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YCE in a Policy Dialogue on mental health with EU Health Commissioner

Posted on by Katie

Earlier this month YCE patient advocates Nicola Unterecker and Mariana Coutinho have been invited to
take part in a youth policy dialogue towards a comprehensive approach to mental health with
Commissioner Stella Kyriakides, in Brussels.

Nicki and Mariana shared their personal stories and highlight the struggles faced by young people living
with and beyond cancer, talking about loneliness, isolation, health anxiety, concerns about returning to
work, changes to family dynamics, and more, all the while emphasizing the need for free and specialized
mental health services for all young adults with cancer, before and after treatment.

Speaking at the event, Mariana shared her last year’s personal experience of loneliness and isolation
during cancer treatment, pointing out the absurdity of patients having to pay for mental health services
that should be free.

“I tried to seek the help of a psycho-oncologist in a public hospital, but I would have needed to wait for
several months, so I ended up paying out of pocket for private appointments”, stated Mariana.

She called on the European Commission “to improve access to mental health services, through funds
allocations and more innovative services” that would enable cancer patients and survivors across the EU
to receive appropriate and free mental health care.

From left to right in the picture, Nicola Unterecker and Mariana Coutinho.

“The fear of reoccurrence, depression, PTSD, isolation, body image issues due to changes caused by medications, loss and grief are daily struggles for many cancer fighters and survivors, including me. There are so many burdens on us already. Finding mental health support and being able to afford it should not be an additional one” said Nicola in her powerful intervention.

Nicola Unterecker and EU Health Commissioner Stella Kyriakides

YCE speaks at the Swedish Presidency EU event for World Cancer Day

Posted on by Katie

Ana Amăriuței, patient advocate at Youth Cancer Europe and Biomedical Science PhD student at University of Sheffield, originally from Romania, shared her own story of childhood cancer in a high-level event hosted by European Commission’s Stella Kyriakides and Acko Ankarberg Johansson, Swedish Minister of Health Care.

(Stockholm, Sweden) 1st of February 2023 – In the run up to World Cancer Day 2023 the European Commission and the Swedish Presidency of the Council of the European Union co-organised a high-level conference on cancer. The conference took place under the title “Equity, excellence, and innovation – modern cancer care for all, Europe’s Beating Cancer Plan – eradicating inequalities within cancer care”

Following keynote speeches from Acko Ankarberg Johansson, Swedish Minister of Health Care, EU Commissioner Stella Kyriakides, Dr. Hans Kluge, WHO Regional Director Europe, Dr. Douglas R Lowy, Principal Deputy Director, National Cancer Institute and Spanish Minister of Health, Carolina Darias San Sebastián, Ana Amăriuței delivered a powerful and emotional speech, addressing topics such as Equity, Diversity, and Inclusion and spoke about EUCAYASNET, the first-time-ever EU funded project, coordinated and managed by young people with lived experience of cancer.

Ana called on the Swedish Presidency of the Council of the European Union and the European Commission “to provide a sense of unity and security by ensuring appropriate access to medical care to every single cancer patient in Europe regardless of their gender, race, socioeconomic status, sexual orientation, place of birth and residency, religious or spiritual beliefs” as all stakeholders work towards eradicating inequalities in cancer care.

Speaking at the event, Ana said: “We owe these changes to our loved ones and the cancer patients who are no longer with us and for whom we were too late to make a transformation, but most of all, to all those 2.7 million Europeans who are diagnosed each year with cancer”.

In addition to presenting the latest deliverables under the EU Cancer Plan, participants at the conference discussed three main topics: prevention, early detection, and the conditions for data-driven cancer care.

From left to right in the picture: Stella Kyriakides EU Health Commissioner, Ana Amăriuței, Biomedical research PhD student and YCE patient advocate, Mia Rajalin, Vision Zero Cancer and Lung Cancer Association, Acko Ankarberg Johansson, Swedish Minister for Health Care and Carolina Darias San Sebastián, Spanish Minister of Health.

Shaping medical care!

Posted on by Shajjad Rizvi

We spoke to Martynas and Aurimas from Lithuania’s Junior Doctors’ Association about the need for young cancer patients and survivors to be part of the discussion that shapes medical care for current and future generations. Watch their interview here

Interviews at Youth Cancer Europe Open Space Summit December 2014 Bucharest, Romania

Posted on by Hilda Hajdu

“We’ve seen through the enthusiastic faces in the room, through the outcomes that we managed to achieve in 8 hours with no structure but with everyone bringing up similar topics, sharing the similar visions that there are so many things that we can do jointly.”

Sarunas Narbutas – Lithuania

  • Advisor to the President of the Republic of Lithuania
  • Lecturer on EU and International Law at Vilnius University
  • PhD Candidate (Networked Governance)
  • President of the Lithuanian Cancer Patient Society
  • Cancer survivor

“I believe meetings like this are important because it helps us get together with survivors from other countries and we can find out what issues other people face and what would be the solution on a European level.”

