EONS Newsletter Spring 2011

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

Spr ing 2011

Theme:

E uropean Healthcare

Policy Cross-border healthcare

Planning for workforce change

Does the NICE model work?

by: Petra Riemer-Hommel

by: Sara Faithfull and Denise Cullus

by: Amanda Owen-Smith, Joanna Coast and Jenny Donovan

Contents

Spr i ng 2011

EDITORIAL Editor-in-Chief: Clair Watts

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LATEST NEWS

Production Editor:

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A message from the Board

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Learning about cultural differences

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Europe pulls together to fight cancer

Jim Boumelha Editorial Assistants: Catherine Miller, Rudi Briké Art Editor: Jason Harris EONS Secretariat:

HIGHLIGHT

Avenue Mounier 83, 1200 Brussels, Belgium Phone: +32 (0)2 779 99 23 Fax: +32 (0)2 779 99 37

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e-mail: eons.secretariat@cancernurse.eu Website: www.cancernurse.eu

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EONS acknowledges AMGEN (Europe) GmbH, Oncology, Nycomed, Pfizer Oncology, Hoffmann-

The role of the Macmillan Oral Health Practitioner EHMA congresses: nurses at the heart of change

INTERVIEW

AstraZeneca, Merck KGaA, GSK, Novartis La Roche, Sanofi-Aventis Groupe and Spepharm

Shaping a Better Future by Clair Watts

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Nursing as leadership: passionate about care

SAS France for their continued support of the

FEATURES

Society as sustaining members.

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The manager’s mum

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Cancer networks in Italy: early experiences

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Cross-border healthcare

Domanic Li

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Planning for workforce change

Disclaimer

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Does the NICE model work?

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What does a specialist nurse mean across Europe?

Print run: 2000 copies Electronic version accessible to 24000 EONS members Design and production: © 2011 HarrisDPI. www.harrisdpi.co.uk Cover Illustration:

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 translated materials contained within this edition of the EONS Magazine. © 2011 European Oncology Nursing Society

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The aim of the EONS Magazine is to provide a written resource for European nurses working in cancer settings.

The content of the articles is intended to contribute to the growing body of knowledge concerning cancer care.

All correspondence should be addressed to the Editor-in-Chief at: eons.secretariat@cancernurse.eu

Editorial

Editorial

Clair Watts, Executive Director

Shaping a

Better Future

ffective health policies can change people’s lives for the better. The impact may not be as instant as delivering care to a patient, yet it can be far more widereaching. Whether you are a specialist nurse advising a patient on a ward, a student nurse training at college or an advanced practitioner participating in a community team, what you will or will not be able to do often depends on what the European, national, regional, professional or institutional rules say on the subject.

In this edition, we delve into a range of topics around the theme of European healthcare policy.

Petra Riemer-Hommel, who provided the opening plenary talk at last year’s EONS congress, updates us on developments in the agreement of a European cross-border healthcare directive, taking us through the legislative, financial and bureaucratic difficulties that often slow political agreement.

Denise Cullus and Sara Faithfull look at the future of Europe’s healthcare systems and consider what should be done to address the shortage of specialist nurses that has long been predicted, while Franzisca Schneider and Sara Faithfull share the results of an Erasmus study developed with EONS members to examine what the term “specialist cancer nurse’’ means across Europe – they give some thought to how that role might develop in the years to come.

A face-to-face encounter with Dutch cancer care is described by Rob Koning on as he shares a personal experience of the ups and downs of his mother’s diagnosis and treatment. Marco Sartirana gives some of the answers for us all in explaining how Italy is building

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a coordinated system in its regions to plug the system gaps and provide better treatment and care for patients.

What has struck me in developing this edition is the key role that nurse leaders need to play in transforming public health policy, yet just how few, seem to want to engage despite their evident skills.

Nurses need to provide a strong voice in all healthcare policy debates. They are a major cog in the wheel that is the healthcare system, creating educational programmes to train nurses in 21st century skills, developing novel prevention campaigns and strategies for team working in complex environments – where people lives are at stake. This is exactly the level of practicality and creativity that policymaking demands, but is so often lacking.

It has long been known that homogeneous groups of people do not make the best policymakers. It needs a diverse group of people, with varying perspectives, expertise and knowledge to develop the ingenious, fresh ideas necessary to shape an effective policy and make the difference in life. Policy development is not just for political science experts or keen oncologists; it needs the voice of the specialist cancer nurse, the psychologist and the pharmacist alike. Policy development is the same as clinical care – it needs teams of experts working together in order to reach the right outcome.

Whether you decide to join a hospital forum, a national regulatory council or a European working group, I would urge every oncology nurse to consider taking part. Oncology nurses, the policy world needs you!

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A Message from the Board Reviewing member societies benefits was the major issue of discussion at both the November and February Executive Board meetings. The Board endorsed a proposal from its membership options task group that EONS membership should be automatic for all national society members.

As well as assisting with creating nursing societies where none are available, member societies will receive enhanced benefits if they provide EONS with a basic membership list every year.

Further decisions were taken to assist societies to build membership by offering training in IT skills through an online education programme and reducing the fees

of those societies in countries where GDP was 75% or less than the European average.

EONS continues to be involved in major partnerships, including ESO-EONS Masterclasses and e-grandrounds, the translation and Europeanisation of the ONS PEP’s as a deliverable of the EPAAC project, and the EONS Skin Cancer project to list just a few. EONS is also engaged in several collaborative patient projects; ISNCC Tobacco Cessation project, helping with the ‘Learn, Share, Live Better!’ project in Romania as well as contributing to several ECPC meetings and workshops.

Applications to the TITAN Dissemination Award and the Mentoring Research Grant

were discussed. The Board agreed to proceed with the Novice Researcher Award, and to discontinue the Distinguished Merit Award. A new more global initiative involving nurses and patients, the Lifetime Achievement Award, was established.

Finally, the Board agreed that, in order to be more accessible to members, the movement of governance meetings around Europe would be piloted and President Kav offered to host the May Board meeting in Ankara, Turkey.

Ulrika Östlund, Board Secretary The contact details of EONS Board members are available on the EONS website.

Join us at the congress ECCO – the European CanCer Organisation – in partnership with its founding members EONS, ESMO, ESTRO, ESSO, EACR and SIOPE, is organising its 2011 European Multidisciplinary Cancer Congress, in Stockholm, from 23th to 27th September.

The Executive Scientific Committee, the Organising and Scientific Programme Committees look forward to taking this opportunity to meet with EONS nurses.

If you haven’t already registered or are interested in more details, please visit: www.cancernurse.en/communications/em cc2011.html

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Over 300 delegates from 35 countries converged on Madrid on 25th February to attend the second Skeletal Care Academy 2011. The Continuing Medical Education-accredited event received support from nine society partners and consisted of a mixture of plenary and specialist sessions, workshops and networking opportunities for physicians, nurses and patient advocates. It aimed at building a wider knowledge of the scale of cancer-related bone disease and the importance of bone health in patient care.

A core element of the programme discussed the benefits of nurse specialists in osteoporosis and the role of nurses in assessing/monitoring patients with cancer treatment-induced bone disease and bone metastasis. Role plays focusing on multiple myeloma, prostate and breast cancer reflected on nursing intervention strategies in real-life scenarios and, in the market place, delegates attended highly interactive workshops covering key areas of bone health.

The event, sponsored by Amgen and Ferring Pharmaceuticals, concluded with a panel discussion of topics that arose during the event. As one of the panel members highlighted, “We have many tools and treatments available to us now. We must learn to use them more effectively”.

Amgen, CECOG

Second Skeletal Care Academy 2011

LATEST NEWS

Learning about Cultural Differences I met Dr Cody and nurse Fran Spiro at the Memorial Sloan-Kettering’s new Evelyn H. Lauder Breast Cancer Center on 300 East 66th Street in Manhattan.

