EONS is excited to announce our President Danny Kelly’s monthly blog. Danny will use the opportunity of the blog to express his opinions and views in relation to the presidency and the events taking place around it. As President of the largest and oldest European cancer nursing charity, we are sure readers will be interested in reading not only his thoughts but learning more about what the President does, what are his interests and what are the current challenges. We are hoping that the membership will enjoy reading his blog and we would be interested in your feedback.
July 2017: Do we work in a death-denying culture?
In the late 1980s, I was working at St Columba’s Hospice in Edinburgh, Scotland. I had recently completed the oncology nursing course at The Royal Marsden, in London, UK, and had returned to Scotland to a post as the senior nurse in charge on nights. One of my fondest memories of that summer was watching the sun rising over the Firth of Forth while the patients slept and before the city was fully awake. There is a unique sense of quiet at that time that is one of the perks of working such unsocial hours. I would then cycle home to bed as everyone else made their way to work. (I later decided that one year working at night was enough and I then moved to a new role in AIDS care.)
Apart from the sunrises, I also remember the work that we did and the nursing staff that I worked with at that time, many of whom were older women who worked part-time. They cared for the patients so well and I learned much about palliative nursing from them. I also recall some of the patients and remember them arriving, often exhausted and apprehensive, from the acute oncology hospital nearby (I was later to work there also in a charge nurse role). These patients had been through whatever cancer treatments had then been available, usually a combination of chemotherapy with surgery and radiotherapy. The pursuit of cure was intense, until this phase was over, and patients either returned to their lives or were referred to the hospice for end-of-life care or symptom management. For the acute oncology unit staff, their job was primarily curative and end-of-life care was best delivered elsewhere (although we also cared for many dying patients in the acute oncology centre, and we did so very well). The hospice was saved for those with more complex needs, or with symptoms that were best managed in a setting with the time to focus on their relief.
At the first meeting, people were often terrified of what a hospice actually was. In the acute cancer setting the focus had been on their cancer and its changing dimensions and degree of threat. Inevitably, with this focus on cure, it was difficult to also acknowledge the fact that, despite the best efforts, death was always a possibility in the end. However, it was always there in the background, like an unwelcome smell.
Having experience in acute cancer care, and reflecting on changing attitudes, it seems that we still struggle to deal with dying in acute settings. It is still difficult to manage conversations about death when we lack the time, or the training, or the will and courage to do so. The risk is that we inadvertently perpetuate a death-denying culture in a specialty where its avoidance can only add to a cancer patient’s already present sense of isolation. Whilst many people will now enjoy cure, others will eventually succumb to their cancer. I am not suggesting that we should emphasise the risk of dying, rather we need to consider how the culture of modern cancer care allows us to manage this outcome, or encourages us more often to simply avoid it.
In the hospice, death was an inevitable companion but it was not the sole topic of attention. Instead, time seemed to slow and comfort became the focus. Those who worked in the hospice certainly dealt with death on an everyday (and every night) basis, but my recollection was that the value was placed on living.
St Columba’s Hospice celebrates its 40th anniversary this year; when I worked there it was marking its first decade. I went back recently to look at the new and expanded buildings and hoped that the sunrises were still visible to those nurses still working there at night.
May 2017: Celebrating cancer nursing
On 18 May, EONS will be launching the first European Cancer Nursing Day (ECND). We have a dedicated ECND website www.europeancancernursingday.com and will be hosting a new ECCO position statement on Specialist Cancer Nursing. We are also busy with our flagship RECaN project; with the first phase almost complete and the second already well underway.
This important activity is thanks to the hard work of the people involved in making it all happen, and our multi-disciplinary colleagues on the ECCO Board and Oncopolicy Committee who have put their faith in demonstrating the value of cancer nursing. With all this going on, especially the countdown to ECND, it is an incredibly busy time but we are also aware of the many benefits that these projects can bring to help raise the profile of cancer nursing.
When I see what is being achieved already, I feel really proud of all our EONS volunteers and I know that it will prove to be a great success.
On 18 May, EONS will be in Estonia with cancer nurses working in that country. We will be launching ECND with Estonian colleagues and will be tweeting all about the activities from @cancernurseEU; and you can join in by using the hashtag #ECND2017 to show what you and your colleagues are doing to celebrate the day. There’ll also be updates on EONS Facebook for you to follow.
You don’t need to wait until 18 May to find out more about what’s going on though - you can visit our special ECND website now. There’s lots of really interesting material there, including clinical nurses talking about their role in caring for cancer patients.
