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Summer 2014
In this special edition of the EONS magazine, we mark 30 years of our society. The issue provides an insight into our day of celebration this spring and looks at how EONS’ partners and friends play an important role in our success.
30th Anniversary Special
Contents Editor-in-Chief: Helen Oswald Executive Editor: Clair Watts Art Editor: Jason Harris Production Editor: Jim Boumelha Medical Editor: Catherine Miller
Summer 2014
EDITORIAL 3
EONS and The Royal Marsden Past, present and future
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Editorial Assistant: Rudi Briké EONS Secretariat: Avenue Mounier 83, 1200 Brussels, Belgium 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, Hoffmann-La Roche and Takeda for their continued support of the Society as sustaining members.
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Better care for teenagers and young adults
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Providing expert care at the end of life
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ESNO – a voice for specialist nurses
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Closing the confidence gap
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The European School of Oncology – a strong partner
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Learning the benefits of survivorship programmes
Print run: 2,000 copies. Electronic version accessible to 20,000 EONS members.
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Design and production:
© 2014 HarrisDPI. www.harrisdpi.com Printed by: Richline Graphics Ltd. www.richline.co.uk Cover Photograph: Jason Harris Disclaimer The views expressed herein are those of the authors and do not necessarily reflect the views of the European Oncology Nursing Society. The agency/ company represented in advertisements is solely responsible for the accuracy of information presented in that advertisement. The European Oncology Nursing Society (EONS) does not accept responsibility for the accuracy of any
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Anniversary Award for Rudi
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Lost in translation? Bridging modern oncology and human experience
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Thirty years of partnership Building the future of EONS
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From now on, there can only be good days
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All the Presidents’ memories
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Understanding chemotherapy-induced nausea
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Working together is the key
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What EONS means to us
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Looking to the future
translated materials contained within this edition of the EONS Magazine. Author profiles and references can be found for this edition of the magazine at www.cancernurse.eu/magazine © 2014 European Oncology Nursing Society
With thanks to Paul Trevatt, Board Editor of this issue.
EDITORIAL
EONS and The Royal Marsden Past, present and future Guest Editorial Shelley Dolan
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or many years, the European Oncology Nursing Society (EONS) and The Royal Marsden cooperated in a very close relationship. EONS worked consistently to advance the improvement of nursing science for improved outcomes and experience for patients and their families. The Royal Marsden, as a learning organisation, dedicated itself to the same goal. We were therefore delighted to host EONS’ 30th anniversary event this spring to celebrate together this important landmark. EONS was founded in 1984 as “The Fellowship of European Oncology Nursing Societies” by Mrs Rosette Poletti. Robert Tiffany OBE, then Chief Nurse and Director of Patient Services at The Royal Marsden, and widely acknowledged as the world’s leading cancer nurse, was asked to be its first president. The early years, thanks to Bob Tiffany’s outstanding leadership, ensured that EONS led on areas such as clinical excellence awards and education, and organised conferences to improve practice and outcomes for patients. This was our past, but what about our future together? I would love to see The Royal Marsden, other leading organisations and EONS lobby together on nursing numbers, the skills mix and other important issues at European level. The Royal Marsden would also be keen to support learning and practice across Europe, with joint posts and scholarships, and funding for students from across Europe to study at The Royal Marsden School.
With such a rich common history, nurses from The Royal Marsden continue to have a strong affiliation and loyalty to EONS. To cement this close friendship, The Royal Marsden would be keen to fund a new collaborative initiative, selected by the EONS Board and members. In deciding together what this collaboration might be, let’s keep in mind Robert Tiffany’s inspiring vision and legacy: “He believed that cancer patients had the right to be nursed by a highly qualified and skilled workforce. By developing roles for nurses as clinical specialists, educated by the experts in each area, patients were ensured continuity of care between in-patient, outpatient and home care. His vision of nursing integrated clinical practice, management, education and research skills and over the years his enthusiasm attracted many nurses with similar ideals to the hospital.” (In A. P. Pritchard, European Journal of Cancer Care, 1993.) This issue of EONS magazine covers a wide range of recent EONS activities, including a groundbreaking summit in Dublin that saw EONS and the UK’s Teenage Cancer Trust bring together nurses from all over Europe to help develop oncology nursing for teenagers and young adults. You will also find a full report of the Anniversary Event, with a special focus on some of the friends and partners that have accompanied EONS along the way. Finally, a big thank you to the Anniversary Event team – Paul Trevatt, Daniel Kelly, Mary Wells and Mariska Mooijekind –whose hard work ensured the day’s success.
Shelley Dolan is Chief Nurse at The Royal Marsden, a world-leading cancer centre in London, UK, which hosted EONS’ 30th Anniversary Event on 10 April this year
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Better care for teenagers and young adults Report by: Sam Smith and Maria Cable
Since the first Teenage Cancer Trust Unit was launched in London 20 years ago, Teenage and Young Adult (TYA) cancer care has become a speciality in its own right. A partnership with EONS brought nurses together from across Europe at the 2014 Nursing Leadership Summit in Dublin to compare experiences and exchange ideas. 4
In bringing together a community of nurse leaders, EONS acknowledged the massive contribution the Teenage Cancer Trust has made to developing age-appropriate cancer services. Its expertise, forged through experience and the sharing of multi-professional knowledge of the specific needs and issues, has made the UK a worldwide leader in TYA-specific cancer care. Despite this, young people continue to receive treatment in a variety of settings with care delivered by nurses who have not had experience in delivering specialist age-appropriate expertise. The partnership initiative between Teenage Cancer Trust and EONS was therefore essential to begin a discourse on developing nursing practice in this field. The Irish Association of Nurses in Oncology (IANO) welcomed the group to Dublin and participated in the twoday event alongside nurses from across Europe, who were selected by a robust application process. The visiting group
of 14 nurses came from paediatric, adult and specialist teenage cancer services in the UK, Ireland, Sweden, Spain, Portugal, the Netherlands and Belgium. Joint funding from both organisations covered accommodation and travel costs for all delegates. A genuine enthusiasm and motivation was almost palpable The long-term aim of the event was to develop a network of nurses across Europe to progress the specialist discipline of nursing teenagers and young adults with cancer. In the shorter term, it allowed nurses from different countries and working environments to compare their experiences and exchange ideas and ultimately improve the cancer treatment experience for this niche group of patients in their home countries. There was a genuine enthusiasm and motivation amongst the group that was almost palpable over the two days. The nurses clearly valued the opportunity to
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A partnership between EONS and the Teenage Cancer Trust brought nurse leaders together from all over Europe to develop practice. The Dublin Summit facilitators
The nurses clearly valued the opportunity to come together as a group, share best practice, discuss challenges and,
were: Far left, EONS President-Elect Daniel Kelly; back row far right, Maria Cable of the EONS Education Working
more importantly, work together to find solutions
Group; front row far right, Sam Smith Head of Nursing at the Teenage Cancer Trust. David Benton, Chief Executive Officer of the International Council of Nurses, is pictured in the back row, three from the right.
come together, share best practice, discuss challenges and, more importantly, work together to find solutions. Too often nurses are good at identifying and articulating problems and challenges, but then struggle to create alternative solutions to complex issues that require leadership skills, together with political and emotional intelligence. David Benton and the summit facilitators set group work and tasks that would gently challenge the group’s thinking and get them to start to explore their own nursing leadership skills. There was clearly huge benefit in bringing together a diverse group of nurse leaders from across Europe who all had something to offer and share. At the close of the two days, the delegates were asked to reflect and provide individual feedback (see box) on: ●● 3 things they had learned ●● 2 things they would take away ●● 1 thing they would do/action. The nurses were also asked to complete an online survey, including a central question on how useful they found the event. Twelve out of 13 found the event “very useful” and one found it “somewhat useful”. Comments received confirmed the value of the meeting: “Delightful and extremely enriching moment of knowledge and experience sharing!! I look forward to the next meeting, in a process of continuity by sharing and working with the same group.” “Excellent networking opportunity, great to meet new faces in the TYA world and to hear about different good practice from European colleagues.”
“A great stimulus for discussion. Useful tools for tackling specific problems in our own areas of practice. Great for hearing about how others have worked around similar problems. Can think about different ways of approaching challenges. Identifying who your key individuals are to influence was particularly useful.” Overall, the event was deemed to be a positive and valuable learning experience, which successfully explored key issues in cancer nursing care delivery, practice and leadership. This partnership between Teenage Cancer Trust and EONS could be seen as a model for developing improved care for patients in other fields of cancer nursing practice. Both organisations must
be commended for enabling this type of opportunity for the advancement of nursing practice and specialist cancer care for teenagers with cancer who are treated in a wide and varied range of clinical and home settings across Europe. Hopefully these cancer nurses will go on to champion the special needs of young people with cancer and the specialist nursing that is required to manage their care.
