EONS Magazine Spring/Summer 2015

N U R S I N G

A T

T H E

H E A R T

O F

P A T I E N T

C A R E

Spring/Summer 2015

Advocacy Keeping cancer on the political agenda

Personalised medicine and the education gap

Teamwork – as essential in advocacy as in daily practice

Nessa Childers

Denis Horgan

Richard Price

Contents Editor-in-Chief: Helen Oswald Executive Editor: Clair Watts Art Editor: Jason Harris Production Editor: Jim Boumelha

Spring/Summer 2015

EDITORIAL

3 A changing landscape

Birgitte Grube and Patrick Crombez

Medical Editor: Catherine Miller Editorial Assistant: Rudi Briké EONS Secretariat: haysmacintyre, 26 Red Lion Square London, WC1R 4AG, UK Phone: +32 (0)2 779 99 23 Fax: +32 (0)2 779 99 37 e-mail: eons.secretariat@cancernurse.eu Website: www.cancernurse.eu EONS acknowledges Novartis and Hoffmann-La Roche for their continued support of the Society as sustaining members.

Print run: 1000 copies.

Electronic version accessible to 23,000 EONS members.

Design and production: © 2015 HarrisDPI. www.harrisdpi.com

LATEST NEWS

4

Board Update

5

Invited speaker grants

6

It’s time to join the conversation

7

e-ESO: Education that’s free and fits your schedule

8

Education and training remain the bedrock for Portuguese nurses

10

Implementing Euro PEPs – Workshops help nurses put evidence into practice

12

Reigniting the passion for oncology nursing

14 European Cancer Congress 2015 – Reinforcing multidisciplinarity

ADVOCACY – MAKING OUR VOICE HEARD

15

The EONS Advocacy Working Group – An introduction

16

World Cancer Day: The developing role of cancer nurses

17

A stronger voice in Europe

19

Keeping cancer on the political agenda

20

Getting things done in the European Parliament

The views expressed herein are those of the authors

21

A new approach to rare cancers

and do not necessarily reflect the views of the

23

The challenge of recognition

company represented in advertisements is solely

24

Need to know: Personalised medicine and the education gap

responsible for the accuracy of information presented

26

Teamwork – as essential in advocacy as in daily practice

30

Upholding the rights of cancer patients

31

Engaging with leaders and decision makers globally

Printed by: Richline Graphics Ltd. www.richline.co.uk Cover Photograph: Design by Jason Harris Disclaimer

European Oncology Nursing Society. The agency/

in that advertisement.

The European Oncology Nursing Society (EONS) does not accept responsibility for the accuracy of any translated materials contained within this edition of the EONS Magazine. © 2015 European Oncology Nursing Society

Author profiles and references can be found for this edition of the magazine at www.cancernurse.eu/magazine

EDITORIAL

A changing landscape Guest Editorial - Birgitte Grube & Patrick Crombez Co-chairs of EONS Advocacy Working Group

A

s you will be aware in your daily practice, the work and role of the oncology nurse is changing fast, almost on a month-by-month basis.

New treatments are being introduced, new understanding of the disease itself and of the patient’s needs are developing, and the way we work as a member of a multidisciplinary team is evolving. The political agenda and the healthcare systems within which we work can be slow to respond to this changing landscape. That can give us a feeling that the bureaucracies and organisations that should be setting the pace are often a step behind.

This is where advocacy comes in.

Advocacy is the way we make sure that our voices are heard; that we ensure that the cancer structures we work within are responsive to the way the role of oncology nurses, and the needs of our patients, are moving forward. EONS sees this as an important part of its work. The Society works to represent its members both in the key European political bodies and at the grassroots level within our member countries.

This issue of the magazine provides an insight into the work that is being done at the top table in the European Parliament to give oncology nurses a stronger voice. It looks at how we keep cancer on the political agenda and use our influence to get things done. We

look at how teamwork within organisations such as ours, and with our partners, is essential if we are to have a strong impact on the debate and engage with leaders and decision makers around Europe and in the wider world, shaping and influencing the agenda. It is the EONS Advocacy Working Group, of which we are chairs, that drives this work forward on your behalf. You can find out more about what we do on page 15 of the magazine, and on the EONS website.

The rest of the magazine is packed with other interesting articles about EONS’ latest activities. We have a Board Update, which will give you a taste of the latest work that the Board has been doing; and there is also an introduction to the new invited speaker grants and who received the debut awards. Other articles focus on education and professional development: respectively highlighting the benefits of the e-ESO free courses, of attending an EONS Masterclass, and describing how EURO PEPs workshops have helped EONS members put evidence into practice. And, in an inspiring article on the Portuguese oncology society, we see how nurses from that country are still learning and developing their skills despite the current cold climate of austerity and cuts.

We wish you an enjoyable read and, as ever, invite you to get involved in all that EONS is doing!

3

Board Update Report by: Board Secretary, Mary Wells

At the annual meeting of EONS’ Executive Board, in Amsterdam, Board members reflected on the previous year’s work and planned for the year ahead.

The first day was spent assessing the strategic aim, set two years ago, to support cancer nursing organisations in developing countries. One of the most important achievements of this strategy has been the engagement of the new member society in Palestine. Priorities for 2015-17 were then considered.

These included focussing on enhancing the recognition and voice of cancer nursing across Europe – EONS’ involvement in the EC Expert Group on Cancer Control and the Quality Cancer Care Task Force will help with this (see pages 17-20) and building closer links with MEPs, to raise the profile of cancer nursing. The Board also discussed using the power of social media to increase visibility and disseminate information about the contribution that nurses make to cancer care (see opposite page). Some members of the Board are already very active on Twitter and

4

Facebook, and those who find this more challenging are recognising the need to embrace the benefits of new technology!

One of the most important duties of the Board each February is to review the budget for the following year. Treasurer Christina Lacerda and Executive Director Clair Watts led the Board through the complexities of the budget. This year will also see new Board elections to be held over the next few months. I will be leaving, along with Past-President, Birgitte Grube, as we will both complete our sixyear tenure of office in September 2015.

Planning for a change in the Board is always bittersweet – while it is always sad to see members stepping down, fresh eyes and energy brought by new members are vital to the dynamic work of EONS. An exciting challenge for the year ahead is the planning of EONS-10, which will be held next year in Dublin, Ireland.

In order to maintain our involvement with EONS, Birgitte and I will co-chair the Scientific Committee, with support from current President, Erik van Muilekom. We are looking forward to working with members of the Irish Association of Nurses in Oncology (IANO) as well as other National Society members, as we compile a programme of sessions to debate the innovative research and practice issues facing cancer nurses across Europe. While all this is going on, EONS staff are working hard to support the working groups, advertise this year’s grants and awards, and prepare for the applications from National Societies to host the 2015 Advisory Board meeting.

Watch this space to see where we will be in November!

Mary Wells is Professor of Cancer Nursing Research & Practice, NMAHP Research Unit, University of Stirling.

LATEST NEWS

Invited speaker grant – sharing knowledge across countries EONS offers a number of awards and grants to cancer nurses in

a keynote speaker at a multi-professional national conference,

Europe, among them the newly-launched Invited Speaker Grant.

Oncology Week, in Sweden, organised by the Swedish Oncology

National member societies, or special interest groups collaborating

Nursing Society and the Swedish Society of Oncology, on the

with EONS member societies, are eligible to apply. These grants

theme of ‘Multi professional collaboration for an equal cancer

could be used to cover travel and accommodation for speakers

care for everyone’. The title of her lecture was ‘Nurse-led cancer

presenting at any educational event within the scope of cancer

care – looking to the future’.

nursing with at least 50 expected participants during 2015.

These new grants are an opportunity to invite an international

The Invited Speaker Grant consists of two awards worth €1000 each.

speaker for an educational event, which can be done with the

After reviewing and judging the applications received for this

assistance of the working group. This year, a speaker is being

year’s award, two winners were selected by members of the

sought for the lymphoma clinical nurse specialist Masterclass in

EONS Education Working Group. Helen Mee from the Lymphoma

October 2015 in London, UK.

Association, part of the Cancer Nursing Partnership with United

Applications for the 2015 grant closed in February. Information

Kingdom Oncology Nursing Society (UKONS), is this year’s winner.

about the 2016 grant will be available when a new Call for

The second winner is Cecilia Olsson, President Elect for the

Applications is launched. For further information, see EONS web

Swedish Cancer Nurses Society.

page on upcoming EONS awards and grants at http://www.

Mary Wells from University of Stirling was invited last March as

cancernurse.eu/awardsgrants/index.html

It’s time to join the conversation When EONS launched its social media presence for a trial period in summer 2013, it was ahead of the curve. But two years on, as social media is used more widely within the healthcare sector, EONS’ social media presence is now an established part of its communications strategy, explains EONS’ social media manager Kate Griffin.

EONS has accounts with Facebook (www. facebook.com/cancernurseEU) and Twitter (www.twitter.com/cancernurseeu). Social media lets us boost awareness of member benefits such as events, grants, educational resources and this magazine you’re reading!

Social media represents a different way of engaging with members; it’s all done in real time.

So it’s great for sharing minor updates about the kind of dayto-day activity that

Kate Griffin might not make it into the magazine or newsletter. It’s also useful for reminders about deadlines.

In the past 12 months, our popularity on both social media channels has doubled. In spring 2014 our “likes” on Facebook and our Twitter follower count were both just over 200.