One of these nurses, a very experienced colleague, explains the importance of nursing skills and for patients to have confidence in their nurse. He gives the example of a patient leaving home in the morning who might be feeling nervous about whether their nurse will be able to find a vein to deliver their chemotherapy. This may seem a small thing, but to the patient this anxiety can overshadow their whole day and lead to other worries and fears about their cancer and their future. This nurse, to me, captured the essence of cancer nursing: paying attention to the person and what their present needs really are.
This is what we will be celebrating on 18 May and we hope everyone will help us to spread the message that it’s time to recognise and to feel proud of the work that nurses do to make cancer more bearable.
March 2017: Turning away
I was travelling home on a train in London recently on a rainy night and was sitting next to an older woman reading a newspaper. We were getting off at the same station and when she got up to leave she left the newspaper on the seat. I asked her if she had forgotten it but she said no, smiled and asked if I wanted it myself. As we waited for the train to stop we chatted about the bad weather and what the day had been like for each of us. I said I had been to Cardiff and she told me she had been to a concert. Saying goodnight to her I thought no more about it.
As it had been a long day and was raining, I decided to get a cab for the final part of the journey and spotted her again from where I was standing in a shop doorway nearby. She was looking rather lost and approached a younger woman who was standing in another doorway smoking a cigarette. The older woman was asking her the way back to the previous station. (Our train had not stopped there as expected.) She seemed to be struggling to remember the name of this station and I then realised that she seemed to be confused and starting to panic.
The younger woman answered her at the same time as I did and together we mentioned the name of the stop. The older woman then turned to me and asked me which direction this was in. As she did so, the younger woman looked at her and then turned away and walked off into the night without engaging in any further conversation. She did not offer any assistance and did not seem to want to get any more involved. I showed the older woman to the ticket office and she said she would take the next train back. This event stayed in my mind and later made me think about the younger woman’s lack of engagement.
What had led her to do this? Was it just one thing too many? Was she seeing a potential problem that she wanted to avoid? It made me think of the choices we make to engage with people who need something from us, even just some advice on directions. In cancer practice, such demands occur all the time and, if managed well, we can usually help address an immediate need whilst also knowing what is beyond our own limitations at that time. To think about such situations is to reflect on how we live and how we act. We may not always get these things right but to those of you who do choose to help, it’s time to take a bow and be counted.
Modern cancer care, with all its pressures, needs nurses like you.
January 2017: A very happy, healthy and successful new year to everyone
I began writing the first part of this message on a train returning to work after the Christmas break. After the bright lights of the Christmas season we witnessed the turning of the year and more very short days (at least in northern Europe!) but also the promise of spring just around the corner. Already there are bulbs coming up in my London garden and they always remind me that a new year offers us all new opportunities. However, here in the UK we also face uncertainty over Brexit and what this will mean for our everyday lives. We also look ahead to the new American President. The amount of change and uncertainty that we face at the opening of this new year makes it difficult to predict what lies ahead, and many of us will be looking forward with a combination of hope but also perhaps some concern.
Whatever 2017 brings, I know that EONS will continue to support cancer nurses across Europe (and beyond). As an organisation, EONS is also facing its own challenges but we are facing up to them with optimism. I know that EONS has excellent prospects and we are excited about taking part in ECCO17 in Amsterdam very shortly. A new format has been introduced for the congress this year and we look forward to taking our place at the heart of this unique multi-disciplinary forum. Do join us if you can.
We have our own Society Day on Friday 27 January with an excellent array of speakers, and a joint session with the Oncology Nursing Society (ONS) and pharmaceutical companies on Sunday 29th to explore the changing role of oncology nursing. There is also a discussion session on multi-disciplinarity in a forum that includes the EU Health Commissioner. Importantly, we will be presenting early findings from the first phase of the RECaN study. Over the next year, we will be continuing with the second phase, consisting of case studies in four European countries; I am looking forward to discovering how cancer nursing is developing in each.
We will also be publishing the protocol and results of our systematic review from phase 1 of RECaN during 2017. I know that this has already identified a wide range of trial-level evidence of interventions carried out by nurses. ECCO will also be continuing to develop quality statements for a different range of cancers and we will be inviting colleagues to represent EONS in this process. We were closely involved in the statements produced on colorectal cancer and sarcoma that were produced during 2016.
