In the spotlight

Nurses Committee Newsletter – Spring 2024

Nurses Committee Newsletter

Spring 2024

Congress round upEAHAD Committees and Working GroupsMeet your haemophilia colleaguesEducational ResourcesEAHAD 2025 CongressNews and useful Resources

Congress round up

Allied Health Professional Day during EAHAD 2024 Congress

The EAHAD AHP Day 2024 was well received. There were 127 attendees registered as nurses.

Joint session

This year we held our first extended joint session with the aim to discuss and learn from each other. 

Although non-factor replacement therapy is extremely valuable for our patients, it also introduces new challenges for nurses, physiotherapists, as well as psychosocial professionals. A member of the three EAHAD committees presented a case, which was discussed with the panel and all participants.

The first case was about a boy who found the subcutaneous injections extremely painful, reviving memories of being firmly held before injections, a practice that we don’t longer recommend. Another case shown how the impact of memory can impact a whole family. After switching to a new product the patient had a bleed-free period, but a severe nosebleed brought back all the memories. The loss of control by not being able to inject when you need it, before sports for example, is an issue that is not always discussed or adressed. The final case was about a man that felt so insecure that he switched back to using clotting factor. This was very relatable for HCP’s and there was a relief among participants that they were not the only ones noticing this issue.

Normally, discussions in a big group aren’t easy, but we were happy to see many participants sharing their experiences. The consensus from the discussion was that we need to have longer consultations with patients before and after changing products. We should ask open questions, such as ”We have noticed that some patients have these problems/issues, how is that for you?”.

We are glad to say that the longer joint session was successful with many people engaging in the discussion.

The Nurses Stream

During the Nurses Stream we continued with information about Emicizumab from the Haven studies. Additionally, we presented the results of a questionnaire distributed amongst the EAHAD nurses’s network about injectioning novel products. We received 49 responses, evenly distributed amongst nurses treating children, adults or both, representing around 1200 patients. Results will be published at a future date but indicate that pain at the injection site, is wider spread than reported in the Haven studies, along with other interesting findings.

The SLAM session provided good pitches from five nurses. The winner was Josipa Belev from Croatia, who presented on the ”Effect of nordic walking on risk factors for cardiovascular disease in people with haemophilia”.  The winner was chosen by a selected jury of nurses from different countries. Kate Khair encouraged applications for future years,

During our last session Saskia Acda and Robert Andersson provided valuable insigights for nurses on recognizing low health literacy in patients. We received tips from Saskia Robert discussed the importance of using professional interpreters instead of family members to translate. An official interpreter is neutral, everything is confidential and every word will be translated without bias. He recommended booking enough time, making introductions, speaking to the patient rather than the interpreter and planning what you want to say. The common factor was: use simple language, short sentences and ask control questions!

World Federation of Hemophilia Congress 2024

The WFH Nurses Committee provided the opportunity to present an overview of their ongoing work, the ISTH Nurses Committee and the EAHAD Nurses Committee.

EAHAD Nurses Committee Vice chair, Maj Birkedal, highlighted the much-appreciated collaboration between the three committees and Haemnet that led to the production of the three webinars on how to prepare a poster, how to write an abstract and how to deliver a successful oral presentation.

In conclusion, the Professional Development Day at WFH included great discussions and a varied programme with presentations from both patients as well as a broad representation of HCPs highlighting the multidisciplinary nature of care for people living with a bleeding disorder.

Are you aware of which are the EAHAD Committees and working groups?

The committees are the Executive Committee, Nurses Committee, Physiotherapists Committee and the Psychosocial Professionals Committee.

The working groups are the Accreditation and Audit of Haemophilia Centres Working Group, Coagulation Factor Variant Databases steering group, E-Learning Working Group, Gene Therapy Working Group, Glanzmanns Disease Working Group, Very Rare Coagulation Factor Deficiencies Working Group and the Women and Girls+ with Bleeding disorders Working Group.

Past and present members of the Nurses Committee are involved in the Executive Committee as well as the Accreditation and Audit of Haemophilia Centres Working Group, the Gene Therapy Working Group and the Women and Girls+ with Bleeding Disorders Working Group.

EUHASS

EUHASS is a pharmacovigilance programme to monitor the safety of treatments for people with inherited bleeding disorders in Europe. Haemophilia treatment centres report adverse events directly to the EUHASS website and regular surveillance reports are produced. In the past, infections transmitted by contaminated concentrates resulted in many patients becoming infected with HIV and hepatitis C viruses. Although current concentrates are safer in terms of infections, continued close surveillance is required. Because Haemophilia and other inherited bleeding disorders are rare illnesses and because adverse events related to their treatment are also rare events it is necessary to follow a large number of patients in order to precisely define the relative risk of developing these complications after treatment with the different products. This is what EUHASS has been designed to do by creating a prospective adverse event reporting system for Europe. Summary of progress since surveillance began on 1st October 2008. https://web.euhass.org/info/

 

Meet your colleagues!