Now our Facebook “likes” have recently hit the coveted 500 mark, and our Twitter followers aren’t far behind, with 477 at the time of writing.

Conferences are an excellent opportunity for increasing social media engagement, and social media, particularly Twitter, is perfect for sharing conference updates.

There is already plenty

of activity around the hashtag for the European Cancer Congress; #ECC2015 is buzzing with reminders of key dates, information about scholarships, people who are already excited about going. If you’re planning to attend ECC 2015, why not join in? You can make an easy start by following us on @cancernurseeu and perhaps supporting us with a few retweets.

After that, perhaps you will be emboldened to share your own thoughts or even live-tweet a whole conference session for the benefit of people who can’t be there.

It’s time to join the conversation!

5

PUBB 210x270 ABC3 CW_20150331_Layout 1 31/03/15 16:34 Pagina 1

A BC 3 Bridging the Gap

Advanced Breast Cancer 5-7 November 2015

partner journal

THE

BREAST An Associate Journal of the Australasian Society for Breast Disease Affiliated with the European Society of Breast Cancer Specialists Official Journal of the Breast Centres Network

• Lisbon, Portugal

Third International Consensus Conference

dedicated media partner

Chairs: F. Cardoso, PT • L. Norton, US • E.P. Winer, US • A. Costa, IT/CH

RECEIVE UPDATES AT: WWW.ABC-LISBON.ORG Tweet, network and follow updates using #ABClisbon on Twitter and Facebook and join in the discussions leading up to ABC3 via our blog http://thecancerblog.net

The ABC3 guidelines will be developed by ESO and ESMO

The ABC3 conference and guidelines are endorsed by

The ABC3 conference is held with support from

under the auspices of

and endorsed by

LATEST NEWS

e-ESO: education that’s free and fits your schedule

Corinne Hall and Francesca Marangoni

Busy schedules and tight budgets can make it hard to access further education or attend conferences and meetings. In today’s technological era, can these two problems be overcome?

The increasing use of the Internet has made our world smaller and smaller: we communicate with people globally as if they were in the office next door, often building strong relationships with people we will never meet. As a result, our lives have become impersonal and lack in physical contact with others. However, this technological boom has overwhelming advantages and, though we may prefer faceto-face contact, using technology doesn’t mean that interaction is less, or less valuable.

Keeping health professionals up to date E-learning is just one of the many benefits that the cyber revolution has given us.

In 2008, the European School of Oncology (ESO) launched its own e-learning project with the motto ‘Learning to care’.

ESO designed a regular webcast format to keep health professionals in oncology up to date with the latest news and views in the world of cancer and, at the same time, give them the opportunity to interact from home or their workplace with an expert on a given subject.

Doctors and nurses can log into the e-ESO.net website on Thursday at 18:15 CET to view a live webcast starting with an expert making a short presentation on a ‘hot topic’ in the field of cancer.

Also taking part is a selected ‘discussant,’ who receives questions from participants in a live and interactive discussion with the ‘expert’.

High-quality programmes e-ESO programmes appeal to cancer professionals because they are free of charge and are held without commercial sponsorship. All that is required is to complete a simple free registration form.

To ensure that those who can’t view it live can still benefit, each session is recorded and remains available online.

What’s more, all e-ESO sessions are CME and ESMO-MORA accredited, meaning that the programme has been recognised for its high-quality value both from a scientific and didactic point of view. The CME certificate is electronically provided to all of those participants who correctly complete the multiple-choice test that is related to each session.

The e-ESO programme has been

acknowledged as a great success, with over 320 e-sessions on a variety of subjects delivered to over 7000 registered users from more than 130 countries.

They have become part of professionals’ calendars, as their slot is now regularly scheduled in diaries. Speakers often comment that they enjoy taking part because they find them more interactive than their usual presentations.

There is little doubt that e-learning is now increasingly viewed as a form of education that breaks the traditional barriers of communication, and not one that limits us to an impersonal way of life.

For further information on e-ESO sessions and the full programme, please visit www.e-ESO.net.

Francesca Marangoni is Managing Co-ordinator for e-ESO. fmarangoni@eso.net

7

Education and training remain the bedrock as Portuguese nurses face challenging times With the economies of Southern Europe still in turmoil, EONS member societies are under relentless pressure to find new ways to meet the needs of their members. Here Cristina Lacerda and Jorge Freitas, leaders of the Portuguese Oncology Nursing Association (AEOP), tell us about the challenges they face and their thoughts on the future.

8

PICTURE CREDIT: NAME OF PHOTO AGENCY

T

he 600 members of AEOP work at the oncology institutes of Porto, Lisbon and Coimbra, at university hospital oncology units and at smaller hospitals from Faro to Vila Real, including in Madeira and the Azores.

Jorge Freitas, AEOP’s vice-president, says their most important needs, as for their colleagues across Europe, relate to knowledge and training. He underlines the goal of AEOP as aiming to “make a difference in the cancer patient’s journey.”

“With this in mind, we develop activities in education and research that help improve professional training and increase the level of knowledge in this area. AEOP is also a forum for sharing, discussion and learning; our prevailing aim is ‘professional excellence’” he says.

To meet these ambitious goals, AEOP has created structured working groups in different areas (e.g. research, education and communication) and for different clinical practices, such as breast, lung, head and neck pathologies and sarcomas. Freitas explains, “This organisational model has proved extremely important because many nurses work in specialised units and in different branches of oncology, and cancer patients have special care needs.”

AEOP publishes a scientific journal every quarter,

The AEOP Board and other members of the AEOP family during their annual conference at the Curia Palace Hotel, Curia, Portugal. Jorge Freitas and Cristina Lacerda are pictured in the right of the front row.

LATEST NEWS

which attract some of the best papers in Portugal. It is distributed free to all its members, the nursing colleges and is also available online. The 27th edition is just out. Another communication tool is the Association’s website at www.aeop.net/ which Freitas describes as a ‘living room’ for oncology professionals, for AEOP’s members, and for the wider public. “Visitors to the site can find educational projects with a dual purpose: to train colleagues in specific areas of oncology; and to publish guidelines and educational materials for professionals and, in some areas, for the general public or for patients,” adds AEOP President Cristina Lacerda.

Fostering knowledge AEOP also publishes guidelines on the best clinical practice, starting from consensus obtained within working groups, constituted by colleagues who are experts in the specific area. Educational materials are translated into Portuguese, based on European guidelines, as well as educational and informative materials for the patients themselves.

Regarding research, AEOP takes advantage of its partnerships with nursing schools to develop training and to update professional expertise. Its reputation in this area is widely recognised and the resulting quality of care provided to patients has increased.

The Association collaborates regularly in national and international scientific events, and takes up every opportunity to exchange ideas, opinions and experience, such as partnerships with different specialities like hemato-oncology. Regarding European activities, as well as the presence of its President on EONS Board, there are Portuguese representatives in working groups who also participated in the scientific activities of the last European congress.

Current challenges for the profession These are challenging times for nurses in Portugal, however. Lacerda explains, “This is the result of the current socio-economic difficulties, of a dynamic society in permanent change, and of the uncertainty, increased longevity and increased incidence of cancer diseases and their treatment modalities, as well as the economic and financial impact and mortality associated with them. These constraints are felt by all nurses who work with cancer patients, regardless of their place of work.”

“In order to find the best solution to these problems, AEOP, in partnership with EONS, opens the door to its members, allowing them to participate in all activities and to have access to grants sponsored by this Society, raising the degree of knowledge among all European cancer nurses and thus improving the care provided in

our country,” she says. “Moreover, the Association has partnerships with several Portuguese medical societies, participating in their nursing programme during scientific meetings.”

AEOP also has a good relationship with the Order of Nurses and the College of Medical-Surgical Nursing, being present at congresses and scientific meetings.

Not least, the AEOP Annual Meeting features invited speakers – both from home and abroad – and promotes interaction between nurses from different generations and work contexts at national level.

The impact of austerity The austerity measures implemented by the government in Portugal have had a strong impact on the health sector, inflicting severe economic constraints in hospitals and oncology institutes. Lacerda stresses that “Cancer patients need a technical, political and socially concerted approach. By analysing only some variables – the increase in the unemployment rate, the constraint of health expenditures, the emigration of professionals (doctors, nurses) – we think that patients will have increased difficulties in their disease management.

Thus, the institutions and professionals must have the necessary flexibility to meet their needs.”

She also points out that the social and economic problems that patients and their families face in the current context represent a growing challenge for oncology nurses, with a greater need for active and effective multidisciplinary teams.

Despite these challenges, Lacerda has great hope that AEOP will achieve their targets, notably: ●● developing educational projects related to new practices in oncology ●● disseminating oncological news through the scientific community ●● developing research and promoting evidencebased practices ●● fostering scientific activities and partnerships with universities, national and international societies ●● increasing the awareness and recognition of the important role of the Portuguese nurses working in oncology.

“To bring this about,” she says, “it is necessary to maintain a body of dynamic members, as well as strategic partnerships, at both national and international level, in order to implement credible and viable growth policies.”

Cristina Lacerda and Jorge Freitas are respectively President and Vice-President of AEOP. (Cristina is also an EONS Board Member and current EONS Treasurer.)

9

Implementing Euro PEPs – Workshops help nurses put evidence into practice Euro PEPs (Putting Evidence into Practice) are a set of evidence-based practice interventions, designed to help nurses improve their use of research evidence in their clinical practice. Each one provides a concise summary of recent evidence as well as expert opinion. They have been translated into five European languages and can be downloaded free at http://www.cancernurse.eu/education/europeps.html.