Hailing as I do from a little town in Norway and a tiny 500 m2 breast centre, the 16-floor building seemed awesome. I was introduced to the surgical department and attended patient consultations with Dr Cody and his assisting nurse.

The first thing that struck me is how patient care and communication between surgeon and patient seemed exceptional. Despite time being short because of the heavy workload, one could sense a certain calmness and trust between patient and doctor, a central tenet of the Sloan Kettering’s philosophy.

I also attended patient consultation with three other surgeons’ and nurse practitioners.

Each surgeon was specialised in a specific field – DCIS, ductal or lobular breast cancer, or precancerous lesions – giving the patient targeted information about the best treatment choices, surveillance and follow-up. Being a private hospital, it was clear that patients were treated as “clients” according to their private health arrangements. The more expensive the health insurance, the better service you got from the doctor and his/her team. I was reminded of this, since no patient was seen before they had been to the Financial Service Department where medical insurance is checked and registered before the consultation can go ahead.

After consultation with the surgeon, the nurse “teaches” the patient in a separate room all they should know before and after surgery. Patients are asked to bring a relative or close friend, not just for support, but also as a witness. The US system requires patients to sign, in front of a witness, that everything is understood and agreed upon – something not practiced in Norway. Among

Mette Amundsen, an oncology nurse from Vestfold County Hospital in Tønsberg, Norway, wanted to learn more about cultural differences between Norway and the US in attitudes towards breast cancer care. An EONS Clinical Travel grant gave her the opportunity of a lifetime to visit one of the world’s most renowned cancer centres in New York.

Harlem, which provides services to low-income women without health insurance. If diagnosed, these women will get exactly the same treatment as any paying patient. I also visited its downtown facility, the Guttman Diagnostic Center, where biopsies and other investigations can be done, either by referral from family doctor or from the Harlem centre. I was impressed by the work of the Nurse practitioner, a role still unknown in Norway.

My final visit was a tour of the Integrative Medicine Department in Bendheim which felt more like a quiet spa designed to give a feeling of serenity and well being. Coming here for a massage or yoga session is a respite for many patients and caregivers amid a period of stress and anxiety (for more information see www.mskcc.org).

the list of do’s and don’ts, I noticed advice about “How to prevent falls” which underscores the importance of liability in a private health system.

I attended the weekly multidisciplinary meeting on the 9th floor, where around 50 participants met to discuss the difficult cases and a scientific lecture is held during the last 30 minutes.

Several other services were on offer at the centre: A therapeutic setting art therapy and social work The centre provides pioneering, comprehensive services, psychiatry services, breast cancer prevention, diagnostic, treatment rehabilitation and nutrition and supportive services that go beyond the services, a special surveilstandard care, all under one roof. The facility, lance breast programme, and designed to make the patient experiences less a boutique amongst others. daunting and to enhance interaction between During my stay I visited patients and their care team, empowers patients the Sloan-Kettering’s outto become active partners in their own care. reach programme, the Breast Examination Center of

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Europe Pulls Together to Fight Cancer The European Partnership for Action Against Cancer held its inaugural meeting in Dublin last March. The initiative gathered over 300 organisations in a joint effort to improve Alamy

prevention, early detection and care of cancer patients and survivors across Europe.

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Clair Watts

diagnosis), and WP9 (information & data) as well as deliver a project in WP7 (healthcare).

In WP7 EONS and European Health Management Association (EHMA) will work collaboratively to deliver part of the project.

Anita Margulies and Sara Faithfull will lead a EONS project in work package 7 (WP7) that will review the variability in health services and the outcomes of care.

Sharing best practice is a key message and using evidence-based guidelines are objectives of this work stream. Evidence-based guidelines are often not put into practice, hampering improvements –

this will be explored from both a managers’ perspective with the EHMA and also clinically at ward level.

In collaboration with the Oncology Nursing Society of the USA, EONS will europeanise and translate the “Putting Evidence into Practice” (PEPs) tool designed to promote the incorporation of clinical guidelines for managing cancer symptoms into nursing practice (http://www.ons.org/Research/PEP).

This EU project will also support workshops on how to implement better cancer symptom management using clinical guidelines.

They will provide tips for practice development and overcoming barriers to using clinical guidelines. Anyone interested in participating should look on the EONS website for more information. (www.cancernurse.eu/advocacy/epaac.html)

EPAAC

The Partnership is a unique model of collaboration that brings member states together with NGOs, researchers, patients groups, industry and national authorities across the EU in a collective effort and with a common commitment to addressing cancer.

The focus is to reduce the burden of cancer through the EU in a variety of areas, from health promotion and prevention, to screening and early diagnosis, cancer-related health care, coordination of research and cancer information. This partnership approach will help to avoid scattered actions and the duplication of efforts. The overall plan is to support member states in development of cancer plans and reduce inequalities in cancer screening, treatment and supportive care.

The major goals of the European Partnership for Action Against Cancer are two-fold: ● To help all EU countries tackle cancer more evenly and effectively by sharing information, resources, best practice and expertise ● To avoid fragmented and duplicated effort and maximise the limited resources available - by coordinating action on cancer involving member countries, scientific experts, patient organisations and other key stakeholders.

To accomplish this, the EPAAC project has been divided into 10 Work Packages.

EONS will contribute to WP6 (screening &

European Partnership for Action Against Cancer Joint Action

Health Promotion & Prevention | Screening & Early Diagnosis | Healthcare Cooperation & Coordination In Cancer Research | Cancer Data And Information | National Cancer Plans

u/ e . c a k a o p o e . b w e c w a w F / / : n p o htt tion c A t in o J s!

C u A e k A i L EP

This Joint Action has received funding from the European Union, in the framework of the Health Programme.

Emma Riley became the first Oral Health Educator in the UK when she took up the newly-created post at the Maxillo-facial Unit at the Pennine Acute Hospital NHS Trust in North West England.

She describes what she does

The Role of the Macmillan Oral Health Practitioner and the impact she has had.

Emma Riley

The post of Oral Health Educator is unique in England and a source of great pride, as I see a clean, pain-free mouth as a right for all patients. Previously, faced with a large proportion of patients diagnosed with head-and-neck cancer, staff often reported a lack of training and understanding of the conditions that affect the mouth and of the impact of poor oral hygiene on a patient’s quality of life.

A large part of my work is to develop the role and to champion the need for effective mouth care amongst patients. Poor oral hygiene can also affect treatment for cancer – patients with oral mucositis are four times more likely to have unplanned breaks in radiotherapy treatment, with the potential to reduce the effectiveness of treatment, which can lead to – or prolong – hospital admission.

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Oncology patients suffer a great deal with problems with mouth problems, but these often seem to be accepted as “par for the course” by both patients and professionals. Dry, painful or ulcerated areas elsewhere on the body seem to be given more importance, but when they are in the mouth, it appears they are often considered as an effect to be expected, and not given the priority and attention they

deserve. The impact on patients’ quality of life is often not appreciated, and a large part of the role of the Macmillan Oral Health Care Practitioner is to highlight this to patients, relatives and staff.

I quickly became aware that ignorance of the impact of problems with oral hygiene was an important factor preventing staff from providing effective oral care. To try to overcome this, I developed a section

Macmillan Cancer Nursing

HIGHLIGHT

Staff often report a lack of training and understanding of the conditions that affect the mouth and of the impact of poor oral hygiene on a patient’s quality of life.

CASE STUDY Mouth care should be a core component of cancer nursing care.