This spring we want you to meet our colleagues Marlène Beijlevelt and Malin Axelsson!

Marlène Beijlevelt

Past chair of the World Federation of Haemophilia Nurses Committee. Advanced Nurse Practitioner in Bleeding Disorders working with children and their families in the Amsterdam University Medical Center in Amsterdam the Netherlands. Marlène is the past chair of the WFH Nurses Committee and former member of the Dutch National Haemophilia Nurses committee.

Tell me about your career as a nurse?

I first qualified as an adult nurse but very quickly afterwards completed my paediatric and also neonatal nurse training.  In the Netherlands you must first train as an adult nurse.  I initially worked as a neonatal nurse and nurse manager.  Then, for family reasons I needed to move city and I saw a haemophilia nurse job advertised and applied.  That was 28 years ago and I am now a Nurse Practitioner in bleeding disorders.

What made you stay in bleeding disorders care?

Every day is different.  I love the work I do and the patients and families I care for.  I know them so well and now I even look after the children of the children I used to care for.  My job is my passion so I like to do it 200% and my families show me that I make a difference to their lives.  Many children run to me and hug me even when they know I need to do a vein puncture.  I start with the daily care, it is the most important, but I also love the research and the collaboration with the multidisciplinary team.  It makes a difference to how I practice.  I have an enthusiasm for haemophilia nursing and love to share that enthusiasm. 

I like how participating in research and collaborating with different committees influences my practice.  It makes me think more critically.  It makes me think 10 steps ahead and promotes an interest in new developments.  Research and data collection is an essential part of patient care.  Even trials that fail are important.  I have learned so much from being involved in research and being chair of the WFH nurses committee and everything I learned can be brought back to the patient.  I love all this about my job. 

Do you see any future challenges to haemophilia nursing?

New treatments and improvements in care will challenge how we practice.  Change always does, but that is not a bad thing.  We will have a new generation of children and parents who will not recognise bleeds or not be able to infuse intravenous treatments.   Patients are also becoming more active in their care; they are more likely to question us and nurses will be the translators between the patient and the Multi-Disciplinary Team (MDT).  We will need to have more understanding of all aspects of treatment and care to fulfil this role.  

You have just handed over the chair of the WFH nurses committee.  How do you feel about that?

I already miss it but on the other end: I have been an active contributor to the international bleeding disorder community for the past several years as I have wished to.

My ambition as chair was to make the committee belong to nurses and progress haemophilia nursing more than just reporting information.  I am very proud that we have published the article https://doi.org/10.1111/hae.15003.  I would also like to see the nurses’ committees of WFH, ISTH and EAHAD work more collaboratively like we did in the 3 webinars we made.  We are all fishing from the same pond to look for new members and great, innovative ideas for conferences and it would be nice if we could collaborate more and for our programmes could complement each other.

I was a member of the committee for four years and another four years as chair so I am ready to be not so busy.  That has not happened yet as I am still a member of the committee.

What do you like to do in your spare time?

I have three adult children and a husband who look after themselves but they will enjoy me having more time.  I also have two flat coated retriever dogs called Lilli and Teun, who I walk every day and train twice a week so I will have lots to fill my time.

Malin Axelsson

The newest member of the EAHAD Nurses Committee

What’s the one thing about you few people know?

At young age, I was quite good at basketball even though I’m pretty short.

Name 3 active hobbies you love:

I’m really not a very active person at my free time but I do enjoy mushroom picking in the woods in autumns.

Name 3 quiet hobbies you love:

Sewing on my four sewing machines, reading books, and solving crossword-puzzles.

Can you give us a brief overview of what it is you do in your work?

As a paediatric specialist nurse my focus is on children with a bleeding disorder in Malmö, Sweden. Together with the medical team, we introduce treatment to newly diagnosed children, assist families in coping and handling the medication and illness. The nurse is also a first person of contact if an issue or question appear, and I do consultation both in person and on distance. A lot of my time is used for education and for strengthening the child and family knowledge about the bleeding disorder. Besides this core role I also coordinate care and surgery for all our patients and are involved in the clinical trials as research coordinator and nurse.

What’s next for you in your work? What are you looking forward to?

We are currently working on a new way of following up on other bleeding disorders than haemophilia to meet their needs in a better way. This should be done by a nurse led clinic.

What makes you concerned or worried?

I feel concerned about the political climate and parties who are agitating against vulnerable groups of people. Instead of including all types of people in our society and focusing on what’s good for the whole community you are rewarded on looking after what is best for yourself.

