Horizons III (London): Keep Moving On

The third Haemnet Horizons workshop was attended by 19 nurses from 11 countries. The meeting was supported by an educational grant from Sobi and CSL Behring.

The purpose of the workshop was to hear about the work undertaken since Berlin and to agree next steps in achieving the three core objectives set out in Horizons II to enhance the role of nurses in future haemophilia services across Europe. Participants also discussed whether leadership, identified at a nursing event supported by Sobi in October 2017, is an issue the group would like to address.

Education

Objective: Ready access to haemophilia-related education developed and delivered by haemophilia nurses.

Discussions about the nurse’s role in different countries revealed common themes. It is important to build self-confidence in the nurse’s professional standing to better face the challenges presenting by new roles and changes in clinical practice. Discussion confirmed that education for haemophilia nurses is unevenly spread in Europe. Provision is greater in Western Europe than elsewhere and while there is a European haemophilia nurse curriculum, there is no Europe-wide education programme.

Following discussion of access to education in each of the seven areas of the curriculum it was clear that a primary source of nurse education is through self-directed learning and that much is learned from daily practice: Sara Garcia described their departmental visits to the haematology laboratory to learn about the practicalities of monitoring factor levels. This is a useful step because labs are likely to have a more important role in management in the future. It was also clear that resources are more readily available in some countries than others and there is a need to share proactively, particularly for the UK.

It was felt that a modular induction programme could provide a comprehensive resource from which nurses would choose the sections they needed to fill gaps in their knowledge. Representatives of EAHAD have been enthusiastic about developing closer links with nurses; Haemnet Horizons members might consider standing for vacancies on EAHAD’s Nursing Committee.

The Haemnet Horizons group agreed:

• To carry out a survey via the Haemnet website to evaluate need and preferences for delivery. Initially, this would include only Haemnet Horizons group members but would then be rolled out more widely.
• To share, with support from Haemnet Horizons, the development of initiatives that members have developed locally.
• To liaise with the EAHAD Nursing Committee on a joint education programme that can be developed by Haemnet Horizons. Kristian Juusola (Finland), a member of the EAHAD Nursing Committee and of Haemnet Horizons, welcomed this proposal.

Patient-focused care

Objective: The development of patient-focused care to be based on equal collaboration between all healthcare professional, including doctors.

While everyone welcomed the introduction of new extended half-life clotting factors, all recognised that enhancing the ways we support patients is the key to improving care. The objective of patient-focused care is to empower the patient and family/carer to take the lead in determining the management of their care. This radical approach means that the multidisciplinary team would follow the patient’s lead, recognising that they are experts in their own care. If patients are to carry out this role effectively, they need access to education and information about every aspect of care management in relation to their condition.

The Haemnet Horizons group recommended:

• Members to each revisit the education resources they have locally and share them within the group.
• Developing an aid to infusion technique in the form of a checklist and evaluating its effectiveness and uptake among young people (age 15 – 18) and young adults (19 – 25). Haemnet is currently working on a self-infusion guide that will be published on its website and can be translated into European languages.
• Developing a guideline for patients about the management of small bleeds and recognition of joint bleeds.

Haemnet Horizons Aspiration: Following a video of an interview with Deb Gue, Clinical Nurse Specialist in Vancouver, it became clear that this way of working is something to which all aspired, while recognising that the realities of achieving this brings many challenges. Extra resources would be needed to introduce this approach to avoid the risk of having to squeeze it into an already tight schedule.

Deb and her colleagues are pioneers of advanced patient-focused services in which patients are supported to develop their own management plan with support from their multidisciplinary team. At the outset they did not experience resistance from medical colleagues and over time have been able to transform the culture of haemophilia care using, among other techniques, motivational interviewing. The group agreed that Deb is an inspirational nurse leader and that motivational interviewing is a valuable tool that would improve clinical practice in today’s fast-changing care environment.

 

Research

Objective: For nursing research to become the norm and to find ways of making it possible and practical for all haemophilia nurses to engage in it.

Research is an integral component of the haemophilia nurse’s role but it is also clear that it is time-consuming. Group members are already busy so they agreed that the most useful research projects would involve aspects of clinical practice that are already in place and, with support from other group members and by sharing resources, valuable work could be done to enhance the nurse’s role. Communication skills (which need to be learned) and good relationships with colleagues were identified as key factors in successfully integrating research with clinical practice.

