Programme officer jobs in Leeds
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Join BBS UK and help deliver compassionate support within NHS highly specialised clinics, supporting children and families living with Bardet-Biedl syndrome.
At Bardet-Biedl Syndrome UK (BBS UK), we are dedicated to improving the lives of those affected by this rare genetic condition. Our charity provides specialist support services that help children, young people and families feel informed, supported and able to navigate complex health and care systems, working in partnership with NHS Highly Specialised BBS Clinics.
We are seeking a compassionate and organised individual to join our Clinics Support Team as a Patient Liaison Officer (PLO). This role offers a unique opportunity to deliver charity-led support within specialist paediatric clinics at Great Ormond Street Hospital, working alongside NHS multi-disciplinary teams while remaining part of a close-knit and supportive charity team.
About the Role
As a Patient Liaison Officer, you will play a vital role in ensuring families feel prepared, supported and heard before, during and after their clinic appointments. You will provide emotional and practical support, advocacy and system navigation, helping families to understand their care and access appropriate support, while referring more complex casework to BBS UK’s specialist Advice Service.
You will:
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Support families before, during and after NHS Highly Specialised BBS clinic appointments
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Facilitate clinic attendance by preparing families for appointments, addressing concerns and helping to reduce “Did Not Attend” rates
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Attend specialist BBS clinics at Great Ormond Street Hospital, and St Thomas' Hospital, providing on-the-day support to families and clinicians (Approximately 2-4 days per month)
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Act as a key point of contact between families and clinical teams, supporting communication and information-sharing
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Provide light-touch advocacy, information and signposting in relation to health, education, social care and local authority support
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Identify unmet needs or emerging issues during clinic interactions and refer families to the BBS UK Advice Service for specialist advocacy and follow-up
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Support families during key transition points, particularly the move from paediatric to adult services
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Maintain accurate and confidential records using BBS UK’s CRM system (CharityLog)
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Contribute to service evaluation, quality improvement and the wider work of BBS UK
This is a home-based role with attendance at clinics in central London and occasional travel to other clinic sites and BBS UK events. Travel expenses will be reimbursed in line with BBS UK policies.
Who We’re Looking For
We are looking for an experienced individual with a background in supporting children and families, who can work confidently in a clinic-based, people-facing role.
Essential Experience & Skills
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Experience working with children, young people and families, ideally within health, social care, education or the voluntary sector
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Strong communication skills, with the ability to engage sensitively with families experiencing distress or uncertainty
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Experience providing emotional and practical support to individuals with complex or long-term conditions
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Ability to organise and manage multiple tasks, prioritise effectively and work independently
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Good IT skills, including Microsoft Office and case management/CRM systems (e.g. CharityLog)
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Understanding of safeguarding principles and professional boundaries
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A strong commitment to improving outcomes for people living with rare or complex conditions
Desirable Experience & Skills
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Knowledge of Bardet-Biedl Syndrome or other rare or genetic conditions
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Experience working alongside or within NHS services or multi-disciplinary teams
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Understanding of education, health and social care systems in England
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Experience supporting families affected by disability or visual impairment
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Ability to travel for work, including clinic attendance (travel expenses reimbursed)
Why Join BBS UK?
BBS UK is a small, dedicated charity making a meaningful difference to the lives of children, young people and families affected by Bardet-Biedl Syndrome. Our Clinics Support Team is widely recognised by families and clinicians as an essential part of the specialist BBS service.
By joining us, you will:
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Have a direct and positive impact on families at critical points in their care journey
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Be part of a supportive, values-driven charity team
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Work flexibly from home while delivering face-to-face support in specialist clinics
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Receive training, supervision and ongoing professional development
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Contribute to a nationally recognised rare disease support service
Additional Information
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DBS Check: An enhanced DBS check is required for this role
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Safeguarding: Completion of safeguarding training within the first month of employment
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Flexible Working: Occasional evening or weekend work may be required, with time off in lieu provided
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Hours: This is a permanent, part-time role (20 hours per week)
How to Apply
If you’re passionate about supporting children and families living with a rare condition and would like to be part of a dedicated charity team, we’d love to hear from you.
If you would like to discuss the role before applying, details can be found in the application pack.
Application Deadline: 8th February 2026
Registered Charity
6 - 10
We support and empower our community, champion wellbeing, and raise awareness, ensuring understanding, support, and hope for all affected.
The client requests no contact from agencies or media sales.
Thank you!
Civis Foundation (UK) has partnered with AEA Consulting for the recruitment of the Programme Officer.