Workshops on Euro PEPs have been held in Brussels over the last few years. Here, some who attended describe here their experiences of trying to bring about change when they returned to their working environment.

Beatrix Kirchhofer, Tumourbiology Centre, Freiburg, Germany: ‘A good opportunity’ We were provided with background information on the development of the PEPs and Euro PEPS, and were introduced to an implementation tool, PICO. When we returned to the Tumourbiology Centre in Freiburg, we started comparing the actual practice of treating lymphoedema at our hospital against what is recommended by EONS’ Euro PEPs. Our intention was to implement the lymphoedema PEP in Germany, so we arranged a multidisciplinary meeting with nurses, physicians and physiotherapists who do lymphatic drainage at our institution. In the beginning, there was some resistance from physicians and physiotherapists, because the treatment of lymphoedema is mainly their area. However, for nurses it is important to know the best evidence for

10

advising patients in the right way. After a while, the physiotherapists warmed to the project, and provided all their information material. Furthermore, they invited me to their patients’ consulting sessions.

The treatment of lymphoedema in the Tumourbiology Centre is already evidence based, so there is not a lot to change. However, up till now, nurses have not been very well informed about the therapy done at their institution. The next step will be to give the information to nurses in in-house seminars and information flyers.

In my opinion, the EONS project around the Euro PEPs is a good opportunity to develop evidence-based nursing in daily practice.

Marjana Bernot and Katarina Lokar, Institute of Oncology Ljubljana, Slovenia: ‘Making changes step by step’ Managing the side effects of cancer treatment is a basic issue in cancer nursing care and is becoming more and more complex. The PEP approach can help the practice of evidence-based cancer nursing and Euro PEPs are a good introduction for the European cancer nursing community. One of the main challenges in Slo-

venian cancer nursing is how to introduce evidence-based practice into cancer care, as nurses are still practising care that is largely based on traditional and experience-based nursing knowledge. There are different reasons for this including the knowledge gap in research skills, the lack of confidence and authority in the research arena, limitation in English proficiency, and lack of skills to research literature. There are also some organisational barriers and fear of change.

At the Institute of Oncology Ljubljana, Slovenia, we saw the Euro PEPs as the golden opportunity to improve our practice, to provide higher quality nursing care with better decisions, to provide nursing care based upon evidence and clinical expertise, and to effectively plan the prevention and treatment of side effects and symptoms – so we joined the project.

The second Euro PEPs workshop in Brussels in October 2013 was very useful.

We learned to “be persistent and make practice changes step by step but contin-

LATEST NEWS

The PEP resources give you the ability to think big, start small and build evidence-based patient care.

uously.” As a first step, we decided to start with something simple, far away from our oncologists’ interest – we chose radiodermatitis, a “forgotten” symptom. We recognised that this neglected and important aspect of radiotherapeutic treatment was perceived in very different

ways and treated with different practice approaches, so it was an excellent area for change.

However, right from the beginning obstacles started to emerge – all enthusiasm just vanished and we were behind with planned activities. Some arrangements were not made; the nurse who attended the workshop went on maternity leave; and “lack of time” became an obstacle. Nevertheless, the nursing manager still believed that it could be done. However, something interesting happened when the doctors got involved in the project. Although we introduced both the doctors and our pharmacists to the PEPs’ evidence, they did not accept or implement the results. They ranked some old traditional practices very high and could not say goodbye to them, for example the use of ‘gentian violet’. In the end, they decided to do their own testing and the results are still pending.

So, what can we learn from our experience and what are the results of our work?

We had the support of our nurse manager, but we now recognise that in future we must choose the symptom together with physicians and pharmacists from the beginning. We believe evidence-based practice is important for patient care and can empower nurses and their role. And, in the end, we managed to disseminate the information and resources of Euro PEPs to 50 nurses from different hospitals in Slovenia as part of a seminar in October 2014 organised by the Slovenian Oncology Nursing Society.

Johan De Munter, Ghent University Hospital Oncology Centre, Belgium: A fantastic tool!

This high-quality, intensive, two-day workshop gave us the opportunity to learn, change, exchange experiences and share perspectives. Soon afterwards, we were eager to start using the PEP tools, such as PICO, and decided to work on peripheral neuropathy, a common symptom in our daily nursing practice of haematology. We had no clear agreements about management guidelines for this symptom and no assessment tool available, and we also did not validate assessments, which occasionally resulted in conflicting results.

We started our project by creating a ‘mind map’, where we tried to bring together all the elements such as population, characteristics, stakeholders and current management of peripheral neuropathy. Implementing evidence-based guidelines normally takes a lot of time, but thanks to the PEP tool, we could give immediate feedback to all the stakeholders, thus saving time to implement the guidelines.

The implementation process was not always easy, as there are always “believers” and “non-believers”, and change is difficult. But despite all these arguments, we believe in the power of the PEP tools, because it has a strong evidence-based case. It gives you the ability to keep it simple and do a lot of work in a short time. The PEP resources can be used to plan patient care, education, quality improvement and research. It gives you the ability to think big, start small and build evidence-based patient care.

Thanks to EONS for creating the opportunity and this fantastic tool!

11

Reigniting the passion for oncology nursing

Lena Sharp, Birgitte Grube and Anita Margulies

T

his year’s Masterclass, from 7-12 March 2015, hit a record, both in terms of the numbers of nurses (28) and countries represented (15).

It started by mixing nurses and physicians in small groups for communication skills workshops held by Andrew Hoy and Anne Arber, in collaboration with professional actors.

Parallel to these workshops, introductory sessions were held discussing expectations and goals. In a third session, on team work, the focus was on multi-professional collaboration, professional communication and safety.

The nurses participated in clinical medical sessions, covering state-of-theart treatment of the different site-specific cancers. The nurses’ programme included

12

Once again EONS organised a successful Masterclass in oncology nursing in collaboration with the European School of Oncology (ESO). This was the eighth such Masterclass, and was held in the beautiful setting of the Wolfsberg Conference Centre, near Zurich, Switzerland. overviews on targeted therapies and radiotherapy, but also covered topics such as bone health, extravasations, radiodermatitis and sexuality.

All of the participants had sent in interesting patient cases, some of which were selected for presentation and discussion with the rest of the group. Very active participation on key issues was a highlight of the case studies.

New sessions this year included cultural differences in cancer care, clinical trials and problem-based learning, as well as discovering how to interpret research papers. There were more joint sessions with the physicians on important

LATEST NEWS

‘We learn best when reflecting on our experiences’ – Participant feedback After 13 years working in the oncology setting, the Masterclass has completely reignited my passion for oncology nursing. Thank you all.

Catriona Duggan, Ireland When someone gives you the opportunity to be part of a five-day course, every minute is valuable. You don’t want to miss a thing – coffee breaks were a tremendous opportunity for exchanging thoughts, meeting colleagues from around the world and creating new links for future collaboration.

However, the most important thing was the opportunity to develop my career as a clinical nurse specialist through the interactive presentations, followed by lively discussions, exposing me to practice care standards.

Nurit Schneider, Israel I was enriched by the educational lectures as well as meeting participants from all over Europe and sharing experience and identifying common concerns that impact upon oncology nursing practice. Through a supportive learning environment we were able to identify possible solutions to complex nursing problems. I questioned the restraints of my own practice and identified areas for change. My new-found knowledge and

enthusiasm has driven me to formulate plans to improve patient experience in my own practice area.

Michelle Lewington, UK

achieve all that I can in my career; to be the best that I can be and to help others to do likewise!

Mairead Lyons, Ireland

It was an honour to be selected to participate, as well as to meet other colleagues from different countries, and share my experience with them. I was very impressed with this event – the lectures were very effective, touched on real work and were rich in knowledge, and of course, the lecturers were confident and knowledgeable as well as good facilitators.

The subjects discussed gave me clues in my way of thinking, how to communicate, and how to be a role model. When I had a little time with my colleagues in the ward, I just wanted to discuss the take-home messages from the communication skills workshops. They found them fantastic and will use them as a basis to start changes in our services.

Omar Al Hawamdeh, Palestine

A great turning point for nurses and physicians, in order to believe shared care and knowledge will produce better outcomes for patients and their families.

Joao Duarte, UK

An experience of a lifetime, educationally and culturally. Great mentors, top class knowledge, beautiful venue, new friends. Inspiring, invigorating! Genuinely, this Masterclass has not only been beneficial for me academically but it also ignited a desire in me personally – to

The lectures were accessible, colourful, clear and precise. I learned the most sharing in small groups. I have heard a number of innovations to improve my approach to patients as well as in a team.

The Masterclass was one big positive experience for me and my organisation.

Ana Cizmanov, Slovenia For me, I valued the opportunity to reflect the very last day on what the Masterclass meant for each of us. It provided a very important closing. As we reflected on the goals with which we all arrived in Ermatingen and what we were actually taking back with us – that, to me, felt priceless.

I was inspired by what many said they had learnt, discovered or decided to do as a result of “having lived the Masterclass”. We learn best when reflecting on our experiences.

Iveta Nohavova, Czech republic

multi-professional topics, such as fertility and pregnancy, physical activity and cancer, and advanced nursing roles. Erik van Muilekom, Mary Wells and Daniel Kelly from the EONS Board joined for parts of the Masterclass to share their expertise.

The Masterclass finished with a learning test; the nurse with the highest score was Susana Pedro from Portugal.

