ASPIRE: empowering professionals to lead haemophilia care

The evolving treatment landscape, the drive towards individualised care for people with haemophilia, and constrained budgets pose significant challenges yet offer great opportunities for members of the multidisciplinary team (MDT) in leading clinical services. Alongside this, surveys conducted by the UK’s Haemophilia Nurses Association (HNA) show an uneven age structure among haemophilia nurses, with the likely retirement of many senior haemophilia nurses in the UK over the next 3-5 years, raising concerns about future clinical and service leadership.

If we are to make the most of these opportunities, there is a need to encourage and support potential leaders within haemophilia care teams who can engage colleagues and initiate and progress service development across all roles, in order to improve haemophilia care across the UK. To address these challenges, the ASPIRE programme has been established to encourage and support a new generation of haemophilia leaders who are committed to improving haemophilia care across the UK, and beyond. It is aimed at those who wish to lead and influence change in haemophilia care, who wish to influence the people they work with, and who are not afraid to rethink the way that care is delivered. It is for people who see themselves as future clinical and/or service leaders, and who are committed to their own development and the improvement of clinical services.

ASPIRE is open to healthcare professionals from multiple disciplines within the haemophilia care team, including nurses, physiotherapists, social workers, psychosocial therapists and psychologists, and provides the opportunity to be members of an MDT leadership community supporting each other in their leadership roles, and contributing to clinical and educational initiatives in haemophilia. Such initiatives include research, active involvement in the Haemophilia Nurse Association (HNA), World Federation of Hemophilia (WFH) and other appropriate congresses, participation on advisory boards, and leading change within haemophilia centres. ASPIRE has been designed and sponsored by Haemnet to support clinicians to ‘lead as clinicians’ in contrast to ‘leading as managers’.

What is ASPIRE?

ASPIRE is a 6-month development programme comprising three workshops (each of 1-1.5 days), interspersed with 2-hour facilitated action learning meetings (held face-to-face or by telephone/Skype/Facetime), culminating in a coaching session. The modules – ‘Leading Self’, ‘Leading Others’ and ‘Leading Service Change’ – engage participants in theoretical and practical aspects of leadership, with a focus on applying learnings to the ‘real world’ of leading haemophilia care.

The modules consider old and new leadership thinking, and the challenges of leading in a complex world, with theoretical perspectives including ‘Engaging Leadership’, ‘Being Yourself with more Skill’, and ‘Power and Influence’, ‘Dynamic Patterning’, ‘Embodied Leadership’ and ‘Collaborative Leadership’.

During action learning sessions, groups of participants support each other to resolve challenging situations they are experiencing, and review progress in improving haemophilia care services. At the end of the course, one-to-one coaching sessions provide an opportunity for participants to identify and focus on their continuing professional development in more detail, with time to reflect on their learning and achievements from the programme.

ASPIRE has been developed by Dr Sharon Varney, a specialist in developing people and organisations and a member of faculty at Henley Business School, University of Reading, and Sandra Dodgson, an experienced collaborative leader currently supporting strategic development at Haemnet.

Selection for ASPIRE is by application, including a 100-word summary on why prospective participants wish to take part in the programme and what they want to achieve in leading haemophilia care. The programme is run annually with small groups of 6-8 people, with the content tailored to the needs and expectations of each cohort of participants.

Evidence-based principles

Underpinning ASPIRE are core principles of emotional intelligence, positive psychology and complexity science, which are increasingly used in leadership and organisation development. Emotional intelligence is an individual’s capacity to recognise their own and other people’s emotions and feelings, to use emotional information to guide thinking and behaviour, and to adapt and adjust to achieve their goals. At an early stage in the ASPIRE programme, participants are encouraged to explore and understand themselves as leaders and how they engage with others; their personal leadership style and leadership vision.

Positive psychology helps individuals to recognise and build on their strengths so that they can work collectively in an effective way. In ASPIRE, positive psychology is an important element in encouraging participants to consider how they might contribute their skills in a leadership role, for example, in facilitating the spread of best practice in haemophilia care across the UK.

Collaborative leadership focuses on achieving results across boundaries, be they within or between organisations. During ASPIRE, participants explore how to secure value from difference, share control, and trust a partner to deliver, even though that partner may operate very differently from themselves – something that is at the heart of MDT working.

Complexity science focuses on the dynamics of complex organisations and systems, and how interactions between individual components can impact on collective activities and behaviours. In ASPIRE, complexity science is used, for example, to demonstrate that improvements in haemophilia care are often not as difficult or impossible to achieve as we sometimes believe. Instead, making what may seem like a very small intervention at the right time and place can have a significant impact and make fundamental changes much more achievable, as much of the service improvement work across the NHS has demonstrated. Having the confidence to ‘think small but effectively’ can be the route to success.

What has happened?

On a personal level, some participants ASPIRE have found that the programme gave them more confidence in expressing their views and opinions in MDT and other meetings – in ‘finding their voice’. They became aware that leadership can be quiet and reflective, and that small, focused contributions to discussions are as valuable as louder, more frequent interventions. For others, ASPIRE facilitated a shift from thinking that they might have leadership potential to knowing that they were leading and had the skills, knowledge and resilience to be leaders; gaining the confidence to take on leadership roles.”

Taking part in ASPIRE has also given participants space to consider what improvements they could make to haemophilia services in their own centres, and how these might impact on efficiency and budgetary considerations within their Trusts. These included opportunities for better communication with colleagues to improve service delivery, and development of an initiative to improve communication with male patients about safe sexual practices for reducing the risk of bleeds (and potentially treatment costs) embedded in development of their transition services.

During module 3, ‘Leading Service Change’, participants in ASPIRE work together to develop a shared vision for the future of haemophilia services in the UK. The figure shows the vision developed by our first cohort in 2016. This envisages leading a continued shift from a medical model of care to the comprehensive care model, with the voices of MDT members and people with haemophilia at its heart. To achieve this, they aim to support stronger collaboration between MDT members, and enhance input into research and education. They believe that access to a broader skill mix and knowledge base will result in the best possible patient-centred care. This is a vision that will evolve and be taken forward by the growing leadership community participating in ASPIRE.


The ASPIRE programme has been established to encourage and support a new generation of haemophilia leaders who are committed to improving haemophilia care across the UK, and beyond. It is open to healthcare professionals from multiple disciplines and is designed to support the development of leaders amongst members of the haemophilia care team in a way that contrasts with hierarchical leadership and management courses more typically found in the NHS.

As a result of ASPIRE, participants in 2016 and 2017 are now playing an active role in leading change within their own services, as well as leading Haemnet and other professional initiatives.

ASPIRE is an annual opportunity to engage with colleagues from across the UK and lead changes in practice, and applications are currently being considered for the 2017 programme. It is envisaged that, together with Haemnet, participants will build on these foundations to deevlop a vibrant, cross-disciplinary, multinational clinical leadership community that benefits people with bleeding disorders and ensures that ‘excellent haemophilia care is an everyday experience’.



The ASPIRE programme was developed by Haemnet with funding from the Burdett Trust for Nursing. A more detailed version of this article is available in The Journal of Haemophilia Practice.