EBMT National Group Update

Posted on: 13 Feb 2014

Nurses National Groups
Summary of the 3rd Nurses Study Day in Innsbruck, Austria
In November 2013, the Austrian Nursing Group, has organized our 3rd Study Day for Nurses in Innsbruck, Austria. We had 70 participants; unfortunately some had to cancel due to bad weather. The topics were terminal care, aromatherapy, nutrition, care after discharge from the hospital and observation of patients. There was also a lot of time to do some important networking.

On the same day, the Austrian Nursing Group had a small meeting to discuss the next steps of the group. In 2014 there will be another Study Day. The organisation of this Study Days is running very well, so that we will find another new, additional challenge within the next year. The next meeting will be in March and there we will have a discussion to decide which new challenge this will be. All of the members are asked to bring along some ideas.

Meanwhile we got the results from the feedback from the Study Day and overall it was very successful. We are very satisfied about that.

Petra Augustin

East Forum stops activity
Dear colleagues,

After several years of active and successful work, the East Forum came to conclusion that because of technical and administrative reasons the East Forum stops its official activity in 1/2014. However, we will keep our contacts and promote mutual cooperation to ensure future cooperation within EBMT-NG and with other individual transplant centers within Europe. We also will be ready to keep the role of one of your “contact persons” to the EBMT-NG and will promote individual foreign centers to get into direct contact to the EBMT-NG, as well.

With best regards and in hope for fruitful cooperation

Samuel Vokurka and Eva Bystricka

From a UK perspective
It is with great sadness that the UK group have lost Louise McNamara and Tuula Rintala who have both stepped down from the committee, our thanks and best wishes for the future go to them from all of us. As with all things though time moves on and new faces take over. I am pleased to announce that Michelle Kenyon has become the new vice chair and John Murray the new chair of the UK group. We aim to continue the good work that our predecessors started.
As is common I am sure in many other countries money is becoming tighter. This has caused some great anxieties for us as sponsorship becomes more difficult to obtain and nurses find it increasingly difficult to attend meetings. The committee has therefore taken the large step to only have one national educational meeting a year. The next one will be in Bristol in November 2014, an agenda will be circulated following the main EBMT meeting in Milan in April. Any ideas thoughts will be gratefully accepted as this meeting is for your education.
The UK EBMT NAP group had another successful meeting, our 44th in November 2013 at the IET centre in Birmingham. This was very well attended and we had some excellent feedback from those in the audience. The presentations at this meeting were varied and encompassed some of the more pressing problems for nursing transplant patients in the UK.

The day started with the role of ECP in the management of the acute GvHD patient given by Dr Arun Alfred Consultant Haematologist at Rotherham hospital (the home of Dr Taylor leading ECP exponene). This is a tricky situation here as the funding for this procedure was originally based on chronic GvHD and it has taken a great deal of negotiation for some centres to now be able to offer this service to their patients. The UK photopheresis society with Dr Taylor as chair has been lobbying hard to put forward their agenda so that more patients can have access to this proceedure.

Dr Maria Gilleece from Leeds gave us an update on the patient and family day from London’s main EBMT meeting in April 2013. The event was evaluated extremely highly and as such there has been a call for another session this summer. Dr Gilleece and her team worked tirelessly to put on an educational day and are hoping that now that the ground work is in place a repeat will be just that bit easier.

A crowd pleaser is always food, and this time was no exception. Talking diets is always controversial as no two places, often in the same City consider all foods alike. A good debate ensued with some interesting comparrisons of what is on and off the banned menu. Nicola Scott dietician from Leeds kept us all on the straight and narrow.
The Anthony Nolan has undergone some huge changes in the last 6 months and is now more than just a repository of cells. Chiara DeBaise the new Head of patient experience show cased the new website and the patient stories held within it. I highly recommend that you tap into this valuable resource and encourage your patients to do likewise.

Back to basics is a mantra that all governments constantly tell us. This also rings true for nurses where basic care needs of patients should not be overlooked, this is essentially why we are all here, to look after and care for our families. Rachel Miller ward sister at the Oxford transplant unit discussed how important it is to engage regularly with patients to understand their needs. A regular sister ward round with the opportunity for patients to air the concerns created a fantastic environment and area where care can be improved through positive feedback. It was refreshing to see how something so simple as conversation can have such profound effects. It is indeed good to talk.

The Francis report has dominated the UK news for the best part of a year and I was pleased to welcome Caroline Shafar a solicitor along to explain the complicated results of this report. Whistleblowing is a term that often causes health care professionals to take a sharp in take of breath. However, it is our duty to highlight poor quality care either from an individual or from the organisation and feel that you will be supported in this.