My first trip this year was to Bethlehem University where I was teaching a module on cancer as a chronic condition. This is part of a new diploma in cancer nursing that has been established by Dr Jaqualyn Moore of King’s College London and the University. A number of other colleagues will also be teaching this course over the coming year. I am really pleased to have the opportunity to be visiting Palestine and to meet the members of the Cancer Nursing Society there. Myself and Matt Fowler from the Heart of England NHS Foundation Trust, Birmingham, UK (and recipient of the EONS travel award in 2015) flew out on January 17. This feels like a positive start to a year that is likely to be both challenging and intriguing.
Perhaps a quote is a good way to end this first blog of 2017. I can offer the words of an inspirational American woman, Eleanor Roosevelt, who suggests the best way to approach challenging times:
‘It is better to light a candle than curse the darkness.’
A very happy, healthy and successful new year to everyone!
December 2016: Thanks to all cancer nurses
I admit to sometimes feeling envious of colleagues still working in practice. I miss cancer care practice and I miss the contact I used to have with cancer patients. After a difficult day, a reward always came from the contact and help that was given to patients and families. For non-nurses this is perhaps difficult to understand. When nurses like myself move into other roles, such as teaching or management, there is often a broader remit but less opportunity for direct patient contact. When I left practice I left something very special behind, though now I enjoy the opportunities to visit colleagues and speak to nurses who are real experts in what they do. I must also say, however, that nursing expertise really needs to be recognised and rewarded and the many facets of nursing understood. This is one of the aims of the RECaN project that will continue over the next year.
There was a powerful short film produced by the RCN in 2012 that captured the roles of UK nurses as they went about their daily work, and it helps remind us of the range of skills that we all, as nurses, possess.
As the Christmas and New Year season approaches, I want to celebrate the many cancer nurses across Europe who will leave the warmth and comfort of their homes to care for patients. You deserve the greatest of respect and I know the families and loved ones of those you care for really appreciate the care you will be giving this holiday season.
Myself and the whole EONS team send our best wishes to all cancer nurses, wherever you will be working this holiday season, and whatever role you will be playing, and hope you will join us in our activities in 2017 to help you develop the very special contribution that cancer nursing makes.
November 2016: Reflecting on conferences
Having just returned from our EONS-10 in Dublin, I was soon off again to the AIOM (Italian Association of Medical Oncologists) congress in Rome and thinking about the way that cancer professionals travel around the world to meet up at all these different conferences. Rising at silly hours to catch trains or flights made me wonder whether they really a good use of our time (and money) or could we do just as well without them?
I’m not sure whether anyone has done research into the impact of conferences but they probably should, given the amount of time and effort involved. They certainly are big business and can attract people from all over the world and all sections of the healthcare profession, as well as industry. But they are much more than business events in my view.
There is nothing quite like meeting people face to face to get a feel for their opinions and concerns. Visits to different countries also allow social events to take place, including the sharing of meals and talk, trading jokes (that may or may not work in translation!), and the opportunity to hear about the everyday lives that people are living. The members of the EONS Board always supply interesting anecdotes at such times and I am happy to listen and ponder on all our lives, as different Board members have come and gone over the years.
This is what also fascinates me about conferences - the way that a sense of shared purpose quickly develops and, just for a few days, people feel a sense of connection as they meet friends old and new. I enjoyed walking around EONS-10 last month and intentionally striking up conversations with people I had not met before. It’s an interesting thing to do and it’s amazing what you learn!
In the sessions themselves, I was struck by the high quality of the research and how colleagues put their work across in such a professional way. There was also a wide range of posters that captured the full range of concerns that cancer nurses assist people with. I enjoyed acting as the discussant in a session on symptom assessment and I could see connections between the meaning of symptoms and nurses’ drive to manage them better. This was also an example to me of showcasing strong science that demonstrates just how much the evidence-base of our discipline has developed.
Our next big event is coming up in Amsterdam in late January 2017, when we take our place as part of the large, multi-disciplinary congress that is ECCO17. I think this will be a very interesting one as we will have our own EONS one-day programme and thereafter nursing is included throughout the rest of the programme too. There is even a discounted rate available for EONS members to tempt you to venture out in January… Find out more at http://www.eccocongress.org/Registration
Come and give it a try and let’s talk - I can’t promise what you will learn but it might be more than you expect!
September 2016: Nurse leadership through a pan-European lens
As events around Brexit have shown, nothing should be taken for granted in politics. I argued last time that the same is true for life. Over the past few weeks, I have been reminded by events that Europe is far from being a homogenous mass of attitudes and identities. In fact, things that we take for granted in one country (in my case the UK) do not apply elsewhere and we are reminded of this when colleagues from different countries come together.
