NEWSN U M B E R 1 / O C T O B E R 2 0 1 2

• Editorial : Introduction to the Network • WFH 2012 World Congress : 50 years of advancing treatment for all • Haemophilia Care in Europe : an overview • What we can learn from each other : Education in Suriname • The History of the European Haemophilia Nurses Congress, EHNC

Introductionto the NetworkWelcome to the first EuropeanHaemophilia Nurses Network Newsletter - EHNN News. As a Committee we are excited to be able to launch this first Newsletter at our Conference here in Barcelona. We hope that you will find the information interesting and will be keento contribute both individually and as partof your National Group of HaemophiliaNurses in the future.

At our last Conference in Edinburgh in 2009 the then Committee wanted to progress communication and support for nurses working within haemophilia care within Europe. The Conference has been very successful and this is our 6th Conference here in Barcelona. We believe that it isnow time to progress and increasecommunication and networking ofnurses within Europe so we can work together on common interests.

The Newsletter will contain generalinformation as to what the Committee is working on and also cover events that are happening within Europe. Each newsletter will have a theme for the day, feedback from individual countries as to what is happening within National Groups, an educational item and a focus of Haemophilia Care within a named country.Please remember the Newsletter will only be as good as the information provided withinit and we hope you will support us by helping to write articles for us.

The EHNN Committee members are as follows :Petra Elfvinge - Sweden - petra.elfvinge@karolinska.seGabriele Giersdorf - Germany - gabriele.giersdorf@kkh.srh.deSusan Hook - UK - Susan.Hook@luht.scot.nhs.ukVirginia Puliga - Italy - virginiapuliga@tin.itCaroline Valk - Netherlands - m.c.valk@amc.uva.nl Johan Vandesande - Belgium - johan.vandesande@uzleuven.be

There is a seperate Committee to lead with the Newsletter.

Susan Hook - Chair of the EHNN

EDITORIAL

My invitation to the WFH Congress in the city of Paris was perfectly planned and organized; it ended successfully for me. Highlights for me were to meet all nurse colleagues globally after times of networking, to exchange topical news and experiences in Haemophilia.The great offer of parallel running presentations and symposia dedicated to Haemophilia often made the decision on which to participate, quite difficult. The presentations of topical themes like, von Willebrand Syndrom and other coagulation disorders, inhibitors and their treatment, pain treatment, sports and Haemophilia, treatment of babies, children, teens, grownups, elderly patients and carriers, industry’s research, products with prolonged half-life were very important for the nurses continuing education.The first day of WFH congress started with Haemophilia nurses workshops, the opportunity for nurses to present and speak about their varied expe-riences in Haemophilia patient´s care as

well as in national and global Haemo-philia networking. For example:Our French Colleagues presented their national network called Fidel`hem. Our Swedish colleague from Malmö, gave a “Short Review” of studies in Haemophilia. Generally national and international Haemophilia study results led to interes-ting discussions during nurses workshops. The presentation of Evaluations of burn outs, job satisfaction and burn out precautions imparted important aspects to nurses in Haemophilia care.Knowing about case reports of Haemo-philia patients’ treatment and care in strange cultures, having discussions leading to new ideas in Haemophilia field, speaking about topical care in general and networking worldwide was instructive.Two posters, the one titled “Networ-king in Haemophilia and other Bleeding Disorders Care: The Canadian and German Nurse Experience”, which origi-nated after the stay of my Canadian nurse colleague Nancy Hodgson in Heidelberg, the other poster developed by German Haemophilia Nurses titled:”Compliance in Haemophilia” were my German colleagues and mine contribu-tion to WFH congress. WFH congress again presented the great forum for Haemophilia nurses to exchange their experiences in Haemophi-lia field worldwide. WFH Paris 2012 was inspiring and I took home many impressions, new expe-riences and great motivation, motiva-tion I need for my patients.

