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We are looking for an experienced and compassionate Support Services Manager to lead BBS UK’s support services for children, adults and families living with Bardet-Biedl syndrome (BBS).
BBS UK is a national charity supporting people affected by this rare genetic condition. We work closely with NHS specialist clinics and other services to help individuals and families access the support they need and navigate health, education, social care and welfare systems.
This is an exciting opportunity to lead a small, dedicated team providing practical support, advocacy and guidance to people living with BBS and their families.
The role includes team leadership, safeguarding responsibility and service development. You will help ensure people receive safe, responsive and person-centred support while continuing to improve and strengthen our services.
About the Role
As Support Services Manager, you will oversee BBS UK’s clinics support and advice services. Working closely with the CEO, NHS clinics and partner organisations, you will:
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Lead and support a small remote-working team
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Provide supervision and safeguarding leadership to Patient Liaison Officers and Advice Workers
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Act as Designated Safeguarding Lead (DSL) for the organisation
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Oversee caseloads, service quality and risk management
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Support staff wellbeing, learning and development
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Build positive relationships with NHS and external partners
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Help develop and improve BBS UK’s support services
This is a home-based role with travel to specialist clinics in London and Birmingham, plus occasional meetings and events. Travel expenses will be reimbursed in line with BBS UK policies.
About You
We are looking for someone who:
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Has experience managing a team within health, social care, welfare or voluntary sector services
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Has experience providing leadership, supervision or safeguarding oversight within a support service setting
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Has strong safeguarding knowledge and can make sound decisions in complex situations
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Communicates well and builds positive working relationships
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Can manage competing priorities and support a busy team
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Is organised, practical and calm under pressure
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Is reflective, approachable and supportive
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Shares our commitment to inclusive, person-centred support
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Wants to make a meaningful difference to people living with BBS
Why Join BBS UK?
BBS UK is a small, supportive charity making a real difference to the lives of people affected by Bardet-Biedl Syndrome. By joining us, you will:
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Make a direct and meaningful difference to children, adults and families living with BBS
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Be part of a supportive and values-driven team
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Work flexibly from home while contributing to a nationally recognised rare disease support service
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Receive ongoing training, supervision and professional development
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Help shape the future of support services for people living with BBS
Additional Information
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An enhanced DBS check is required for this role
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Some evening or weekend work may occasionally be required, with time off in lieu provided
If you’re ready to use your skills and experience to make a meaningful impact, 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: Sunday 7th June 2026 (midnight)
Interviews: Expected to take place in London on 16th and 18th June 2026
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.
About Adolescent Health Study
The Adolescent Health Study (AHS) (Registered Charity Number 1213337) is an ambitious new UKRI-funded initiative to establish a prospective, longitudinal population study that will generate a globally leading open science data platform and research resource. AHS aims to recruit at least 100,000 young people aged eight to 18 years from across the UK and to follow their mental and physical health and wellbeing over at least 10 years. It plans to collect data through questions and measures; to obtain bio-samples for a wide range of genomic and other high-throughput assays; and to capture linked data relevant to health and wellbeing from participants’ health, education and other administrative records.
There will be a strong emphasis on engaging with and involving young people, schools, parents and other relevant stakeholders in the design and delivery of the study, as well as on including young people that represent as wide as possible a range of backgrounds, experiences and characteristics. AHS will focus on enabling a wide range of research, including studies of the critical biological and social developments that occur during the transition from childhood to adulthood and the determinants of both mental and physical health and wellbeing in adolescents and young adults.
Purpose of the post
The Engagement and Involvement Lead will engage with young people, families, schools and other interest-holders in the process of designing, delivering and ensuring the best outputs from the Adolescent Health Study, and is critical for the success of the project. We are at the early stages of laying the foundations for this and in this new role we are seeking an experienced and passionate individual to co-ordinate and lead AHS’s cross-UK participant and public involvement and engagement activities.
This is a role that requires high levels of confidence, autonomy, enthusiasm and skill. The postholder will be responsible for delivering the project’s new Engagement and Involvement Strategy, including: coordinating a Young Persons’ Advisory Group for AHS; developing and delivering AHS public engagement and involvement activities; outsourcing and supervising engagement and involvement activities that are better provided by external partners; scoping and advising on which routes for involvement and engagement activities are best suited to different tasks.
Main responsibilities
Planning & strategy delivery
- Ensuring the study delivers the values and approaches set out in the AHS engagement and involvement strategy
- Planning, delivering and reporting on an ongoing, regular and important programme of engagement events and activities
- Reviewing/revising/adding to existing policies, processes and procedures to support effective working together with people and communities (such as reimbursement, compensation, making reasonable adjustments)
- Developing and implementing appropriate evaluation, monitoring and reporting of Community Engagement & Involvement
- Keeping up to date with good practice & sector advances and sharing these with the AHS team.
