Cross-border healthcare

by: Petra Riemer-Hommel

Planning for workforce change

by: Sara Faithfull and Denise Cullus

Does the NICE model work?

by: Amanda Owen-Smith, Joanna Coast and

Jenny Donovan

Spr ing 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

PolicyTheme:

European Healthcare

EDITORIAL

3 Shaping a Better Future by Clair Watts

LATEST NEWS

4 A message from the Board

5 Learning about cultural differences

6 Europe pulls together to fight cancer

HIGHLIGHT

8 The role of the Macmillan Oral Health Practitioner

10 EHMA congresses: nurses at the heart of change

INTERVIEW

11 Nursing as leadership: passionate about care

FEATURES

14 The manager’s mum

16 Cancer networks in Italy: early experiences

20 Cross-border healthcare

22 Planning for workforce change

24 Does the NICE model work?

28 What does a specialist nurse mean across Europe?

2

Editor-in-Chief:

Clair Watts

Production Editor:

Jim Boumelha

Editorial Assistants:

Catherine Miller, Rudi Briké

Art Editor:

Jason Harris

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 AMGEN (Europe) GmbH,

AstraZeneca, Merck KGaA, GSK, Novartis

Oncology, Nycomed, Pfizer Oncology, Hoffmann-

La Roche, Sanofi-Aventis Groupe and Spepharm

SAS France for their continued support of the

Society as sustaining members.

Print run: 2000 copies

Electronic version accessible

to 24000 EONS members

Design and production:

© 2011 HarrisDPI. www.harrisdpi.co.uk

Cover Illustration:

Domanic Li

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 translated materials contained within this

edition of the EONS Magazine.

© 2011 European Oncology Nursing Society

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

Contents Spr ing 2011

E d i t o r i a l

3

E ffective health policies can change people’s livesfor the better. The impact may not be as instant as

delivering care to a patient, yet it can be far more wide-reaching. Whether you are a specialist nurse advising apatient on a ward, a student nurse training at college oran advanced practitioner participating in a communityteam, what you will or will not be able to do often de-pends on what the European, national, regional, profes-sional 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 openingplenary talk at last year’s EONS congress, updatesus on developments in the agreement of a Europeancross-border healthcare directive, taking us throughthe legislative, financial and bureaucratic difficultiesthat often slow political agreement.Denise Cullus and Sara Faithfull look at the future of

Europe’s healthcare systems and consider what shouldbe done to address the shortage of specialist nursesthat has long been predicted, while Franzisca Schneiderand Sara Faithfull share the results of an Erasmus studydeveloped with EONS members to examine what theterm “specialist cancer nurse’’ means across Europe –they give some thought to how that role might developin the years to come.A face-to-face encounter with Dutch cancer care is

described by Rob Koning on as he shares a personalexperience of the ups and downs of his mother’sdiagnosis and treatment. Marco Sartirana gives some ofthe answers for us all in explaining how Italy is building

a coordinated system in its regions to plug the systemgaps 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 intransforming 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 healthcarepolicy debates. They are a major cog in the wheel thatis the healthcare system, creating educationalprogrammes to train nurses in 21st century skills,developing novel prevention campaigns and strategiesfor team working in complex environments – wherepeople lives are at stake. This is exactly the level ofpracticality 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 needsa diverse group of people, with varying perspectives,expertise and knowledge to develop the ingenious,fresh ideas necessary to shape an effective policy andmake the difference in life. Policy development is notjust for political science experts or keen oncologists; itneeds the voice of the specialist cancer nurse, thepsychologist and the pharmacist alike. Policydevelopment is the same as clinical care – it needsteams of experts working together in order to reach theright 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 takingpart. Oncology nurses, the policy world needs you!

Editorial Clair Watts, Executive Director

Shaping a

Better Future

Over 300 delegates from 35countries converged on Madridon 25th February to attend thesecond Skeletal Care Academy2011. The Continuing MedicalEducation-accredited eventreceived support from ninesociety partners and consisted ofa mixture of plenary andspecialist sessions, workshopsand networking opportunities for physicians, nurses and patient advocates. It aimed atbuilding a wider knowledge of the scale of cancer-related bone disease and theimportance of bone health in patient care.

A core element of the programme discussed the benefits of nurse specialists inosteoporosis and the role of nurses in assessing/monitoring patients with cancertreatment-induced bone disease and bone metastasis. Role plays focusing on multiplemyeloma, prostate and breast cancer reflected on nursing intervention strategies inreal-life scenarios and, in the market place, delegates attended highly interactiveworkshops covering key areas of bone health.The event, sponsored by Amgen and Ferring Pharmaceuticals, concluded with a paneldiscussion of topics that arose during the event. As one of the panel membershighlighted, “We have many tools and treatments available to us now. We must learnto use them more effectively”.

4

Reviewing member societies benefitswas the major issue of discussion at

both the November and February ExecutiveBoard meetings. The Board endorsed aproposal from its membership options taskgroup that EONS membership should beautomatic for all national society members.As well as assisting with creating nursingsocieties where none are available, membersocieties will receive enhanced benefits ifthey provide EONS with a basic membershiplist every year.Further decisions were taken to assistsocieties to build membership by offeringtraining in IT skills through an onlineeducation programme and reducing the fees

of those societies in countries where GDPwas 75% or less than the European average.EONS continues to be involved in majorpartnerships, including ESO-EONSMasterclasses and e-grandrounds, thetranslation and Europeanisation of the ONSPEP’s as a deliverable of the EPAAC project,and the EONS Skin Cancer project to listjust a few. EONS is also engaged in severalcollaborative patient projects; ISNCCTobacco Cessation project, helping with the‘Learn, Share, Live Better!’ project inRomania as well as contributing to severalECPC meetings and workshops.Applications to the TITAN DisseminationAward and the Mentoring Research Grant

were discussed. The Board agreed toproceed with the Novice Researcher Award,and to discontinue the Distinguished MeritAward. A new more global initiativeinvolving nurses and patients, the LifetimeAchievement Award, was established.Finally, the Board agreed that, in order tobe more accessible to members, themovement of governance meetings aroundEurope would be piloted and PresidentKav offered to host the May Boardmeeting in Ankara, Turkey.Ulrika Östlund, Board Secretary

The contact details of EONS Board members are

available on the EONS website.

A Message from the Board

Join us at the congress

Second Skeletal Care Academy 2011

ECCO – the European CanCerOrganisation – in partnership with itsfounding members EONS, ESMO, ESTRO,ESSO, EACR and SIOPE, is organising its2011 European Multidisciplinary CancerCongress, in Stockholm, from 23th to27th September.