Preliminary planning has already started for the next Masterclass in 2016 (12-17 March) so nurses are urged to make a note in their diaries. A call for applications will appear on the EONS website and in the newsletter.

13

European Cancer Congress 2015 – reinforcing multidisciplinarity EONS President-Elect Daniel Kelly unveils plans for the most important gathering of oncology professionals in Europe, to be held in Vienna this autumn, and urges nurses to register.

W

e are looking forward to ECC2015 this September and to seeing as many of you as possible in the beautiful city of Vienna. Planning for this year’s event started almost immediately after the last successful congress in Amsterdam in 2013.

Since then there have been meetings in Brussels of all the Track Chairs, where we were asked to present suggestions and to start the process of identifying some invited speakers.

Behind the scenes, colleagues from across Europe had also been asked to help suggest themes and speakers for our Nursing Track. They will also assist in reviewing the abstracts that are being submitted.

We will be addressing interesting topics in the Nursing Track, chosen to explore the relevance of complexity in cancer care today – ranging from patient safety, to managing older patients with co-morbidities, living with and beyond cancer,

14

the rising demand for care services, and weight changes in cancer patients. We will also be hearing from EONS award winners in our Society Session, when we will also explore innovations in cancer nursing. And of course, there will be the usual display of posters involving the latest developments in oncology nursing research. We are also planning some social events, where you will be able to network with colleagues, meet new people and learn from the experiences of others.

I urge as many nursing colleagues as possible to attend ECC2015 so you can learn from the latest research and celebrate the wonderful work that cancer nurses across Europe are engaged in.

We hope to welcome you to Vienna and ask you to ensure that you remember to register as Nursing Delegates, as this is very important to EONS. You can register now at http://www. europeancancercongress.org/Registration.

A DVO CAC Y

The EONS Advocacy Group: an introduction

Birgitte Grube and Patrick Crombez

EONS’ strategy is based on and should always follow the CARE strategy, relating to its four working groups: communication; advocacy; research and education. Advocacy is not always perhaps the most talked about, but it has an important role to play in EONS’ work.

Advocacy is about politics and making your voice heard in the right places. The EONS Advocacy Working Group’s overall strategy is to work for the recognition of oncology nursing at the EU and at national levels in the member countries. Recently it launched an initiative to intensify its lobbying effort (see pages 17-19). Together with the EONS Board, the group works to ensure the status of cancer nursing, access to appropriate education and safe working environments.

Advocacy work includes collaborations aimed at extending the reach of EONS, both locally and globally. Memoranda of Understanding (MoUs) are agreed between the Boards of other societies and EONS. EONS has set up cooperation agreements with several societies such as the European School of Oncology (ESO), the Oncology Nursing Society (ONS), the International Society of Nurses in Cancer Care (ISNCC), the Multinational Association of Supportive Care in Cancer (MASCC), the European Society for Blood and Marrow Transplantation (EBMT) and the Union for International Cancer Control (UICC).

These arrangements might include, for example, the joint development of congress sessions, mutual exchange of society materials (e.g. publications, advertising space, education tools), or the building of a collaborative project in an area of shared mutual interest.

Advocacy work is not always straightforward, so it is important that the group always prioritises its work and remains focused on what it would like to bring into the political arena, in particular the

needs of cancer patients and the work of cancer nurses.

The Advocacy Working Group has members from all over Europe. These members are not expected to have a specific background, just an interest in politics and how to lobby and influence to get EONS’ voice heard.

The working group’s members are: Patrick Crombez, EONS Board Member (Chair), Belgium Birgitte Grube, EONS Board Member

(Chair), Denmark Françoise Charnay-Sonnek, France Per Fessé, Sweden Katarina Lokar, Slovenia Ineke Lokker, The Netherlands Sidsel Dragsbæk Holm, Denmark Petra Riemer-Hommel, Germany Paul Trevatt, EONS Board Member, UK (Communication Working Group).

Membership of the group lasts for two years and may be renewed twice, allowing a total of six years of service.

The objectives of the Advocacy Working Group are to: ●● Develop an EONS regulatory/policy strategy; prioritising activities that support the EONS strategy. ●● Represent the views of cancer nurses in the European policy/regulatory arena. ●● Engage with other NGOs, governments, etc., in a prioritised manner (stakeholder relationship management plan). ●● Work together with stakeholders on relevant policy/regulatory issues that link to the EONS strategy. ●● Develop EONS’ position statements and opinions in areas that support the EONS strategy. ●● Work in close partnership with the Communication Working Group, looking at how the cancer nurse voice is communicated at a strategic and policy level and how EONS represents itself, its work, and its members visually. Particular attention will be paid to how the membership voice is listened to and heard.

Members who have an interest in joining the Advocacy Working Group or learning more about its work are invited to contact the EONS Projects Manager, Mariska Mooijekind, at http://www.cancernurse.eu/about_eons/contact_eons.html.

15

World Cancer Day 2015: The developing role of cancer nurses EONS President Erik van Muilekom and Past-President Birgitte Grube attended the Union for International Cancer Control (UICC) conference in Australia at the end of 2014.

Birgitte Grube

At a session organised by EONS bringing together cancer nurses from the International Society of Nurses in Cancer Care hailing from Australia, the US, Canada and Asia, delegates discussed how cancer nursing is evolving throughout the world – from the emerging models of care to the most up-to-date developments in the workforce, such as registered nurse vs advanced practice nurse. The discussion also included changes in the scope of practice and how each society/ country/area is coping with the implementation of interprofessional models of care, while maintaining the specialised oncology nurse role.

Each society discussed the challenges it faced and highlighted successful outcomes. EONS focused in particular on advanced cancer nursing in Europe and on the benefits of being part of a European organisation while developing a career and dealing with challenges.

During the UICC, cancer nurses from all over the world decided to mark World Cancer Day 2015 (4 February 2015), by developing a new position statement and asked the EONS Presidents to draft it, a task started on the flight back home and finalised after many consultations.

16

Position statement: ‘...Cancer nurses must be valued at all levels of the healthcare and political system.’

Nurses play an important role in addressing the health priorities of societies around the world. The World Health Organization (WHO) estimates that annual cancer cases will rise from 14 million in 2012 to 22 million in 2032. The growing demand for cancer care, from prevention to palliative care, along with rapidly changing healthcare systems, provides opportunities for cancer nurses to play a pivotal and increasingly important role in delivering high-quality, safe, effective and efficient healthcare to people affected by, or at risk from, cancer.

As the largest group of healthcare providers globally, in most countries around the world, nurses are the backbone of the healthcare delivery system.

High quality care across the cancer continuum requires nurses to be properly educated in order to gain knowledge, skills, and competencies unique to cancer care. Cancer content needs to be integral to the basic curriculum, along with opportunities for specialisation at various post-graduate levels. In a rapidly changing healthcare environment, opportunities for continuing education will ensure that nurses remain current in best evidence-based practices. It is pivotal to include education and research in cancer nursing as a political agenda priority.

The Asian Oncology Nursing Society (AONS), the Canadian Association of Nurses in Oncology (CANO/ ACIO), the Cancer Nurses Society of Australia (CNSA), the European Oncology Nursing Society (EONS), the International Society of Nurses in Cancer Care (ISNCC), and the Oncology Nursing Society (ONS), representing the oncology nurses across the globe, agree that: Cancer care must be: ●● person-centred, ●● evidence-based, informed by research, ●● delivered in a systematic manner ●● delivered in a quality practice environment, and ●● meet society’s needs.

Cancer nursing education must be based on standardised, evidence-based curricula, adapted to meet each country’s needs, and based on lifelong learning.

Policies must be in place to ensure that the nursing workforce is prepared to effectively provide care in a manner that promotes positive patient, system, and societal outcomes, be regulated, and sustainable.

Internationally, the contribution of cancer nurses must be valued at all levels of the healthcare and political system. Failure to do so will have a detrimental impact globally.

A DVO CAC Y

A stronger voice in Europe EONS is finding its voice in Europe through participating in two newly-launched, Europe-wide groups. Paul Trevatt, chair of EONS’ Communications Working Group, has joined the EU Expert Group on Cancer Control, and Andreas Charalambous, also on the EONS Board, and a member of its education and research working groups, joined ECCO’s Quality Cancer Care

If EONS’ 32 national societies were to be asked about its education and research programme, masterclasses and grants, they would have a clear idea about the depth and range of what is on offer. They would perhaps be less familiar with aspects of EONS’ political leadership and the role that cancer nursing advocacy plays across Europe, in policy and strategy, at the highest level.

Paul Trevatt recognises how important it is for EONS to have a voice at the top table of European health decision makers and willingly volunteered to represent the society on the EU Expert Group on Cancer Control when the opportunity arose. For many years, as a nurse and an experienced EONS Board member, Trevatt has had a strong and passionate interest in issues around cancer inequalities and how they might be addressed: health inequalities in Europe go beyond general perceptions and are now proven by hard data. New and more powerful approaches need to be developed to overcome them.

In the summer of 2014, an EU Expert Group on Cancer Control was established by a commission decision. The expert group was comprised of member states, patients’ organisations, European scientific societies and professional societies who were selected to review aspects of cancer control including prevention, screening, timely diagnosis and access to appropriate therapies and models of care.

The importance of cancer control in Europe cannot be overemphasised says

Trevatt, pointing to the statistics. “There were an estimated 3.45 million new cases of cancer (excluding non-melanoma skin cancer) and 1.75 million deaths from cancer in Europe in 2012. Cancer is the second most common cause of death in the EU after cardiovascular disease.”