When you think of the future of the kind of work you do, what gives you a sense of hope?

Besides hopefully better, safe and less burdensome treatment options for persons with bleeding disorders I feel glad about the development of nursing role and nursing research.

Need something educational and fun to read?

EAHAD Nurses Committee publications

The EAHAD Nurses Committee recently published an article on the role of the specialist nurse in comprehensive care for bleeding disorders in Europe: an integrative review. This will serve as the backbone of the upcoming European principles of care for nursing provision in bleeding disorders. The review identified five roles of the specialist nurse in bleeding disorders: educator, treater, coordinator, researcher and supporter. With the development of Principals of Nursing Care, the committee will strive to promote and safeguard patients’ access to the provision of care by specialist nurses.

The Journal of Haemophilia Practice

The Journal of Haemophilia Practice (JoHP) is an online free journal. In 2023, on the International Nurses Day, the JoHP published a series called “Living, Caring, Learning papers”. Nurses from across the bleeding disorder community shared reflections on their practice and insights learnt from patients in short articles. The series continued in 2024 and there are 13 articles from nurses from all over the world. The last article is a reflection about nurses by Clive Smith, who is an haemophilia patient as well Chair of the UK Haemophilia Society.

In Volume 10 (2023) Kate Khair describes how patients shape the specialist haemophilia nurse. There are reflections on therapeutic relationships, the journey of a woman with severe haemophilia, early education, transition challenges to trust & teamwork in patient care.

Volume 11 (2024) continues with thinking outside the box, building family relationships, changing mindsets, listening, collaborating across borders, setting boundaries for wellbeing for all, the power of qualitative research and ends with the nurse-patient relationship.

Contributing nurses are from all over the world and many names will sound familiar from meetings and online or in-person congresses.

All articles touch on the unique relationship we have with the people under our care. A particular highlight is the article by Cyrus Githinji, a haemophilia nurse from Kenya. He describes a complicated case of a PwH with a pseudotumor in a country with limited access to treatment. Articles like this show that what you can always do is reach out across borders for knowledge and support. Collaboration might be a solution.

If you want more details, start reading! And if you want to publish in JHP the team would be delighted to hear from you.

EAHAD 2025 Congress

Abstract submission

The next EAHAD Congress will be from 4th to 7th February 2025 in Milan, Italy. Last year, in Frankfurt we had a lot of nurses attending, we really hope that 2025 will be a good opportunity to share knowledge and expand our network. The AHP Day will be on Tuesday 4th February, and will start with a 2-hour joint session, and we hope will be as successful as it was this year.

Abstract submission will open in October. We would like to invite you to submit an abstract. Successful submissions will be selected for a poster presentation and the most interesting topics will be invited for an oral presentation in the SLAM sessions. It all begins with writing the abstract!

If you need assistance preparing an abstract, please check out the series of webinars which have been made in collaboration with the EAHAD, WFH and ISTH Nurses Committees and Haemnet. The webinars are available online and free to watch. All three committees have noticed a decrease in the number of abstracts received and hope these webinars will support nurses in producing more.

  1. How to write an abstract by the EAHAD Nurses Committee and Haemnet
  2. How to prepare a poster by the WFH Nurses Committee
  3. How to present using PowerPoint by the ISTH Nurses Committee

As there is still a lot of time, start thinking about a case study, a unique development or solution to a problem and share your work with all of the other nurses by submitting an abstract. We can learn from each other.

Call for case study in very rare bleeding disorders

We especially invite you (European nurses) to send case studies/solutions to problems in the area of very rare bleeding disorders. We are looking for extra case presentations for the last session of the Nurses Stream titled “How do you manage rare bleeding disorders”. Simply send an email with a brief overview of your case to info@eahad.org, with “Nurses Stream 2025 Session 3” in the subject line. The deadline for submissions is July 20th, 2024. We hope to receive a lot of case studies and have a lot of posters with practical information. Please submit your abstract, and we look forward to meeting you in Milan.

Star European Haemophilia Nurse Award

We invite nominations for the Star European Haemophilia Nurse Award 2025. The award recognizes the exceptional work of specialist nurses in the field of bleeding disorders who go above and beyond in patients care or support for their colleagues, in ways that go unnoticed. If you are aware of a nurse whom you feel is deserving of the award, please write an email to info@eahad.org explaining the work, the project or the care a nurse has delivered (maximum one page). This is the third year of this award. There have been very few nominations in previous years. If you do not feel this is a valuable award, we will not continue it next year. If you have other suggestions we would be happy to consider them. 

Sincerely,
Nanda, Maj, Linda, Mary, Greta, Renester and Malin (the EAHAD nurses committee)

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