The Executive Scientific Committee, theOrganising and Scientific ProgrammeCommittees look forward to taking thisopportunity to meet with EONS nurses.If you haven’t already registered or areinterested in more details, please visit:www.cancernurse.en/communications/emcc2011.html

Am

ge

n,C

ECO

G

L A T E S T N E W S

5

I met Dr Cody and nurse Fran Spiroat the Memorial Sloan-Kettering’s

new Evelyn H. Lauder Breast Cancer Cen-ter on 300 East 66th Street in Manhattan.Hailing as I do from a little town in Nor-way and a tiny 500 m2 breast centre, the16-floor building seemed awesome. I wasintroduced to the surgical department andattended patient consultations with DrCody and his assisting nurse.The first thing that struck me is how pa-

tient care and communicationbetween surgeon and patientseemed exceptional. Despitetime being short because of theheavy workload, one couldsense a certain calmness andtrust between patient and doc-tor, a central tenet of the SloanKettering’s philosophy.I also attended patient con-

sultation with three other sur-geons’ and nurse practitioners.Each surgeon was specialisedin a specific field – DCIS, ductalor lobular breast cancer, or pre-cancerous lesions – giving thepatient targeted informationabout the best treatment choices, surveil-lance and follow-up. Being a private hospi-tal, it was clear that patients were treated as“clients” according to their private healtharrangements. The more expensive thehealth insurance, the better service you gotfrom the doctor and his/her team. I was re-minded of this, since no patient was seenbefore they had been to the Financial Serv-ice Department wheremedical insurance ischecked and registered before the consulta-tion can go ahead.After consultation with the surgeon, the

nurse “teaches” the patient in a separateroom all they should know before and aftersurgery. Patients are asked to bring a rela-tive or close friend, not just for support, butalso as a witness. The US system requirespatients to sign, in front of a witness, thateverything is understood and agreed upon –something not practiced in Norway. Among

the list of do’s and don’ts, I noticed adviceabout “How to prevent falls” which under-scores the importance of liability in a pri-vate health system.I attended the weekly multidisciplinary

meeting on the 9th floor, where around 50participants met to discuss the difficultcases and a scientific lecture is held duringthe last 30 minutes.Several other services

were on offer at the centre:art therapy and social workservices, psychiatry services,rehabilitation and nutritionservices, a special surveil-lance breast programme, anda boutique amongst others.During my stay I visited

the Sloan-Kettering’s out-reach programme, the BreastExamination Center of

Harlem, which provides serv-ices to low-income womenwithout health insurance. If di-agnosed, these women will getexactly the same treatment asany paying patient. I also vis-ited its downtown facility, theGuttman Diagnostic Center,where biopsies and other in-vestigations can be done, eitherby referral from family doctoror from the Harlem centre. Iwas impressed by the work ofthe Nurse practitioner, a rolestill unknown in Norway.My final visit was a tour of

the Integrative Medicine Department inBendheim which felt more like a quiet spadesigned to give a feeling of serenity andwell being. Coming here for a massage oryoga session is a respite for many patientsand caregivers amid a period of stressand anxiety (for more information seewww.mskcc.org).

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.

Learning about Cultural Differences

The centre provides pioneering, comprehensivebreast cancer prevention, diagnostic, treatmentand supportive services that go beyond thestandard care, all under one roof. The facility,designed to make the patient experiences lessdaunting and to enhance interaction betweenpatients and their care team, empowers patientsto become active partners in their own care.

A therapeutic setting

6

The Partnership is a unique modelof collaboration that brings member

states together with NGOs, researchers, pa-tients groups, industry and national au-thorities across the EU in a collective effortand with a common commitment to ad-dressing cancer.

The focus is to reduce the burden of can-cer through the EU in a variety of areas,from health promotion and prevention, toscreening and early diagnosis, cancer-re-lated health care, coordination of researchand cancer information. This partnershipapproach will help to avoidscattered actions and the dupli-cation of efforts. The overall planis to support member states indevelopment of cancer plans andreduce inequalities in cancerscreening, treatment and sup-portive care.

The major goals of the Euro-pean Partnership for ActionAgainst Cancer are two-fold:� To help all EU countries tackle

cancer more evenly and effectively bysharing information, resources, bestpractice and expertise

� To avoid fragmented and duplicatedeffort andmaximise the limited resourcesavailable - by coordinating action oncancer involving member countries,scientific experts, patient organisationsand other key stakeholders.To accomplish this, the EPAAC project

has been divided into 10 Work Packages.EONS will contribute to WP6 (screening &

diagnosis), andWP9 (information & data) aswell as deliver a project inWP7 (healthcare).In WP7 EONS and European Health Man-agement Association (EHMA)will work col-laboratively to deliver part of the project.

Anita Margulies and Sara Faithfull willlead a EONS project in work package 7(WP7) that will review the variability inhealth services and the outcomes of care.Sharing best practice is a key message and

using evidence-basedguidelines are objec-tives of this workstream. Evidence-basedguidelines are often notput into practice, ham-pering improvements –

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

In collaborationwith the Oncology Nurs-ing Society of the USA, EONS will euro-peanise and translate the “Putting Evidenceinto Practice” (PEPs) tool designed to pro-mote the incorporation of clinical guide-lines for managing cancer symptoms intonursing practice (http://www.ons.org/Re-search/PEP).

This EUprojectwill also supportworkshopson how to implement better cancer symptommanagement using clinical guidelines.

They will provide tips for practice devel-opment and overcoming barriers to usingclinical guidelines. Anyone interested inparticipating should look on the EONSwebsite for more information. (www.can-cernurse.eu/advocacy/epaac.html)

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

prevention, early detection and care of cancer patients

and survivors across Europe.

Europe Pulls Togetherto Fight Cancer

Clair Watts

Alamy

EPAAC

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

European Partnership for Action Against CancerJoint Action

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

http://www.epaac.eu/

EPAAC Joint Action on Facebook

Like us!

8

The post of Oral Health Educator isunique in England and a source of

great pride, as I see a clean, pain-freemouth as a right for all patients. Previously,faced with a large proportion of patients di-agnosed with head-and-neck cancer, staffoften reported a lack of training and under-standing of the conditions that affect themouth and of the impact of poor oral hy-giene on a patient’s quality of life.

A large part of my work is to developthe role and to champion the need for ef-fective mouth care amongst patients. Poororal hygiene can also affect treatment forcancer – patients with oral mucositis arefour times more likely to have unplannedbreaks in radiotherapy treatment, with thepotential to reduce the effectiveness oftreatment, which can lead to – or prolong– hospital admission.

Oncology patients suffer a great dealwith problems with mouth problems, butthese often seem to be accepted as “par forthe course” by both patients and profes-sionals. Dry, painful or ulcerated areaselsewhere on the body seem to be givenmore importance, but when they are inthe mouth, it appears they are often con-sidered as an effect to be expected, andnot given the priority and attention they

deserve. The impact on patients’ quality oflife is often not appreciated, and a largepart of the role of the Macmillan OralHealth Care Practitioner is to highlightthis to patients, relatives and staff.

I quickly became aware that ignoranceof the impact of problems with oral hy-giene was an important factor preventingstaff from providing effective oral care. Totry to overcome this, I developed a section

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

and the impact she has had.

Emma Riley

The Role of theMacmillan OralHealth Practitioner

H I G H L I G H T

9

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.

Figure 1.

(top) Emma

cleaning

Alan’s mouth

Figure 2. (right)

The mouth

Alan had on

a daily basis

on oral care on the Trust’s intranet site,which includes basic dental anatomy, aswell as a list of conditions that affect themouth and how they can be treated. Thesection used colour photographs to makeit easier for staff to understand, and in-cluded the Trust’s mouth care policies andinformation about oral hygiene products.The site has been a huge success and in-corporates a link nurse with a member ofstaff accessing the site regularly and cas-cading any relevant information back tothe ward staff.