Alan, aged 63, was diagnosed with a large squamous cell carcinoma of his tongue, and underwent removal of the tongue and post-operative radiotherapy in February 2009. The surgery meant that he has trouble swallowing and he is therefore fed via a percutaneous endoscopic gastrostomy tube (PEG), directly into his stomach. He also has difficulty communicating due to the surgery. On discharge, Alan was supplied with a suction machine, and his wife was instructed to keep his oral cavity as clean as possible. Although it was arranged for a district nurse to visit him, she was neither comfortable nor confident in attending to his needs.

As Alan could not take food or drink orally, his mouth became very dry, and

Figure 1. (top) Emma cleaning Alan’s mouth Figure 2. (right) The mouth Alan had on a daily basis

often bled (Fig. 2). His wife found it difficult to clean his mouth with just a toothbrush and suction machine.

Furthermore, the bad odour from his mouth made talking, kissing and hugging increasingly difficult. This had an impact on Alan’s quality of life, and he began to lose interest. He was then asked to attend a nurse-led clinic every other week where the Macmillan Oral Health Care Practitioner would clean and lubricate his mouth (Fig. 1).

After 8 weeks, Alan made tremendous improvement and his mouth is now clean, pink and moist, with much less bleeding. His visits to the clinic were reduced to monthly. Alan is now a different person – his wife says he is now trying to communicate even though he is without a tongue, and seems to be embracing life a little more.

on oral care on the Trust’s intranet site, which includes basic dental anatomy, as well as a list of conditions that affect the mouth and how they can be treated. The section used colour photographs to make it easier for staff to understand, and included the Trust’s mouth care policies and information about oral hygiene products.

The site has been a huge success and incorporates a link nurse with a member of staff accessing the site regularly and cascading any relevant information back to the ward staff.

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EHMA Congresses:

Nurses at the heart of change 30 June - 2 July 2010, Lahti, Finland & 22 - 24 June 2011, Porto, Portugal Across different countries and different systems, health leaders are facing the need to look for radical change in how healthcare is delivered. The annual European Health Management Association (EHMA) congress provides that forum for discussion. ach year around 200 nurses, doctors, physiotherapists, patient representatives, researchers, funders, health economists, policy advisors, project managers and finance directors converge on the EHMA annual congress from every corner of Europe.

They come to learn more about how they could think more creatively and change practices in their hospitals, government departments and universities, regardless of the limitations imposed by finance, health care structure and changing demographics.

Workshops, master classes and symposia are designed to bring this diverse group of health managers together in ever-changing combinations so that they can challenge one another’s thinking and ideas of ‘normal’ practice. Participants are asked to find solutions to scenarios that even the most seasoned change manager would find challenging. The best solutions involve difficult choices and participants were often left wondering whether

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they would dare take such decisions in real life?

The impact of the financial crisis on the health care services naturally led into the topics of healthcare re-organisation, consolidation and integration to deliver patient-centred care. Cross-border initiatives were explored in preparation for new EU policies. The cooperation that is so essential in delivering highquality and efficient health care across borders, appeared, even in 2011, challenging.

The 2010 event, attended by Sara Faithfull and Clair Watts, highlighted the work of EONS as well as the importance of the nursing role in the healthcare

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debate to this new audience. The Prometheus project, an EU study model into the mobility of health professionals, was a topic of especial interest as it examined the scale and flow of movement of health professionals around Europe, patients’ legal ‘right to health’ and the ability of healthcare systems to deliver the preventative, curative and palliative services needed. The role of the patient in leading change in processes and the co-development of change models with patients were investigated, as well as the need to find practical and pragmatic solutions.

The 2011 event featured a pre-conference symposium entitled “Proud to care: building organisations that care for older people well’’ where Françoise Charnay-Sonnek shared her perspectives of the French healthcare system and highlighted EONS education tools to the multi-professional audience.

What can be said of these events is that even though the topic of the congress changes each year, issues are never country-specific; everyone shares the same problems no matter what the healthcare structure, funding model or budgetary constraints. It also highlights the necessity for practical, innovative leadership to deliver quality future health services, and for programmes that build capacity at managerial level ensuring that decisions are made on the basis of sound evidence.

Last, and definitely not least, it reminds us of the importance of listening to each other before taking the important decisions that put the patient’s needs at the centre of the healthcare system.

Clair Watts

INTERVIEW

Nursing as Leadership:

Passionate about Care The King’s Fund UK provides leadership development for nurses to help them to become leaders. The Aspiring Nurse Director programme is one such course that encourages learning through leadership development and supportive networks, promoting clinical leadership. Sara Faithful interviews one past participant, Lesley Marsh, who highlights the value of clinical nursing leadership.

Are there enough nurse leaders in clinical teams?

Having started in oncology and moved recently in older people care, Lesley felt more could be done to improve the role of nurse leaders in clinical settings: “It’s a very mixed picture. We’ve got pockets of excellence where nurses remember that patients are at the centre, coordinate their multidisciplinary team colleagues, promote nursing, excellent practice and make quality central.

We have other pockets where that doesn’t happen at all and there isn’t the true multidisciplinary teamwork”. She suggests a possible reason for this lack of clarity might be: “it is about us not being clear about roles and role definitions. If you ask patients they know what a nurse, a sister or a matron are.

Sometimes the various roles and different job titles, uniforms and everything else cause confusion amongst multidisciplinary teams and for the patient. I think that can detract from who actually is in charge here.”

Are nurse leaders visible to patients?

Visibility at a clinical level is essential: “I think that patients see nurses in a leadership role within clinical care... if you’ve got good role modelling and you’re clear about who is in charge, you will have met with those patients and relatives and explained your role, then I think we have excellent leaders but I think equally there are others that tend to hide.”

Nurses often underestimate the importance of their role in care: “I don’t think we are good at articulating what we do, so I think there is something about our own image. If you take the individual nurses as well as the public perception of their image, there has been a huge piece of work done in London which showed the image of nursing as incredibly popular and very positive but the image of nurses is not. I think this is because the public heard so much about bad health care and accidents (poor care and quality) that pre-

dominately sits at nurses’ door. Within our own profession, we are not good at selling what we actually do.”

What are the differences you see in leadership between cancer and older people care?

“I think it’s a speciality that nursing has taken on and is seen as important nationally.

Everyone’s heard of cancer, so it’s in the public eye and there’s lots of research behind the scenes. So it’s very much in your face, and nurses that work in that speciality are very highly regarded. Cancer qualifications and development and specialist nursing roles are something to aspire to. So if I compare it to for example to dementia, even though it’s a much bigger killer in the UK and a much bigger problem, it doesn’t have anything like the same prestige. Part of that is the association of dementia with older people so it becomes the Cinderella service again. But it’s not comparable even though in some ways it should be.”

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Is nurse leadership easier in an oncology field?

Lesley feels that oncology is more advanced: “I’m not sure it’s necessarily easier.

Whereas there is still the perception that if you work in oncology, everybody’s answer to that is ‘oh that’s great’. But if you work in elderly care quite often you still get the answer of ‘well couldn’t you have done something better than that’.”

If you were talking to a clinical oncology nurse working on the ward who showed potential of clinical leadership are there things you would recommend that they could do to develop their leadership skills?

“Absolutely, I think it’s to shadow someone who is senior. Go and find out who are the leaders in your organisation that other folk and you admire. Go and spend some time with them, get yourself a mentor. But I think this is really important and everyone says we are too busy – it’s language I think we should ban, really because this is about you and your development, and you’ll make it better for patients if you do.” Lesley gives

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The King’s Fund

What skills did the leadership course provide?

