Southwark, London, Greater London



Job Description

We are the only UK-wide charity for all those affected by a genetic bleeding disorder; a community of individuals and families, healthcare professionals and supporters.

For more than 65 years we have campaigned for better treatment, been a source of information and advice, and supported people living with long-term conditions.

We want to ensure that everyone affected by a bleeding disorder:

  • Lives the best life that they can
  • Never feels alone or isolated
  • Feels empowered and confident

We do this by:

  • Raising awareness about bleeding disorders
  • Providing support at all life stages
  • Influencing and advocating on policy and access to treatment

More than 30,000 men, women and children in the UK have a diagnosed bleeding disorder, and the number rises every year. Membership of The Haemophilia Society is free and open to all.

Our peer support through local groups around the UK, global family network, and online community, offers friendship and a listening ear when needed, as well as enabling people to share their views and experiences. By bringing people together for information and support at events tailored to all life stages, we amplify their voices to reduce isolation and influence government, welfare and health care policy.

Our community are at the heart of everything we do – we work collaboratively with members and health professionals to ensure we make decisions influenced by their valued input and direction.

As bleeding disorders are rare, many people will never encounter The Haemophilia Society; we are largely invisible beyond the communities we serve. So we have to work doubly hard to raise both awareness and understanding of bleeding disorders and vital funds needed to give those affected the services they deserve and need to live the best life they can.

Purpose of Post

You will be responsible for the development and delivery of our programmes, services and events that are delivered across the UK for people affected by bleeding disorders. This will include working with members and health professionals to develop and review our programmes liaising and undertaking the logistics and risk management responsibility for such events.

Our programmes and events are delivered UK wide and often run at weekends, and so will require extensive UK wide, evening and weekend travel. These include children’s activity camps, information days for women who have a bleeding disorder, and weekends for families with a newly diagnosed child – giving them the knowledge and support they need to feel confident about the future.

Our peer support through local groups around the UK, global family network, and online community, offers friendship and a listening ear when needed, as well as enabling people to share their views and experiences. We also support people experiencing particular difficulties or feelings of isolation, such as developing inhibitors which stops their treatment from working or experiencing a loss of independence as they grow older. We are developing a programme of members fundraising events such as Bridge Walks and a carol service where you will support logistical preparations.

We provide information and guidance to our members both in publications and directly by email and phone. We provide information and publications which help people to understand their bleeding disorder, access the best care, apply for benefits and navigate schooling, university and work. The role will involve maintaining our resources and ensuring our members get the information and support they require.

About the Post

As our Programmes and Events Manager, you be part of the Policy and Programmes team and will work with colleagues across the organisation leading on the planning and delivery of events and service programmes. These might include information and support conferences and services for members living with a bleeding disorder, planning our annual membership conference, the logistics of a fundraising event (such as the Bridge Walk), or a parliamentary event or reception. You will have experience in services and events management and delivering excellent member experiences.

Supported by the Head of Policy and Programmes and services coordinator, you will lead the development, delivery and review of our service programmes and membership activity, ensuring we respond to the diverse needs of our members. Your role will include responsibility for developing and delivering a new helpline service. Working with the fundraising and policy teams you will manage the logistics of some events led by their teams, ensuring strong logistical support. 

You will ensure we empower our members to live their lives to the full; wherever they live across the UK. You will be responsible for ensuring robust financial planning, management and delivery of all services and membership activity and contribute to the planning and management of other events across the organisation. You will have the opportunity to review and update systems and processes to ensure excellent governance, risk management and safeguarding. [JC1] 

You will possess excellent project management and admin skills, as well as experience and knowledge of working with communities and delivering services.  You will line manage our Services Co-ordinator, developing their skills to enable them to take increasing responsibility for planning and delivering services, as well as working together to review, improve and develop our offering.

You will manage resources to maximise delivery of services against costs, and you will report to the Head of Policy and Programmes on your areas of activity and budget management.

This post is pivotal to the success of the organisation and engagement of our membership and provides an exciting opportunity to help shape the future of the charity.