50 YEARS OF ADVANCINGTREATMENT FOR ALL

GABRIELE G IERSDORF

SRH Kurpfanlzkranken - Haemophilia Center Heidelberg - Germany

EDITORIAL COMMITTEESybille Aumann - Germanysybille.aumann@medizin.uni-magdeburg.dePatricia Guillon - France - guillon-p@chu-caen.frKate Khair - UK - kate.khair@gosh.nhs.uk Karin Lindvall - Sweden - Karin.Lindvall@skane.se

Bert leenders - Belgium - lambert.leenders@huderf.beKaren van Leeuwen - Netherlandsk.vanleeuwen@amc.uva.nlVirginia Puliga - Italy - virginiapuliga@tin.itBranka Zaloznik - Slovenia - branka.zaloznik@Kclj.si

CONTENT

The European Haemophilia Nurses Network is fully supported by an educational grant from CSL Behring

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Now let’s have a quick view of some European countries.

SWEDEN: We have three Haemophilia Centres in the country: Malmö in the very south, Gothenburg on the West coast and Stockholm on the East coast.We have a total of 10 nurses working within haemophilia care. In Stockholm there is one unit for the adults and one unit for the children, but we are located on the same floor, which means we do see the children from the very beginning in the corridor.In Malmö and Gothenburg the same nurses work with both children and adults. The review appointments for the severe diagnosis are 1 to 2 times a year.We have a national organization for the nurses where we meet every 18 months for discussion.

DENMARK:The country has two haemophilia centres: One in Copenhagen and one in Århus. In Copenhagen they have both children and adults and in Århus there is one centre for adults and one for children.There are five nurses working with haemo-philia patients.They also have the multidisciplinary team.

NORWAY:There is one haemophilia centre in Norway with two nurses. They travel all over the country to take care of the patients and give information to daycare

and schools. They have both children and adults in the same center.They have a close co-operation with the national haemophilia society.The centre organize course for the different types of diagnosis. They also offer home visits for patients with severe and moderate diagnosis.They also have multidisciplinary team.

ITALY:There are 20 regions in Italy and each of them has one or more haemophilia treat-ment centres.There are guidelines drawn up by a panel of experts and recognized by the AICE about the best practice in the diagnosis and treatment of haemophilia.

BELGIUM:There is 6 HTC and one reference centre. Normally all children with severe haemo-philia are on prophylaxis. The country doesn´t have an official register. They have approximatly 1640 patients with bleeding disorders.There are some benefits for people with haemophilia due to the social system.All recombinant products are available and so are also the plasma products.

Haemophilia is a chronic disease charac-terized by regular bleeding episodes with consequences in the daily life of patients. As the treatment, whatever the strategy is, will be life-long, to be able to provide a good level of treatment care, a multidisciplinary approach involving multiple healthcare professionals will be proposed for every patient.Even if the disease and its consequences are the same all over Europe, the organi-zation of care can differ between countries. Two studies have been recently published: one by the European Haemophilia Therapy Standardisation Board (1) and the other by the European

Haemophilia Consortium and the World Federation of Haemophilia (2).In the western part of Europe (1), 11, out of the 14 participative countries have a centralized organization of haemophilia care, but only 8 have a national registry. National registries can be important for pharmacovigilance and budget allocation.All countries have Comprehensive Care Centres and all but Sweden have Haemophilia Treatment Centres. All centres can provide a day care for patients with haemophilia. In CCCs, the patient’s care is multidisciplinary invol-ving in all case a nurse specialized in haemophilia (see fig 1).

HAEMOPHILIA CARE IN EUROPE:AN OVERVIEW

PETRA ELFV INGE

Dentist

Orthopaedic surgeon

Social worker

Psychologist

Datamanager

Secretary

Physiotherapist

Haemophilia nurse

0 10 20 30 40 50 60 70 80 90 100

(1) The European Principles of Haemophilia Care: a pilot investigation of adherence to the principles in Europe. K Fischer and coll. Haemophilia, 2012: 1-9(2) Haemophilia care in Europe: a survey of 19 countries. B O’Mahony and coll. Haemophilia, 2012, 17: 35-40.