“I had been deputy director of nursing for six years and was looking for a course which would help me identify whether I wanted to be a director or not... I got a bit of understanding but acting up isn’t the same thing as doing it, so I felt there were gaps in my own knowledge. I felt I wasn’t there yet but I couldn’t tell you what it was I needed to get there, so this opportunity came up. I think it was really useful because it made you think about what you’d done and what you wanted to do and why? I wanted to have the independent opinion of my own progress and development and where I needed to go and what I was good at. The programme made me look at my own leadership style and gave me a lot more confidence personally about where I was... It was a huge boost and during some of the policy discussions and debates that we were having I was surprised by how much I knew. I have got much more confidence to actually describe my leadership style because I felt it’s backed up by evidence.”

the example of “just by going to shadow what does your director of nursing do or, what the clinical governance lead do in their work, you have a better understanding of roles and processes and you can look at how other people can manage and lead their teams.”

A final word from Lesley is that nurses should see themselves as possible leaders.

“We need to change the image of managers because leaders are seen as much more positive but actually we need both. And leaders need to have good management skills as well.”

Global Emerging Leaders

www.globalemergingleaders.org Sign up today, log in, and create a profile for free access A Worldwide View of Health Care Global Emerging Leaders is a web-based community of health professionals. We know that similar issues affect health systems internationally and believe the sharing of ideas and experience is essential to the development of a successful career and successful health service provision.

connect

to health care professionals around the world to discuss current issues and ideas

leadership

accessed via hundreds of video tutorials from Harvard Business School

knowledge

available through blogs, news and an extensive archive of articles and country profiles

a partnership between

The Manager’s Mum

M

Rob Koning shares with us the story of his mother’s diagnosis and treatment.

Rob F. Koning

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y mother is 80 years old and lives all by herself in a beautiful apartment in one of the suburbs of Amsterdam – “my very own penthouse” as she prefers to call it. About a year ago she was referred to a lung specialist by her GP with mild complaints of pain in the chest. An X-ray was taken and we went together to the specialist. The X-ray indicated a possible tumour. Within a short timeframe a bronchoscopy and a MRI scan were scheduled. The diagnosis was a localised, small-cell lung cancer, with no metastasis in the lymph area. The suggested treatment was a combination of chemotherapy and radiation.

From that moment on we all boarded the rollercoaster. All of a sudden my mother became a patient and I became the son of the patient. Confused, we went together to the specialist in the local hospital.

Fortunately this hospital had a couple of specialised oncology nurses. Immediately after hearing the bad news from the lung specialist, one of them took us to her office to discuss the future. For my mother and for the children who supported her, she became a very important person. There was a person, the oncology nurse, with a face, enough time and a lot of practical experience with cancer treatment, and most important a mobile phone number. She took care of the coordination of the various aspects of the treatment. For instance, before the start of the chemotherapy a blood sample had to be taken. Although that had to take place in a different department of the hospital, the oncology nurse informed the staff and my mother was received as a queen and given priority. Chemotherapy treatment took place in the same hospital and was organised by the

principal specialist. There were hardly any problems with timetables, medication or transport. A personal file was swiftly created and put in the hands of my mother.

In it all relevant treatment data and appointments were registered. As a manager myself, I was impressed to see how the various departments of the hospital were able to co-operate thanks to the treatment pathway, coordinated by the oncology nurses.

In the mean time, we all learned more about lung cancer. Through the internet I informed myself about the life expectancy and the common treatment protocols.

Speaking with friends and relatives, my mother realised that something serious was going on. She told me how she wanted to preserve the quality of her life and did not want to become dependent on others. She has serious

Oscar Gimenez

F E AT U R E

doubts about the preventive treatment involving radiation of the brain, after completion of the localised radiation therapy. She feared the side effects of memory loss. More generally, we started preparing ourselves for the worst possible scenario, death.

When the radiation therapy started, my mum was referred to a specialised cancer hospital.

She attended therapy as an outpatient five days a week.

The planning and implementation of the radiation sessions was almost completely computerised, with barcodes, process checks and all.

Fortunately there was also a specialist nurse who paid attention to my mum as a person and focused on her condition. I liked the way in which he was able to relate to my mother and comfort her. I was surprised to see that he was there very frequently. There were minor changes in staff shifts, so the nurses were able to build relations with their patients.

She became known as a person and recognised as such. For my mother it was very important to see the same nurses during the whole treatment period, particularly because her condition and her appearance rapidly deteriorated. But with familiar faces around, this made her feel relatively comfortable.

There were some difficulties however. One problem arose around medication. Like other cancer patients, my mother suffered from nausea. As prescription of the appropriate medication was the responsibility of the specialised cancer clinic, because of their expertise, the first problem was that they had no accurate information about all the other prescriptions. Fortunately, my mother had kept track of all the medication she received, handwritten on a piece of paper. The registrar at the clinic asked her permission to photocopy this information. In an age of electronic data it was indeed surprising to see the patient becoming the real record keeper. The second problem arose as a result of the diversity of medication my mother used, which created an adverse effect only detected by the local pharmacist.

When we asked the oncology nurse at the general hospital to help, she felt unable to intervene because of the cancer hospital’s policy regarding medication. We had to ask my mother’s GP to take care of the coordination.

Another issue that emerged during the treatment concerned decision making. Following diagnosis, the principal specialist suggested a specific combination of treatments, in line with a standardised protocol. Part of the protocol is preventive radiation of the brain, a couple of months after the focal treatment. Long before this preventive treatment my mother started to get apprehensive, and during the treatment she expressed serious objections, as she feared it might affect her mental abilities. When she raised this question with the specialist at the cancer institute, the answer was very curt – just adhere to the protocol and do not worry.

When she put the question to the oncology nurse at the general hospital, to our surprise she referred her back to the cancer institute. My mother was not comfortable at all in discussing the risks of the protocols, as this was the expert field of the specialised institute. In fact nobody at the institute wanted to be involved in this discussion presumably on the grounds that empirical evidence leads to best possible treatment protocol and the best survival rate. But my mother wanted to make a balanced decision and wanted some support in deciding how to weight the pros and cons in a complex equation.

Surviving was not her only objective. It was a difficult decision and she would have appreciated some professional help.

The treatment was completed about eight months ago.

My mother still lives on her own and has gone back almost completely to her previous life. Her hair has grown back again, and although she is physically still weak, mentally she has regained her strength. She enjoys the company of her newly-born great grandchildren and, a couple of weeks ago, we were able to take her out for a short sailing trip in a tall ship on the North Sea. And every three months we accompany her to the specialist in the general hospital to learn about the future.

There was a person, the oncology nurse, with a

face, enough time and a

lot of practical experience

with cancer treatment, and most important a

mobile phone number

S i n c e w r i ti n g t h is a r t i c l e , R o b ’ s m u m s a d l y d i e d . H e a g r e e d t o s h a r e w i t h u s t h e a r t i c l e i n la s t i n g m e mo r y o f h i s m o t h e r.

15

Cancer Networks in Italy Early Experiences As part of a global trend, one of the most

recent innovations in cancer care has

been to bring oncology communities

together to build a better, more

coordinated system of patient care

through regional planning and action.

In Italy, legislation was passed to transfer

power from government to the regions,

resulting in the launch of some of the first cancer networks in Europe.

R

Marco Sartirana

egional cancer networks first came to prominence ten years ago according to the Strategic Health Plans of some Italian regions. They evolved over the years and are seen today as the solution for increasing quality of care and equity of access, for fostering knowledge transfer among professionals and especially for managing public resources more effectively. The steady progress of the network was summed up by the managing director of the cancer network of Tuscany, one of the largest regions of central Italy, who said, “When in the late ‘90s I started talking about regional cancer networks in Italy, people smiled with sarcasm. Nowadays they take down notes.”

