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The role of the Working Party Nurse

Autoimmune Diseases Working Party (ADWP)
Inborn Errors Working Party (IEWP)
The EBMT Nurses Group is currently looking for two nurses representatives within the Inborn Errors and the Autoimmune Diseases Working Parties. In this article, Helen Jessop, Claudia Boglione and Hilda Mekelenkamp tell us about their experiences and give us a glimpse of what the role of working party nurse entails.

The role of the Nurse Representative within the Autoimmune Diseases Working Party (ADWP)
By Helen Jessop (Sheffield, UK) and Claudia Boglione (Florence, Italy)

The role of the Nurse Representative to the ADWP has been an interesting and highly educational one. The members of the Working Party (WP) have been very welcoming, particularly the Chairs and Secretary (both past and present) and it has been an honour to work with them.

The EBMT Nurses Research Committee first approached Helen in October 2016 to ask if she was interested in applying for the newly created role. At this time she had already attended several WP Educational and Business Meetings having worked for some years in her institution performing HSCT for AD. Claudia who also has considerable experience working in a centre performing HSCT for AD took over in 2020 but is stepping down, as her career is about to move in a different direction.

As part of the role the Nurse Representative attends the WP sessions at the EBMT Annual Meeting and the WP Educational Meeting that is held each Autumn. Since the meeting in Florence in 2018 we have organised a parallel Nurses Session at the annual Educational meeting and through the generosity of the WP have been able to offer bursaries to encourage nurses. Due to Covid-19 pandemic the meeting for 2020 was virtual and as a result we held a

successful joint Nurse/Physician/Patient session. This will be repeated this September. The organisation of these meetings has necessitated attendance at virtual planning meetings. The role is under the supervision of the EBMT Nurses Group Research Committee and includes attendance at the annual EBMT NG RC Study Day as well as support and encouragement from this group.

Work within the group has led to several publications, one as first author, working closely with other WP members to produce a position statement primarily aimed at patients and their carers. There have also been contributions to other papers both within the WP and outside of it. In addition we have been invited to present work relating to the care of patients undergoing HSCT for AD at both national and international meetings.

An integral part of introducing the role of a Nurse Representative is to encourage nurse engagement into the research activities of the WP and where possible to stimulate nurse led research. We have an on going project looking at the provision of HSCT for AD across Europe as in some countries treatment is not funded and many patients are travelling abroad to receive treatment. We hope to present this working at the Educational Meeting in September.

We would encourage anyone with an interest in nursing research who works in an institution performing HSCT for AD to become involved in the activities of the ADWP.

By Hilda Mekelenkamp (Leiden, the Netherlands) - Nurses Group Paediatric Committee Chair and Paediatric Diseases Working Party Nurse

I am Hilda Mekelenkamp and I work in Leiden the Netherlands for almost 20 years. Currently as a senior pediatric HSCT nurse, as program manager on a project about Academic Nursing and as a PhD-candidate. My research is focusing on HSCT decision-making in hemoglobinopathy patients. It is my mission to provide excellent (nursing) patient care, which is evidence based, where professionals show their leadership and where patients perspectives are included. In order to achieve this, local, regional and (inter) national collaboration is very important. During several meetings in the past, I had the joy to meet members of EBMT Nurses Group and Paediatric Nurses Group and they inspired me with their enthusiasm, professionalism and the way they collaborated. In 2017 I joined the EBMT Nurses Group as a member of the Paediatric Nurses Committee. This provided me the opportunity to be part of an international community of highly specialized professionals where we together can promote, develop and share knowledge between professionals across Europe and outside.

In 2018 I became the link nurse to the IEWP, and I got the opportunity to visit the IEWP meetings. The IEWP is a group of highly professionalized and hugely driven doctors, dedicated to work together on better patients’ outcomes for patients with inborn errors. I got the opportunity to share the lessons learned in a presentation about patients with inborn errors on a Nurses educational day.

In 2019 my role in the Paediatric Nurses Group changed to the chair position. The chair is involved in the PDWP. When the PDWP link nurse position became vacant, I choose to apply for this Working Party in order to more efficiently combine my tasks. Together with Simon Slade from the SAAWP and the Paediatric Nurses Group we organized the nurses’ part of the Midterm Focus Meeting (a collaboration between the PDPW, IEWP, SAAWP and Nurses Group). This was our first EBMT online meeting in the COVID pandemic and since then several online meetings followed.

Within the Paediatric Nurses Committee, we collaborated since years with the PDPW on several educational meetings and research projects. Currently we are finalizing two projects with writing the manuscripts. The first is a project on transition of HSCT patients to the PICU and the second is focused on pediatric palliative care. Knowing both the PDWP and the IEWP, I took the opportunity to perform a research study in collaboration with both working parties. This project is focusing on providing a better understanding of HSCT decision-making for hemoglobinopathy patients from the HSCT physician’s perspectives in order to improve the shared decision-making process. I believe this is very important since shared decision-making aims to include patients’ values and I think we all agree patients’ values are very important, however it is still underexposed in our daily practice.

Do you like to collaborate with international colleagues, to contribute to research within the Nurses Group and IEWP and do you want to be part of the EBMT community? The IEWP link nurse position is vacant and I can recommend this position. Looking forward to collaborating soon!.