Alan, aged 63, was diagnosed with alarge squamous cell carcinoma of histongue, and underwent removal of thetongue and post-operativeradiotherapy in February 2009. Thesurgery meant that he has troubleswallowing and he is therefore fed viaa percutaneous endoscopicgastrostomy tube (PEG), directly into hisstomach. He also has difficultycommunicating due to the surgery. Ondischarge, Alan was supplied with asuction machine, and his wife wasinstructed to keep his oral cavity asclean as possible. Although it wasarranged for a district nurse to visit him,she was neither comfortable norconfident in attending to his needs.As Alan could not take food or drinkorally, his mouth became very dry, and

often bled (Fig. 2). His wife found itdifficult to clean his mouth with just atoothbrush and suction machine.Furthermore, the bad odour from hismouth made talking, kissing andhugging increasingly difficult. This hadan impact on Alan’s quality of life, andhe began to lose interest. He was thenasked to attend a nurse-led clinic everyother week where the Macmillan OralHealth Care Practitioner would cleanand lubricate his mouth (Fig. 1).After 8 weeks, Alan made tremendousimprovement and his mouth is nowclean, pink and moist, with much lessbleeding. His visits to the clinic werereduced to monthly. Alan is now adifferent person – his wife says he is nowtrying to communicate even though heis without a tongue, and seems to beembracing life a little more.

MacmillanCancerN

ursing

10

Each year around 200 nurses, doctors, phys-iotherapists, patient representatives, re-

searchers, funders, health economists, policyadvisors, project managers and finance di-rectors converge on the EHMA annualcongress from every corner of Europe.They come to learn more about how theycould think more creatively and changepractices in their hospitals, govern-ment departments and universities, re-gardless of the limitations imposed byfinance, health care structure andchanging demographics.

Workshops, master classes andsymposia are designed to bring this di-verse group of health managers togetherin ever-changing combinations so that theycan challenge one another’s thinking andideas of ‘normal’ practice. Participants areasked to find solutions to scenarios that even themost seasoned change manager would find chal-lenging. The best solutions involve difficult choicesand participants were often left wondering whether

debate to this new audience. The Prometheus proj-ect, an EU study model into the mobility of healthprofessionals, was a topic of especial interest as it

examined the scale and flow of movement ofhealth professionals around Europe, patients’legal ‘right to health’ and the ability of health-care systems to deliver the preventative, cur-ative and palliative services needed. Therole of the patient in leading change inprocesses and the co-development ofchange models with patients were inves-tigated, as well as the need to find practi-cal and pragmatic solutions.The 2011 event featured a pre-confer-

ence symposium entitled “Proud to care:building organisations that care for older

people well’’ where Françoise Charnay-Son-nek shared her perspectives of the French

healthcare system and highlighted EONS educa-tion tools to the multi-professional audience.What can be said of these events is that even

though the topic of the congress changes eachyear, issues are never country-specific; everyoneshares the same problems no matter what thehealthcare structure, funding model or budgetaryconstraints. It also highlights the necessity for prac-tical, innovative leadership to deliver quality futurehealth services, and for programmes that build ca-pacity at managerial level ensuring that decisionsare made on the basis of sound evidence.

Last, and definitely not least, it reminds us ofthe importance of listening to each other beforetaking the important decisions that put the patient’sneeds at the centre of the healthcare system.Clair Watts

EHMA Congresses:

Nurses at the heart of change

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 health-care re-organisation, consolidation and integration todeliver patient-centred care. Cross-border initiativeswere explored in preparation for new EU policies. Thecooperation that is so essential in delivering high-quality and efficient health care across borders, ap-peared, even in 2011, challenging.

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

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.

11

Are there enough nurse leaders inclinical teams?

Having started in oncology and moved re-cently in older people care, Lesley felt morecould be done to improve the role of nurseleaders in clinical settings: “It’s a verymixedpicture. We’ve got pockets of excellencewhere nurses remember that patients are atthe centre, coordinate their multidiscipli-nary team colleagues, promote nursing, ex-cellent practice and make quality central.We have other pockets where that doesn’thappen at all and there isn’t the true multi-disciplinary teamwork”. She suggests a pos-sible reason for this lack of clarity might be:“it is about us not being clear about rolesand role definitions. If you ask patients theyknowwhat a nurse, a sister or a matron are.Sometimes the various roles and differentjob titles, uniforms and everything elsecause confusion amongst multidisciplinaryteams and for the patient. I think that candetract fromwho actually is in charge here.”

Are nurse leaders visible to patients?Visibility at a clinical level is essential: “Ithink that patients see nurses in a leader-ship role within clinical care... if you’vegot good role modelling and you’re clearabout who is in charge, you will have metwith those patients and relatives and ex-plained your role, then I think we have ex-cellent leaders but I think equally thereare others that tend to hide.”Nurses often underestimate the impor-

tance of their role in care: “I don’t thinkwe are good at articulating what we do, soI think there is something about our ownimage. If you take the individual nurses aswell as the public perception of theirimage, there has been a huge piece ofwork done in London which showed theimage of nursing as incredibly popularand very positive but the image of nursesis not. I think this is because the publicheard so much about bad health care andaccidents (poor care and quality) that pre-

dominately sits at nurses’ door. Within ourown profession, we are not good at sellingwhat we actually do.”

What are the differences you see in leader-ship between cancer and older people care?“I think it’s a speciality that nursing hastaken on and is seen as important nationally.Everyone’s heard of cancer, so it’s in thepublic eye and there’s lots of research be-hind the scenes. So it’s very much in yourface, and nurses that work in that specialityare very highly regarded. Cancer qualifica-tions and development and specialist nurs-ing roles are something to aspire to. So if Icompare it to for example to dementia, eventhough it’s a much bigger killer in the UKand a much bigger problem, it doesn’t haveanything like the same prestige. Part of thatis the association of dementia with olderpeople so it becomes the Cinderella serviceagain. But it’s not comparable even thoughin some ways it should be.”

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.

I N T E R V I E W

Nursing as Leadership:

Passionate about Care

12

Is nurse leadership easier in anoncology field?Lesley feels that oncology is more ad-vanced: “I’m not sure it’s necessarily easier.Whereas there is still the perception that ifyou work in oncology, everybody’s answerto that is ‘oh that’s great’. But if youwork inelderly care quite often you still get the an-swer of ‘well couldn’t you have done some-thing better than that’.”

What skills did the leadershipcourse provide?“I had been deputy director of nursing forsix years and was looking for a coursewhich would help me identify whether Iwanted to be a director or not... I got a bit ofunderstanding but acting up isn’t the samething as doing it, so I felt there were gaps inmy own knowledge. I felt I wasn’t there yetbut I couldn’t tell you what it was I neededto get there, so this opportunity came up. Ithink it was really useful because it madeyou think about what you’d done and whatyou wanted to do and why? I wanted tohave the independent opinion of my ownprogress and development and where Ineeded to go and what I was good at. Theprogramme made me look at my own lead-ership style and gave me a lot more confi-dence personally about where I was... It wasa huge boost and during some of the policydiscussions and debates that we were hav-ing I was surprised by how much I knew. Ihave got muchmore confidence to actuallydescribe my leadership style because I feltit’s backed up by evidence.”