A more rounded and detailed analysis of these networks was launched by researchers from the Centre for Research on Health and Social Care

16

Management (CERGAS) of Bocconi University, and is still in progress.1 In interviews with the networks’ managing directors and from analysis of the regional decrees, Lega and Tozzi2 found that cancer network projects had been launched in 15 out of 20 Italian regions, underpinned by the 2001 reform of the Fifth Title of the Constitution. These reforms transferred responsibility to provide healthcare from the state to the 20 regions, devolving to them the strategic planning and control over the 200 local health authorities, the 100 independent public hospital trusts, the research and teaching hospitals and the private accredited hospitals.

F E AT U R E

REGIONAL DEVELOPMENTS

Fintastique / Alamy

The researchers found that only six cancer networks are functioning effectively – Tuscany, Piedmont and Valle d’Aosta, Romagna, Lombardy, Friuli Venezia Giulia and the Trento province. In another five regions – Liguria, Basilicata, Lazio, Marche and Umbria – cancer networks have been set up but have only partially been implemented while in other four – Abruzzo, Calabria, Puglia and Sardegna – the setting up of cancer networks has formally been announced but never been realised.

The two first cancer networks of Tuscany and Piedmont, dating back to year 2000, recall many features of the UK model – the hub-and-spoke hospital reorganisation, the creation of tumour groups

and collaboration with primary care. Access points have also been introduced in oncology units as front offices of the network services. In both regions, each with a population of about 4 million, a lower managerial administrative tier has been identified, with catchment areas of 700,000– 1.5 million inhabitants each.

The development of the network was driven by the Regional Health Department, but was strongly favoured by oncologists, since their discipline was perceived to be “weak”, and the outcomes inappropriate in terms of quality and equity of access. After the development of the networks, the number of oncology units increased from four to 13 in Piedmont and from two to 16 in Tuscany.

The network of Romagna, one of the districts in the Emilia Romagna region, turned out to be quite different. Created in 2007, it arose out of the initiative of the four Local Health Authorities, without the participation of the regional level. Its development is directly connected with the setting up of a brand new cancer centre, which entailed a major centralisation of services.

However, it did not impact on the standardisation of care processes in the existing cancer units. In this case, the professional community sponsored the initiative, due to the acknowledgment of one physician’s clinical leadership and due to the desire to create a centre of excellence in cancer care – Romagna was the only district of the region lacking a teaching hospital, and had been experiencing negative patient mobility rates.

Lombardy presents a contrasting model. Being the largest and richest region in Italy, comprising multiple cancer centres of excellence, Lombardy is characterised by a purchaser–provider split and by internal competition among providers. In this case, the goal of the Regional Health Department has been to create an integrated information system to control prescribing practices (and as a consequence regional spending) and to share patients’ medical records. As a consequence, the network had virtually no impact over the centralisation of services or the standardisation of pathways.

These, together with the networks of Trento and Friuli Venezia Giulia, are the four most developed

The Italian model The SSN (Servicio Sanitaris Nazionale) was established in 1978 and modelled after the British NHS. It covers the entire population, is taxfunded, and provides most care free of charge at point of service.

The SSN has three tiers: the central government at the top; 21 regional governments in between; 180 ASL (Aziende Sanitarie Locali) at the bottom.

Source: CERGAS Centre for Research on Health and Social Care Management

17

“When in the late ‘90s

I started talking about

regional cancer networks

in Italy, people smiled

Emilia-

with sarcasm. Nowadays

they take down notes”

projects. Cancer networks in other regions, only partially or not yet implemented, have taken as a reference the UK-Tuscany-Piedmont model, since it provides important leverage for clinical governance and should increase quality and equity of access to the system. However, there is a risk involved in mimicking other models too closely, without taking into consideration the facilitating conditions that accompanied the development of those networks. The researchers found a perceived need to increase quality or equity in the system, due to the diffusion and effectiveness of oncology units, but also a need for strong clinical leadership and professional cohesion. If these conditions are not present, as in regions with multiple centres of excellence (e.g. Lazio) or where the professional community is fragmented (as is the case in some regions in southern Italy), a single regional UK-like organisational model may not be suitable. Opting for different solutions, or for transferring competency to lower organisational tiers with a more appropriate catchment area are possibilities being considered.

EVALUATING PERFORMANCE

The researchers were unable to examine network performances due to the absence of adequate performance management systems that could allow evaluation of networks’ outcomes in terms of cost-effectiveness, equity, quality and knowledge transfer. Some pilot reporting experiences have been developed in Tuscany, but it is not up to date. Network managers perceive that the establishment of effective information systems would constitute significant progress – their inadequacy is listed among the most critical issues by network managers.

Finally the researchers found that the two main issues still to be tackled are the compensation of

18

Data not available

network players and the inclusion of general practitioners (GPs).3 The former refers to the fact that there are no financial incentives for physicians to take part in “network activities”, such as second opinions and multidisciplinary activity – this is considered a major obstacle for the diffusion of these practices. The latter is about the role of GPs within the network. The poor collaboration between hospitals and primary care is a major issue for the whole system, not just oncology. This is how a network leader summed it up, “We have created a system in which the GP should play a pivotal role, but this does not work at all because we cannot orient their behaviours, we cannot rely on them”.

Details of the references cited in this article can be accessed at http://www.cancernurse.eu/communication/eons_magazine.html

introducing Resources for Nurses Working with Patients with Cancer from the In 2011, ONS AND EONS ENTERED AN AGREEMENT TO BRING THE ENTIRE PUTTING EVIDENCE INTO practice RESOURCE (Pep) collection (see right for details) to the european cancer community. as part of the agreement, eons will translate the pep resources into different lanuages including: • • • • • •

german dutch spanish estonian danish french

look for more information from eons on this exciting project in the near future.

putting evidence into practice: improving oncology patient outcomes Edited by L. H. Eaton and J. M. Tipton

Since 2006, the highly successful Putting Evidence Into Practice (PEP) resources have helped thousands of oncology nurses worldwide implement evidence-based interventions into their practice, improving nursing-sensitive patient outcomes.

Putting Evidence Into Practice: Improving Oncology Patient Outcomes, now in its fourth printing, includes all the updated PEP resources (volumes 1–4) and assessment and measurement tools, and provides ideas for patient care and organizational use as well as case studies to illustrate application of the resources. Nurses can utilize the measurement tools and references to begin to measure application of interventions in practice, helping to document and validate the impact of nursing interventions on patient outcomes and, ultimately, leading to improved patient satisfaction, recognition of a professional approach to care, and optimal patient outcomes.

The ONS PEP resources were designed to provide nurses–from novice and experienced oncology nurses to advanced practice nurses and nurse scientists–with current evidence to help guide their nursing practice. You’ll find all the PEP resources at your fingertips with this complete reference you can use to guide your daily practice.

2009. 324 pages. Softcover.

Cross-Border Healthcare More patients started crossing borders looking for better and cheaper quality treatment and care. As national healthcare bodies felt the strain, more and more cases ended up at the European Court of Justice, prompting the European Parliament to consider legislating on fostering European cooperation on health.

Petra Riemer-Hommel

The issue of cross-border healthcare can be discussed in a variety of contexts. A typology of care provision can centre on the sector (ambulatory versus in-patient care) and the financing of care (sponsored care versus out-of-pocket expenditure). In the case of medical tourism both aspects are of interest with the addition of the distinction between the realities of daily life in a border region versus longdistance travel.

SUPRANATIONAL VS NATIONAL GOVERNANCE

From the patients’ perspective, the reasons for potential cross-border mobility are manifold.1 One major issue is access – this could be the access to therapies not provided in their own country (as for instance orphan drugs, adult stem cells, proton therapy, etc.) or long waiting lists in the country of origin, or simply a shorter travel distance to a specialist across the border compared to one in the country of origin. For individuals with limited or no insurance coverage,

20

differences in cost can also be a reason to choose cross-border care, as the rise in medical tourism to destinations like India and Thailand demonstrates.

