Haemochromatosis UK

Chief Executive Officer

Office based in Rugby, Warwickshire with option to work flexibly
From £52,000 to £57,000 pa depending on experience.
11 Mar 2019
08 Apr 2019
Full Time
Contract Type

Chief Executive Officer

Full-time role based from HUK office in Rugby (Warks) with flexible working  

Salary c. £52,000 to £57,000 pa depending on experience 


Haemochromatosis UK (HUK) is a registered charity and patient organisation dedicated to supporting people with genetic haemochromatosis (GH), a genetic condition that leads to toxic iron overload. We also work to raise public awareness, stimulate research and educate healthcare professionals. 

HUK has been through an exciting period of growth over the last five years and has reached a pivotal point. We are seeking to appoint a new CEO to lead the charity into the next phase of its development. This is an outstanding opportunity to shape a continually developing organisation alongside an enthusiastic and committed team. 

The role

The CEO will be responsible for providing leadership, developing and implementing strategic and operational plans, creating partnership and funding opportunities and being an effective advocate for the charity and its beneficiaries. He/she will manage the overall running of the charity through a small executive team, manage and deliver key projects (directly and through others), provide overall financial control and ensure good governance across all aspects of the charity.   


Main duties & responsibilities:   

Leadership and management

  • Be the face and voice of HUK - its principal ambassador
  • Liaise with, support and motivate all staff and secure their loyalty and commitment to the charity’s aims, objectives and ambitions
  • Seek out, develop and maintain effective working relationships with relevant organisations and individuals to promote the work of HUK and facilitate the implementation of its strategic objectives
  • Lead, scope, manage and deliver projects; both actively working on projects and managing HUK resources to deliver projects under defined criteria
  • Represent HUK at meetings, conferences and other key events
  • Lead by example; instilling a culture of professionalism, inclusion and continuous improvement supported by coaching, training and development
  • Lead, manage and sustain business change


  • Liaise with the board to develop HUK's strategic vision and lead its implementation
  • Identify strategic risks, issues and opportunities; initiate and lead related changes
  • Seek and implement innovative opportunities to keep HUK relevant and at the forefront of positive healthcare change 

Partnership and business development

  • Lead the promotion and development of HUK’s work to raise its profile and maximise its reach
  • Network to develop and nurture beneficial partnerships with supporters, donors and relevant authorities/organisations within HUK ethical policies 
  • Work towards HUK’s long term sustainability by maximising income and developing its business model 

Advocacy and influence  

  • Be an effective advocate of HUK, maintain and protect its brand identity and reputation
  • Seek opportunities to influence academic institutions, government, NHS and local authorities
  • Champion patient care standards and best practice


  • Oversee and line manage the Operations Executive and Educational Manager   
  • Line manage the communications function
  • Ensure that HUK services, contracts and projects are delivered to the highest standard, within targets and budgets
  • Make recommendations to the board in relation to plans and budgets
  • Oversee the recruitment, management, remuneration and effective deployment of staff   
  • Be responsible for the custody, maintenance and efficient use of the charity’s assets
  • Undertake other commensurate duties at the request of the board

Governance and compliance

  • Ensure that HUK’s overall governance structure, policies, process and procedures are appropriate and effective  
  • Attend all board meetings, prepare papers and raise pertinent matters n a timely fashion 
  • Ensure that HUK meets legal and regulatory requirements and adopts charity best practice  
  • Ensure that personal data practices are GDPR compliant  
  • Ensure that major risks are identified, regularly reviewed and systems and procedures put in place to mitigate such risks; develop and implement HUK’s risk register

Financial control

  • Ensure that HUK’s financial resources and assets are managed effectively and remain in good standing 
  • Liaise with the board to develop and lead HUK’s financial plans, including setting budgets, income generation strategies and overseeing all fundraising activities
  • Oversee production of management and statutory accounts and annual reports

Person specification

Essential experience/knowledge

  • Proven record of achievement in a senior position within a charity/NPO
  • Partnership working and external relationship management
  • Managing, motivating and developing staff
  • Business planning & development and fundraising
  • Project management and service delivery across multiple functions
  • Financial management including budgeting and delivery of cost and income targets
  • Robust knowledge of charity governance and controls
  • Risk management
  • Managing organisational change
  • Working with a board or an equivalent body
  • Representing an organisation in public and with the media
  • Knowledge of the healthcare environment and the role of patient bodies
  • Use of MS Office suite and online systems
  • Current UK driving licence                            

Desirable experience/knowledge

  • Educated to degree level or equivalent professional qualification
  • Experience in the charity healthcare sector
  • Established networks within the NHS at appropriate level

Required personal attributes

  • Inspirational leadership, management and motivational skills
  • Highly organised, adaptable and flexible
  • Strong communicator at all levels and across all formats  
  • Collaborative and contributory within a team 
  • Excellent relationship building skills  
  • Networking and being politically astute
  • Excellent interpersonal skills
  • Ability to engage, persuade and influence  
  • Strong financial and business development skills  
  • Rigorous analytical skills
  • Technologically literate to a high level               
  • Empathetic


National Employment Savings Trust pension scheme matched to 3%

25 days annual leave plus statutory Bank Holidays


Information for applicants

  • Apply by emailing CV and a letter explaining how you meet the requirements of the role (both documents maximum 2 pages at 12 font) 

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