Practical engagement and involvement
- Developing methods to enhance engagement and involvement, and helping to build positive relationships with young people and stakeholder groups, including charities, third sector & advocacy groups
- Overseeing day-to-day planning & delivery of a high-quality engagement and involvement programme. To include, for example:
- Managing and supporting Youth Advisors
- Running a standing Young People’s Advisory Group (YPAG)
- Organising & delivering other ad hoc engagement activities as necessary
- Securing external partners where necessary, and managing contracts and delivery of their work across the UK
- Ensuring that any external parties (e.g. organisations, freelancers, consultants) supporting AHS’s involvement and engagement work have clear roles, responsibilities & goals
- Working with the Head of Communications to develop and manage provision of relevant information to members of the public, teachers, young people & researchers
- Keep clear records of involvement and engagement activities, ensuring results are used to inform the study and the wider research community.
Team support
- Checking for and capitalising on possible opportunities for engagement and involvement to be embedded in the work of the wider team
- Ensuring appropriate induction, training, mentoring and support is organised for the research team and communities involved
- Sharing examples of emerging good practice and impact across the research team.
- Line managing an Engagement and Involvement Officer
Wider
- Contributing to shared learning and future sustainability as part of wider communities of practice
- Acting as a key point of contact for community members and partners involved in the research
- Representing and presenting the AHS study’s engagement and involvement work to the wider research community at a senior level, including in national engagement & involvement networks as necessary.
Knowledge, skills and experience
Essential criteria
Engagement and involvement
- Experience developing and delivering engagement and involvement activities with young people and other relevant interest-holders (such as parents, families, teachers and schools)
- A proven track record or professional background in working with young people – such as in youth work, counselling, mentoring, education, or a related setting
- Understanding and experience of good practice in youth engagement and involvement, including the principles and implementation of safeguarding, data protection, and inclusive practice
- Awareness of culturally sensitive approaches and methods to be inclusive of all relevant perspectives, including marginalised and vulnerable groups
- Ability to design and deliver workshops, focus groups or meetings that encourage open dialogue and collaboration
- Demonstrated commitment to youth participation and the meaningful inclusion of young people’s perspectives.
Other essential criteria
- Undergraduate degree or equivalent qualification in a relevant field
- Experience of successful project management and ability to deliver, working independently.
- Ability to manage a budget and report on financial activity accurately
- Ability to work collaboratively within a multi-disciplinary team, with experience of working alongside and influencing senior level professionals
- Research literacy, with a clear understanding of large UK-wide research initiatives and the various competing demands and pressures the study will face
- Excellent written and verbal communication skills - able to communicate effectively and confidently with a range of stakeholders and to summarise and report key information clearly and accurately, both verbally and in writing
- Confident using online tools (e.g. MS Teams, Zoom), and collaborative platforms (e.g. SharePoint, Microsoft 365)
Desirable criteria
- Relevant qualification in engagement and involvement
- Post-graduate degree or equivalent experience
- Understanding of key concepts and challenges in young people’s health and wellbeing and the transition to adulthood
- Familiarity with health research and data governance frameworks
- Understanding and knowledge of key potential partners across the UK for delivering youth engagement in the sector.
- Experience using digital engagement and facilitation tools for online workshops (e.g. Miro, Mural, Mentimeter, Canva, PowerPoint)
Dimensions
- This has been designed as a full-time role, although part-time work could be considered for the right candidate.
- Flexible working across several geographical locations in the UK. Travel may be required to AHS locations and partner organisations.
- AHS is a national organisation, and our activities take place across the UK.
Application Process
This post is subject to receipt of satisfactory references, an enhanced DBS check and right to work in the UK (visa sponsorship is not available).
Please apply via CharityJob, making sure to answer the screening questions in full.
The closing date for this position is midnight on Sunday 31st May.
Interviews are currently expected to be held Wednesday 1st/Thursday 2nd July.
Equal Opportunities Policy Statement
AHS is an equal opportunities employer, and as such aims to treat all employees, consultants and applicants fairly. AHS is an equal opportunities employer, and as such aims to treat all employees, consultants and applicants fairly. It is our policy to provide employment equality to all, irrespective of age, disability, gender identity or expression, marital or civil partnership status, pregnancy or maternity, race, religion or belief, sex, or sexual orientation.
Beyond these protected characteristics, we acknowledge the importance of socio-economic background, childcare and caring responsibilities, educational background, neurodiversity, and any other factors that shape an individual’s identity and opportunities. We strive to create an environment where all colleagues feel valued, supported, and able to contribute fully.
Values
It is an exciting time for the Adolescent Health Study (AHS) as we establish our senior leadership team and begin to plan the pilot studies. As the senior executive team evolves, the AHS values will be grounded in inclusivity, integrity, accountability, and collaboration.
Please ensure you answer each screening question in full, while staying within the specified word limits.
Please note cover letters will not be accepted for this role.