A particular concern, he says, is the inequalities in cancer management across the member states, from prevention to detection to cancer care. “For instance, the risk of dying from cervical cancer is five times higher in the worst-performing European states than in the best.”

“It is extremely important that where there are European meetings on policy, strategy and cancer management, EONS not only has a voice, but a seat from where it can communicate expert knowledge, views and opinions on behalf of its members,” says Trevatt. “Nurses are the largest part of the European healthcare workforce and have an essential part to play in policy conversations about cancer control and care.”

ADDRESSING THE INEQUALITIES Two meetings of the EU Expert Group have already been held: in Milan, in September 2014, and Luxemburg in March 2015. Following the autumn meeting, the 4th version of the European Code against Cancer was published. “The code sets out, in a straightforward and accessible way, the risk factors that may cause cancer and the different things individuals and communities can do to reduce risk,” Trevatt

JASON HARRIS

Task Force. They speak here to Jim Boumelha.

Paul Trevatt

says. (You can read the code at http://cancer-code-europe.iarc.fr/index.php/en/) Describing the strength of the EU Expert Group on Cancer Control, he explains, “Its collective membership and the idea of the whole being greater than the sum of its parts is crucial. As a platform, one of its strengths is in bringing together different member states, professional organisations, scientific groups and patient associations. For EONS, there is a natural progression in working more closely with the different patient organisations

17

CORE INDICATORS FOR QUALITY CANCER CARE EONS Board Member Andreas Charalambous agrees that a very active cancer nursing voice is essential to try to influence how policy is developed and implemented. When ECCO (European CanCer Organisation), the platform for the Euro-

JASON HARRIS

Andreas Charalambous

18

pean community of cancer professionals, set up a task force, he saw it as a great opportunity for cancer nurses to be heard and seen, and as a chance to make a difference. He joined its first meeting last November.

The task force was first called the ‘Cancer Excellence Task Force’, but as it became evident that quality could not easily be quantified it was renamed, ‘Quality Cancer Care Task Force’; but the aim was the same.

According to Charalambous, “There are throughout Europe several independent and unsynchronised quality cancer care initiatives. What ECCO is attempting, is to put all these initiatives under one roof and to regulate, in a way, the development of common quality indicators for the participating members. The shape of such shared indicators will facilitate their implementation across the European countries and ensure a common quality care ‘language’ around Europe.”

He explains how the first step by ECCO was to circulate a questionnaire among all founding members, and members of ECCO in general, asking them to identify what they perceive as quality indicators within cancer care, what strategies are employed to achieve these components, and what tactics they use to promote quality cancer care.

“Based on this questionnaire, we identified six major components of high-quality cancer care,” Charalambous explains, “This includes engaging patients; an articulate and adequately trained and coordinated workforce; evidence-based cancer care; information technology systems for learning about cancer care; translational evidence into practice; and accessible and affordable cancer care.”

The main role of the task force is to identify and certify those indicators.

WWW.SCIENCEDIRECT.COM

and strengthening collaborative working between European patient advocacy/lay member groups and the European cancer nursing community.”

As chair of the Communication Working Group (one of EONS’ four ‘CARE’ strategic groups), Paul is naturally optimistic about the Expert Group on Cancer Control and what it is able to deliver: “As an EONS Board member, I am committed to the idea of the European community driving forward change around cancer control and management. I believe that we are stronger collectively than individually, and that we have a duty of care to help support countries and member states whose cancer outcomes are poorer than others. Cancer is a terrifying disease of inequalities. The group is trying to address that.”

Age-standardised rates for all cancers excluding non-melanoma skin cancers in Europe 2012.

Charalambous describes how two words kept cropping up in their discussions – certification and accreditation. “We are not interested in accrediting, meaning we are not interesting in checking whether these indicators would be applied in practice,” he says, “We are mostly interested in identifying them and having them adopted by the members.”

Charalambous says that the work of the task force is still in its infancy as, with more than 200 recorded kinds of cancer, it would be impossible to adopt guidelines for them all at once. He maps out the work step by step: “First, we will set out to identify and prioritise which cancer type we should emphasise – as a first step, we will tackle breast and prostate cancer, and as some people have done some work before us, for example

A DVO CAC Y

EUSOMA for breast and EAU for prostate, we will try to bring everything together. These are our two priorities.

We will then deal with other high-prevalence cancer types such as colorectal cancer. Our next step is to bring these together at another meeting,” he adds.

He also recognises the work to be undertaken by other subgroups that will select all these indicators and produce a joint paper. As all cancer plans are not the same, he sees the main aim would be to produce core indicators that member states can follow in real life (that is, reflected in the realities of the clinical practice), rather than some kind of ideal.

Charalambous, like Trevatt, is keen to point out the importance of EONS’ role in representing the voice of cancer nursing. He sees this as chiming with the main aim of the Quality Cancer Care Task

Force, which is to implement multidisciplinary indicators. His presence within the taskforce, he says, is in essence to promote EONS’ objectives, putting nursing at the core of the care provided to patients, a strategic position that allows the nurse to shape the developments in the healthcare arena.

Developments in the work of the two groups will be reported back to EONS Board meetings and to the membership at large through both ECCO and annual events such as the Advisory Council.

EUROPE-WIDE GROUPS The EU Expert Group on Cancer Control and the ECCO Quality Cancer Care Task Force are the two Europe-wide groups where EONS represents the voice of cancer nursing, and is striving to ensure that nurses are recognised as a specialist workforce.

sor at the Cyprus University of Technology, where he teaches oncology and palliative care. He is also an Associate Professor at the University of Turku, in Fin-

Paul Trevatt has been a cancer nurse for the last

land. His main research interest is in supportive care

22 years. His specific interest is working in the area of

and quality care, and he is also interested in comple-

cancer and inequalities, and his current role is clini-

mentary and integrative therapies. He is the founder

cal network lead for end-of-life care. He has been on

and the current President of the Cyprus Oncol-

the EONS Board since September 2011.

ogy Nursing Society. He has been an EONS Board

Andreas Charalambous works as Assistant Profes-

Member since 2013.

Keeping cancer on the political agenda As Vice-president of MEPs Against Cancer in the European Parliament, Nessa Childers has been actively involved in supporting public health and promoting oncology issues.

Nessa Childers MEP

Public health has been one of my key priorities since my first mandate, starting in 2009. I feel very passionate about this policy area and, in a period when public services across the EU are under serious strain from budgetary cuts, I work with like-minded colleagues in the European Parliament to prioritise access to affordable, good quality services for our citizens, particularly healthcare which also depends, in no mean part, on decent working conditions for healthcare workers.

More specifically, in the field of oncology, I have continuously advocated for

stronger policies to fight against cancer. I am a member and Vice-president of MEPs Against Cancer, where I work with other elected representatives to promote cancer prevention and reduce the mortality rate caused by cancer diseases.

At the end of April, together with a group of cross-party MEPs, we launched with the support of EUROPA DONNA a Written Declaration on the fight against breast cancer in the European Union [See article on page 20]. We are hopeful that, with strong support from the European Parliament, we will take this declaration forward to the Council of the European Union and the European Commission and urge the implementation of nationwide mammography screenings across the EU so as to reduce the mortality rate of breast

cancer patients.

I am also working closely with the European Public Health Alliance (EPHA) – an organisation which advocates for better health in Europe. On 5 May, I chaired at the European Parliament a seminar alongside EPHA and Health Workers 4 All on ‘Mobility of Health Professionals in the EU’, which brought together experts, policy makers and MEPs to discuss how to address the critical situation of the health workforce in peripheral EU countries currently losing workers to countries offering better conditions, and how to balance this against professional mobility rights.

Nessa Childers MEP is an Irish politician who has been a Member of the European Parliament (MEP) since 2009.

19

SHUTTERSTOCK

Getting things done in the European Parliament – A new written declaration on breast cancer A written declaration on the Fight Against Breast Cancer in the European Union co-authored by 10 MEPs and backed by EUROPA DONNA – The European Breast Cancer Coalition – was recently released at the opening of the European Parliament plenary session in Strasbourg. It calls for the implementation of measures across Europe to battle this disease, which is the leading cause of death in European women aged 35 to 59, and it emphasises the needs of women with metastatic breast cancer.

Susan Knox, EUROPA DONNA Executive Director, said: “This is our call to all MEPs in all 28 member states to sign this Declaration. This Written Declaration serves as a reminder to MEPs, new and old, of the need to implement the European Resolutions on Breast Cancer and the European Guidelines for Quality Assurance in Breast Cancer Screening and Diag-

20

nosis (EU guidelines) which we are striving to have implemented Europe-wide,” The submission of the Declaration is an initiative of MEP Nessa Childers (Ireland) [See profile of Nessa on previous page] with co-signatories MEPs Simona Bonafè (Italy), Anna Záborská (Slovakia), Lidia Joanna Geringer de Oedenberg (Poland), Françoise Grossetête (France), Marisa Matias (Portugal), Emma McClarkin (UK), Biljana Borzan (Croatia), Alojz Peterle (Slovenia) and Miriam Dalli (Malta). For the Written Declaration to be adopted a majority of MEPs must sign it before 27 July 2015.