The nurses outlined their vision for the continuation and development of this group, and some of them have already met again in London, on 6 July, at the first Teenage Cancer Trust Nursing Symposium. It is hoped that the group will meet again to build on this groundbreaking event.
Examples from the feedback included: Three things you have learned ●● Never give up and choose the right area to have power and influence ●● There is a network of professionals available to use as a resource to
for change and start small ●● A renewed positivity ●● Desire to lead greater patient/ professional partnership initiatives ●● New friends and connections.
mobilise services ●● The responsibilities of a nurse leader
One thing you will do
●● Asking for feedback that is honest
●● Get an appointment with the current
and critical.
head/manager of the oncology department and present what we
Two things you will take away ●● The feeling that internationally we
talked about ●● Take the first step; connecting with my
can make bigger steps together
organisation and my team
●● Inspiration and enthusiasm to strive
●● Create an EONS working group.
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Providing expert care at the end of life: A view from another discipline As they develop their careers, nurses often find that they can learn a lot from people in other disciplines, and with areas of expertise other than their own. Here, Helen Thurkettle of Guy’s and St Thomas’ NHS Foundation Trust, London, UK, explains her role as a Nurse Consultant for End of Life Care. My role, which was created almost five years ago, is to empower community nurses to care for patients when they are nearing the end of their lives, in their own homes. I do this by providing leadership, help and support in dealing with complex, clinical and emotional situations. In these cases, all specialities and disciplines need to work together and coordinate care to provide a tailored care package for the patient and family. I use a great deal of the UK’s End of Life Care Strategy (EOLC), in particular the principles of palliative care which, historically, had been focussed towards cancer patients. My background is in general nursing. I started my training in 1983 and worked for six years in hospital and community settings. I developed a personal interest in palliative and end of life care, and in 1989 I had the opportunity to work in a hospice in-patient setting which I did for the following eight years. I have subsequently worked as a clinical nurse specialist in community and hospital settings, and led on the development of a hospital palliative care service. I was seconded by the cancer service improvement team to support and implement the principles of the end of life care strategy. From there, I became the EOLC nursing lead, working with many local nursing homes to support care home staff in developing their knowledge and con-
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fidence in caring for dying patients and improving standards of care. Throughout this time I have continually supported my clinical learning with academic studies to develop my knowledge and expertise in palliative care. In 2000, nurse consultant roles were introduced in England to keep senior nurses in clinical practice, to improve the quality of service provision and achieve better outcomes for patients. They offered the knowledge and confidence to provide leadership and expertise in clinical nursing practice, and influence and support community nurses to deliver excellent, evidence-based, timely and compassionate care. A big part of these roles is to work alongside both specialist and generalist healthcare staff, across both hospital and community, to ensure that patients are supported by well-coordinated and informed teams. They are also responsible for measuring systems, and setting and reporting targets, so there is confidence in the standard of care being given to patients. Looking after patients at the end of life in the community often requires complex clinical decision making, risk management and skilled nursing care. It can be extremely challenging and emotionally draining, and the staff appreciate clinical support alongside them in the home. It is important that my role can be flexible to meet the needs of all levels of the team,
Report by: Helen Thurkettle
who will in turn benefit from the skills of knowledgeable, compassionate and confident nurses and well-co-ordinated systems. By working closely alongside nurses I can see their confidence and skills developing and they appreciate good feedback they receive from patients and families as well as their senior colleagues. I have great hopes for the future of end of life nursing care: ●● For the service: to always strive to do better in a changing landscape. There is a huge opportunity to stop thinking about hospital v community and think about working in a patient-focussed way. The standard of care should be the same irrespective of where the patient may be, including nursing homes. ●● For the profession: to develop the role of the consultant nurse, as it is relatively new, and provide an opportunity for community nursing to build on evidence-based practice. To ensure that future senior nurses have the opportunity to influence clinical practice and nursing services as they progress through their career. ●● For me: to keep a work/life balance and continue to challenge my own learning and professional development. Make sure I keep my head above water with the competing demands of the role.
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ESNO – A voice for specialist nurses Among the many organisations working with EONS over the years, ESNO is one of the closest and most relevant to cancer nursing. Here its vice-president talks about the role of this umbrella organisation.
ANISATIONS G R O S E S R U N T IS L EUROPE AN SPECIA The European Specialist Nurses Organisations (ESNO) is the unified and only recognised voice of specialist nurses in Europe. Launched in 2002, its main goal has been to facilitate and provide an effective framework for communication and co-operation between member organisations, and to present their mutual interests and benefits to the wider European community and in the interest of public health. Furthermore, ESNO aims to promote the development of specialist nursing education, practice and research. It is recognised as a working party at the European Medicine Agency (EMA) and participates actively in several activities on medicine safety and more recently on drug shortages. ESNO’s strong collaboration with the European Public Health Alliance (EHPA) and the European Union of Medical Specialists (UEMS) illustrates its vision of multidisciplinarity on an equal level. For example, joint action with the EHPA led to the introduction of an amendment to a new Directive stating that the Common Training Framework (CTF) applies to all
Report by: Françoise Charnay-Sonnek professions listed in Chapter 3 and Title 3, and should be used for post-graduate qualification in our professions. The CTF is based on a common set of knowledge, skills and competences agreed on by at least one third of member states, i.e. 10 countries. Although it is up to each profession to develop their own framework, ESNO would like to help them in this process by providing a link to UEMS and enabling specialist nursing organisations to contact and collaborate with their related medical specialties. This issue is of particular relevance to EONS since it has been the aim of the society for many years to establish oncology nursing as a specialty at European level. Moreover, ESNO works on common competences for establishing a nurse specialty, which can then be considered as the basic foundation for the development of each of the specialty-based competences. All of ESNO’s work has huge importance for EONS members, because it
Current members of ESNO ACENDIO - Association for Common European Nursing Diagnoses, Interventions and Outcomes EDTNA/ERCA - European Dialysis and Transplant Nurses Association / European Renal Care Association EfCCNa - European federation of Critical Care Nursing associations ENDA - European Nurse Directors Association EONS - European Oncology Nursing Society EORNA - European Operating Room Nurses Association FINE - European Federation of Nurse Educators FEND - Foundation of European Nurses in Diabetes Horatio - European Psychiatric Nurses IFNA - International Federation of Nurse Anesthetists EAUN - European Association of Urology Nurses
addresses specialist nurses’ concerns in terms of recognition, the free circulation of oncology nurses within Europe through the European Professional Card (EPC), and the recognition of qualifications. Furthermore, joint action with patient, pharmacist and physician organisations to address drug shortages also has great relevance for oncology nurse specialists: shortages in anti-cancer treatments is a persistent issue that impacts on the way they practise. The more unified nurse specialist societies are, the stronger they will be. Only with coherent, collaborative actions will we be able to express at EU level the goals we would like to reach in order to enhance the quality and safety of care, as well as working conditions. ESNO is organising an event to celebrate its 10th anniversary in early November 2015. Find out more at www.esno.org/ event-2015.php.
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Closing the confidence gap Ber Oomen, Executive Secretary and Treasurer of ESNO, talks about how, from his position as a psychiatric nurse, he found the confidence to help push the boundaries of nursing right across Europe. Here he argues that all nurses can take their profession forward, no matter where they are starting from.
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was invited, some 10 years ago, to help create a European network for psychiatric nurses. At that time, there was no European association representing them and I took advice from professionals close to me. Most doubted that I had the personality to do it, and I believed them. But gradually realising that no one was taking responsibility, I started mailing and phoning people. One year on, I signed the constitution of the first European association for my profession! I just did it because there seemed no reason to wait for the green light from ‘the person who’s not there’. I was invited in my new position to give a presentation at a congress for mental health nursing managers in the UK. When completing a form about my academic titles, I wrote “none” because I’m an on-the-job nurse, trained in a very practical learning environment, having taken the traditional route with additional psychiatric training and other extra courses such as leadership. This caused some confusion! You may ask how I became the Executive Secretary of the European Specialist Nurses’ Organisation? The easy answer is “based on an invitation while
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being around in that field for a while and minded to serve”. The analogy I like to use is that I do not need to know the chemical composition of water to know how to drink it and how to swim in it! As a nurse, I know our world inside out, and I am convinced about the positive input our profession can make at ward leadership level and at high-profile meetings in Brussels. I do not need to knock on doors, because they are already open and I’m welcome, in particular when the discussion is about the representation of nurses. I operate in both extremes – four days a week caught in the vagaries of the daily practice of a ward on the one hand and helping run ESNO, dealing with members as well as toplevel officials in Brussels, on the other. To every nurse, I recommend that they widen their view of the profession and take the space no one has used. However, if you do this only to look good on your CV, you will be one of many who come and go and are forgotten. But if you do it with the right intentions, there is so much to see and learn, and you will also end up with a wonderful network of nursing friends.