Haemnet Horizons Aspiration: The group agreed that the role of nurses in presenting research in large meetings is not adequately recognised and aspire to nursing being on the main platform on a par with medical colleagues. Too often the nursing component is included only as part of a more general topic or in a session that is separate from the general proceedings and primarily attended by nursing colleagues.

An example of what we can achieve: Nanda Uitslager (The Netherlands) described how a discussion in the Horizons II (July 2017) meeting about how frequently patients with mild haemophilia should be seen has now progressed from an idea to a completed research project ready for presentation. With advice on research methodology from Haemnet, she utilised the Haemnet Horizons network to gather examples of clinical practice in Europe and she will be delivering an oral presentation at the forthcoming World Federation for Hemophilia Congress (May 2018). This is an example of how Haemnet Horizons can support research and illustrates what can be achieved by an individual who is passionate about their project. Nanda is now recognised among her peers as someone who can plan a research project and see it through to completion.

The Haemnet Horizons group agreed:

• To form a research sub-group ‘Haemnet Horizons Research’ to develop and support research by group members
• To develop a project ‘The Switch Factor’to evaluate how best to support patients switching to extended half-life clotting factors and ultimately to develop and share protocols
• To publish the results of their research.

 

Leadership

At a Sobi hosted event in October 2017, with participants from across Europe and the United Arab Emirates, a fourth area that of leadership was identified and discussed as a potential addition to the Haemnet Horizons focus for action.

Members reiterated that Horizons is a valuable forum that enables them to build strong sustainable relationships and share different experiences with the aim of improving practice. It is important to recognise that the individuals who make up Haemnet Horizons are already leaders in their professions and as such they can benefit from mutual support and exchanging ideas in a setting that is not constrained by interprofessional boundaries.

The group agreed that leadership is something to be encouraged. Members recognised that they already have many of the skills of leadership – they are already effective leaders in their workplaces – but they would welcome support through Haemnet Horizons to develop and refine them and looked forward to working with EAHAD to develop nurse-led initiatives.

Sandra and Debra shared some of the current thinking around leadership, with a focus on collaborative leadership as an effective approach in today’s uncertain times. They asked everyone to consider the leaders they see operating in this way and what the qualities of leadership they experience from these people and themselves.

We heard of many qualities that go to make a good leader. Some define the person, others determine their behaviour towards others. Having the self confidence to lead means an individual is also able to recognise their limits, delegate and ask for support. Health professionals will follow – even be inspired by – someone with integrity, wisdom and knowledge but that person must also have great communication skills and be prepared to listen as much, if not more, than they speak. They are also people that place the patient central to decision making, unite the team and value the opinions of all. Things get done by finding and motivating the right people to do them – it’s like living in a small village: relationships are the key to getting things done.

It was clear from the discussion that nurses are aware of the challenges they face when trying to improve clinical practice. Although they play a pivotal role within the multidisciplinary team and carry responsibility for their clinical decisions, they felt their leadership is not fully acknowledged and are keen to work together to further develop their skills and confidence.

Haemnet website

Haemnet aims to provide haemophilia nurses with a resource for networking and professional development through its website. During Haemnet I (Amsterdam) we explored the options for web based learning and connection and it was clear from the Haemnet team and from participants that the site had huge potential but needed redevelopment. Following a redevelopment informed by feedback through a user consultation, Mike and Estelle shared the background to the redesign and a prototype at Horizons III. The new format is designed to be clearer and more interactive. It provides messaging and notifications, access to training, events (with the potential for online booking), a knowledge base of published articles (with tagging) and a community section for forums and closed groups such as Haemnet Horizons. There will be an interactive list of treatment centres so that nurses can access colleagues and signpost patients who are travelling/relocating.

The Horizons group felt that the prototype is a simple and helpful design. Members suggested that it would be useful to have an area devoted to research, translation into languages other than English and links to other haemophilia sites. Overall, the nurses welcomed the redesign and felt the site would be a useful tool for clinical practice and research and provide a forum for continuing relationship development among Horizons colleagues.

Summary

Haemnet Horizons III confirmed nurses’ commitment to collective action to improve haemophilia care in Europe. Members collaborated throughout the day on the core aspirations identified in Horizons II, demonstrating that strong relationships have been established and the foundation has been laid for an active Europe-wide network. The group defined realistic objectives for each of the core aspirations which continue to evolve with further reflection and additionally agreed to consider ways of promoting nurse leadership.