Figure 1. Availability of disciplines involved in care at centre level. (1)

Haemophilia nurse - Coagulation unit, Karolinska Hospital, Stockholm - Sweden

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Being a haemophilia nurse in a developed country with a good health care system gives me a unilateral side of the healthcare system for haemophilia patients.Two years ago I was given the opportunity to go to Suriname.Suriname is a small country in the north of South America; it is a former colony of the Netherlands.

It has a long history of slavery and became independent on 25 November 1975.The country has about 500.000 inhabitants and most of them live in, and around Paramaribo, the capital of Suriname.Paramaribo has four hospitals and a health care system that is completely different to the one in the Netherlands.

Suriname has no special care for haemo-philia patients. Based on a ratio of 1 Haemophilia patient on 10.000 people, one can assume that there are approximately 50 Haemophilia patients in Suriname.We know that some of them live in the Netherlands, like John Tjong Tjin Joe, a severe Haemophilia patient.John is a pharmacist and loves to go back to Suriname on holiday and to visit his family.As Paramaribo is a small community John heard the story about a 16 year old boy with Haemophilia. The doctors and the family did not know the severity of the haemophilia, because his FVIII level was never tested.

On one day the boy went to the hospital with severe abdominal pain. The hospital checked the boy but sent him back home.In the evening the pain had increased and he went back to the hospital. This time he was admitted and antibiotics was started. The doctor told the family if he was still in pain the next morning they would give him some clotting factor.

That night he died from an internal haemorrhage.Haemophilia patients in Suriname have severe health problems because of the lack of treatment.Back in the Netherlands the first thing John wanted to do was to improve haemophilia care in Suriname. He put together a team of Dutch specialists to go to Suriname to create awareness among the care takers such as doctors, laboratory, nurses and of course the patients.In April 2010 we went with 9 professional caretakers from different hospitals in the Netherlands to Paramaribo. We organised a conference, which was sponsored by Novo Nordisk. We gave workshops and held presenta-tions including television coverage, and some interviews in the newspaper. And importantly, we saw patients and were able to give them advice.

In the following two years we worked very hard to find a Doctor, a nurse, a physiothera-pist, a laboratory and a location to create a Haemophilia treatment centre in Suriname.

We also succeeded in making Suriname a national member organization of the WFH.

April 2012 we went back and we could open a treatment centre in the academical medical centre of Paramaribo.During our stay of 10 days we saw 44 patients and took blood samples from all of them. The laboratory was instructed how to determine and interpret the blood samples. We drew family trees, held a special evening for carriers and were broadcasted on the national news.A medical student went back to Suriname this summer to organise new meetings with the patients and encouraged them to join themselves.This project will be continued until the haemophilia treatment centre will be completely self supporting.The patients are very grateful for this improvement in haemophilia care and appreciate the contact with other haemo-philia patients.

To be able to do this as a Haemophilia nurse is very special and exciting. I feel honoured and very lucky being a part of this great project, and I can only hope that more European nurses are given an opportunity to do such a rewarding project.

WHAT CAN WE LEARN FROM EACH OTHER:EDUCATION IN SURINAME

CAROL INE VALK

The team from the Netherlands in the new Haemophilia treatment centre

The children’s hospital

Haemophilia nurse - Academical Medical Center, Amsterdam - Netherlands

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The EHNC was founded in 2001 by the specialized haemophilia nurses Hanne Thykjaer, chairperson, working at the Skejby University hospital in Aårhus, Denmark, Els Haan, member, working at the Van Creveldkliniek department of hematology University Hospital Utrecht in Utrecht, The Netherlands and Maureen Fearns, secretary, working at the Royal Victoria Infirmary Hospital in New Castle, United Kingdom.The 3 of us were members of the Nurses Committee of the World Federation of Haemophilia. One of our aims and objec-tives was to support our haemophilia colleagues in Europe. On a regular base we met each other at international congresses and often we expressed our concern that we missed the nurses from many other European countries, except from the UK, the Scandinavia, the Nether-lands, some of Germany and France. The main difficulty was the English language because every European country have a different language. Besides that, often

nurses did not get the opportunity to be invited by the Pharmaceutical industry to attend the international meetings because mostly only the physicians received invita-tions. Our biggest problem was to find a sponsor to organize educational meetings.