If you were talking to a clinical oncologynurse working on the ward who showed po-tential of clinical leadership are there thingsyou would recommend that they could do todevelop their leadership skills?“Absolutely, I think it’s to shadow someonewho is senior. Go and find out who are theleaders in your organisation that other folkand you admire. Go and spend some timewith them, get yourself a mentor. But Ithink this is really important and everyonesays we are too busy – it’s language I thinkwe should ban, really because this is aboutyou and your development, and you’ll makeit better for patients if you do.” Lesley gives

the example of “just by going to shadowwhat does your director of nursing do or,what the clinical governance lead do intheir work, you have a better understand-ing of roles and processes and you can lookat how other people can manage and leadtheir teams.”

A final word from Lesley is that nursesshould see themselves as possible leaders.“We need to change the image of managersbecause leaders are seen as much morepositive but actually we need both. Andleaders need to have good managementskills as well.”

TheKing’sFund

a partnership between

Global Emerging Leaders

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leadership accessed via hundreds of video tutorials from Harvard Business School

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

My mother is 80years old and livesall by herself in abeautiful apartment

in one of the suburbs of Amsterdam –“my very own penthouse” as she prefersto call it. About a year ago she wasreferred to a lung specialist by her GPwith mild complaints of pain in thechest. An X-ray was taken and we wenttogether to the specialist. The X-rayindicated a possible tumour. Within ashort timeframe a bronchoscopy and aMRI scan were scheduled. Thediagnosis was a localised, small-celllung cancer, with no metastasis in thelymph area. The suggested treatmentwas a combination of chemotherapyand radiation.

From that moment on we all boardedthe rollercoaster. All of a sudden my mother became apatient 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 specialisedoncology nurses. Immediately after hearing the bad newsfrom the lung specialist, one of them took us to heroffice to discuss the future. For my mother and for thechildren who supported her, she became a veryimportant person. There was a person, the oncologynurse, with a face, enough time and a lot of practicalexperience with cancer treatment, and most important amobile phone number. She took care of the coordinationof the various aspects of the treatment. For instance,before the start of the chemotherapy a blood sample hadto be taken. Although that had to take place in adifferent department of the hospital, the oncology nurseinformed the staff and my mother was received as aqueen and given priority. Chemotherapy treatment tookplace in the same hospital and was organised by the

Rob F. Koning

14

principal specialist. There were hardly any problemswith timetables, medication or transport. A personal filewas swiftly created and put in the hands of my mother.In it all relevant treatment data and appointments wereregistered. As a manager myself, I was impressed to seehow the various departments of the hospital were able toco-operate thanks to the treatment pathway, coordinatedby the oncology nurses.

In the mean time, we all learned more about lungcancer. Through the internet I informed myself about thelife expectancy and the common treatment protocols.Speaking with friends and relatives, my mother realisedthat something serious was going on. She told me howshe wanted to preserve the quality of her life and did notwant to become dependent on others. She has serious

The Manager’s MumRob Koning shares with us the story of his

mother’s diagnosis and treatment.

F E AT U R E

15

doubts about the preventive treatment involvingradiation of the brain, after completion of the localisedradiation therapy. She feared the side effects of memoryloss. More generally, we started preparing ourselves forthe worst possible scenario, death.

When the radiation therapystarted, my mum was referred toa specialised cancer hospital.She attended therapy as anoutpatient five days a week.

The planning andimplementation of theradiation sessions wasalmost completelycomputerised, with

barcodes, processchecks and all.

Fortunately there was alsoa specialist nurse who paidattention to my mum as aperson and focused on hercondition. I liked the way inwhich he was able to relateto my mother and comforther. I was surprised to seethat he was there veryfrequently. There were minorchanges in staff shifts, so thenurses were able to buildrelations with their patients.She became known as aperson and recognised as

such. For my mother it wasvery important to see the same

nurses during the whole treatment period, particularlybecause her condition and her appearance rapidlydeteriorated. But with familiar faces around, this madeher feel relatively comfortable.

There were some difficulties however. One problemarose around medication. Like other cancer patients, mymother suffered from nausea. As prescription of theappropriate medication was the responsibility of thespecialised cancer clinic, because of their expertise, thefirst problem was that they had no accurate informationabout all the other prescriptions. Fortunately, my motherhad kept track of all the medication she received,handwritten on a piece of paper. The registrar at theclinic asked her permission to photocopy thisinformation. In an age of electronic data it was indeedsurprising to see the patient becoming the real recordkeeper. The second problem arose as a result of thediversity of medication my mother used, which createdan adverse effect only detected by the local pharmacist.

When we asked the oncology nurse at the generalhospital to help, she felt unable to intervenebecause of the cancer hospital’s policy regardingmedication. We had to ask my mother’s GP to takecare of the coordination.

Another issue that emerged during the treatmentconcerned decision making. Following diagnosis, theprincipal specialist suggested a specific combination oftreatments, in line with a standardised protocol. Part ofthe protocol is preventive radiation of the brain, a coupleof months after the focaltreatment. Long before thispreventive treatment mymother started to getapprehensive, and during thetreatment she expressed seriousobjections, as she feared itmight affect her mentalabilities. When she raised thisquestion with the specialist atthe cancer institute, the answerwas very curt – just adhere tothe protocol and do not worry.When she put the question tothe oncology nurse at thegeneral hospital, to our surpriseshe referred her back to thecancer institute. My mother was not comfortable at all indiscussing the risks of the protocols, as this was theexpert field of the specialised institute. In fact nobody atthe institute wanted to be involved in this discussionpresumably on the grounds that empirical evidenceleads to best possible treatment protocol and the bestsurvival rate. But my mother wanted to make a balanceddecision and wanted some support in deciding how toweight the pros and cons in a complex equation.Surviving was not her only objective. It was a difficultdecision and she would have appreciated someprofessional help.

The treatment was completed about eight months ago.My mother still lives on her own and has gone backalmost completely to her previous life. Her hair hasgrown back again, and although she is physically stillweak, mentally she has regained her strength. She enjoysthe company of her newly-born great grandchildren and,a couple of weeks ago, we were able to take her out for ashort sailing trip in a tall ship on the North Sea. Andevery three months we accompany her to the specialistin the general hospital to learn about the future.

SSiinnccee wwrriittiinngg tthhiiss aarrttiiccllee,, RRoobb’’ss mmuumm ssaaddllyy ddiieedd.. HHee

aaggrreeeedd ttoo sshhaarree wwiitthh uuss tthhee aarrttiiccllee iinn llaassttiinngg mmeemmoorryy

ooff hhiiss mmootthheerr..

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

Osc

ar G

ime

ne

z

16

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.