Every year 367,090 women in the European Union are diagnosed with breast cancer and 91,495 women die of the disease. The lifetime risk of developing breast cancer for women in the EU-28 is 1 in 8. The Declaration therefore calls for: ●● Member States to implement nationwide breast screening, in accordance

with EU guidelines States to provide multidisciplinary specialist breast units (SBUs) in accordance with EU guidelines by the 2016 deadline ●● Member States to ensure that people with metastatic breast cancer have access to, and are treated in, an SBU and that their ongoing needs for care and psychosocial services are co-ordinated and supported by the SBU, as per EU guidelines ●● The European Commission Initiative on Breast Cancer (ECIBC) project to deliver an accreditation protocol for breast cancer services by 2016; this protocol must ensure that mammography screening programmes and SBUs meet the requirements of the current EU guidelines and of the updated version of the EU guidelines, to be undertaken by the ECIBC in 2015. ●● Member

A DVO CAC Y

A new approach to rare cancers Over four million people in the European Union are living with a rare cancer. These patients face particular challenges. A Rare Cancers Europe consensus document is putting their needs on the European policy agenda.

Jackie Partarrieu, Rare Cancers Europe

D

ifficulties faced by rare cancer patients include late or incorrect diagnosis, inappropriate or unavailable treatment, lack of information, scarcity of registries and limited quality of clinical trials, due to the small number of patients involved and the lack of expertise in rare cancers in the community.1 Despite the rarity of each of the 198 rare cancers known to date,2 taken together, they represent about 20% of all cancer cases, including all cancers in children.

Rare Cancers Europe,3 a multi stakeholder initiative dedicated to putting rare cancers firmly on the European policy agenda, has been busy trying to create awareness of the plight facing rare cancer patients.

Developing new methodologies One of the areas where Rare Cancers Europe is advocating for change is for a greater sense of urgency about developing treatments and bringing them as soon as possible to patients with rare cancers. To accomplish this, new methodologies need to be applied to clinical studies in rare cancers. Current methodologies and regulations4 for clinical trials require the benefit of new treatments to be proven in a large number of patients.

Given the inherently low numbers of rare cancer patients, this is not possible. The risk of not building enough evidence to gain approval of new agents and the high cost of small trials may discourage industry from developing drugs for most rare cancers.

An important consensus paper5 is now calling on both the community of researchers and European

authorities to address research methodologies and regulatory criteria that limit rare cancer patients’ access to new therapies. This paper was also presented at a meeting with the European Medicines Agency (EMA).

“Rare cancer patients should not have to wait for their diagnosis or for possible treatment,” says Anita Margulies, oncology nurse in Zurich and co-chair of the EONS Education Working Group. “A cancer diagnosis is already distressing. Being diagnosed with a rare cancer and then being told there is no approved treatment for their condition is even worse. The Rare Cancers Europe consensus paper calls, among other things, for rare cancer patients to be allowed earlier access to promising experimental drugs. Of course, access to these drugs should be harmonised across Europe and supervised by specialised healthcare professionals.”

Rare Cancers Europe members pose by the RCE banner (patients, doctors, epidemiologist)

Roadmap for a new approach The Rare Cancers Europe consensus document states that new approaches to collect evidence are required for rare cancer studies.

“Regulatory decisions about rare cancer treatments try to avoid risk for many reasons, but patients with a

21

rare cancer will often agree to these risks, in order to receive some new treatment which may be their only hope. Even if not all wishes can be granted, we must listen more carefully to what patients and their families want and need,” explains Margulies.

The consensus paper addresses four major issues: ●● Clinical decision-making in rare cancers: Whilst decision-making in rare cancers should be rational, as for other conditions, patients’ attitudes towards “risk” should be taken into consideration. Regulatory agencies and local health systems should avoid discriminating against patients with rare cancers by allowing a higher degree of uncertainty. Innovative approaches should be encouraged, making use of all available knowledge (not only randomised clinical trials), in order to collect the best evidence. ●● Study design in rare cancers: Large trials are not feasible in rare cancers. Low power randomised clinical trials, “adaptive” trials, and the like, should be considered. Research on biomarkers should be inherent to research on new drugs. Bayesian approaches6 allow gathering of information from a number of sources and can consider all available evidence. The availability of electronic patient records, which allow measuring the effectiveness of treatments via patient reported outcomes in real world conditions, is a great opportunity, though again their use must take place in a methodologically innovative fashion. ●● Surrogate endpoints in rare cancers (such as PFS and TR) could replace clinical endpoints especially when available evidence needs to be brought to the patient’s bedside, to compensate for its possible limitations. New treatments could be used temporarily, under the assumption that the surrogate endpoint is valid, while waiting for final results. ●● Critical organisational aspects of clinical research in rare cancers: Reference Networks are needed in Europe, involving Centres of Expertise, to improve the quality of care for rare cancers. Patients should be able to easily access information about ongoing trials and be encouraged to participate in them. While data protection is important, patients should have the right to donate their clinical data and tissues for research by giving a “one-time” (withdrawable) enduring consent for their use. More cancer registries are needed. Multidisciplinary, national, international and even global collaboration is vital to assess the value of new treatment strategies. Regulatory obstacles to global investigator-driven collaborations and sharing of databases should be overcome.

22

“Rare cancer patients who participate in clinical trials will need additional support from healthcare professionals,” says Margulies. “Because of the large amount of information, the informed consent process and the uncertainties, the decision to participate (or not) in a trial may be overwhelming for both patients and their caregivers. Nurses are in a prime position to help by providing correct information and psychosocial support. This, in turn, means oncology nurses should be empowered to help with the follow-up and gathering of information from new treatments. In my experience, rare cancer patients are often willing to tolerate a higher uncertainty and take risks in the hope that effective new therapies will be discovered.”

Sharing information and experience Multidisciplinary collaboration is essential in oncology and even more so in the treatment of rare cancers.

“As the rare cancer community is looking to organise research and care through European Reference Networks, it is important for nurses to become involved in suggesting the best pathways of care for rare cancer patients. If such patients are frequently treated at a clinic, the nurses involved in patient care should be offered solid background information about rare cancers and about clinical trials, through continuing education courses, as better education definitely affects outcomes.7 Also, more funded nursing research projects and more nurse involvement in multidisciplinary research is very necessary and long overdue. Seeing the numbers of rare cancers, a special platform for sharing information and experiences on the specific needs of specific rare cancer patients would certainly help consolidate dissemination of knowledge about the care issues for these patients,”concludes Margulies.

Rare Cancers Europe have also published an advocacy tool kit http://www. rarecancerseurope.org/ Patient-Advocacy-Toolkit Details of the references cited in this article can be accessed at www.cancernurse.eu/ magazine

‘Rare Cancers: Exploiting the potential of European Reference Networks’, March 2015, Brussels.

Left, Alojz Peterle MEP (EPP, Slovenia).

Right, Dr Paolo G. Casali, Chair of Rare Cancers Europe.

A DVO CAC Y

The challenge of recognition

Patrick Crombez and Birgitte Grube

In recent years, oncology nursing practice has changed dramatically. There is now an urgent need for oncology nursing to be recognised as a specialty at national and European levels.

Cancer care is increasingly complex and requires an understanding of multiple physiological and psychological responses to the disease process and multiple treatment modalities. Oncology nurses scientifically and intuitively know that process is as important as outcome.

A major shift in the paradigm of cancer treatment is the emergence of targeted therapies, which induce a potential shift in survivorship and generate an array of new symptoms, necessitating new management strategies.1 As these treatments are mostly given orally in an outpatient setting, and especially in elderly patients with polypharmacy due to comorbidities, the issue of adherence to treatment becomes a major concern for oncology nurses.

Multimodality treatment will cause new and multiple concurrent symptoms (symptom clusters) and oncology nurses will need to explore and understand the complex symptom experience on a scientific basis.

Culture concerns The broad scope of oncology nursing research and the implementation of evidence-based practice must contribute to the development of excellence and high quality of care. The use of research evidence along with clinical expertise and patient prefer-

ences also includes the need to be sensitive to cultural concerns. Patients’ cultural representations and beliefs contribute to how they perceive and deal with illness, especially with chronic diseases such as cancer.

The development of culturally competent cancer care is essential and encompasses being mindful, respectful and, whenever possible, accommodating, to the norms of the culture in which the patient lives. This can become particularly sensitive during end-of-life care.

Other major roles for cancer nurses in the future are related to issues of development of integrative oncology and longterm cancer survivors; a group of patients which will continue to grow in the future.

Although evidence-based guidelines exist for childhood cancer survivors, not much is known about the late effects on and needs of adult cancer survivors.

These are just some examples to illustrate the importance of recognising oncology nursing as a specialty on the European level; a main objective for the Advocacy Working Group of EONS. Oncology nurses in Europe often lead the development of cancer nursing as a clinical specialty by sharing skills and knowledge. However, a postal survey of the national members of EONS in 2001, involving 22 countries, and the discussion of

the issue of recognition in a workshop during EONS-9 last year, demonstrated a great variety of competencies, education, and professional status of recognition between and even within European countries.

Lobbying initiatives One way to respond to this diversity is the initiative, launched by EONS’ Advocacy Working Group, to obtain the recognition of oncology nursing as a specialty on the European level. A position paper on the future roles of oncology nurses is now being finalised and will be published widely. There is also a close collaboration with ECCO and ESNO (European Specialist Nurses Organisations) on this issue, which was on the agenda of the EONS’ Advisory Council meeting last November. The next phase will be to lobby the EU Commission and the European Parliament.

