Oncology nurses should take the lead
Birgitte Grube – President of EONS
It’s great to have you here and before I ask you about the interesting thing you’re doing on working with patients, how difficult was it to organise such a wonderful, broad-reaching conference as this?
Well it is really a huge challenge to arrange these conferences. We have a range of people from all over Europe to arrange these conferences; there’s a committee, scientific committee, to arrange it and these people are from all over Europe in different areas of the cancer nursing.
And are you finding that people are beginning to think with one mind and speak with one voice?
Yes they are, they are trying to really. Even though some think it’s hard, also because of the language barriers, there are still some things that we are struggling with, the language barriers. So we’re trying, the Eastern countries of Europe, we’re trying really hard to get them involved in both these conferences and also working groups because it’s something they always say.
Europe is indeed very varied at the moment so are there big inequalities in care, nursing care, from one country to another?
Yes there are because of the financial crisis, some countries also experience that the nurses, the healthcare system want them to have more education and they really will maybe apply for more education. But then when they have the education they tend to move maybe to another country also because they can’t get a job there. So that’s some of the problems we’re facing.
A brain drain.
You’re stressing, though, here at the conference, working with patients. I know you’ve personally been concerned with the European Cancer Patients’ Coalition, what have you been doing and what do you mean by working with patients? Isn’t that what medical carers do all the time?
Yes we do it in the clinical way but I do think it is so important also at the political level to work together with the cancer coalition and especially the ones in Europe, the ECPC as they are called. We work together with them because patients, they have stronger voices than the clinicians or the physicians or the nurses in political areas, the EU.
And what’s coming out of this? What do you mean by working with patients?
We have especially worked on the personalised medicine area and together with the patient we have tried to make it more like personalised treatment and care because personalised medicine is really about genomics, DNA and the medicine really targeting the DNA and the right medicine for the right patient at the right time. What we’re saying is it’s much more than that, it’s a more holistic approach – you should also think about the patients’ social status, did they experience something else in their life before, how did they cope with that? And the patient and the nurses now have a voice there and it’s also about educating the medical, the healthcare professionals.
What sorts of things have you got to say about improving personalised treatment and care? Give me a few practical examples.
We have tried to say that it’s very important in the communication with the patients that the patients do understand what it’s about, the personalised medicine treatment and care. Because a lot of patients, they think that they have a choice but they don’t really know the choice because they don’t understand what it’s all about. So in that way if we educate the nurses and the patient, together with the patients, knowing what is needed to know about this, we can have a really good collaboration with the patients about this. Because it’s about their lives, if it is personalised it is something about the whole life of the patients. So the interview and the communication should not only be about the medicine but about a lot of stuff, about their work and social. So these are the things that we have put into that personalised medicine, it’s a coalition in the EU now.
And the nursing input is a significant part of the multidisciplinary approach too.
It is because right now it’s ten or fifteen physicians from various areas sitting there and there’s only one nursing voice right now. So EONS, the European Oncology Nursing Society, is now in the lead for the education of the healthcare professionals. So that’s where we have put our voice in this area.
I know one of your interests is in disadvantaged groups, what is your particular point there?
It’s that when we talk about empowering patients, it’s also a new public management word that we should empower patients. Sometimes we tend to forget that there’s a whole group there which is disadvantaged in every area there, both socially and maybe also something – they can’t really read when we hand over written material, they don’t understand to follow a treatment. So I do believe that the nurses have a really specific role here, a very important role, to take on the lead to help these groups, disadvantaged groups. Also sometimes I think we tend to treat and care for people that look like ourselves and the ones who don’t, how do we reach them? Because sometimes they don’t attend patient education or relative education classes that we provide for them. The disadvantaged group, where are they? So I do think that the nurses, the cancer nurses, have a really significant role here and should take the lead.
A professional approach to this is going to make all the difference, as long as people are aware of it, let’s say.
Exactly. Of course education is also very important here, to educate the nurses about the disadvantaged groups so they will really be aware of this group. The cancer is also becoming a social disease because you see that survivors, and there are a lot of survivors, but for the one who is disadvantaged it’s actually going the other way.
Quite a warning. And nurses, I understand, you think should have more of a political voice nationally.
I do, I do believe that. Before I became President for EONS I was President in the Danish Cancer Nursing Society and one of the things that I really put forward in the political arena was to have specialised education for cancer nurses, one year education at Master’s level. That was dealing with politicians and writing letters and coming to meetings and I do think a lot of nurses should do the same in the EU, now EONS is trying to do that. I do think we have a voice, I think we should speak up. I know it sounds like well, can we do that? I do believe we can.
Finally, what would you like to see happening, then, in the short and medium term?
I would really much like that nurses will become a part of the multi-professional team and in that way to influence the politics, both national and also European. I think we are getting there but there’s still a lot to do.
And are we getting there with personalised treatment and care?
That’s a way, that’s a way to do it and the way we have done it was through the patients because they have stronger voices. If you are a patient, and also the politician, maybe they themselves have had cancer or they have a relative who have, so when they become a patient and say something. So that’s the way we have done it, to link with the patients there because they have a strong voice in the EU. So now they know us, some part of it. So that’s a way, I think it’s very important for the future as well.
Thank you very much.