Cancer Networks in ItalyEarly Experiences

Marco Sartirana

R egional cancer networksfirst came to prominenceten years ago according tothe Strategic Health Plans of

some Italian regions. They evolved overthe years and are seen today as the solutionfor increasing quality of care and equity ofaccess, for fostering knowledge transfer amongprofessionals and especially for managing publicresources more effectively. The steady progress ofthe network was summed up by the managingdirector of the cancer network of Tuscany, one ofthe largest regions of central Italy, who said, “Whenin the late ‘90s I started talking about regionalcancer networks in Italy, people smiled withsarcasm. Nowadays they take down notes.”A more rounded and detailed analysis of these

networks was launched by researchers from theCentre for Research on Health and Social Care

Management(CERGAS) of Bocconi

University, and is stillin progress.1 In

interviews with thenetworks’ managing directors

and from analysis of theregional decrees, Lega and Tozzi2

found that cancer network projects had beenlaunched in 15 out of 20 Italian regions,underpinned by the 2001 reform of the Fifth Titleof the Constitution. These reforms transferredresponsibility to provide healthcare from the stateto the 20 regions, devolving to them the strategicplanning and control over the 200 local healthauthorities, the 100 independent public hospitaltrusts, the research and teaching hospitals and theprivate accredited hospitals.

F E AT U R E

Fin

tast

iqu

e/

Ala

my

17

REGIONAL DEVELOPMENTSThe researchers found that only six cancernetworks are functioning effectively – Tuscany,Piedmont and Valle d’Aosta, Romagna, Lombardy,Friuli Venezia Giulia and the Trento province. Inanother five regions – Liguria, Basilicata, Lazio,Marche and Umbria – cancer networks have beenset up but have only partially been implementedwhile in other four – Abruzzo, Calabria,Puglia and Sardegna – the setting up of cancernetworks has formally been announced butnever been realised.The two first cancer networks of Tuscany andPiedmont, dating back to year 2000, recall manyfeatures of the UK model – the hub-and-spoke

hospital reorganisation, thecreation of tumour groups

and collaboration with primary care. Accesspoints have also been introduced in oncologyunits as front offices of the network services. Inboth regions, each with a population of about 4million, a lower managerial administrative tier hasbeen 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 stronglyfavoured by oncologists, since their discipline wasperceived to be “weak”, and the outcomesinappropriate in terms of quality and equity ofaccess. After the development of the networks, thenumber of oncology units increased from four to13 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 quitedifferent. Created in 2007, it arose out of theinitiative of the four Local Health Authorities,without the participation of the regional level. Itsdevelopment is directly connected with the setting

up of a brand new cancer centre, whichentailed a major centralisation of services.However, it did not impact on the

standardisation of care processes in theexisting cancer units. In this case, theprofessional community sponsored theinitiative, due to the acknowledgmentof one physician’s clinical leadership

and due to the desire to create acentre of excellence in cancer

care – Romagna was theonly district of the regionlacking a teachinghospital, and had beenexperiencing negativepatient mobility rates.Lombardy presents a

contrasting model. Being thelargest and richest region in Italy,comprising multiple cancer centres of

excellence, Lombardy is characterised by apurchaser–provider split and by internal

competition among providers. In this case, the goalof the Regional Health Department has been tocreate an integrated information system to controlprescribing practices (and as a consequenceregional spending) and to share patients’ medicalrecords. As a consequence, the network hadvirtually no impact over the centralisation ofservices or the standardisation of pathways.These, together with the networks of Trento andFriuli Venezia Giulia, are the four most developed

The Italianmodel

The SSN (ServicioSanitaris Nazionale)was established in1978 and modelledafter the British NHS.

It covers the entirepopulation, is tax-funded, and pro-vides most care freeof charge at pointof service.

The SSN has threetiers:� the central govern-ment at the top;� 21 regionalgovernments inbetween;� 180 ASL (AziendeSanitarie Locali) atthe bottom.

Source: CERGASCentre for Researchon Health and SocialCare Management

Emilia-

Data not available

18

projects. Cancer networks in other regions, onlypartially or not yet implemented, have taken as areference the UK-Tuscany-Piedmont model, since itprovides important leverage for clinicalgovernance and should increase quality andequity of access to the system. However, thereis a risk involved in mimicking other modelstoo closely, without taking into considerationthe facilitating conditions that accompanied thedevelopment of those networks. The researchersfound a perceived need to increase quality orequity in the system, due to the diffusion andeffectiveness of oncology units, but also aneed for strong clinical leadership andprofessional cohesion. If these conditions arenot present, as in regions with multiple centres ofexcellence (e.g. Lazio) or where the professionalcommunity is fragmented (as is the case in someregions in southern Italy), a single regional UK-likeorganisational model may not be suitable. Optingfor different solutions, or for transferringcompetency to lower organisational tiers with amore appropriate catchment area are possibilitiesbeing considered.

EVALUATING PERFORMANCEThe researchers were unable to examine networkperformances due to the absence of adequateperformance management systems that couldallow evaluation of networks’ outcomes in termsof cost-effectiveness, equity, quality andknowledge transfer. Some pilot reportingexperiences have been developed in Tuscany, butit is not up to date. Network managers perceivethat the establishment of effective informationsystems would constitute significant progress –their inadequacy is listed among the most criticalissues by network managers.Finally the researchers found that the two main

issues still to be tackled are the compensation of

network players and theinclusion of general practitioners(GPs).3 The former refers to the fact thatthere are no financial incentives forphysicians to take part in “network activities”,such as second opinions and multidisciplinaryactivity – this is considered a major obstacle forthe diffusion of these practices. The latter is aboutthe role of GPs within the network. The poorcollaboration between hospitals and primary careis a major issue for the whole system, not justoncology. This is how a network leader summed itup, “We have created a system in which the GPshould play a pivotal role, but this does not workat 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_maga-

zine.html

“When in the late ‘90s

I started talking about

regional cancer networks

in Italy, people smiled

with sarcasm. Nowadays

they take down notes”

introducing resources for nurses Working With Patients With cancer from the

putting evidence into practice: improving oncol-ogy patient outcomesEdited 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 measure-ment tools, and provides ideas for patient care and organiza-tional 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 nurs-ing 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.

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 AGREE-MEnT, EOnS wIll TRAnSlATE THE PEP RESOURCES InTO DIffEREnT lAnUAGES InClUDInG:

• GERMAn• DUTCH• SPAnISH• ESTOnIAn• DAnISH• fREnCH

lOOk fOR MORE InfOR-MATIOn fROM EOnS On THIS ExCITInG PROjECT In THE nEAR fUTURE.

20

The issue of cross-border health-care can be discussed in a variety

of contexts. A typology of care provisioncan centre on the sector (ambulatory versusin-patient care) and the financing of care(sponsored care versus out-of-pocket ex-penditure). In the case of medical tourismboth aspects are of interest with the addi-tion of the distinction between the realitiesof daily life in a border region versus long-distance travel.