The term ‘multidisciplinarity’ is a case in point. This idea (or ideal) goes to the heart of the ECCO organisation and is used as a catch-all term to capture the diverse perspectives of the organisations that, together, comprise ECCO. EONS was a founder member of ECCO and has, therefore, been at the table since its formation in the early 1980s.
Fast forward to 2016 and a discussion among a group of nurses from across Europe on multidisciplinarity and quality of care. A nurse from one country speaks of the value of holistic needs assessment in everyday practice. A colleague from another country and another discipline cuts in and challenges the need for nurses to assess patients in this way, arguing that this is the job of the doctor and nurses in their country ‘do not bother themselves with such things.’ This view was put in what might be called a ‘forceful’ way, and the first nurse responds by clarifying their role, their skills and the benefits brought to the patient.
So, we have an example of how different attitudes really are, despite the united front that we all like to promote. But what to do about this gulf? My view is that we continue to take our place at the table, to promote the value of nursing and to demonstrate the way that advanced roles can bring benefit rather than threaten the status of anyone else.
A second example is more positive and involved a meeting of nurses from across Europe involved in leading - or seeking ways to lead - services for AYAs (adolescents and young adult) cancer patients. Part of the programme focussed on coaching these colleagues to develop insight into their own personalities and to understand why others coming from a different perspective may fail to connect in situations when conflict or disagreements arise. Whilst differences across European countries certainly do exist in terms of AYA service provision, the importance of communication, assertiveness and clarification of one’s opinion were common traits in effective leaders.
Whether conflict arises in the clinic or in the meeting room, there is a need to speak confidently and to have our voices heard. Sharing these examples will hopefully demonstrate the types of challenges that remain, but also the opportunities that exist, for cancer nurses seeking to lead innovations across Europe.
A fine example of multidisciplinary working is our EONS Masterclass where, in joint clinical sessions, nurses together with physicians update their clinical knowledge about the latest issues for the management of various cancers, with an international faculty of experts. Why not try it out next year?
August 2016: A key lesson in life: be ready for the unexpected!
I took up the Presidency of EONS in Vienna last September, the fourth British nurse to be elected in the society’s 32-year history. Looking ahead for the next two years, I had identified priorities which were to focus on raising awareness of the needs of younger people with cancer, and promoting leadership for the nursing workforce.
At the opening ceremony of the ECCO (aka The European CanCer Organisation) congress in Vienna, where the EONS Presidency is passed on, it was announced that the main priority adopted by the ECCO policy committee over the next two years would be the recognition of cancer nursing in Europe. This came as a surprise to all the nurses in the room - but it was also an incredibly positive opportunity. EONS has since taken this challenge up and we have launched the RECaN (Recognising Cancer Nursing) project. This will be carried out in three phases, the first of which is already under way. We have started with a systematic review of the impact of cancer nursing interventions.
The first year of the EONS Presidency goes quickly and it is important to think about what can be achieved in the time available. The business of EONS is carried out not only by the board but also the four working groups and our many volunteers and staff. The RECaN project is taking place alongside the normal work of EONS, so it takes extra time to set up each phase and manage the work. All is going well and we are on track to make a real impact with this project.
Like many in the UK, I was rather complacent about the EU referendum result. I thought we would vote to stay and things would continue as before.
Then came Brexit!
Working closely with so many European colleagues I felt a real sense of disappointment and surprise at the referendum result. However, since 24 June I have had messages of support from across Europe confirming the EONS approach to collaboration and mutual support. We have also been sent reassurance from ECCO and other European cancer nursing societies.
Time alone will tell what the true impact of the United Kingdom voting to leave the EU will be. For the remaining period of my Presidency, however, I will use the time to complete the next phase of the RECaN project and ensure that the strong bonds across European cancer nursing societies will continue to grow.
The last few months have been a period of great change but to keep me focussed on the benefits of EONS I recall an Estonian cancer nurse telling us at the ESO Masterclass how they work 24-hour shifts and have one registered nurse to 15 acute cancer patients. To help support colleagues in Estonia we will be holding one of our board meetings there in 2017, and will include them in phase 2 of RECaN - a series of case studies in countries where cancer nursing is, or is not, well developed and recognised.
So, despite the unexpected, I am looking forward to another successful year for EONS and to our forthcoming EONS 10 meeting in Dublin in October. This is in conjunction with the International Psycho-Oncology Society (IPOS), the Irish Cancer Society and the Irish Association for Nurses in Oncology (IANO) - so we are continuing to look outwards, to collaborate and to work together to take cancer nursing forward.
From the last few months I have also learned that expecting the unexpected is perhaps the best philosophy for life!