Dr Jacqui Stringer from The Christie hospital gave an entertaining update on the EBMT research committee and its workings and hopefully has planted a few seeds that may develop into studies.

Ending the day was Marie Waller a trainee advanced nurse practitioner who told us all that in house education is a necessity and not something that should be left to chance. The setting up of study days appears to be fairly simple, the difficulty was trying to get people to attend regulaly enough that the whole thing does not collapse from inertia. Marie grabbed the proverbial bull by the horns and made this work for the team, a glowing example of a can do attitude.

John Murray

EBMT Swiss Nurses Working Group Study Day for Nurses and Allied Health Care Professionals, Zürich – November 23rd 2013
The 4th EBMT Swiss Nurses Working Group was held in Zürich, Switzerland, on the 23rd of November 2013, and took place at the University Hospital Zürich, Switzerland.

Specialist nursing education and training within the field of stem cell transplantation and haematology is promoted and provided by the EBMT Swiss Nurses Working Group.

We were thrilled that the Study Day was attended by 212 participants from 13 countries, the majority of which were from Switzerland, along with attendees from Austria, France, Germany, Ireland, Italy, the Netherlands, Romania, Slovenia, Israel, Sweden, Turkey and the United Kingdom.

The participants came from the various professional groups in haematological, oncological and stem cell transplantations wards and haematological polyclinics, such as physicians, nurses, nurses’ students, nursing assistants, doctors’ assistants, research scientists, FaGe, data managers, secretaries, together with patients and their relatives, patient advocates and representatives of pharmaceutical and medical companies.

One of the aims of the EBMT Swiss Nurses Working Group is;

“To improve and develop the quality of nursing care for patients and their families with a haemato-oncological disorder and/or are undergoing stem cell transplantation”.

The Study Day once again demonstrated that it is extremely important to expand the educational haematological knowledge among nurses and other allied health care professionals.

The speakers were well versed in their subject material and captured and kept the audience’s attention with relevant and up-to date information.

The Study Day started with presentations by physicians who presented Acute Leukaemia in Adults and Children.

The last presentation in the morning session discussed Pregnancy after Chemotherapy and Haematopoietic Stem Cell Transplantation.

Fertility and pregnancy were discussed by Prof. Jane Apperley, who emphasized that fertility should be taken into consideration at the time of diagnosis for those who wish to conceive. Advice for women will vary depending on the state of disease and disease response.

In the afternoon the Study Day continued with sessions on Sexuality and Sexual Function in Haematopoietic Stem Cell Transplant Patients.

Sexuality is still often a taboo topic among health care professionals who speak with adult patients, children and their parents.

The EBMT Swiss Nurses Working Group will start to work on an educational learning programme regarding Sexuality and Fertility so that health care professionals expand their knowledge and communication skills surrounding this topic.

Giora Sharf, CML patient and founder of the Israeli CML Patients Organization and co-founder of the CML Advocates Network, reported results on the Global CML Advocates Adherence Survey.

Those with low adherence perceive their quality of life to be affected, worry about the long term effects of treatment and have less understanding of the consequences of skipped doses.

Those with higher adherence were more satisfied with the information they received and also perceived their medical team members to be approachable. Recommendations coming from the study include the use of reminder tools, stronger patient education, focused attention on patients most at risk and working with health care professionals to help them play a stronger, supportive role in counselling patients about adherence.

More Information on “Adherence…” is available on the following link and hard copies of the booklets are available in English, French and Italian and can be ordered at erik.aerts@usz.ch


The last presentation was on Health and Health Prevention and the role that each individual has to keep you healthy.

In summary, the 4th EBMT Swiss Nurses Working Group 2013 demonstrated the needs for education of nurses and allied healthcare professionals through sharing information and best practices from all corners of Europe.
Special thanks to the speakers for sharing their knowledge and the Members of the EBMT Swiss Nurses Working Group for putting together an informative program.

We thank the organizations that helped providing unrestricted educational funding.
Without their support, this Study Day would not have been possible.

Yours sincerely,

Erik Aerts Alexandra Dziuban Susann Koch
Zürich Zürich Basel

On behalf of the Swiss EBMT Nurses Working Group

For Additional Information

EBMT Swiss Nurses Working Group
Study Day

Save the date!

An educational day for nurses and allied health professionals at the University Hospital Zürich

Saturday, November 08th 2014