In conclusion, it is evident that no one is more qualified to chart cancer nurses’ future direction than they are themselves – they are responsible for that direction and must assume the leadership necessary to achieve the goal of recognition of oncology nursing as a specialty.

Patrick Crombez and Birgitte Grube are co-chairs of EONS Advocacy Working Group.

23

Need to know: Personalised medicine and the education gap As oncology changes fast, with exciting new developments in personalised medicine, the nurses and doctors in the frontline treating Europe’s patients need a great degree of upskilling to keep pace with science.

Denis Horgan

M

any patients find nurses more approachable than doctors and rely on them for information. Yet, the true potential of this new science – built around genetic profiling, which is becoming less expensive all the time, and individual DNA sequencing – will never be fully realised without the knowledge and understanding to exploit it.

While there is much excitement at the advances being made, especially in oncology, there are many barriers to implementing personalised medicine. These include access to clinical trials, cross-border treatment when necessary, as well as questions surrounding the collection, storage and uses of ‘Big Data’. Another barrier is the clear and urgent need for healthcare professionals to have better tools to treat their patients while fostering a better understanding of their needs.

EDUCATING NURSES AND DOCTORS The modern patient wants to be informed in a transparent, unpatronising and clear way about his or her options, and have an input into the decisionmaking process with regard to treatment options, taking into account lifestyle and other factors.

On top of educated interaction with their patients, there is a need for healthcare professionals to interact with industry by giving feedback on how well (or

24

poorly) a treatment or medicine acts in real situations.

The education of nurses, doctors and other healthcare professionals is an important issue. A great degree of ‘upskilling’ is already required and, to keep pace with the science, this must be ongoing.

Stakeholders need to find a way to achieve this together – with agreed standards across the board so that no patient is denied a suitable, virtually tailormade treatment, because professionals in charge of the diagnosis and treatment lack knowledge or understanding.

Given the advances in personalised medicine in recent years, there is now a need to reform how healthcare is delivered to the technology-aware patient. A key partner in tackling this is the healthcare community – very much including nurses – and one way to achieve the goal is through increased EU-wide investment in education and training.

With the cost of DNA sequencing having dropped dramatically, the field of oncology has been a big winner. Joining up the dots between the possibilities offered by genomic advances and real-world patient care is a challenge, but one that Europe must meet.

Nurses will play a key role in making personalised medicine a reality rather than merely a dream.

A DVO CAC Y

Health is clearly all about patients and potential patients. Each healthcare system within the EU’s 28 countries features the coming together of one group in need of diagnosis and/or treatment and another, again very much including nurses, entrusted to deliver it.

This trust is based on a blend of technical competence and service orientation, steered by ethical commitment and social accountability, which forms the essence of reliable and professional healthcare.

Developing such a blend requires lengthy education and a substantial investment by policymakers and society. Yet, the context, content and conditions in which we need to educate health professionals are rapidly changing and need to be constantly updated and reviewed.

Joint Action on health This modern-day shift has already been noted by the European Commission, whose agenda includes a Joint Action on Health Workforce and Planning (http://www. euhwforce.eu). This Joint Action not only addresses the future capacity of the health workforce but also aims to modernise its skills and competences.

There is certainly a need to develop shared and/ or overlapping guidelines for this exciting new era of healthcare in order to make the most of the

recent explosion in technology. This will inevitably necessitate the creation of a platform designed to verify, assess and access information relating to new treatments and technology.

One Brussels-based organisation, the European Alliance for Personalised Medicine (EAPM), has, through its multi-stakeholder membership, which the oncology nursing community have supported since its creation, called for action at EU level, saying: “By 2020, the EU should support the development of a Europe-wide education and training of healthcare professionals’ curriculum for the personalised medicine era, by committing to this in 2015. The EU should subsequently facilitate the development of an Education and Training Strategy for Healthcare Professionals in Personalised Medicine.”

Should this come to pass – and it surely must – it will offer a springboard for nurses and other healthcare professionals to provide the right treatment to the right patient at the right time, thus improving outcomes and delivering the best healthcare possible to all of Europe’s patients, and potential patients, now and well into the future.

Denis Horgan is Executive Director of the European Alliance for Personalised Medicine.

Reaching out to the wider nursing community EONS’ philosophy is to meet the needs of all nurses working with cancer patients. However, better connections are needed with nurses working outside oncology. EONS’ Advocacy Working Group has come up with a plan.

When examining this issue, one question that arose was whether the term “cancer nursing” is preferable to “oncology nursing” or would this just be playing with words? The Advocacy Working Group sees this as a communications issue: it is important to clearly communicate who is included as part of the community of EONS, including on the home page of our website. The working group suggests having more visible communications to non-oncology nurses and has set up an Advocacy Task Group, which will work with the Communication Working Group to achieve this. The message should however be delivered without losing the specialised focus, as this could mean that the Society loses voice and power. EONS recognition is so important for all nurses working in cancer care and EONS has the overall vision/mission that every cancer patient should have the best treatment and care.

The Advisory Council, at its meeting in November 2014, acknowledged the great diversity among European coun-

tries and that it should be a priority for EONS to meet the needs for all nurses working with cancer patients. Questions then arose as to how to identify ‘non-oncology members/ societies’, and find out whether they may be interested in collaborating, whether they need information on cancer care, how the national oncology nursing societies work with these groups of nurses, and how EONS should connect with them.

The first task for the Advocacy Task Group will be to contact non-oncology nursing societies with cancer domains (through an agreed contact person for each topic or society) and find out whether they turn towards EONS for information. If they don’t, we should try to find out why. On the basis of the results it would then be possible to establish a closer collaboration between EONS and these organisations.

The EONS national member societies are invited to play an active role in the project as they can promote the Society and its communications on a national level.

25

Teamwork – as essential in advocacy as in daily practice Richard Price

When professionals unite to advocate their needs they are best able to influence change. This is why nursing, veterinary and pharmacy are getting together as sectoral professions to lobby for change to the EU’s Professional Qualifications Directive to introduce specialty recognition.

Improved outcomes can be achieved for patients when professionals of different educations, skillsets and experiences come together to achieve the best they can for the patient. The value of such teamwork is almost self-evident. It shouldn’t be surprising therefore that the same improvement in results can

26

occur when health professionals come together to advocate their needs jointly to the political decision makers in a given system.

This was certainly the case in relation to advocating reforms to the way the EU’s Professional Qualifications Directive recognises health professional qualifications across borders.

A core European Directive The Professional Qualifications Directive has evolved piecemeal over several decades of legislative innovation, trial and errors, as well as an amalgamation of several previously separate profession-specific directives. At its heart it must stand as one of the most fundamental of all European directives,

A DVO CAC Y

underpinning freedom of movement and the right for an individual to have their professional qualification recognised in another EU country. With the post-2008 economic crisis uppermost in the mind of the EU Commission, when it came time to review again the scope for improving the Directive in 2010, there was an emphasis on how barriers to qualification recognition could be further removed.

However, with such an all-encompassing Directive, covering an estimated 4,700 professions in around 800 categories, it’s not surprising that the voice of any one individual profession can easily get lost among so many interested parties seeking to have their own aspirations recognised in the review.

Building a coalition for change It was in this context that the European Association of Hospital Pharmacists sought to find partners who shared similar hopes for how the Directive could be improved. Like other emerging specialisations, hospital pharmacy has developed unique post-graduate educational pathways in order to enable professionals to better meet the particular needs of the healthcare setting they contribute too. For hospital pharmacy this includes a special understanding of medicines for patients in acute conditions, suffering from rare diseases, or admitted to the emergency department. It also includes required knowledge in medicines production, reconstitution (e.g. for paediatric needs), as well as newer fields of professional development such as medicines reconciliation, counseling services and other clinical pharmacy roles on the wards.

With systems of professional specialisation and post-graduate education now in place for hospital pharmacy in most European countries, EAHP members want to see amendment to the Directive to both recognise this particularity, and also to enable labour mobility, as achieved by medical and dental specialists. Other health pro-

None of the organisations could have achieved these changes by themselves. It required teamwork, coordination, leadership and responsiveness within an ad-hoc coalition of interest.

fessions can be seen to have mirrored the path of educational development followed by hospital pharmacy over the past 40 years – including oncology nursing. Pharmacists therefore were not the only ones seeking to bring the Professional Qualifications Directive up-to-date with the creation of new specialisms, and after targeted outreach, a coalition of interested organisations came together that had at its heart: the European Association of Hospital Pharmacists (EAHP), the

European Specialist Nurses Organisations (ESNO – including EONS), and the European Board of Veterinary Specialists.

Although all these three organisations represent professions that benefit from a general automatic recognition of qualification across borders (pharmacy, nursing and veterinary degrees are three of the seven so-called ‘sectoral professions’ within the Directive), they were united in wanting to update the Directive to provide oppor-

Bernadette Vergnaud MEP (right) was among those persuaded of the need for change.

27

tunities for specialty recognition – as had been achieved by fellow sectoral professions medicine and dentistry many years ago.

Amending the legislation The proposal finally agreed – allowing sectoral professions to make use of the new proposed common training framework for specialty recognition – also received support from the primary organisation representing medical specialists, the European Union of Medical Specialists (UEMS). They were concerned about the existing mechanism for medical specialty recognition, created at a time when an agreed common duration period of specialty education was felt to be of key importance.

More recently, agreement on the outputs and outcomes of education (competencies) has emerged as being of greater importance than the duration of the education.