SUPRANATIONAL VS NATIONALGOVERNANCEFrom the patients’ perspective, the reasonsfor potential cross-border mobility areman-ifold.1 Onemajor issue is access – this couldbe the access to therapies not provided intheir own country (as for instance orphandrugs, adult stem cells, proton therapy, etc.)or long waiting lists in the country of ori-gin, or simply a shorter travel distance to aspecialist across the border compared toone in the country of origin. For individu-als with limited or no insurance coverage,

differences in cost canalso be a reason to choosecross-border care, as the risein medical tourism to destina-tions like India and Thailand demonstrates.Stumbling blocks towards more patient

mobility, however, still exist. These can bedivided into governance issues on the onehand, and doubts concerning the impact ofcross-border competition on the quality ofcare and equity of care provision on theother. As for governance, some countriesfear the impact of increased mobility mighthave on the financial stability of their na-tional healthcare systems – in essence, theconflict concerns the role of supranationalversus national governance in the domainof health.Increased competition across borders can

hamper the role of the national regulatorybodies when it comes to supervising oreven guaranteeing quality of care for theirconstituencies. It is hard enough to findtransparent rating systems for quality ofcare within a single country, let alone a sys-

tem that can operateacross borders. Internation-ally-recognised accredita-tion systemsmay provide an option, as longas they reflect the variations in care provi-sion and professional roles across Europe.2,3

Aside from the difficulties in guarantee-ing the quality of care provided across bor-ders equity issues may also arise, withwell-educated and affluent patients beingable to cover travel costs and pre-pay treat-ment. Françoise Grossetête, EPP MEP, Rap-porteur on the Directive of Patients Rightsin the European Parliament, demandedmodifications of the directive to avoid ex-actly this problem.

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

Cross-BorderHealthcare

F E AT U R E

21

With regardto governance, con-

flicts between nationaland supranational legislation

may arise. Themodels of health-care delivery and financing are quite

distinct across member countries of theEuropean Union, with the contribution-based Bismarckian social security model inGermany and the tax-financed Beveridgemodels in theUK as themain organisationalforms. The conflicts between national andsupranational governance are centred onthree core themes – the sustainability of na-tional systems, the differences in benefitpackages across countries and the differingspeed in the diffusion of innovation.

EUROPEAN RULINGSBeginning 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 caseswhich have beenbrought to the Court in order to secure pa-tient mobility and choice across memberstates. At the core of these cases lies thequestion of whether the freedom to receivea service in the EuropeanUnion also appliesto healthcare. Since 1998, the choice of am-bulatory care providers across borders hassteadily been opening up; however, legalcertainty on the position of the in-patientseeking cross-border care is still lacking.On the legislative side, attempts to finally

create legal certainty on patient’s rights re-garding cross-border healthcare have beenin the making since 2002. On 2 July 2008,the European Commission published a pro-posal for a Directive on the cross-borderprovision of healthcare services in Europewith the intent to codify and clarify therules set down by the case decisions of theEuropean Court (COM 2008).4 Urgency hasbeen added to this undertaking by the rul-

ing of the Court in the case Watts vs theBedford Trust, in the UK (C-372/04),5 whereit was clarified that financial constraintscannot be driving waiting lists in the Na-tional Health Service (NHS).On 23 April 2009, the European Parlia-

ment adopted the cross-border healthcarereport during its first reading, which in-cludes a system of prior authorisation forthe reimbursement of costs of hospital care,although hospital care remains to be de-fined by theMember States. The report alsocomprised several positive measures, suchas reimbursement where the Parliamentagreed on principle that patients are to bereimbursed up to the level they would havereceived in their home country, and otherrelated costs, such as therapeutic treatment,accommodation and travel costs, and moreimportantly the agreement on special rulesfor patients with rare diseases and disabili-ties, in particular the right to reimburse-ment even if the treatment is not providedfor 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 Cross-Border Health Care Directive was finallypassed on January 19th 2011, giving Mem-ber States 30 months to implement it intonational law. While patients are now theo-retically free to choose their hospital, na-tional authorities may still institute a priorauthorisation system for “highly specialisedand cost-effective health care”.Independent of theDirective, several Euro-

pean regions have already succesfully initi-ated cooperative projects. Regional initiativesare already improving care, particularly emer-gency care, and also intensifying cooperationin training and education,6 aswell as e-healthprojects, as for instance in the newly-launched cooperation of hospitals in theAlpine region (http://www. aliasproject.eu).Patients will, in the end, benefit from the in-creased cooperation in training and educationacross borders, even if they will not actuallytravel to seek care abroad.

Details of the references cited in this article can be

accessed at http://www.cancernurse.eu/communi-

cation/eons_magazine.html

Future cancer health services willhave a difficult balancing act, firstlybetween increasing demands forcancer care and diversity of provision

and secondly between the need to respond topeople’s cancer health needs during and aftertherapy, while also controlling spending. Thereare several challenges to be faced in developingthe cancer nursing workforce, from the increasingage of Europe’s population, to the projected

shortfall in the number of nurses and the highlevels of skills and knowledge required to managehealth care provision.Epidemiological projections within the EU

suggest that the increasing life span of the olderpopulation will impact on cancer incidence.Between 2008 and 2060, the population of the EUaged over 65 is projected to increase by 66.9

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.

Planning forWorkforce Change

Sara Faithfull and Denise Cullus

22

million. By 2030, 25% of the EU population isforecast to be over 65.1 Cancer, as a disease of olderage, is also predicted to increase as the EUpopulation ages. This will affect the ratio of those inwork to those retired. Workforce issues also exist asinformal carers age.Nursing in both specialist and community settings

will need to embrace workforce change if we are tomaintain quality cancer care. A further effect of thechanging demographic is that there will be fewernurses entering the workforce – at present over half ofthe 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 convenientparking. Cultural differences in caring roles betweencountries also impact on the perception of nursingacross Europe.

INCREASED MOBILITYIn the UK, 35% of nurses are aged between 40 and49, with over 25% over 50. This means that only 1in 10 nurses is under 30.2 Other countries in Europeare facing similar issues, including Austria, Belgium,France, Germany, Italy and the Netherlands.Shortfalls of 70,000 nurses across five EU countriesare predicted (ICN 2009). This pattern is unevenlydistributed, some countries are experiencingunemployment among nurses, for example Spain andPortugal.1 As this older staff approach retirementthere needs to be sufficient numbers of youngerrecruits to replace them or an encouragement toentice staff to stay within the clinical setting.3

Mobility of staff across Europe within the nursingpopulation is therefore growing. In the UK, 15% ofnurses entering the UK in the year 2000 were fromEurope. Today it is 57% and growing, especiallyfrom the eastern European and new accessioncountries4 (see right). These changes across Europecan exacerbate shortages in some countries andpose ethical issues for recruitment of nurses acrossEurope. Mobility from low- to high-incomecountries can strip eastern Europe of its health careexpertise. The migration drivers are often financial,for example nurses migrating from Romania toBelgium seeking work to support families at home.Some of these nurses reported illegal demands forfees 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 nursingautonomy and professional satisfaction, have alsobeen identified as drivers for nurse migration.Mobility gives rise to issues of the comparability of

F E AT U R E

23

qualifications and differences in experience acrossEuropean health systems. The development of Europe-wide graduate-level nurse education is promotingharmonisation at the level of the registered nurse.5

However, recognition of postgraduate skills andqualifications for specialist areas such as oncology stillvaries widely across Europe.The increasing complexity of treatment delivery in

oncology is challenging educators and work-basedtraining. Nurses now require broad skills and higherlevels of proficiency and competence. In manyEuropean countries post-registration nurse roles, suchas a clinical nurse specialist in breast care, are notrecorded or legislated for. Therefore there has been agrowth in titles and diversity which makes workforceplanning more challenging.6 Education is thereforefundamental in relation to increasing skills andmobility, keeping those nurses once they are trained,and sustaining continuing professional development.7

What this workforce will look like and which skillswill be required to manage future cancer care arequestions that should be addressed at national aswell as local level.

