messages/emails from parents/families or WS affected children/young people for urgent assistance for help.

The responsibilities above form the core of the Family Support Co-ordinator role. However, the employee may be asked to undertake additional activities from time to time.

Experience and skills

The Family Support Co-ordinator will:

·       Have experience in a similar role, working with families affected by a long-term condition, or disability.

·       Have knowledge of safeguarding policies and procedures.

·       Be confident in communicating with families in a variety of ways to ensure those who are most vulnerable in the WS community or may have a range of differing abilities and diverse cultural backgrounds are reachable and can engage.

·       Have a strong desire to improve the lives of families living with a long-term condition or disability.

·       Have experience in working in partnership with a range of professionals.

·       Recognise the importance of good support and continually look for ways to improve the WSUK support service.

·       Be able to work effectively as part of a remote team.

Desirable

·       Experience or knowledge of sensory / sight loss or complex health condition(s).

·       Knowledge and experience of special educational needs (SEND) and education, health and care plans (EHCP) or helping to complete disability living allowance (DLA) applications or other similar support.

·       Working with external statutory agencies and relevant voluntary organisations in local provision of services in respect of health, social care and education.

·       Knowledge of the issues affecting patient support groups.

Skills and knowledge

The Family Support Co-ordinator will:

·       Have excellent communication skills, particularly active listening.

·       Be compassionate and empathetic.

·       Be a competent IT user.

·       Committed to equality and diversity and value the views of children and young people, and their parents/families.

·       Be well organised, and able to develop creative solutions to complex problems.

·       Ability to work on own initiative and prioritise competing work demands.

·       Achieve a working knowledge of Wolfram Syndrome.

·       Maintain accurate records and files (e.g. WSUK patient database) and comply with WSUK policies / procedures.

Confidentiality

·       The confidential nature of the work means that employees working for WSUK must maintain the strictest security in relation to documentation and ensure that confidentiality is maintained always, in accordance with relevant Data Protection and associated legislation.

·       This role will require a DBS check.