Stumbling blocks towards more patient mobility, however, still exist. These can be divided into governance issues on the one hand, and doubts concerning the impact of cross-border competition on the quality of care and equity of care provision on the other. As for governance, some countries fear the impact of increased mobility might have on the financial stability of their national healthcare systems – in essence, the conflict concerns the role of supranational versus national governance in the domain of health.

Increased competition across borders can hamper the role of the national regulatory bodies when it comes to supervising or even guaranteeing quality of care for their constituencies. It is hard enough to find transparent rating systems for quality of care within a single country, let alone a sys-

tem that can operate across borders. Internationally-recognised accreditation systems may provide an option, as long as they reflect the variations in care provision and professional roles across Europe.2,3 Aside from the difficulties in guaranteeing the quality of care provided across borders equity issues may also arise, with well-educated and affluent patients being able to cover travel costs and pre-pay treatment. Françoise Grossetête, EPP MEP, Rapporteur on the Directive of Patients Rights in the European Parliament, demanded modifications of the directive to avoid exactly this problem.

F E AT U R E

EUROPEAN RULINGS

With regard to governance, conflicts between national and supranational legislation may arise. The models of healthcare delivery and financing are quite distinct across member countries of the European Union, with the contributionbased Bismarckian social security model in Germany and the tax-financed Beveridge models in the UK as the main organisational forms. The conflicts between national and supranational governance are centred on three core themes – the sustainability of national systems, the differences in benefit packages across countries and the differing speed in the diffusion of innovation.

Beginning with the case of Kohll/Decker (C-158/96 and C-120/95) in 1998, the European Court of Justice has ruled on a number of cases which have been brought to the Court in order to secure patient mobility and choice across member states. At the core of these cases lies the question of whether the freedom to receive a service in the European Union also applies to healthcare. Since 1998, the choice of ambulatory care providers across borders has steadily been opening up; however, legal certainty on the position of the in-patient seeking cross-border care is still lacking.

On the legislative side, attempts to finally create legal certainty on patient’s rights regarding cross-border healthcare have been in the making since 2002. On 2 July 2008, the European Commission published a proposal for a Directive on the cross-border provision of healthcare services in Europe with the intent to codify and clarify the rules set down by the case decisions of the European Court (COM 2008).4 Urgency has been added to this undertaking by the rul-

ing of the Court in the case Watts vs the Bedford Trust, in the UK (C-372/04),5 where it was clarified that financial constraints cannot be driving waiting lists in the National Health Service (NHS).

On 23 April 2009, the European Parliament adopted the cross-border healthcare report during its first reading, which includes a system of prior authorisation for the reimbursement of costs of hospital care, although hospital care remains to be defined by the Member States. The report also comprised several positive measures, such as reimbursement where the Parliament agreed on principle that patients are to be reimbursed up to the level they would have received in their home country, and other related costs, such as therapeutic treatment, accommodation and travel costs, and more importantly the agreement on special rules for patients with rare diseases and disabilities, in particular the right to reimbursement even if the treatment is not provided for by the legislation of their home country (http://www.aer.eu/main-issues/health/ cross-border-healthcare-services.html).

After a failed first attempt, the EU CrossBorder Health Care Directive was finally passed on January 19th 2011, giving Member States 30 months to implement it into national law. While patients are now theoretically free to choose their hospital, national authorities may still institute a prior authorisation system for “highly specialised and cost-effective health care”.

Independent of the Directive, several European regions have already succesfully initiated cooperative projects. Regional initiatives are already improving care, particularly emergency care, and also intensifying cooperation in training and education,6 as well as e-health projects, as for instance in the newlylaunched cooperation of hospitals in the Alpine region (http://www. aliasproject.eu).

Patients will, in the end, benefit from the increased cooperation in training and education across borders, even if they will not actually travel to seek care abroad.

Details of the references cited in this article can be accessed at http://www.cancernurse.eu/communication/eons_magazine.html

21

Planning for Workforce Change

F

Changing demographics, cultural differences and increased mobility are predicted to result

in a serious shortfall of nurses in Europe, making workforce planning more challenging.

Policy makers need to think about what the workforce of the future will look like.

uture cancer health services will have a difficult balancing act, firstly between increasing demands for cancer care and diversity of provision and secondly between the need to respond to people’s cancer health needs during and after therapy, while also controlling spending. There are several challenges to be faced in developing the cancer nursing workforce, from the increasing age of Europe’s population, to the projected

22

Sara Faithfull and Denise Cullus

shortfall in the number of nurses and the high levels of skills and knowledge required to manage health care provision.

Epidemiological projections within the EU suggest that the increasing life span of the older population will impact on cancer incidence.

Between 2008 and 2060, the population of the EU aged over 65 is projected to increase by 66.9

The Swedish Society for Nurses in Cancer Care

F E AT U R E

million. By 2030, 25% of the EU population is forecast to be over 65.1 Cancer, as a disease of older age, is also predicted to increase as the EU population ages. This will affect the ratio of those in work to those retired. Workforce issues also exist as informal carers age.

Nursing in both specialist and community settings will need to embrace workforce change if we are to maintain quality cancer care. A further effect of the changing demographic is that there will be fewer nurses entering the workforce – at present over half of the EU nursing workforce is over 45 years of age.

Attitudes are also different in younger nurse entrants, who have higher expectations of working conditions, as well as issues such as childcare and convenient parking. Cultural differences in caring roles between countries also impact on the perception of nursing across Europe.

INCREASED MOBILITY

In the UK, 35% of nurses are aged between 40 and 49, with over 25% over 50. This means that only 1 in 10 nurses is under 30.2 Other countries in Europe are facing similar issues, including Austria, Belgium, France, Germany, Italy and the Netherlands.

Shortfalls of 70,000 nurses across five EU countries are predicted (ICN 2009). This pattern is unevenly distributed, some countries are experiencing unemployment among nurses, for example Spain and Portugal.1 As this older staff approach retirement there needs to be sufficient numbers of younger recruits to replace them or an encouragement to entice staff to stay within the clinical setting.3 Mobility of staff across Europe within the nursing population is therefore growing. In the UK, 15% of nurses entering the UK in the year 2000 were from Europe. Today it is 57% and growing, especially from the eastern European and new accession countries4 (see right). These changes across Europe can exacerbate shortages in some countries and pose ethical issues for recruitment of nurses across Europe. Mobility from low- to high-income countries can strip eastern Europe of its health care expertise. The migration drivers are often financial, for example nurses migrating from Romania to Belgium seeking work to support families at home.

Some of these nurses reported illegal demands for fees in order to get a job in a Romanian hospital.

The opportunity for professional training or a more challenging job, for example higher levels of nursing autonomy and professional satisfaction, have also been identified as drivers for nurse migration.

Mobility gives rise to issues of the comparability of

Nurses now require broad skills and higher levels of

proficiency and competence

qualifications and differences in experience across European health systems. The development of Europewide graduate-level nurse education is promoting harmonisation at the level of the registered nurse.5 However, recognition of postgraduate skills and qualifications for specialist areas such as oncology still varies widely across Europe.

The increasing complexity of treatment delivery in oncology is challenging educators and work-based training. Nurses now require broad skills and higher levels of proficiency and competence. In many European countries post-registration nurse roles, such as a clinical nurse specialist in breast care, are not recorded or legislated for. Therefore there has been a growth in titles and diversity which makes workforce planning more challenging.6 Education is therefore fundamental in relation to increasing skills and mobility, keeping those nurses once they are trained, and sustaining continuing professional development.7 What this workforce will look like and which skills will be required to manage future cancer care are questions that should be addressed at national as well as local level.