The European School of Oncology – a strong partner EONS and the European School of Oncology (ESO) work closely in education, particularly through the Masterclass. Established in 1983 by the Italian cancer surgeon, Umberto Veronesi, ESO is an independent non-profit organisation whose mission is to help improve the standards of treatment and care for cancer patients across Europe and “to contribute through education to reducing the number of cancer deaths and to ensuring early diagnosis, optimal treatment, and holistic patient care.” ESO runs 20-25 courses each year on various cancer types and methods of treatment and care, primarily in Europe but also in the Arab world, via the EuroArab School of Oncology. The School also holds an annual Masterclass in Clinical Oncology in collaboration with the European Society for Medical Oncology (ESMO) and, with EONS, a Masterclass in Oncology Nursing, for which participants are selected on a competitive basis. Successful candidates spend a week with leading oncologists and nurses, who give lectures on state-ofthe-art clinical evaluation and treatments. As well as traditional classroom education, ESO also has an online distance learning programme, which includes fortnightly webcasts and a Master Online Study Program in Advanced Oncology which it runs together with the Univer-
Report by: The ESO team sity of Ulm. The Certificates of Competence in Lymphoma and in Breast Cancer are also organised with this university. In recent years, ESO has broadened its scope to include three conferences: the ABC conference on Advanced Breast Cancer (the only professional conference to address the treatment and care needs of people with advanced cancer), a conference on Active Surveillance for Low-Risk Prostate Cancer, and one on Breast Cancer in Young Women. In 2012, ESO held the first World Oncology Forum in collaboration with The Lancet, where leading clinicians, researchers, epidemiologists, advocates, policy makers and industry representatives came together “to evaluate progress in the war against cancer”. The participants of the conference drew up a 10-point strategy, entitled Stop Cancer Now! which called on world governments to speed up progress in prevention, delivery of treatment and care, and development of effective affordable therapies. ESO does not only focus its efforts on oncology doctors, but recognises the key role others play in the treatment and care of patients. This makes ESO a true exam-
Participants of the ESO-EONS 2013 Masterclass in Switzerland
ple of a multidisciplinary organisation and the School has included nursing in its courses, which are organised in collaboration with EONS. It was also an active player in the creation of many European patient advocacy groups including Europa Donna – the European Breast Cancer Coalition, Europa Uomo – the European Prostate Cancer Coalition, and the European Cancer Patient Coalition. ESO recognises the importance the media plays in highlighting cancer issues through its annual awards, grants and training courses for journalists. It also provides media training for clinicians and other cancer professionals, to help them interact more effectively with the media. Much of ESO’s work and values are highlighted in its magazine Cancer World which explores the complexity of cancer care from various viewpoints and brings together the social, political, economic and organisational factors that impact on patient experiences and outcomes. Thanks to the support of independent donors, ESO is one of the only organisers of courses not dictated by industry sponsorship. This enables ESO to maintain its mission and give space to topics that are often ignored. You can find out more at www.eso.net
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Learning the benefits of survivorship programmes Lead Cancer Nurse Lyndel Moore from the Great Western Hospital in Swindon, UK, won an EONS travel scholarship to visit two leading US cancer hospitals to learn about their survivorship care programmes.
Report by: Lyndel Moore
My journey started in Baltimore at the John Hopkins Sidney Kimmel Comprehensive Cancer Center. I instantly felt a buzz in the air, as I met health professionals totally dedicated to their work and the patients in their care. Cancer survivorship work started in the USA in 2005 following the publication of the government paper “Lost in transition”. By 2015, all cancer centres in the USA are expected to have survivorship programmes in place or they will risk losing their accreditation. In 2007, staff from Johns Hopkins visited the Livestrong programme (www. livestrong.com) in Los Angeles to help establish their own programme. Additionally, the childhood cancer team had many survivors (85%) and were leading the way, having established long term follow-up programmes and late effects clinics. When I met with the chief administrator of the hospital, she commented on the key achievements for cancer survivorship which include: ●● end-of-treatment care planning and summaries for breast and colorectal patients ●● breast cancer retreats involving metastatic patient retreat and an adjuvant patient retreat ●● a cancer survivor day in June ●● a cancer rehabilitation programme
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●● development
of a website with webinars from experts on a variety of issues.
PAEDIATRIC ONCOLOGY Children start the survivorship programme five years after diagnosis, after which they are reviewed annually. The medical team are not involved in the follow-up unless there is a relapse. A nurse practitioner meets the survivor with their family until the child reaches puberty, after which the nurse will see them individually. Prior to each appointment, the patient or caregiver will complete CHADIS, a child health questionnaire. This looks into schooling and psychosocial issues. A summer camp is run for survivors aged 5-18 years. Generally 120 children attend and older survivors come back as counsellors. Breast cancer survivorship programme This programme was developed five years ago by healthcare professionals who were also breast cancer survivors. The breast unit sees over 700 new patients a year, with five medical oncologists and three additional ones offering a second opinion. Two nurse practitioners work autonomously within the survivorship clinic, providing end-of-treatment summaries and care plans at the end of active treat-
ment. Initially, the team reviewed the ASCO guidelines, Journey Forward (University of Pennsylvania) and Livestrong, but subsequently they developed their own summary. The team does not provide open access follow up, but all patients are followed in clinic for five years. No holistic assessment is completed but a checklist is reviewed. Information for patients is provided online on the hospital website, but with no hardcopy. Sixty-five videos are on the website covering issues such as exercise,
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nutrition, sexual health, returning to work. One-hour webinars are also available, and patients can contact the health professional online in a live Q&A session. The team have a special programme for mentoring, which is offered to all newly diagnosed patients. Volunteering is strong, with 40 people helping in clinic and at retreats. Patients are signposted to activities in the community; they may start in a walk to 5km programme, gradually building up their fitness. Cancer Survivor Day is a national cele-
bration day for survivors. The programme of activities for the day at the hospital usually involves a motivational speaker and fashion show. Most patients are only referred to palliative care within five days of the end of life. More than 55% of patients are still receiving chemotherapy at the time of death. Currently only one palliative care physician is in post for the hospital.
CENTRE OF EXCELLENCE Like John Hopkins, the Memorial Sloan Kettering Hospital, in New York City, is a centre of excellence with extraordinary facilities, with people from all over the world receiving or providing treatments. The survivorship programme at the hospital is very well established. It started in 2006 and now operates across all tumour sites. Fourteen nurse practitioners offer the survivorship service. The nurse practitioner approach was started as a result of a long waiting list for the oncologist. This approach to care allows the doctor to focus on newly diagnosed patients, those going through active treatment and metastatic patients, using a risk-stratified approach. The service developed from patient focus groups and surveys.
SURVIVORSHIP CLINIC
Memorial Sloane Kettering Hospital
The survivorship clinic is conducted by nurse practitioners experienced in their own tumour site. The nurse will review around 1200 patients per year. Clinic slots are for 30 minutes. Transplant patients will have 45-minute appointments. A quarterly review of medical records is conducted with a nurse practitioner and physician checking care was appropriate. The nurse practitioners meet twice a month as a group for discussion with activities including journal club/seminars and invited speakers. The hospital will provide lifelong follow-up if requested. A paper copy of the follow up guidance is provided but, at approximately two years; the MSKSC nurse practitioner will review the patient before transition to the community physician after five years.
The hospital has developed a list of competencies the nurse needs to achieve before running the clinic independently. All nurses have advanced skills and are registered nurse practitioners. Clinic visits include: ●● a review of medical history and physical examination ●● an assessment to detect recurrence of cancer ●● an identification and management of the effects of cancer and its treatment ●● screening referrals for other cancers ●● health promotion recommendations – nutrition, exercise and smoking cessation ●● providing treatment summary and follow-up care plan ●● communication with primary care physician. The nurses work closely with support groups, the social work team and charities. They also use an integrated approach to care, offering massage, reiki and other treatments. Following the visit, my recommendations for the survivorship programme include the following: ●● a
holistic needs assessment clinic following diagnosis ●● a living well day – in-treatment day including diet, exercise, psychological techniques and finance ●● support groups/patient mentoring ●● a risk stratification to follow-up care including nurse practitioner follow-up/ survivorship clinics ●● an end-of-treatment summary/E-HNA with care plan ●● a signpost to community activities (primary care), e.g. gym accreditation, cancer to 5km walk, living well days after treatment ●● a website development/charities – webinars and online support ●● support groups for adjuvant and metastatic patients ●● retreats ●● a cancer survivor day ●● a cancer survivor workshop.