Civis Foundation invests in arts and letters, cultural preservation, and community development initiatives. Initially established in the US, the foundation is launching a UK-based charitable entity in 2026 to expand its mission across Commonwealth countries, with a particular focus on the United Kingdom, Jamaica, Barbados, and cities such as London and Liverpool.
The work of the Foundation is rooted in the belief that understanding "the other", both within ourselves and in our communities, is essential to personal fulfilment and social transformation. Through partnerships with artists, cultural institutions, municipalities, and community organisations, the Foundation creates opportunities for engagement that transcend boundaries, cultivating compassion and advancing justice.
The newly formed London office will serve as a hub for adaptive reuse of heritage buildings, artistic commissioning, and community investment throughout the Commonwealth. We view artistic expression as a starting point for rekindling democracy - work that urges us to consider the needs of the other, their lived experience, and perspective. We champion projects that address complex historical narratives and create space for genuine dialogue, helping us imagine how we might live together.
The UK charitable foundation will serve purposes including the advancement of education, cultural preservation, and the advancement of citizenship and community development.
Programme Officer (UK) – Role Description
Working closely with and reporting to the President and CEO of Civis Foundation (US and UK), the UK Programme Officer will support the Foundation with the launch and scaling up of its operations in the UK.
The Programme Officer will be responsible for the day-to-day operations of the UK Foundation, relationship development, and project management. The management of the initial activity of the Foundation in the UK will include:
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Relationship building: Extensive outreach to potential partners across arts, preservation, municipal, and community sectors in London, Liverpool, Jamaica, and Barbados. Secure introductions and meetings for the President and CEO, and explore potential programme collaborations.
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Partner collaboration: Work with strategic consulting partners to support business planning and programme development.
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Operating budget and core grant application development: Prepare a comprehensive grant request to Civis Foundation New York for initial capitalization, including a three-year operational budget.
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Financial management and reporting: Support preparation of annual accounts, supplier management and payments, and monitor budgets and cash flow.
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Operational and administrative support: Work with the President and CEO of Civis Foundation and other relevant staff and consultants on ad-hoc administrative support, meetings and diary coordination, and to put in place systems and processes for the full launch of the UK operations.
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Evaluation and monitoring: Develop a "light-touch" but effective framework for measuring impact and tracking relevant metrics.
Key competencies and required skillset to succeed in this role include:
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Demonstrate understanding of the UK non-profit landscape, specifically within social justice, arts, or community/urban development context, with at least 7-10 years of project and programme management experience in one or more of these fields.
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Bring a strong network in one or more relevant fields in the UK: social justice, arts, or community/urban development.
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Excellent project management skills, including fluency with software packages (MS Office, project management) and relevant AI tools.
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Financial literacy (including budgeting and cash flow management).
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Working knowledge of the governance and legal regulation in the UK charitable sector.
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Knowledge of and interest in the current agenda around civic and social development, education, and the role of arts and culture in social change, heritage preservation, and urban development.
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Comfortable working independently and across time zones.
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Clear and respectful communicator with excellent interpersonal and collaboration skills.
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Detail-oriented, proactive, and accountable.
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Self-motivating and willing to balance strategy with daily administration.
We expect this to be a part-time role for the initial 12 months of operations, with potential to scale up to a full-time role in 2027.
Compensation & Benefits:
Compensation: £60,000-£67,000 a year (Full-Time Equivalent), dependent on experience.
Actual Salary: £42,000-£47,600 a year for 25 hours per week (0.7 FTE) pro rata.
Working hours: 25 hours per week. Flexible, with some adjustment to both UK and US time zones.
Annual leave: 22 days (28 days including bank holidays, pro rata.)
Pension: 8% employer contribution.
Hybrid working: remote/working from home, with regular access to a coworking/office space in London and for attendance of in-person meetings in London.
Training and development: Annual budget for professional development, conference attendance, etc.
Application Process:
To apply, please submit your CV and complete three questions on the Applied platform.
Application deadline: 10:00am (GMT) on 2 February 2026
Provisional interview dates with shortlisted candidates: 16-27 February 2026
The selection process will follow three stages: 1. Online interview 2. Technical interview 3. Final presentation and interview with CEO.
Indicative start date: March 2026
We believe a diverse workforce is a stronger workforce. We encourage applications from all backgrounds, ensuring fair treatment and opportunity for everyone. Selection is based solely on merit, ability, and fitness for the role.
The client requests no contact from agencies or media sales.