Details of the references cited in this article can be accessed at

Challenges faced by the EU health workforce the demography issue (ageing global population and ageing health workforce); the diversity of the health workforce; the weak attractiveness of health-related jobs to new generations; the migration of health professionals in and out of the EU; the unequal mobility within the EU, in particular health professionals from poorer to richer countries within the EU; the health brain drain from Third countries.

EU Green Paper on the European Workforce for Health http://ec. europa.eu/health/ph_ systems/docs/workforce_gp_en.pdf

http://www.cancernurse.eu/communication/eons_magazine.html

Number of new EU nurse registrants in UK4

23

Does the NICE Model Amanda Owen-Smith, Joanna Coast and Jenny Donovan

Whether praised by policymakers or

denigrated by popular media, does NICE really influence the decision-making

process of national health bodies? Two

E

clinical studies set out to investigate the

views of health service managers,

clinical professionals and patients.

Domanic Li

stablished in 1999 and funded as part of the UK National Health Service (NHS), the National Institute of Health and Clinical Excellence (NICE) issues guidance to NHS bodies throughout England and Wales on the appropriate use of selected healthcare technologies. It issues best-practice guidance on the treatment of particular clinical conditions and the use of particular clinical or public health interventions, which are based on assessments of effectiveness and cost-effectiveness.1 Regional funding bodies are required to ensure funding is available for the use of healthcare technologies that NICE has recommended through Technology Appraisal “Q: Ha ve you Guidance documents (TAGs). The e v e r heard pressure on resources means that on the media funding is unlikely to be made anythin g abo available for technologies that NICE, ut the Na NICE has decided do not constitute tional I n stitute of Clin good value for money. Despite ical Ex cellen engagement with clinical and ce?

A: Wh patient groups throughout the o?�

(Breas decision-making process, decisions t canc er pat ient) not to fund particular treatments often result in public lobbying from interest groups and negative comment in the popular media. Nevertheless, the NICE

24

F E AT U R E

Work?

“I th ink w [clin ician here s] p we guid erce anc i v e e ha that poli s co NICE tica m l l y e corr think up w ect ith we a state decision-making model is re p prob m r ents etty ably widely admired by ,I scep igno pres t international policymakers, i r c e crib al a it. Fo ing nd r and the World Health i o n f ob stan …I esity ce … don Organization has praised NICE 't thi med nk th solu icat as a beacon model for health tion ions at's to th the technology assessment righ ose (Prim t agencies.2,3 prob ar y c l e ms.” are c Despite the widespread interest in linici an) the NICE process and the expectation that its influence will gather rather than lose momentum under the auspices of the UK’s new coalition government,4 little is known about how NICE guidance influences the decisionmaking at the consultation level, or about how it is viewed and experienced by patients.5 An interview study was initiated to find out how health service managers, clinical professionals, and patients regard the role of NICE in theory, and how useful such guidance is to them in practice.6,7 Two clinical case studies were used, relating to the treatment of breast cancer and morbid obesity, as part of a wider investigation into experiences of implicit and explicit healthcare rationing. Nine healthcare managers, 12 clinical professionals, and 31 patients were interviewed for the study.

The study showed that, whereas both managers and clinicians liked the idea of NICE in theory, in practice guidance was of more importance and usefulness to professionals working in managerial roles rather than clinical ones. Managers viewed

“

If they went to the NICE

guidelines they'd say, ‘well

hold on, NICE says that I should

be able to have it [weight

reduction surgery] … [but]

we haven't got the funding’.

(Morbid obesity clinician)

25

“

�

Research is moving much faster than our ability to subsequently have bureaucratic organisations like NICE then collate and oversee all the

data. ... Therefore as clinicians we tend to be focussing on the best

results of multiple international clinical trials.� (Breast cancer clinician)

the implementation of NICE guidance as of the utmost priority in the organisation of local healthcare provision, and routinely displaced other priorities to fund them, even where they personally felt opportunity costs of implementation were unjustified. However, clinical professionals applied a patchy approach to the implementation of NICE guidance, depending on whether it fitted with their personal opinion and interpretation of the evidence available, as well as whether funding was available locally to provide care.

For the breast cancer clinicians in particular, NICE guidance was felt to be out of date, and both clinical discretion and the local economic context for care provision were more important factors in decision making.

For patient contributors, although all were accessing treatment for health conditions where relevant NICE guidelines existed, many had never heard of NICE, and it was clear in only six cases that patients clearly understood the role and function of NICE. This widespread ignorance of NICE guidance contradicted the expectations of several professional participants.

Although some patients did know about relevant NICE guidance, they had generally learned about this through their own research or experience working within the NHS, and were very unlikely to be

NICE guidance does not always fulfil its main objectives to promote systematic and accountable decision making

alerted to this information by clinicians, who seemed concerned this would result in demands for treatments they could not then provide.

Even where patients knew about NICE guidance detailing their eligibility for care, this was of limited usefulness to them as they were not then able to use it successfully to argue that they were entitled to NHS treatment.

The findings suggest that NICE guidance does not always fulfill its main objectives to promote systematic and accountable decision making and to promote regional consistency in the availability of care.8 Decision making cannot be seen as fully accountable if most patients do not know about the existence of relevant NICE guidance, and, even when they do, are unable to use it to assert their right to NHS treatment. Additionally, local funding pressures coupled with the relatively low status accorded to NICE guidance by clinicians means that implementation at the local level is haphazard and inconsistent, supporting previous findings that significant regional variations in the availability of treatment persist, even where NICE guidance has been published.9 10 The findings from this study highlight the importance of ongoing research to facilitate the implementation of NICE guidance into clinical practice, and to investigate how guidance can be made more accessible and useful to patients at the point of accessing care. A fuller discussion of the findings of this study can be found in literature elsewhere.5 Details of the references cited in this article can be accessed at http://www.cancernurse.eu/communication/eons_magazine.html

26

The European Oncology Nursing Society presents:

26-27 April 2012

Geneva, Switzerland Save the Date

www.ecco-org.eu

EONS8_Geneva_210x270_18-7-11_Page2.indd 1

18/07/11 13:56

Corbis

What Does a Specialist Nurse Mean Across Europe?

Franzisca Schneider and Sara Faithfull

The role of specialist cancer nurses varies from country to country. Now for the first time, a survey has been done to identify the status and characteristics of oncology nurses. But more should be done to clarify further what specialist clinical nurses do.

The number of specialist cancer nurses continued to grow in the past decade. At the same time, new roles were created, such as advanced nurse practitioners, physician’s assistants and consultant nurses. In some countries these developments took place because of the

28

lack of medical practitioners, more complex care pathways and the need for care coordination. In the European Union (EU), variations between member states in the role and function of nurses has become noticeable. As they are not clearly defined, the confusion about these new roles has

started having consequences for patients, education and mobility.

A recent survey in the UK highlighted 17 different oncology nurse titles with disparities – both geographic and across cancer types – resulting in some patients getting easier access than others to spe-

F E AT U R E

Table 1. Differences between specialist, advanced practice and innovative nursing roles Clinical nurse specialist

Advanced nurse practitioner

Consultant nurse

Case management Specialist knowledge that adds and enhances existing care for patients ● Defined client group ● Limited decision making

●

Assessment, diagnostics and treatment planning for patients ● Substitution of medical roles ● Autonomy within defined parameters ● Limited decision making

●

● ●

cialist nursing support.1 At EU policy level the only identified specialist nursing role is a recommendation for breast specialist nurses working in breast treatment cancer centres.2 There is as yet no obligation for member states to provide adequate quality healthcare or any guidance on specialist nursing roles in oncology. Furthermore, while in many EU countries specialist nursing roles are not recognised, in others, additional education and continuing professional development have led to advanced roles and improved employment prospects. Should the benefits in developing greater specialisation be something that nurses aspire to and is there consensus across Europe on role definition?