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Anniversary Award for Rudi At the EONS 30th anniversary event, Rudi Briké was presented with the Anniversary Award 2014 for excellent support of EONS in its goals of supporting cancer nursing across Europe.
Rudi Briké, EONS Executive Office Manager, received his award from EONS President-Elect Daniel Kelly on behalf of the EONS Board.
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Accepting the award, Rudi said: “It’s on occasions like this that one realises how quickly time goes… It took me back to the 20th Anniversary of EONS during the 4th EONS Spring Congress in Edinburgh in 2004. It all seems to have gone so swiftly! “I joined EONS in May 2000 as Executive Office Manager and, over time, my involvement with an organisation as big as EONS, through the national societies, the advisory council meetings, EONS conferences and the EONS individual members, only increased and became more and more personal.
“I had the opportunity to visit the different oncology hospitals all over Europe and became aware of the differences that exist in healthcare systems and levels of specialisation. In 2005, my father was diagnosed with skin cancer and his treatment in hospital made me even more aware of how important the role of cancer nurses is and how much patients can benefit from receiving the care of well-educated cancer nurses – and what an important role EONS can play in supporting its members in providing the best care. “I would like to thank all of you for this Anniversary Award! I feel really honoured and I would just like to stress how great it feels to be able to assist you, the EONS membership, in a modest way, in achieving EONS’ main aim: to provide the best care possible for all cancer patients all over Europe.”
19/03/14 13:45
ANNIVERSARY
Lost in Translation? Bridging modern oncology and human experiences EONS Board Member Mary Wells delivered the annual Robert Tiffany lecture at The Royal Marsden on the evening of the Anniversary Event. The lecture is in memory of this pioneering cancer nurse and is delivered by someone who has achieved prominence in oncology nursing.
Mary Wells pays tribute to the groundbreaking work and prevailing influence of Robert Tiffany
“We need to chart a new course if we are to provide care that is more patientcentred, accessible, coordinated, and evidence-based”
M
ary Wells started out by reflecting on 30 years of being a nurse – most of them in cancer nursing – and on her love of the intuitive elements of nursing. These ranged from the ability to apply nursing skills and knowledge to situations where it is not always clear what the problems are, to recognising and responding to distress, discomfort and deterioration instinctively, to the often hidden aspects of peoples’ experiences – the issues, she said, that were often left unsaid between nurses and patients, between nurses and doctors, and the neglected groups, the messy and the complex. Addressing an audience of many cancer nursing leaders, she explained the title of her lecture, ‘Lost in translation? Cancer nursing in a future that is not what it used to be’. Many experiences, physical symptoms and emotional responses can so easily get lost in translation – between a person with cancer and his or her loved ones, between nurses and other members of the multidisciplinary team and, of course, between nurses and patients. She pointed out that research often fails to be translated into practice because we don’t ask the right questions, use the right methods or report the most useful information.
THE VALUE OF NURSING Referring to RN4CAST, a large European study of more than 33,000 nurses, Professor Wells said we should be concerned that the aspects of care that nurses reported as most likely to be left undone, were being with and talking with patients, developing care plans, educating patients and families and providing oral hygiene. At the same time, she stressed that data from the same
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study also provided powerful evidence of the value of nursing. It showed that an increase in a nurse’s workload by one patient increased the likelihood of an inpatient dying within 30 days of admission by 7%, and every 10% increase in the number of nurses with a bachelor’s degree was associated with a decrease in this likelihood by 7% – clear evidence that nurse staffing and graduate education make a genuine difference to patient outcomes. It was clear that the aspects of being a person, not just a patient, is often what research by cancer nurses is successful at uncovering. Mary Wells said, “It is so important for cancer nurses to look beyond what is presented to us. The way we ask questions in practice and in research, and the way we listen and respond, is absolutely crucial to legitimising and validating the experience of patients.” Returning to the source and meaning of her title,
also be seen in relation to access to clinical nurse specialists (which is better for more affluent, younger patients with certain types of cancer), in relation to quality of life, and to participation in research. Professor Wells went on to point out that as the population ages significantly, the majority of people who are diagnosed with cancer also have a range of other co-morbid conditions. This has consequences for diagnosis, treatment and survival, and the site specialisation that we have so carefully protected over the last 15-20 years does not always serve nurses or their patients well, as nurses are so locked in their own areas of expertise that they do not always think beyond those boundaries. Research has also shown that survivors of cancer are significantly more at risk of poor physical and psychological health, chronic disease and serious adverse events, and experience significant unmet needs. “We need to chart a new course if we are to provide care that is more patient-centred, accessible, coordinated, and evidence-based. We need to chart that course for people who are affected by cancer and who suddenly find themselves in unfamiliar territory, who are, literally, lost in translation,” Mary explained.
A POSITIVE FUTURE
borrowed from the French poet Paul Valery, she explained, “I think it captures the challenges we currently face in cancer nursing but, importantly, it also captures the reality that faces a person diagnosed with cancer – the future is no longer what they imagined for themselves, and I believe that cancer nurses, and cancer nursing research, have a hugely important contribution to make to helping those people to re-imagine and live their future.”
A SUCCESS STORY So why is the future not what it used to be? Partly it is a success story, that increasing numbers of people survive a diagnosis of cancer. However, there are still worrying differences in survival across tumour and demographic groups – and these differences can
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In conclusion, Mary Wells said that cancer nurses have the ability, the skills and the knowledge to recognise, acknowledge, understand and respond to both the complexity of oncological treatment for the individual, and the simple and everyday ways in which all aspects of life, including a person’s sense of future, are changed by a diagnosis of cancer. The research that cancer nurses do, she argued, can translate individual patient experiences into a language and evidence base that not only takes risks and confronts difficult questions, but can translate between the increasingly complex world of cancer treatment, technology and science and the experience of individuals who are affected by cancer in a way that is scientifically and practically meaningful. Professor Wells finished by saying that the future could be very positive indeed for the new generation of oncology nurses. “Cancer nurses have an opportunity to seize and demonstrate what matters, to bridge the world of modern oncology and the world of human experiences,” she concluded. Mary Wells is Professor of Cancer Nursing Research & Practice, NMAHP Research Unit, University of Stirling.
Left. A nurse at The Royal Marsden provides first class care to a patient at the hospital
Thirty years of partnership Building the future of EONS In opening EONS’ 30th anniversary celebration, our President, Erik van Muilekom, welcomed a crowded auditorium of cancer nurse specialists and friends of EONS, past and present, from all over Europe.
EONS President Erik van Muilekom began by describing how EONS was founded by nurses from the UK, France, Switzerland and the Netherlands, then spread across the whole of Europe and beyond, most recently welcoming nurses from Russia and Palestine. The President reminded everyone of the foundation stones on which the society is built, principally to: ●● improve nursing care for patients affected by cancer ●● develop cancer nursing as a specialty ●● promote education for nurses ●● promote nursing research ●● promote exchange of knowledge and travel opportunities ●● be a communication platform in the EU ●● build a network with other cancer organisations. EONS now has a defined mission and values, fixed procedures and structures, and runs a wide range of educational activities and networking events. However, although EONS has been transformed over the years, it is still very distinct. Thirty years on, the key characteristics of the society remain. EONS is still largely supported by the time and energy of volunteers joining forces to improve cancer care and committed “to work with and for its members.” In 2014, EONS now has more than 22,000 members in 30 countries, and is affiliated to many non-governmental organisations and sister cancer organisations, hugely extending
the influence and aims of cancer nursing. Erik van Muilekom stressed that, no matter what the coming 30 years bring, EONS’ vision will always remain “that all people affected by cancer across Europe will benefit from the care of well-educated, well-informed and highly competent cancer nurses, who will play a central role in providing support, promoting health and improving clinical outcomes.” The EONS Board, who give so generously of their valuable time and strong expertise, will remain central to achieving these aims, the President said. Without their passion and dedication, EONS would not be the effective and inspiring organisation it is today. He also paid tribute to the staff who run the office, oversee the administration, produce communications, look after the finances and help make the society run smoothly. Summing up, he invited his audience to take a step back and ask themselves what kind of house they have built in the last 30 years? He answered this by listing the key results of 30 years of partnership: ●● a voice in Europe for cancer nursing ●● a wide range of benefits for members ●● working with other cancer organisations ●● recognition by partner organisations ●● a financially healthy organisation ●● professional staff ●● active members. Erik van Muilekom concluded by point-
ing out the impact EONS has had on cancer nursing, ranging from achieving professional qualification for nurses and establishing cancer nursing as a specialty, to developing advanced nursing practice and supporting influential nursing research. He also identified current challenges: making EONS more representative of all parts of Europe and encouraging more active members. What about the next 30 years? The President said there will be increased demand for cancer nursing, professional development and for European/worldwide collaboration. “There’s plenty for us to do – let’s get to work building the future,” he said. Erik van Muilekom is Clincal Nurse Specialist at the urology department of the Antoni van Leeuwenhoek-Netherlands Cancer Institute Amsterdam, The Netherlands.