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

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

Challengesfaced by theEU healthworkforce

� the demographyissue (ageing globalpopulation and ageinghealth workforce);� the diversity of thehealth workforce;� the weak attractive-ness of health-relatedjobs to new generations;� the migration ofhealth professionals inand out of the EU;� the unequal mobilitywithin the EU, in par-ticular health profes-sionals from poorer toricher countries withinthe EU;� the health brain drainfrom Third countries.

EU Green Paper on theEuropean Workforcefor Health http://ec.europa.eu/health/ph_systems/docs/work-force_gp_en.pdf

Number of new EU nurse registrants in UK4

The

Swe

dish

Soc

iety

forN

urs

es

inC

an

ce

rCa

re Nurses now require broad

skills and higher levels of

proficiency and competence

Established in 1999 and funded as partof the UK National Health Service(NHS), the National Institute of Healthand Clinical Excellence (NICE) issues

guidance to NHS bodies throughout England andWales on the appropriate use of selectedhealthcare technologies. It issues best-practiceguidance on the treatment of particular clinicalconditions and the use of particular clinical orpublic health interventions, which are based onassessments of effectiveness and cost-effectiveness.1

Regional funding bodies are required to ensurefunding is available for the use of healthcaretechnologies that NICE has recommendedthrough Technology AppraisalGuidance documents (TAGs). Thepressure on resources means thatfunding is unlikely to be madeavailable for technologies thatNICE has decided do not constitutegood value for money. Despiteengagement with clinical andpatient groups throughout thedecision-making process, decisionsnot to fund particular treatments oftenresult in public lobbying from interestgroups and negative comment in thepopular media. Nevertheless, the NICE

24

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

clinical studies set out to investigate the

views of health service managers,

clinical professionals and patients.

Does the NICE Model

“Q: Have youever heard on themedia anything aboutNICE, the National Instituteof Clinical Excellence?A: Who?”(Breast cancer patient)

Domanic

Li

F E AT U R E

decision-making model iswidely admired byinternational policymakers,and the World HealthOrganization has praised NICEas a beacon model for healthtechnology assessmentagencies.2,3

Despite the widespread interest inthe NICE process and the expectation

that its influence will gather rather thanlose momentum under the auspices of the

UK’s new coalition government,4 little is knownabout how NICE guidance influences the decision-making at the consultation level, or about how it isviewed and experienced by patients.5 An interviewstudy was initiated to find out how health servicemanagers, clinical professionals, and patientsregard the role of NICE in theory, and how usefulsuch guidance is to them in practice.6,7 Two clinicalcase studies were used, relating to the treatment ofbreast cancer and morbid obesity, as part of a widerinvestigation into experiences of implicit andexplicit healthcare rationing. Nine healthcaremanagers, 12 clinical professionals, and 31 patientswere interviewed for the study.The study showed that, whereas both managers

and clinicians liked the idea of NICE in theory, inpractice guidance was of more importance andusefulness to professionals working in managerialroles rather than clinical ones. Managers viewed

Work? “I think where we[clinicians] perceive that NICE

guidance has come up with

politically correct statements, I

think we are pretty sceptical and

probably ignore it. For instance …

prescribing of obesity medications

… I don't think that's the right

solution to those problems.”

(Primary care clinician)

25

“ ”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)

26

the implementation of NICE guidance as of theutmost priority in the organisation of localhealthcare provision, and routinely displaced otherpriorities to fund them, even where they personallyfelt opportunity costs of implementation wereunjustified. However, clinical professionals applieda patchy approach to the implementation of NICEguidance, depending on whether it fitted with theirpersonal opinion and interpretation of the evidenceavailable, as well as whether funding was availablelocally to provide care.For the breast cancer clinicians in particular,

NICE guidance was felt to be out of date, and bothclinical discretion and the local economic contextfor care provision were more important factors indecision making.For patient contributors, although all were

accessing treatment for health conditions whererelevant NICE guidelines existed, many had neverheard of NICE, and it was clear in only six casesthat patients clearly understood the role andfunction of NICE. This widespreadignorance of NICE guidancecontradicted the expectations ofseveral professionalparticipants.Although some patients

did know about relevantNICE guidance, they hadgenerally learned aboutthis through their ownresearch or experienceworking within the NHS,and were very unlikely to be

alerted to this information by clinicians, whoseemed concerned this would result in demands fortreatments they could not then provide.Even where patients knew about NICE guidance

detailing their eligibility for care, this was oflimited usefulness to them as they were not thenable to use it successfully to argue that they wereentitled to NHS treatment.The findings suggest that NICE guidance does

not always fulfill its main objectives to promotesystematic and accountable decision making and topromote regional consistency in the availability ofcare.8 Decision making cannot be seen as fullyaccountable if most patients do not know about theexistence of relevant NICE guidance, and, evenwhen they do, are unable to use it to assert theirright to NHS treatment. Additionally, local fundingpressures coupled with the relatively low statusaccorded to NICE guidance by clinicians meansthat implementation at the local level is haphazard

and inconsistent, supporting previousfindings that significant regional

variations in the availability oftreatment persist, even whereNICE guidance has beenpublished.910

The findings from thisstudy highlight theimportance of ongoingresearch to facilitate theimplementation of NICEguidance into clinicalpractice, and to investigatehow guidance can be mademore accessible and useful

to patients at the point ofaccessing care. A fuller

discussion of the findings ofthis 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_maga-

zine.html

NICE guidance does notalways fulfil its mainobjectives to promote systematicand accountable decision making

“ ”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)

26-27 April 2012

GenevA, SwitzerlAnd

www.ecco-org.eu

Save the date

the european Oncology

nursing Society presents:

EONS8_Geneva_210x270_18-7-11_Page2.indd 1 18/07/11 13:56

28

The number of specialist cancernurses continued to grow in the

past decade. At the same time, new roleswere created, such as advanced nursepractitioners, physician’s assistants andconsultant nurses. In some countries thesedevelopments took place because of the

lack of medical practitioners, more com-plex care pathways and the need for carecoordination. In the European Union (EU),variations between member states in therole and function of nurses has becomenoticeable. 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 dis-parities – both geographic and across can-cer types – resulting in some patientsgetting easier access than others to spe-

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.

Franzisca Schneider and Sara FaithfullWhat Does a SpecialistNurse Mean Across Europe?