There is now clear evidence that patients have benefitted from specialist cancer nursing over the years, in particular breast cancer and lung cancer nurse specialists. Several studies have shown that specialist nurses can improve patients’ emotional wellbeing, enhance symptom management and reduce hospital re-admissions.3 This raises important questions about what specialist nurses do that other cancer nurses can’t, what additional skills can they provide that a trained oncology nurse can’t, and how do we distinguish between these role titles? This is a controversial question and one that policy makers, health funders and managers are increasingly asking, especially in these difficult times.

Differences in general specialist nursing roles have been described in some overviews. Sibbald4 identifies these new

Case management, assessment treatment planning and intervention for patients ● Provides innovative total care package ● Autonomy in decision making

Table 2. Difference between specialist and oncology nursing roles in EU countries Legislation for post-basic specialist nursing Austria

Specialist oncology nurse

Y

Educational CNS standards

Workforce guidelines

Secondary level

Belgium*

Higher level

Y

Bulgaria*

Y

Y

Y

Y

Czech*

Y

Y

Y

Y

Y

Y

Y

Y

Higher level

Y

Berlin Hessen

Secondary level

Y

Higher level

Croatia* Denmark* Estonia * Finland† France†

Y

Germany†

Y

Greece*

Y

Ireland*

Y

Italy*

Y

Secondary level

Y

Higher level

Lithuania*

Y

Luxembourg

†

Y

Secondary level

Netherlands† Poland*

Y

Portugal* Spain†

Y

Higher level

Slovenia* Sweden†

Y

UK*

Y

Higher level

Y

*Countries participating in the EONS 2009 survey. †

Based on the EU study of specialist nurses MARKT/D/8031/2000.

29

roles as falling into three categories: the specialist nurse, the advanced nurse practitioner and innovative roles such as the nurse consultant. Each of these roles has defined responsibilities and scope (Table 1), with the autonomy and authority to make decision being fundamental to the definition of the role. Legislation in some countries, for example in Ireland, defines clearly the specialist nurse role and distinguishes between the differing titles such as advanced nurse practitioner and specialist nurse.

In 2001 Glaus5 reviewed European national nursing societies as part of a European Oncology Nursing Society (EONS) survey, and explored indicators of the status and characteristics of cancer nursing for the first time. Issues that influenced professional development were reported to be work conditions, education and nursing developmental issues. Cancer nursing was recognised as a speciality in only 11 countries within the healthcare setting and post-registration cancer nurs-

Fig.1. Which roles do specialist cancer nurses have in your country?

Definition of a specialist cancer nurse A clinical nurse cancer specialist is a recognised general nursing professional who has acquired additional oncology knowledge, skills and experience, together with a professionally and/or academically-accredited postregistration qualification in the clinical specialty. He/she should demonstrate characteristics and skills of practice at an advanced level.

Characteristics of specialist cancer nurse within Europe provides a therapeutic oncology environment ● assesses the needs of cancer patients and families in a culturally-sensitive matter ● is accountable for his/her oncology practice ● works autonomously ● is capable of providing speciality focused patient care ● is aware of the evidence base for the area of his/her speciality ● is confident and competent to practice in a collaborative manner with all members of the team ● should both value and be able to articulate to others the therapeutic value of cancer nursing ● should develop in-depth knowledge in cancer care/ in a defined area of oncology ●

30

ing courses were available in 16 European countries, but with wide disparities in education and contact time (from 40 to 800 hours). Cultural and language barriers made it difficult to record sufficient data from cancer nurses to get a full picture of their work roles. It was recognised, however, that there was a need to improve the status of cancer nursing within Europe.5 Ten years later, an update of this data was undertaken as part of an Erasmus project to review the characteristics of specialist cancer nurses within Europe, in particular identifying the national and local legislative requirements for specialist nursing across Europe and how this reflects on cancer nursing roles. EONS member societies were asked to complete a short questionnaire on whether they had specialist cancer nurses within their country, the education and training requirements and the practice domains and support structures which are in place for the role of cancer nurses within their country.

For many countries there is still a long way to go before specialist cancer nurse

F E AT U R E

roles are defined. Post-basic training in oncology nursing and work recognition is not the norm across Europe. Those countries that have specialist cancer nurse roles (n=13) had a variety of legislative or workforce-based components (Table 2).

Despite these differences, there was a clear consensus on the elements defining a cancer nurse specialist’s role (Fig. 1).

Namely, the specialist oncology nurse should function as a clinician, innovator (for care pathways in cancer care), educator of care, researcher, coordinator, case manager and leader (of general nurses/ in a multidisciplinary team).

Surprisingly, barely half of the national oncology nurse societies consider treatment planning (50%), and tumour specialisation (57%) as crucial attributes within the role of the specialist cancer nurse (Fig. 2). These roles are often defined within that of the advanced nurse practitioner.

The lack of a clear definition also became apparent in the responses to the open-ended question about the individual skills that a specialist cancer nurse utilised. Answers demonstrated little common ground. There was, however, agreement that cancer nurse specialists should have work experience to gain specialist knowledge and that work experience should be augmented by a specialist cancer care courses, or post-basic education.

In some countries significant barriers remain in the cancer care setting, including a lack of explicit educational criteria; confusion about educational requirements; lack of formal training in oncology practice and ad-hoc implementation of the nursing role are of secondary importance.

The lack of consensus on skills for specialist cancer nursing reflects the diversity of nurse training within Europe. In the survey by Glaus,5 only four countries reported a Masters programme in cancer care. By 2009, however, this number has doubled to eight.

The lack of guidance from regulatory bodies regarding the minimum educational standards and skills required for increased continuing professional development for specialist nurse status high-

lights the need for further work. As the educational requirements for basic nurse training is harmonised across Europe through the Bologna process, graduate training for nurses becomes more the norm. It is therefore important to define the differences in level of education and roles, so that there is joint understanding and transferability across Europe.

In the difficult financial times healthcare budgets face, we need to identify more clearly what specialist clinical nurses do and how this can benefit patient outcomes. This need is connected to a steady rise in the complexity of health care knowledge and technology. The capacity of specialist nursing care is developed after completion of basic oncology nursing education and should enable and facilitate the delivery of care according to the needs of particular patient groups.

One of the medical specialities that persistently display a particularly large share of advanced or special activities is oncol-

ogy.6 The rising specialisation in cancer care and the economic pressure in providing complex health treatments and services are indeed promoting the role of nurses.7 New definitions are emerging from census data and studies of specialist nurse practice.1,3 Despite differences between countries in the skills and training required for specialist nursing there was remarkable consensus on what the role of the specialist cancer nurse should be in European oncology nursing practice.

Areas of difference were over the level of autonomy and treatments provided by the nurse within the specialist role. A European consensus paper defining what is a cancer nurse specialist, competencies and educational standards would help in transparency and clarity.

Details of the references cited in this article can be accessed at http://www.cancernurse.eu/communication/eons_magazine.html

Fig.2. What are the skills of a specialist role in cancer nursing within your own country?

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The European

Multidisciplinary Cancer Congress Integrating basic & translational science, surgery, radiotherapy, medical oncology, advocacy & care stockholm, 23-27 SEPTEMBER 2011

www.ecco-org.eu

The 2011 European Multidisciplinary Cancer Congress Highly Educational Oncology Nursing & Symptom Science Tracks: Latest Findings in Treatment and Care.

4-day programme Special sessions

Interactive workshops Teaching lectures

Don’t miss this unique opportunity to meet and discuss with nurses and nursing experts from around Europe. www.ecco-org.eu In partnership:

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