Programmes and member development:

  • Supported by the Head of Policy and Programmes, in line with the strategic plan, develop and deliver UK-wide programmes and events that will build a growing and active membership by ensuring that members and potential members are at the heart of our work.
  • Efficiently manage the development and delivery of our programmes covering all aspects of bleeding disorders that empower our members to be active partners in their treatment plan, living life to their maximum.
  • Ensure the appropriate dissemination of information through a range of channels including print, phone, face to face and online. Including the delivery of our face to face services and the development of a new helpline service.
  • Identify and develop relationships with other charities where synergies could develop into partnerships/collaboration.
  • Ensure services are evidenced based and are subject to robust evaluation (quantitative and qualitative) as part of initial design, delivery and post implementation. Work in collaboration with the fundraising team to maximise income generation opportunities by timely contribution of substantive information to bids.
  • To support membership development, ensuring we engage with our community combining an efficient, effective, and welcoming approach.

Events management:

  • Working with the fundraising and policy teams manage the development and logistical delivery and health and safety management of major events such as parliamentary meetings or new mass participation fundraising events, ensuring member engagement is at the heart of all we do.

Staff and volunteer management:

  • Provide line management for the services coordinator, including facilitating appropriate professional development, undertaking supervisions, appraisals, and managing performance.
  • Provide leadership to volunteers to ensure a coordinated approach to the provision of The Society’s work across the UK.
  • Ensure safeguarding policy and practice is updated and implemented across the organisation.
  • Ensure robust risk management for the department.

Financial Management and Income Generation:

  • Develop and manage the programmes and events budget; ensuring effective budget preparation, planning, monitoring and review.
  • Collaborate with fundraising to maximise opportunities to generate income through diverse sources.
  • Produce service delivery and financial reports and papers as required for a range of audiences including the Head of Policy and Programmes and Chief Executive.

Partnership and Stakeholder Management:

  • Represent the charity at external meetings and conferences including with the European Haemophilia Consortium and World Federation of Hemophilia.
  • Work with other charities; particularly associated rare genetic disorders, to ensure collaborative working where appropriate.


  • Be an effective member of the team, recognising, respecting and promoting the different roles and diversity of the individuals in the team and presenting a positive impression of the team and the organisation.
  • Undertake any other tasks that may be requested.
  • The post-holder must be prepared to travel throughout the UK and to work varying hours including evenings and weekends as required. This post requires extensive travel evening and weekend work, with up to 10 weekends away a year and some international travel.
  • This post is subject to advanced DBS clearance and appropriate references.

Person Specification


  • Proven ability in successfully developing business plans and implementing robust administration systems.
  • Demonstrated ability in management, including the ability to effectively manage resources and staff performance to maximise motivation and enthusiasm.
  • Demonstrated ability to design member programmes and events that will respond to the needs of a diverse audience.
  • Proven ability to deliver services and events for a wide range of age and levels of ability, together with a warm and engaging approach.
  • Proven ability to negotiate and reach compromise in a manner which inspires confidence and respect from others.
  • Demonstrated ability to work on cross-organisational projects from design and funding to delivery and reporting.
  • Proven ability to improve standards of delivery.
  • Proven ability to design and manage projects to delivery within time and cost.
  • Proven ability to work in a complex environment and demonstrate a high level of commitment to seeing plans through to their conclusion within agreed timescales and cost.
  • Highly developed verbal and written communication skills.
  • A good knowledge of data protection and understanding of its application.
  • Well-developed IT skills including Windows, Word, Excel, PowerPoint.
  • Understanding of equal opportunities, access and inclusion and the ability to incorporate these into all aspects of work.


  • Experience of working within a membership or patient/family support environment.
  • Knowledge and experience of working on issues surrounding long term medical conditions gained from working in a healthcare, statutory or voluntary sector role.
  • Experience in safeguarding of children and vulrenable adults.

To apply we require a cover letter and up to date CV, highlighting your achievements to date and outlining your suitability for the post.

The closing date for this post is Thursday 2 August 2018

Interviews are planned to take place on 9 August 2018, and will be held in Central London.

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