This document shows the very beginnings of EONS and is, in effect, its ‘birth certificate’.
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“ From now on, there can only be good days” Ania Willman, Head of Care Science at Malmö University, Sweden, delivered the keynote speech at EONS’Anniversary Event. A cancer patient herself, she offered a personal view of cancer care from her unique perspective.
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ANNIVERSARY
Ania Willman began her presentation with the song ‘From now on, there can only be good days’. She said, “This song is about hope. When the worst possible has happened, only one truth remains – that from now on there can only be good days.” In August 2006, I suffered a relapse of malignant lymphoma. This time the tumour was located in the throat. I had just started a course of cytostatic treatment when I was elected President of the Swedish Society of Nursing. My aim here is to focus on my experiences as a patient in the light of the way in which the nurse’s responsibility is described in the nursing literature and research. One of the goals of nursing interventions is for the patient to experience health. The health process is influenced not only by the disease and injuries but also by the individual’s attitude and choices in life. Health is a subjective experience of meaning, preserved autonomy, integrity and dignity. It is based on the patient’s own perception of meaning. A sense of hope is vital for the patient’s well-being, thus the utmost care is necessary in order not to extinguish hope but instead to strengthen it. Hope means being convinced that there is meaning, and hope nurtured by closeness and being together with loved ones. Hope is crucial for health but the way in which we experience it is unique to each individual. Great wisdom, experience and compe-
tence are required from nurses and others, to encounter each patient individually. I worked as a nurse for 13 years before becoming a teacher and researcher, and have now been a patient on several occasions. Hope flew out of the window My life as a patient made me aware of the importance of the nurse’s way of carrying out the responsibility for managing patient-centred care. The examples I will now present are from different care episodes and wards, but my experiences in the room, pictured here, made me start to reflect. I was kept in isolation for four weeks in December 2006 in a room that measured 10 by 12 metres. The final cytostatic treatment was intended to suppress the bone marrow and production of leucocytes and, once this had been achieved, I would undergo an autotransplantation of leucocytes. In the meantime, I was told to avoid infection of any kind. If not, I would become very seriously ill. When I opened the door to the room I saw an exercise bike, a TV and a bed for relatives. The first thing I noticed was a picture with red leaves and a bunch of plastic flowers. To me red leaves signal death and destruction. Hope flew out the window! In her 2004 doctoral thesis presented at Åbo Academy University, Synnøve Caspari writes that there is a relationship between health, well-being and the aesthetics of one’s surroundings, and that professional care
demands an awareness of and attention to the aesthetic dimension. Research has also revealed that patients choose to keep a low profile – I wiped away my tears and my husband and I hid the picture and hung one of my own instead. However, it triggered many thoughts about the effect of the environment on patients. In the mid-19th century, Florence Nightingale wrote about the importance of the environment and fresh air for the sick person as well as the necessity of airing and keeping the sick room clean. In my isolation cell, I was not allowed to open the windows and the door had to remain closed. Imagine how that feels when you are nauseated, have vomited and need to open the windows to get some fresh air! What upset me the most was staff members who stood in the anteroom with the door slightly ajar and spoke to me, not with me. I have read articles on ‟evidence-based design where the assumption is that the design of the environment should support the activities to be carried out there. In my room there was no place for books, embroidery or skin care items, which had to be kept in bags on the floor. Symbols of isolation In the literature, fatigue is the symptom most commonly mentioned in relation to patients with cancer. Its characteristics are tiredness and lack of energy. However, this symptom is accentuated by the
Ania’s presentation featured many photographs of the oppressive room in which she spent four weeks in isolation during December 2006.
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Ania during her treatment
Great wisdom, experience and competence are required from nurses and others, to encounter each patient individually.
Ania with her doctoral student at the time, Peter Stoltz
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healthcare organisation. Responsibility for patient-centred care includes helping the patient to conserve their energy. Research has revealed that patients with cancer who have been treated with cytostatic drugs experience an average of 10-14 symptoms. The initial phase is dominated by worry, lack of energy, dizziness, tearfulness and difficulty sleeping. Research has demonstrated that additional symptoms are pain, irritation, nervousness and difficulties concentrating. Optimal symptom control requires the nurse to educate the patient about symptoms and how to prevent them, as improved control leads to increased treatment effectiveness. The symptoms become stronger over time; hair loss, a pricking sensation in the hands and feet, balance problems, weight gain due to cortisone, skin changes, wounds that won’t heal, nausea, constipation, coughing, a changed sense of taste, loss of appetite and anxiety. All these symptoms made it vital to control, prevent and manage fatigue by means of routines for exercise, brushing one’s teeth, breathing exercises and massaging the skin with ointment. The board with my schedule hung at the foot of my bed. Towards the end of the treatment I cycled about two minutes per day – but at least I cycled, which I thought was the main thing. However, I had the impression that nobody else considered it important, because I received no support when
ANNIVERSARY
I was too sick to perform the routines. A Swedish thesis by Margareta Andersson has established that the patient experiences a lack of security when his or her sense of autonomy and dignity is violated. The nurse’s responsibility for patientcentred care comprises supporting him or her to maintain habits and routines, planning and managing the care in such a way as to strengthen the patient’s autonomy and involvement. According to Imogene King’s theory, the patient will be satisfied when there are clear care goals and the patient and nurse agree on how to achieve them. Perhaps I was too sick to notice, but I was not aware of any care planning. Improving information and education Nurses constitute the largest group of professionals within Swedish cancer care. They provide treatment, thereby saving lives. New targeted cancer therapy is combined with traditional methods such as radiotherapy, cytostatics and surgery. The nursing methods employed should, as far as possible, be based on evidence. Guidelines, for example for changing peripheral venous catheters (PVC), must be adhered to. Despite this, I had to argue with staff to have my PVCs changed. Although nurses make huge efforts, there are still many areas such as information and education that can be improved. A study of patients with prostate cancer
Ania Willman with EONS President Erik van Muilekom
revealed that 50% had knowledge of the disease, 36% failed to correctly indicate the site of their tumour and 34% did not know that radiotherapy can lead to burns. I’m not implying that the nurses did not inform the patients, but that the latter either did not hear or understand. Rosemarie Rizzo Parse’s theory of ‘humanbecoming’ states that a person who is allowed to live in accordance with his or her values enjoys health. Carrying out research and supervising my doctoral students were activities that I valued highly. When I received my first cytostatic treatment there was one nurse who understood this and provided a quiet place. I didn’t disturb the other patients and I could receive and supervise my doctoral students. That nurse strengthened my experience of health. I envisage two challenges for future care – one concerns the best way in which to manage and apply the large amount of scientific knowledge that is produced, and the other is how to enable patients to participate and be actively involved in their own care. Use of scientific knowledge and information is not a new phenomenon in healthcare. However, what is different today is the constant stream of new research findings and the technical advances that have
made it possible to disseminate and retrieve this information. One strategy could be to develop decision support documentation that can assist clinical staff in individual care situations. Examples of such documentation are clinical guidelines, care programmes and standardised care plans. The fact that scientific knowledge is applied more systematically does not guarantee that patients feel secure or are spared exposure to risks or errors. It is necessary to strengthen the patient’s status within health care and, in order for patient safety work to advance, the knowledge of how to actively involve the patient must be increased. It takes courage Patients are, among other things, able to observe, remind, question and avoid risks. A prerequisite for active involvement and participation is that a relationship, based on trust, exists between patient and carer. My message is that it takes courage – courage to adopt the patient perspective, courage to listen to the patient’s voice and courage to make changes that allow patients and their relatives to play an active role. An additional message is that nurses must take full responsibility for patient-centred care.
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All the Presidents’ memories The pinnacle of EONS’ anniversary celebrations was bringing together 11 past-presidents at The Royal Marsden, London, where the society spent its formative years before moving to Brussels in 1997. The BBC presenter Nicholas Owen, himself a survivor of kidney cancer, used his skills to tease out memories, anecdotes and confessions, to record the first authoritative collective presidential account of three decades of EONS.