Together, the four organisations were able to ensure all key decision makers were made aware of the arguments for the proposed amendments. Members of the European Parliament, such as Bernadette Vergnaud (France), were persuaded of the case for change, and public interventions and briefings were issued at the key decision points in the reform process. The end result, after a lengthy advocacy process, was a set of amendments to the Directive broadly welcomed by all.

No one of the organisations could have achieved these changes by themselves. It required teamwork, coordination, leadership and responsiveness within an ad-hoc coalition of interest. The resource burden could be shared, the proposed strategy more broadly scrutinised, briefing materials improved and enriched, and third party stakeholder support pooled into a truly joint effort.

The lessons for advocacy ●● Don’t assume that your association is the only organisation interested in your particular priority topic – always consider where your aligned friends and supporters may be. ●● Reach out. Usually other organisations are only too happy to find new partners and friends to work with. No matter their size, all associations have resource limits and will typically welcome being able to bring in extra reinforcement from elsewhere. ●● Make use of all online and virtual collaboration tools at your disposal.

Regular teleconferences and email updates can ensure a core group of leaders from multiple organisations feel ‘in the loop’ on developments and able to contribute their perspective and opinion. ●● Ensure responsiveness. Advocating as a group of organisations will typically mean some partners being more remote from the process than others. However, for success, any campaign needs to be able to react quickly to events and make decisions efficiently. Team members must therefore commit to quick review of documents, publicity materials and strategy suggestions. ●● Be prepared for compromise. If advocating as a group of organisations, it is important that all associations feel able to have their perspective reflected in the advocacy. Equally, some advocacy points may be more appropriately conducted by the individual organisation. Compromise, reasonableness, openness and mutual respect need to prevail. ●● Keep your eye on the prize! In advocacy, setbacks can occur, new sources of opposition can emerge, or novel arguments against your aspiration can come forward. It is important not to be dissuaded, respond rationally to developments, and adjust messaging and strategy accordingly. If you believe strongly in your goal, setbacks should not dissuade you, but rather, fuel your enthusiasm to overcome the obstacle!

In the successful collaborative lobbying on professional qualification recognition conducted by hospital pharmacists, specialist nurses, medical specialists and veterinary specialists in 2012 and 2013, all of these lessons were applied, and by sharing them they can assist oncology nurses (and their partners) to go on to achieve other advocacy successes at national and

Richard Price is Policy and Advocacy Officer at the European Association of Hospital Pharmacists (EAHP).

28

international level.

Gain new insights in every area: from leadership to genetics or holistic issues to survivorship

Get an all-access pass to comprehensive multidisciplinary sessions

Discuss innovative clinical approaches with your European colleagues

Nurses, join us in Vienna and be part of the largest oncology congress in Europe!

Our biennial multidisciplinary congress has an exciting scientific programme designed to meet practical nursing needs. The dedicated oncology nursing track is accompanied by a strong nursing component throughout all 27 tracks a part of the learning experience. Whether your nursing needs are clinical, research, or career driven you will find all you need to make a difference.

European Cancer Congress, Vienna, 25-29th September 2015 Photograph: The Royal Marsden NHS Foundation Trust

www.ecco-org.eu/ecc2015

Françoise Van Hemelryck

Upholding the rights of cancer patients The European CanCer organisation takes great pride in its mission to uphold the rights of all European cancer patients. The Patient Advisory Committee (PAC) was established in 2008 and since then has played an increasingly important role in helping ECCO realise its vision.

From the start, the composition of the committee sought to reflect the diversity of patient groups in Europe. Members are high-level advocates from patient groups covering a range of different types of cancers and many European countries.

They have a unique expertise in the field of patient advocacy, including in-depth knowledge of medicines development, support issues, information provision and regulatory/reimbursement issues.

Since 2012, the PAC Chair has attended ECCO Board meetings and, under the new ECCO statutes, he or she will have a seat on the Board with voting rights.

Examples of key contributions include active participation in ECCO Oncopolicy Forums and other activities aimed at working with EU policy makers. At the last Oncopolicy Forum held in Amsterdam in September 2013, PAC members provided the patient perspective on the prioritisation of scarce resources in oncology and moderated a roundtable on European reference networks for rare cancers.

Over the last couple of years, PAC members have provided the patient perspective in the annual workshop on Methods

30

Members of the ECCO PAC group

In their efforts to advocate for cancer patients, oncology organisations have strived to root their work in a multidisciplinary approach. ECCO, which connects all stakeholders in oncology Europe-wide, has set up a Patient Advisory Committee (PAC) to put patients’ interests at the core of its activities. in Clinical Cancer Research, where they talked about what matters to patients in clinical trials to the junior clinical professionals who manage cancer patients and are involved in designing trials.

Since 2009, the biennial European Cancer Congresses (ECCs) have included a scientific programme track entirely developed by PAC experts. This provides a high-level and widely publicised platform to proactively address issues and challenges faced by cancer patients, and leads to specific recommendations.

At the last European Cancer Congress in 2013, patient advocates called for palliation to be addressed earlier in cancer care, emphasising that palliation equals alleviation of symptoms, both physical and psychological, and is not only about end-of-life care.

Another full session at the ECC2013 focused on patient adherence to cancer treatment, in an effort to gain better understanding from the perspectives of the medical oncology and nursing areas.

Participants in this session, led by PAC

members, called for a multiprofessional approach to tackle this important issue.

Under the new PAC Terms of Reference adopted by the ECCO Board in February this year, in the context of ECCO’s strategic renewal, ECCO member societies have the opportunity to obtain the patient perspective on issues of specific interest to them via PAC. This would allow EONS to have direct insight into the views of patient representatives at the stages of elaboration and implementation of new projects. It may strenghten its own policy activities for the benefit of cancer patients by working directly with patient advocates, while helping to raise the profile of the importance of oncology nursing in the cancer journey.

Following the adoption of these new Terms of Reference, cooperation between the PAC and ECCO member societies will acquire a very productive and valuable new dimension.

Françoise Van Hemelryck is ECCO Patient Affairs Manager

A DVO CAC Y

Engaging with leaders and decision makers globally EONS shares with its international counterpart, the International Society of Nurses in Cancer Care (ISNCC), the aim of ensuring that the contribution of cancer nurses must be valued at all levels of the healthcare and political system.

ISNCC works at a global level. It has a unique mission to “maximise the influence of nursing to reduce the global burden of cancer”, and to achieve this it works tirelessly to enhance the visibility and the contributions made by nurses, in particular their efforts to achieving high-quality, evidence-based care from primary prevention to end of life.

GLOBAL ROLE ISNCC advocates for nurses to have a role at the global and national decision-making tables, providing their unique contribution in the development of strategies and comprehensive cancer care plans. Its leadership, and many of its members, has been involved in the development of various global policies, from the WHO Framework Convention on Tobacco Control to the World Health Assembly resolution on palliative care.

As an international organisation, it recognises that the vast majority of patients, globally, will not receive care, particularly preventative care, from a specialised oncology nurse. Nonetheless, it firmly believes that patients deserve nothing but the highest quality of care and that all nurses should have access to evidence-based information. ISNCC members are some of the lead researchers in the field and an enhanced access and distribution system was recently launched to highlight the scientific contribution of oncology nurses. It is also engaged in a wide range of capacity-building projects in the areas of tobacco control, cervical cancer, oral care, patient safety, among others, as

well as educational activities to foster new nurse leaders (see http://www.isncc.org).

SHARED VISIONS One of its major activities has been to build strong partnerships with international organisations with a shared vision, including EONS, and corporate partners that support the development of its educational activities.

The long-standing partnership with EONS has been established on a basis of mutual

respect and shared opportunities, with both organisations participating in joint educational activities and sharing expertise. Several EONS members are actively involved in the educational projects of ISNCC and viceversa. For example, EONS was instrumental in facilitating ISNCC’s capacity building for tobacco control initiatives in Eastern Europe.

Most recently, ISNCC joined with several national and regional cancer nursing organisations to issue a position statement on World Cancer Day. This underlined that, as the largest group of healthcare professionals, globally, nurses are the backbone of the healthcare delivery system and integral to achieving global targets to reduce cancer-related suffering, morbidity and mortality.

Internationally, the contribution of cancer nurses must be valued at all levels of the healthcare and political system. Failure to do so will have a detrimental impact globally. (see page 16) ISNCC remains committed to continue to engage with leaders and decision makers to ensure that cancer nurses are valued and their input considered at all levels.

EONS at ISNCC 2014 Last year’s ISNCC conference took place in Panama City, Panama. The President of EONS, Erik van Muilekom and Andreas Charalambous, Executive Board Member (Education) represented EONS there. Over 400 participants attended from around the globe. A broad spectrum of topics was presented at the conference covering topics such as supportive care of patients, interventions to improve the quality of life for patients that undergo BMT, caring for the caregiver, palliative care, complementary and alternative medicine and many more.

During the conference a joint plenary session between EONS and ISNCC was held. The session was about promoting quality nursing care from

different perspectives. Our president analysed the topic from a European perspective within the scope of the European Oncology Nursing Society.

Jan Ouwerkerk gave his perspective having as a point of reference the Dutch Oncology Nursing Society. Finally Andreas Charalambous analysed the topic from an individualised perspective, by providing an insight into the transcultural aspect of caring for patients with compassion.

During this year’s ISNCC conference, EONS was also represented by having its own information booth. Nurses had the opportunity to receive information and complementary material about the Society.

Andreas Charalambous

31