In 2001, Hanne raised money for a European meeting; she was a master in finding sponsors. This grant was provided by Henning Nielsen, representative of ZLB Behring, Denmark, I think, we own him a lot!

Our first meeting with Henning was in spring 2001 in Copenhagen where we developed the Aims and Objectives for the committee and letters for the representa-tives of ZLB Behring how to invite nurses of the haemophilia centers and letters to invite the nurses.

In 2001, the first EHNC meeting took place in Copenhagen followed by Amsterdam in 2003, before this meeting the committee also developed the Logo of the EHNC, 2 hands around the globe, which means, the support of nurses for the haemophilia patients in the world. The next meeting was in 2005 in Potsdam, followed by 2007 Lyon and Edinburg in 2009.During the first preparation of the Edinburgh meeting, Michael Grant of CSL Behring suggested to extend the meetings

to a European Haemophilia Nurses Network and start a Newsletter for European Nurses, this was a major step forwards and the committee was very happy with this opportunity.Maureen stepped down in 2003 because of her retirement, Susan Hook from Edinburgh, took her place in 2005 as secretary, and Hanne as chair, stepped down in 2007, Ingmarie Wollters from Goteborg took her place as committee member and stepped down in 2009. Els Haan took her place as chair, and stepped also down in 2009, Caroline Valk from Amsterdam has taken over her place as member.

It was a pleasure and honour to organize together these meetings, especially to notice that we all have our differences in culture but could work very together. The

meetings which we managed were mostly in our own time and gave a lot of pleasure. Often it was difficult to find nurses to give a presentation from outside of the UK because many of them could or did not dare to give a presentation in English. We wanted especially to give them the opportu-nity and encourage nurses from the different countries. Many times it took days by telephoning and e-mailing to reach colleagues all over Europe. And often when we thought that we had covered all the presentations and chairs and then we got the message that the nurse was not able for any kind of reason to manage it, but all the times, we found a way to for a replacement. The feed back we received and the results we noticed after the presentations and meetings were overwhelming. We heard from nurses who never had been to an international congress or who knew of the existence and possibility. We noticed also afterwards that nurses had been started with projects in their own centre or country which they heard during presentations and during the time they spent in between these meetings. Many friendships have been raised between nurses of different countries. The representatives of ZLB Behring often accompanied the nurses from countries where they did not speak English to translate the presentations.

But…….. The most important thing is that haemophilia patients will experience the benefits in advanced treatment and is this is mend where we work for! I am grateful to CSL Behring to continue these important meetings and has it is extended it now to a European Haemo-philia Nurses Network.And last but not least, I wish you all good luck with these important meetings, but keep in mind; your patients will need the benefits.

Warm regards to you all and good luck.

THE HISTORY OF THE EUROPEAN HAEMOPHILIANURSES CONGRESS, EHNC

ELS HAAN

Haemophilia nurse - Van Creveldkliniek, department of hematology, University Medical Center Utrecht - Netherlands

➜ To provide a forum for exchange of information and skills between haemophilia nurses working within Europe. This will be achieved by a European Nurses Committee working with ZLB Behring to:1. Plan a biannual symposium with the Members of the Committee and ZLB Behring personnel from the host country.2. 4 European haemophilia nurses who have English as their first or second language, 3 nurses from previous committee meeting to work with 1 nurse from host country.3. Role of committee to identify venue and dates of biannual symposium to plan a program in conjunc-tion with ZLB Behring

➜ To advice on speakers en content of programs and symposia. We decided to have no more than 50 participants to encourage easier contact and exchange between the nurses of the different countries.

AIMS AND OBJECTIVES