I
t all started in the early 1980s with a growing sense among many cancer nurses of the moral imperative to get together and self-organise. Rosette Poletti from the Swiss Oncology Nursing Society recalled how for years oncology nurses had bumped into each other at events organised by other “good organisations” until it dawned on them, while together in Amsterdam in January 1984, to start one of their own. “We scribbled invitations on pieces of paper as we decided we needed to create something that would be a nursing society for oncology nurses. Some people got the message, some did not.” Rosette Poletti was one of the founders and de facto leader for one year. A tower of strength It soon became clear to the band of pioneers that to get off the ground, the new budding society would need administrative and professional support beyond this initial networking, in order to lay the foundations of a serious organisation. It was therefore agreed to base it at The Royal Marsden and Robert Tiffany, then a Chief Nursing Officer at the hospital, took over the reins as its first president. This was one of the toughest and most thrilling periods, as recalled by Elisabeth Holter of Norway, who became EONS’ second president in 1988. Rosette Poletti and Elisabeth Holter both enthused about the extraordinary role played by Bob Tiffany. Elisabeth Holter described the man who consolidated it into a modern solid organisation: “He was very inspiring, charismatic, enthusiastic and very present. He was really a celebrity – just like we see celebrities today. He was a star and he was known all over the world,” she said.
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Rosette Poletti, Elisabeth Holter, Kathy Redmond, Agnes Glaus, Hansruedi Stoll, Nora Kearney
Kathy Redmond, President in 1994 from Ireland, also recalled Bob Tiffany’s huge contribution, “When I became president of EONS at the ripe old age of 31, it was such a baptism of fire for me, not least because I felt like a dwarf standing on the shoulders of a giant of cancer nursing. I first met Bob at an EONS meeting in Sara Faithfull, Sultan Kav, 1989, and he inspired me so much. Birgitte Grube, Yvonne Cancer nursing lost a great leader Wengstrom, Giel Vaessen when he died just before I took up my presidency, but his legacy lives on in how cancer nursing has evolved into the most pre-eminent of all nursing specialties.” Bob Tiffany’s towering contribution still encapsulates what EONS means to cancer nursing. But successive presidents left their own distinctive
imprints. Whatever their passion, whatever legacy they sought to leave behind, they united behind the goal of developing EONS as a modern, effective society relevant to its members. “The challenge in the early years was to obtain a sustainable economy and research in cancer nursing,” said Elisabeth Holter. A few years later, EONS was still working hard to strengthen its secretariat as cancer nursing started to emerge as a speciality in many countries. Strategic development Kathy Redmond recalled how during her term of office, “EONS was a small organisation that was led by a highly enthusiastic board and an incredible administrator – Rita Cautley. These were difficult days.” Despite all of this, EONS managed to grow during this period and slowly start the transformation into the organisation it has become today. Yvonne Wengström, President in 2005 from Sweden, summed up the priority during her term of office as strategic development. She said, “When my presidency commenced, EONS had for some years grown substantially in membership numbers and the broader membership demanded that more work was put into identification of strategic goals in collaboration with the expanding Advisory Board.” Getting the internal structures right continues to be a major preoccupation. Decades after the founding members struggled with drafting the first statutes and constitution, EONS’ governance is still evolving. Yvonne Wengström’s presidency refined the CARE (Communication, political Agenda, Research, Education) strategy. It also made changes to the society’s constitution and by-laws, needed due to changes to UK charity law and to take account of EONS’ new operating structures, and to give the Executive Board authority to formally appoint an Executive Director since the society’s activities had grown considerably. More recently Past-President Sultan Kav, president in 2009 from Turkey, emphasised the work done to
Nicholas Owen
Rosette Poletti
Hansruedi Stoll
“EONS was a small organisation that was led by a highly
Elisabeth Holter
enthusiastic board and an incredible administrator” Kathy Redmond 21
improve the membership structure and move the Advisory Council meetings to other venues than Brussels. EONS set out then to be “truly a society of all national societies and represent ‘one voice’ for cancer nurses across Europe,” she said. Membership structures were adjusted again during the presidency of Sara Faithfull of the UK in 2007. “During my time the UK charity law changed and we needed to do a lot of work around our membership criteria to meet legal requirements and also to put in place a much more professional organisation,” she recalled. “The website was created during my presidency,” added Sara Faithfull, “as well as the online learning resources and some of the education. Every president has a little bit that adds on. It is not one person taking the lead, it is a team, it is the Board.” Education, advocacy, leadership This steady growth underpinned by a stronger and more professional administration meant that some of the core functions of EONS, such as education and advocacy, are now delivered in a more scholarly and expert manner. During the early years, EONS used the tools of the day to deliver the 25 scholarships awarded to assist nurses. But it is the steady collaboration with organisations such as the European School on Oncology which guided EONS into its subsequent development. Kathy Redmond recalls the signing of the Lugano Declaration, which laid the foundation for the highly successful Masterclass in Oncology Nursing, now in its 7th edition. “One of the projects I was most proud of during my presidency was the Learning to Live with Cancer programme which was eventually disseminated in over 15 European countries” she said. In 2005, EONS also launched the successful
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TITAN, TARGET, BREATHE projects and conducted surveys such as the GAEA and EPIC projects as well as the Guidelines Implementation Toolkit. Recent past-presidents played their part in addressing the changing role of nurses due to the shift in professional boundaries and what it means to defining advanced practice. Sultan Kav stressed the importance of raising awareness about the need to provide leadership and support, through training specialist nurses and providing blue prints for education and standards of practice within Europe. Birgitte Grube, President in 2011 from Denmark, also talked of the need for a definition of cancer nursing and for the specialty to be recognised at European level. “For EONS, education for cancer nurses has always been the cornerstone, and in this the identification of the need for specialised knowledge,” she said. Sara Faithfull thinks “expertise is crucial for the future and also measuring what impact that has for patients.” All past-presidents affirmed that today’s EONS
Above left: Sultan Kav and Birgitte Grube Above: Giel Vaessen Above right: Hansruedi Stoll, Kathy Redmond, Nora Kearney, Agnes Glaus Above far right: The panel of 11 past-presidents
WHAT MAKES A GOOD PRESIDENT? “Daring and being full of hope” Rosette Poletti “Courage and an ability to get thing done” Elisabeth Holter “Focusing on caring for patients and caring for nurses at European level” Hansruedi Stoll “Leadership – you have to be a good leader” Kathy Redmond “The patient must be at the centre of what we do” Nora Kearney “Endurance” Agnes Glaus “Listening and being fully committed” Giel Vaessen “Passion for cancer nursing” Yvonne Wengström “An ability to understand other people’s perspectives and cultural differences” Sara Faithfull “Being yourself, believing in what you do, and putting in all your heart” Sultan Kav “Open-mindedness and inclusiveness” Birgitte Grube
will continue to be in the vanguard of pushing out the boundaries of cancer nursing practice. They have all put in a huge chunk of their lives, something no one regrets. Birgitte Grube spoke on behalf of all her colleagues when she concluded, “Being a president is one of the best things I have done in my life. I wish it has been my daytime work. It’s such a huge experience and you learn so much from it. What I tried to do, is to say to people – wherever you are, whatever you are, you can always be part of EONS’ Board.”
I was involved in teaching the first Masterclasses when we all came together in Italy in Montecatini… There were teaching nurses and teaching doctors, and there were listening doctors and nurses in the audience, so each profession taught the other one – it was a new aspect… There was a slogan “learning to care” and I must say I still like it because it is about encouraging you to be curious, to be allowed to learn together at different levels and it sounds to me very much like a nursing slogan. Agnes Glaus, President 1999-2001
Anniversary roll call
DURING MY TIME...
People can only learn when they have real questions to learn. EONS provides societies with a lot of programmes and people can follow workshops and all these programmes. But we can do it better in the future in the sense that we should take care to disseminate our knowledge and teaching… We can develop an excellent European teaching model workshop but the challenge is to go back to your own country and bring it over to your own colleagues. Giel Vaessen, President 2001-03
Hansruedi Stoll (Switzerland) 1991-93
We were never in charge of anything, we were just invited. But when we got together in 1984 in Amsterdam, we found that we were many nurses from different countries and we networked. We were really happy to meet each other and we decided we should take things in our hands… To the people who were there we decided to organise ourselves and make a society. Rosette Poletti, Founding member and President 1984 Bob Tiffany died during my presidency and I was to represent EONS at his funeral. It was the saddest moment. A major highlight of my presidency is that I was allowed to sign the first curriculum of the European Oncology Nursing Society on cancer nursing. I was president, I signed it. Hansruedi Stoll, President 1991-93 The experience of EONS is something I would recommend to every single one of you, because it does really offer you something which you would not get in any other way, in terms of colleagues’ support but also in terms of stretching your ability to work at a very high European level politically and professionally – it was just an amazing experience. Nora Kearney, President 1997-99
One of the things that we did during my presidency was to actually ask patients what were their unmet needs. A survey of about 1000 patients reported that their needs were fairly specific across Europe...There was this sort of triangulation between what patients are saying they want and the educational needs to be matched up, and sometimes nurses do not always want what they should have. One thing with EONS is that it is like a family – you can’t leave your family. They keep coming back and asking for more. So I’m still working with EONS, thinking about education, and we still need to do more work on specialist nursing and develop this expertise. Sara Faithfull, President 2007-09
BBC news presenter Nicholas Owen interviewed 11 EONS former presidents. They were: Rosette Poletti (Switzerland) 1984 Elisabeth Holter (Norway) 1988-90
Kathy Redmond (Ireland) 1994-97 Nora Kearney (Scotland) 1997-99 Agnes Glaus (Austria) 1999-01 Giel Vaessen (Netherlands) 2001-03 Yvonne Wengström (Sweden) 2005-07 Sara Faithfull (UK) 2007-09 Sultan Kav (Turkey) 2009-11 Birgitte Grube (Denmark) 2011-13 Jan Foubert (Belgium) 2003-05 was unable to attend
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Understanding chemotherapyinduced nausea
Past recipients of EONS grants spoke at the Anniversary Event. Carole Farrell described her study on nausea induced by chemotherapy and its impact on patients’ quality of life.