Corbis

F E AT U R E

29

cialist nursing support.1 At EU policy levelthe only identified specialist nursing roleis a recommendation for breast specialistnurses working in breast treatment cancercentres.2 There is as yet no obligation formember states to provide adequate qual-ity healthcare or any guidance on special-ist nursing roles in oncology. Furthermore,while in many EU countries specialistnursing roles are not recognised, in others,additional education and continuing pro-fessional development have led to ad-vanced roles and improved employmentprospects. Should the benefits in develop-ing greater specialisation be somethingthat nurses aspire to and is there consen-sus across Europe on role definition?There is now clear evidence that pa-

tients have benefitted from specialist can-cer nursing over the years, in particularbreast cancer and lung cancer nurse spe-cialists. Several studies have shown thatspecialist nurses can improve patients’emotional wellbeing, enhance symptommanagement and reduce hospital re-ad-missions.3 This raises important questionsabout what specialist nurses do that othercancer nurses can’t, what additional skillscan they provide that a trained oncologynurse can’t, and how do we distinguishbetween these role titles? This is a contro-versial question and one that policy mak-ers, health funders and managers areincreasingly asking, especially in thesedifficult times.Differences in general specialist nursing

roles have been described in someoverviews. Sibbald4 identifies these new

Clinical nurse specialist

� Assessment, diagnostics and treatmentplanning for patients

� Substitution of medical roles� Autonomy within defined parameters� Limited decision making

� Case management� Specialist knowledge that adds and enhancesexisting care for patients

� Defined client group� Limited decision making

Advanced nurse practitioner

� Case management, assessment treatmentplanning and intervention for patients

� Provides innovative total care package� Autonomy in decision making

Consultant nurse

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

Austria Y Secondary level

Belgium* Higher level Y

Bulgaria* Y Y Y Y

Czech* Y Y Y Y

Croatia* Y Y

Denmark* Y Y Higher level Y

Estonia *

Finland†

France† Y Secondary level

Germany† Y Berlin Hessen Secondary level

Greece* Y

Ireland* Y Y Higher level Y

Italy* 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

Legislation for Specialist Educational CNS Workforcepost-basic oncology nurse standards guidelines

specialist nursing

Table 2. Difference between specialist and oncology nursingroles in EU countries

*Countries participating in the EONS 2009 survey.†Based on the EU study of specialist nurses MARKT/D/8031/2000.

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roles as falling into three categories: thespecialist nurse, the advanced nurse prac-titioner and innovative roles such as thenurse consultant. Each of these roles hasdefined responsibilities and scope (Table1), with the autonomy and authority tomake decision being fundamental to thedefinition of the role. Legislation in somecountries, for example in Ireland, definesclearly the specialist nurse role and dis-tinguishes between the differing titlessuch as advanced nurse practitioner andspecialist nurse.In 2001 Glaus5 reviewed European na-

tional nursing societies as part of a Euro-pean Oncology Nursing Society (EONS)survey, and explored indicators of the sta-tus and characteristics of cancer nursingfor the first time. Issues that influencedprofessional development were reportedto be work conditions, education andnursing developmental issues. Cancernursing was recognised as a speciality inonly 11 countries within the healthcaresetting and post-registration cancer nurs-

ing courses were available in 16 Euro-pean countries, but with wide disparitiesin education and contact time (from 40 to800 hours). Cultural and language barri-ers made it difficult to record sufficientdata from cancer nurses to get a full pic-ture of their work roles. It was recog-nised, however, that there was a need toimprove the status of cancer nursingwithin Europe.5 Ten years later, an updateof this data was undertaken as part of anErasmus project to review the character-istics of specialist cancer nurses withinEurope, in particular identifying the na-tional and local legislative requirementsfor specialist nursing across Europe andhow this reflects on cancer nursingroles. EONS member societies were askedto complete a short questionnaire onwhether they had specialist cancernurses within their country, the educa-tion and training requirements and thepractice domains and support structureswhich are in place for the role of cancernurses within their country.For many countries there is still a long

way to go before specialist cancer nurse

A clinical nurse cancer specialist is a recognised general nursing professionalwho has acquired additional oncology knowledge, skills and experience,together with a professionally and/or academically-accredited post-registration qualification in the clinical specialty. He/she should demonstratecharacteristics 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

Definition of a specialist cancer nurse

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

F E AT U R E

roles are defined. Post-basic training in on-cology nursing and work recognition isnot the norm across Europe. Those coun-tries that have specialist cancer nurseroles (n=13) had a variety of legislative orworkforce-based components (Table 2).Despite these differences, there was aclear consensus on the elements defininga cancer nurse specialist’s role (Fig. 1).Namely, the specialist oncology nurseshould function as a clinician, innovator(for care pathways in cancer care), educa-tor of care, researcher, coordinator, casemanager and leader (of general nurses/ ina multidisciplinary team).Surprisingly, barely half of the national

oncology nurse societies consider treat-ment planning (50%), and tumour spe-cialisation (57%) as crucial attributeswithin the role of the specialist cancernurse (Fig. 2). These roles are often de-fined within that of the advanced nursepractitioner.The lack of a clear definition also be-

came apparent in the responses to theopen-ended question about the individualskills that a specialist cancer nurseutilised. Answers demonstrated little com-mon ground. There was, however, agree-ment that cancer nurse specialists shouldhave work experience to gain specialistknowledge and that work experienceshould be augmented by a specialist can-cer care courses, or post-basic education.In some countries significant barriers

remain in the cancer care setting, includ-ing a lack of explicit educational criteria;confusion about educational require-ments; lack of formal training in oncologypractice and ad-hoc implementation of thenursing role are of secondary importance.The lack of consensus on skills for spe-cialist cancer nursing reflects the diversityof nurse training within Europe. In thesurvey by Glaus,5 only four countries re-ported a Masters programme in cancercare. By 2009, however, this number hasdoubled to eight.The lack of guidance from regulatory

bodies regarding the minimum educa-tional standards and skills required forincreased continuing professional devel-opment for specialist nurse status high-

lights the need for further work. As the ed-ucational requirements for basic nursetraining is harmonised across Europethrough the Bologna process, graduatetraining for nurses becomes more thenorm. It is therefore important to definethe differences in level of education androles, so that there is joint understandingand transferability across Europe.In the difficult financial times health-

care budgets face, we need to identifymore clearly what specialist clinicalnurses do and how this can benefit patientoutcomes. This need is connected to asteady rise in the complexity of healthcare knowledge and technology. The ca-pacity of specialist nursing care is devel-oped after completion of basic oncologynursing education and should enable andfacilitate the delivery of care according tothe needs of particular patient groups.One of the medical specialities that per-sistently display a particularly large shareof advanced or special activities is oncol-

ogy.6 The rising specialisation in cancercare and the economic pressure in pro-viding complex health treatments andservices are indeed promoting the role ofnurses.7

New definitions are emerging from cen-sus data and studies of specialist nursepractice.1,3 Despite differences betweencountries in the skills and training re-quired for specialist nursing there was re-markable consensus on what the role ofthe specialist cancer nurse should be inEuropean oncology nursing practice.Areas of difference were over the level ofautonomy and treatments provided by thenurse within the specialist role. A Euro-pean consensus paper defining what is acancer nurse specialist, competencies andeducational standards would help intransparency and clarity.

Details of the references cited in this article can

be accessed at http://www.cancernurse.eu/com-

munication/eons_magazine.html

31

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

Highly Educational Oncology Nursing & Symptom Science Tracks: Latest Findings in Treatment and Care.

4-day programme Interactive workshops Special sessions Teaching lectures

Don’t miss this unique opportunity to meet and discuss with nurses and nursing experts from around Europe.

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The 2011 European Multidisciplinary Cancer Congress

The European Multidisciplinary Cancer Congress

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STOCkHOLM, 23-27 SEPTEMBER 2011

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