Importance of support groups and communication

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Published: 11 May 2012
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Simona Ene – Hope Support Group, Romania and ECPC

Simona Ene began volunteering at the Hope Support Group in Romania to work with patients, but was diagnosed with a border line ovarian tumour shortly after.

Prior to her diagnosis, Ms Ene had found a large gap in information that was available in Romanian about basic cancer prevention and basic information about the disease. As a result she began to translate this information from English, which helped her recognise her symptoms early.

She now shares her experiences with others and explains how access to basic information led to her early diagnosis and potentially saved her life.

Ms Ene is also the Vice-President of the European Cancer Patient Coalition

Filming Supported by Amgen

EONS 2012

Importance of support groups and communication

Simona Ene – Hope Support Group, Romania and ECPC

You are representing patients, in a way, with ECPC, the European Cancer Patients’ Coalition, a very interesting group. Can you tell me a little bit about yourself though, because you’re from Romania, how did you get into this?

I started volunteering in a cancer patient group in my home town in 2003; this group had been set up by someone that I knew before, we’d been together to high school, she was diagnosed with breast cancer in a very advanced stage, she was 36 years old when she unfortunately lost the battle with cancer. I had continued to support the group, just transferred my knowledge from my job to the benefit of cancer patients, namely translation of information because information about cancer was not available in Romania. I looked on the internet for very professional information, most of them were in English and I translated into Romanian to be available for all patients.

So you saw that there was a gap, people needed knowledge, and your reason was to try and fill that?

Yes, people need basic information about cancer prevention and also cancer patients need basic information about the disease and treatment and rehabilitation. Translating these I learned a lot also about cancer prevention, cancer symptoms and one year later I’ve been diagnosed with a borderline ovarian tumour. So this first year of volunteering saved my life.

Gosh that’s a really big motivation, isn’t it? What would you say to other people, then, who might want to be interested in this sort of work with the patients’ coalition?

It’s a big challenge but it’s a huge satisfaction to see people staying alive, going back to their job, getting a new normality, even sometimes, and I faced this in Romania, the doctors said unfortunately the patient had three months, six months or one year to live and by my work I can prove the contrary. Patients for which the surgeon told to the family, “I’m so sorry for you, maximum three months,” the lady it’s three years, she has three years of survival, she’s gone back managing her company and she’s fit and fresh every day.

The patient’s perspective is a phrase that you hear at this meeting here in Geneva of cancer nursing. You’ve been talking about the patient’s perspective, that’s a very vivid illustration of that, so why is this so important?

It’s very important because we can work together and I have a motto that I also spread to EPCP: all of us is better than one of us.

That’s a very good motto.

So working together, because each of us has a certain field of knowledge and putting it together we make a whole. We can offer people a comprehensive support, a comprehensive approach to cancer and also together we can promote very well health and also make a very good campaign of public awareness.

Now I know you’ve here been talking about reaching disadvantaged groups of patients, can you tell me what new things you’ve got to say about this?

I share my experience of reaching disadvantaged groups in my country and one of the disadvantaged groups in my country are Roma people, abroad they are called gypsies. It’s a closed community, you have to get inside the community by the representative males of the community. We succeeded very well to reach this community by their sons, making them our volunteers, promoting a healthy lifestyle. And it was very interesting, they were very well connected to this.

So you see that there is potential and have you got big benefits from that?

Not my benefit, it’s everyone’s benefit. It’s important not to have a personal benefit but the community benefits because cancer is not an individual disease, it’s not only a family disease, it can be a community disease. Extended, it’s a European disease and it’s a world disease affecting almost everyone less or more. From the economic perspective, we have to think also about this, cancer affects everyone from an economic perspective because the health budget can be used more effectively by diagnosis in the early stage or there are also preventable cancers and this depends on the individual to reduce or to eliminate the risk of getting cancer. This will be a very good saving to the health budget.

You’ve got a lot of things to say for patients and all of the different aspects of cancer but I know you’ve also turned your attention here at the meeting in Geneva, which is a cancer nursing meeting, to the nurse-patient relationship. What are the new things that you can say about that and how it can improve and why it needs to improve?

You know, maybe you have been to a doctor, the first person that you meet is the nurse. If you are in the hospital and you face a difficult situation you’ll never yell for the doctor, you’ll yell for the nurse. The statistics said that the patient gets at least three times more contact with the nurse than with the doctor and until now patients were more willing to work with experts because we, as individuals, have a big fear of suffering and death and we think that the professionals help us for this more. But unfortunately I have the personal feeling that we neglect a little bit the relationship between patients and nurses. If you look on Google you do not find anything about nurses’ and patients’ relationships. There are a lot of things to do together.

Right, there’s a lot of things to do together. Have you got evidence that this improves the outcome of the treatment of the patient? Obviously it could improve things psychologically, do you have ways of measuring outcomes that are affected by this?

I don’t know much about such surveys but it’s demonstrated that in more than half of cures it’s the psychological comfort of the patient. This comfort of the patients, contribution to this comfort of the patients has nurse and also patient support groups and, as well, the professionals. I think patients, nurses and professionals, we have the same target in fact, we want to get better outcomes for patients and we want to have better services so we can work together and for the first time for such an event. I noticed the difference between America and Europe and also developed countries and Eastern Europe and how much the nurses are involved besides the treatment in rehabilitation of the patient and how deep is the gap of this treatment between developed countries and Central and Eastern European countries.

I can tell from what you’re saying that there is a lot of benefit to be gained from patients taking a grip of things and putting in their opinions and really being concerned. What’s the one thing that you would say to people all over the world that needs to be addressed? What’s the one issue that you think is a focal point?

We need to work together. We need to be one voice, one force for the benefit of the healthcare system but mostly for the benefit of each patient. Because as well as individuals nurses and professionals can also become patients one day, not only healthcare providers.