Report by: Carole Farrell
Nausea seems to be the poor relation of symptoms associated with chemotherapy. We assess it, we score it, but do we really understand it, and how do we manage it? Although we are good at assessing patients’ symptoms and treating chemotherapy-induced vomiting, nausea is more complex and often underestimated by clinicians. These clinical questions, together with a lack of evidence on this topic, prompted our research study. Our hypothesis was that nausea exists as part of a symptom cluster (defined as three or more related symptoms); therefore patients’ symptoms may have a synergistic effect. The aims were to determine whether nausea is part of a symptom cluster, and to evaluate the impact on patients’ quality of life, psychological distress and nutrition. We undertook a prospective study over two cycles of chemotherapy using five questionnaires: Memorial Symptom Assessment Scale (MSAS), MASCC Antiemesis Tool (MAT), FACT-G, Hospital Anxiety and Depression Scale (HADS), and Patient Generated Subjective Global Assessment (PG-SGA). The sample size was 104 patients, aged 29-79 years (mean 53 years), with breast, bladder or ovarian cancer. Patients received ondansetron, dexamethasone and metoclopramide as prophylaxis for moderate to severe
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ANNIVERSARY
emetogenic chemotherapy. There was a relatively low incidence of vomiting (14.6% post-cycle 1; 9.1% post-cycle 2); however, levels of nausea were high (56.1% post-cycle 1 and 64.7% post-cycle 2) and levels of delayed nausea were even higher (74.1% post-cycle 1 and 75.4% post-cycle 2). Thirty-two concurrent symptoms were assessed after cycle 1 and 2 chemotherapy. Although ‘feeling nervous’ and ‘worry’ decreased over time, all other symptoms increased. Symptom clusters varied over time; however, core symptoms predictive of nausea were: vomiting, appetite loss, feeling bloated, taste changes, and lack of energy. Nausea plus two other symptoms were present in 53 of 58 patients after cycle 1, and in 39 of 44 patients after cycle 2. There was no significant association between nausea and psychological distress after cycles 1 or 2. However, nausea had a significant impact on nutrition and physical functioning, which was increased if a symptom cluster was present. The PG-SGA (nutritional screening tool) identified that 50% of patients were malnourished, although
EONS GRANTS HELP DEVELOP RESEARCH CAREERS This study was a collaborative project between the Christie NHS Trust and the University of Manchester, UK, and was sponsored by an EONS major research grant in 2008. Co-investigators were Alex Molassiotis and Sarah Brearley. The findings from the study are novel and clinically relevant, adding to previous knowledge on symptom clusters, and resulted in two publications.1,2 The grant award from EONS was of huge benefit to the author, enabling her to undertake research alongside clinical practice, which helped with her research career.
Carole Farrell
patients’ weight and BMI showed little change and may therefore not be useful measures to identify nutritional problems during chemotherapy. The results of this study emphasise the complexity of chemotherapy-induced nausea. They demonstrate that nausea exists within a symptom cluster; however, symptom clusters may change over time. Given their increased negative impact, it is important to undertake further research on symptom clusters to improve understanding and aid clinical management.
Details of the references cited in this article can be accessed at www.cancernurse.eu/ magazine
EONS ‘allowed me to grow’ Alessandra Milani, a research and medical
to be able to train, interact and share with
area nurse manager at the European
great nurses who helped me a lot. EONS,
Institute of Oncology, Milan, Italy, delivered
I thank you from the bottom of my heart.
a presentation entitled The Oncology
Thanks to your support, I was able to develop
Nursing Minimum Data Set: a new tool to
and conduct a major research project with
do research by taking care of patients.
some of my colleagues that could change
Alessandra said: “In Italy, nurses are not afforded the same status and consideration as in other countries, and more often than not do not have the same resources and
the way we deliver service here, too.” ●● Download Alessandra Milani’s full presenta-
tion at www.cancernurse.eu/communication/eons30symposium.html
support. EONS was, and is, important for me
Find out about appying for an EONS
because it allowed me to grow. It gave me
research grant at www.cancernurse.eu/
Alessandra
the same opportunities as in other countries
awardsgrants/eons_research_grant.html
Milani
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Mary M. Gullatte of the Oncology Nursing Society presents EONS President Erik van Muilekom with a framed proclamation
Working together is the key EONS values its relationships with its many partners enormously. Here four of our friends talk about the special bond they have with EONS. Mary M. Gullatte President of the Oncology Nursing Society (ONS)
A
t The Royal Marsden, London, the Board, staff and friends of EONS celebrated their 30th anniversary in royal fashion. A strong show of support was demonstrated by the past-presidents of EONS in attendance. The anniversary
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symposium was innovative, thought provoking, and set a vision for the future of the society. There were also a number of clinical and research posters on display. (See www.cancernurse.eu/communication/eons30symposium.html) The US Oncology Nursing Society (ONS) has a 30-year history of collaborative partnership and support of EONS, beginning with our first CEO, Pearl
Moore. EONS and ONS have a lot in common in the way we have both grown and the impact that both organisations have on transforming cancer care. I was honored to participate in this historic celebration as ONS president. A framed proclamation was presented to EONS from ONS to commemorate this historic milestone. Congratulations on your 30th Anniversary EONS!
ANNIVERSARY
Dorothy Keefe President of the Multinational Association of Supportive Care in Cancer (MASCC)
Susanna Leto di Priolo Head of Patient Strategy Haematology and Professional Relations, Novartis Oncology Region Europe, Italy
A
N
s President of MASCC, I was delighted to be invited to the EONS Anniversary Event. It was held on a beautiful, sunny spring day in London, and there was a real buzz in the air. Everyone was excited to be there and to catch up with EONS friends. I was really impressed by EONS’ ability to celebrate so well. For those of us who aren’t members, it was good to hear the history, and to feel the warmth for those special people who made it happen. The highlight for me was the past-presidents panel – what a wonderful way to celebrate history and to tell a story. I just wish it could have been twice as long so that we could have heard more from each speaker. Mind you, there were some excellent presentations and posters too, all contributing to the overall impression of an organisation that knows what it is, where is has come from, and where it needs to go. The combination of science, story telling and history was just right – and reconfirmed the vital role of the cancer nurse in all our lives. Congratulations from all of us at MASCC – and we look forward to many more years of collaboration on making the patient journey as good as it can be.
ovartis Oncology, a long-time partner of EONS, was invited to attend EONS’ anniversary. As the person responsible for the relationship with patients’ organisations, I have always appreciated nurses’ special care of patients. They are the confidant, the supporter and the everyday help for cancer patients in Europe. I was also impressed by the history of the Royal Marsden and its nursing staff. It was a real honour to be there, in a place driven by a genuine willingness to help sufferers. It was nice to meet EONS’ past-presidents too. Over the years, we agreed with several of them to support specific programmes to educate nurses in various disease areas. The largest programme was the GAEA project addressing the needs of breast cancer patients in the adjuvant setting. We also supported the second and third version of the TARGET educational programme. The fast pace of innovation testifies to the needs for continuous education in this specialised area and we are honoured to support a very comprehensive programme, educating oncology nurses on the variety of drugs and cancer targets they address. I wish EONS another 30 years of success in caring for cancer patients.
Greta Cummings President of the International Society of Nurses in Cancer Care (ISNCC)
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he ISNCC is so pleased to be able to share in the celebration of EONS’ 30th Anniversary in 2014, even if we could not be there on the day itself. Over the past 30 years, EONS has developed an impressive legacy of supporting and developing cancer nurses across Europe. Through skill development, networking and raising the profile of oncology nursing across Europe, EONS has developed a strong membership of national societies and individual members, and focuses on collaboration and partnerships to achieve its mandate. ISNCC’s mission is to maximise the influence of nursing to reduce the global burden of cancer by leading the global nursing community in cancer control. To achieve this, ISNCC focuses on the following strategic directions and goals: building and sustaining stakeholder relationships; influencing health policy; advancing and applying knowledge; developing and engaging cancer nurse leaders. We are so pleased to partner with EONS in many strategic projects that align with our shared vision for advancing nurses’ influence in cancer control. Working together in partnership strengthens all of our efforts. We congratulate EONS on their achievements over the past 30 years and look forward to ongoing collaborations and partnerships between our organisations.
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What EONS means to us EONS has 22,000 members in 30 countries, and is still growing. At our Anniversary Event, representatives from societies in Slovenia, Cyprus and Palestine spoke about their hopes and dreams and what being part of EONS means to oncology nurses.
SLOVENIA AND THE WIZARD OF EONS Katarina Lokar, from the Institute of Oncology Ljubljana, Slovenian Oncology Nurses Section, used metaphors from the film “The Wizard of Oz” to underline that being a member of EONS requires work and commitment on both sides. We come from Slovenia, a small EU country with a population of two million people. The Slovenian Oncology Nurses Section (SONS) is one of the professional groups within the Nurses and Midwives Association of Slovenia and is strongly linked to the Institute of Oncology Ljubljana (IOL), the only comprehensive cancer centre in Slovenia. The section was established in 1987 and has been a member of EONS since 1989. It is hard to describe what EONS means to us, since we go way back, and it is not just about the experiences of the Slovenian Oncology Nurses Section but also about the Institute of Oncology Ljubljana and my own experiences. That is why I decided to describe our journey with EONS as a story that I named “The Wizard of EONS”. My narrative borrows from “The Wizard of Oz” with a lot of artistic freedom from my side. In the original story, Dorothy travelled to the Wizard of Oz for help. She was joined by the Scarecrow, Tin Woodman and the Cowardly Lion. They all wanted different things from the Wizard. All four of the travellers believed that the Wizard could solve their troubles. This part is very similar to our initial experiences with EONS. My first close contact with EONS was in 2001. At the time, I could observe that different
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EONS members had different expectations and wishes. EONS meant different things to different members, but we all expected EONS to solve our problems. EONS Board Members had, in our eyes, a celebrity status, and we were in awe of them. Gradually we discovered that EONS was not a Wizard that would give us what we wanted and solve our problems with magic. Because of our faith in the power of EONS, we still wanted from EONS the things we thought we lacked. As EONS launched different projects and
Katarina Lokar of the Slovenian Oncology Nurses Section
“This story was about our past and present. On our journey we had many adventures and we overcame many obstacles together.”
ANNIVERSARY
The Board of the Slovenian Oncology Nurses Section
offered different opportunities, each member could find something for themselves. In the process we managed to improve our competences, build new skills and become more empowered. But we wanted more, because we felt that we could do more. EONS also realised that members should be more involved and that they should participate more in the story of EONS in order to achieve our common goal – having competent cancer nurses that provided competent cancer care. To achieve this, EONS developed a CARE strategy (www.cancernurse.eu/about_eons/strategy.html) and members could become involved on a different level. EONS also opened other doors to us, like changing the location of Advisory Council meetings to different member states, and other projects. This all provided opportunities for better bonding, learning about each other, finding common strengths and cherishing our differences. This story was about our past and present. On our journey we had many adventures and we overcame many obstacles together. At the beginning we lacked self-confidence and had doubts but, as we became more involved with EONS, we got empowered and started to believe in ourselves. In future, we need to teach other cancer nurses about the importance of self-belief and about the power that they have, and we need to encourage them to get actively involved with EONS, because with EONS we can do more and better.
PALESTINE – DEVELOPING FRIENDSHIPS
Mariam Samara
Mariam Samara Awad, Dean of Nursing at Bethlehem University, describes what a future as a member of EONS means to cancer nurses in Palestine.
Awad at work in her office at Bethlehem University
Monday 3 February 2014 was a historic day for cancer nursing in Palestine. This was the day that EONS welcomed us as a partner in this prestigious organisation. Being invited to join the European cancer nursing community through EONS is the most significant breakthrough to enable the longterm development of cancer nursing in Palestine. Here is why: - Palestinian nursing would benefit immensely from the input of EONS to its cancer nurse education programmes. - Palestine cancer nurse research needs to develop and EONS could assist with this and enable
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Mohammed Marie, Regina Ferrario, Mariam Samara Awad, Mary Wells and Gerry O’Hare celebrate Palestine becoming the latest member of the EONS family.
Palestinian nurses to apply for high-quality, EONSsponsored educational events. - Developing close links with other members of EONS would reduce our feelings of isolation and enable meaningful dialogue with our European friends. The prospect of acceptance by EONS has encouraged the formation of the first ever Palestinian Cancer Nurse Society. This will encourage collaboration and continuity of cancer care throughout Palestine. The number of applicants is increasing and we are in the process of registering the society. Joining with 22,000 other cancer nurses in EONS will enable us to join with other voices to press for improved cancer care for all patients across all communities. We look to the future with optimism and pride that we are accepted as the latest member of EONS, and look forward to contributing to EONS and developing friendships in the coming years.
CYPRUS – EONS FEELS LIKE BEING ‘AT HOME’ Andreas Charalambous, president of the Cyprus Oncology Nursing Society and an EONS Executive Board Member, assesses the impact EONS can have on a small but ambitious society. The Cyprus Oncology Nursing Society (CONS) was founded in 2010 and has, currently, 195 registered
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members. The society was launched during a difficult time for nursing care in Cyprus. The need for better organisation and delivery of cancer care, and for better educational preparation of cancer care nurses were some of the reasons why the society was founded. As we realised our limitations as a small society, and weighed the needs of our members, we quickly recognised the advantages in joining EONS. We feel that EONS has the experience, and the educational and financial resources that can help us fulfill our goals. Additionally, as members of this European cancer nursing family, we will be given the opportunity to exchange ideas, learn from other societies, offer our experiences and work collaboratively. Membership of EONS will offer our members activities such as Masterclasses or the chance to acquire advanced education (such as TARGET) and the ability to contribute through active participation in the various working groups. Cancer care is not currently a recognised specialty in Cyprus and this may be one of the greatest challenges for the society in the years to come. We hope to achieve this goal through the establishment of the nurse practitioner role in cancer care. We strongly believe that cancer care needs to be taught at postgraduate level, and in our attempt to achieve this goal, we have already agreed with the Cyprus University of Technology to provide a postgraduate (Masters) degree on specialised cancer care. Being a member of EONS is like being…at home.
ANNIVERSARY
Looking to the future: the next 30 years of cancer nursing EONS President-Elect Daniel Kelly rounded up EONS’ anniversary event with a presentation on what he thinks the society should be doing over the next 30 years.
Daniel Kelly began with a quote from the Belgian-US scientist Ilya Prigogine (1917-2003): “The future is uncertain... but this uncertainty is at the very heart of human creativity.” He continued by outlining what we know about the current landscape for oncology nursing and highlighting the pressing issues that will affect their work. He identified these as cost constraints and therapeutic innovations, rising demand and the complexity of patient profiles, a changing workforce, the open nature of knowledge and the raised expectations that cancer nursing would meet on the personal, professional and societal level. These new challenges would require a range of responses, including working differently within shifting models of care with increasingly targeted technologies and more delivery innovation. Developing leadership, creativity, knowledge and skills would also be important, as would the need for a shared purpose and collaborative approach. Practice improvement was likely to be a main driver too, with research as a core activity within services. Daniel Kelly then invited the audience
to consider key questions that might inform how EONS approaches the future: ●● Are cancer nurses functioning to their full ability? If not, what limits them? ●● What structures are needed to encourage innovation across Europe and beyond? ●● What alliances will be needed? ●● Is EONS itself a learning organisation? ●● What are its core values? Whatever the answers to these specific questions, one core principle prevails: personalised, effective cancer care must always be at the heart of what nurses do. Looking to the future, he outlined some important challenges and opportunities for EONS as it explores how it might develop over the next 30 years. We would need to ensure that we: ●● have a secure future in a changing context ●● balance the organisation’s needs and the membership’s expectations ●● harness expertise and collaborations ●● ensure we have the right level of communication and engagement ●● recognise volunteerism, and finally
●● build
on our legacy, remembering that we are creating the future today. Summing up, the President-Elect said that only half the story has been explored. The other half is the unfolding future and how we shape it. Ending on a lighter note, he suggested that “Although there is much to be done, we build EONS’ future together in a way that is enjoyable and adds fulfillment to our lives – we should ‘Keep Calm and Live, Love, Laugh’.” Daniel Kelly is Professor and Director of Research and Innovation at Cardiff University School of Healthcare Sciences, UK.
Presidents past, present, future – Daniel Kelly, Erik van Muilecom, Birgitte Grube, Sultan Kav
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