Floin Barnea – Romania

  • Business owner and lead designer of Digital Etiquette
  • Student at the Faculty of Philosophy and Political Sciences, Iasi
  • Cancer survivor

“I think it’s very helpful to bring people together from across Europe to try and discuss the issues they are facing with cancer despite the differences we face in funding and medical care. And I think this really has helped and we have something we can hopefully build on.”

Mathew J. Cooke – United Kingdom

  • Phd Candidate (Politics), University of Cambridge
  • Member, NHS England’s Teenage and Young People Cancer Clinical Reference Group
  • Member, NCRI Teenage and Young Adult Clinical Studies Group
  • Cancer survivor

“Being in different groups through the meeting, I managed to talk with almost all the participants from the conference and this way we were able to see the problems that are around the whole of Europe Recommended Site. ”

Ana Amariutei – Romania

  • 12th grade student at Emil Racovita National College, Iasi
  • Patient support Volunteer with Little People Romania at the Sf. Maria Children’s
  • Emergency Hospital, Iasi
  • Cancer survivor

“I liked the fact that it was an open space summit and we had freedom to speak, freedom to what meeting we wanted. We could also raise our own issues and it was a very good way to get people together.”

Floin Barnea – Romania

  • Business owner and lead designer of Digital Etiquette
  • Student at the Faculty of Philosophy and Political Sciences, Iasi
  • Cancer survivor

“Probably the most intriguing thing about this meeting was that it was an open summit, I never joined or participated in that king of meetings ever, so that was pretty impressive.”

Tomaz Dezelak – Slovenia

  • History and Theology Student at the University of Ljubljana
  • Author, The Other Me
  • Cancer survivor

“All the ideas were flowing, everybody was talking, everybody was discussing their own problems and their own issues and everybody was giving an opinion so it was a very productive day.”

Emanuel Schipor – Romania

  • Student at the Faculty of Psychology and Educational Sciences, Cluj-Napoca
  • Patient Support Volunteer
  • Assistant to Little People hospital psychologist, Institute of Oncology in Cluj-Napoca
  • Cancer survivor

“I was very impressed by the level of knowledge and the ability to communicate it in a second language to most people. I couldn’t have done that in a foreign language, so I was very much blown away by that. But also the enthusiasm and the engagement everyone had throughout the day, despite the fact we all had very little sleep and too little coffee.”

Mathew J. Cooke – United Kingdom

  • Phd Candidate (Politics), University of Cambridge
  • Member, NHS England’s Teenage and Young People Cancer Clinical Reference Group
  • Member, NCRI Teenage and Young Adult Clinical Studies Group
  • Cancer survivor

“My first reaction was not knowing what exactly was going to happen, I was a little bit afraid of the themes that were going to come up, what everybody is going to talk about, if they were really going to answer to my questions, what I was asking myself about, and I was pretty impressed to see that many people had the same questions as I had. Same themes came up that I was interested in and I was pretty impressed, I really liked it and I think it was really worthwhile coming.”

Francisco Mateos – Spain

  • Cofounder and board member of AAA – Asocoacion Espanola de Adolescentes y
  • Adultos jovenes con cancer
  • Volunteer Coordinator
  • Bachelor in Philosophy and student of Pedagogy
  • Cancer survivor

“I’m excited! For me it was a great experience, I’m grateful for being here, for being invited first of all and for being here amongst all of you, very proud for that.”

George Seremetakis – Greece

  • Double major graduate in Computer Science and Football Coaching
  • Vice-President of Kyttaro, Greek Organization of Adult Cancer Survivors
  • Cancer survivor

“I’m excited! For me it was a great experience, I’m grateful for being here, for being invited first of all and for being here amongst all of you, very proud for that.”

Mathew J. Cooke – United Kingdom

  • Phd Candidate (Politics), University of Cambridge
  • Member, NHS England’s Teenage and Young People Cancer Clinical Reference Group
  • Member, NCRI Teenage and Young Adult Clinical Studies Group
  • Cancer survivor

What the experts say about Youth Cancer Europe, interview with professionals 

Posted on by Hilda Hajdu

“I am very confident that young people can contribute on a professional level, speak with the same voice that health politicians want to hear and speak with the same competence and dignity [of] that [of] the health professionals, but in doing so there remains their own personal touch with the disease. One example [is] me living with cancer for eight years now and taking pills every day, I see that through young patients’ voice you can make a big change. It should not be localized or nationalized, it is the time for it to go global. Let’s start from something and Youth Cancer Europe is a very a timely initiative that I believe will tackle a lot of imminent needs and I believe it will attract a lot of support.”

Sarunas Narbutas – Lithuania

  • Advisor to the President of the Republic of Lithuania,
  • Lecturer on EU and International Law at Vilnius University,
  • PhD Candidate (Networked Governance),
  • President of the Lithuanian Cancer Patient Society,
  • Cancer survivor

“[Institutions] like medical and pharma are in need of an organization that connect all of the other NGOs all around Europe, not only Western Europe but also Eastern Europe, and not only NGOs but also connect patients with clinical trials, with other doctors from other countries and connect doctors between them. And I think that what I see as being done is exactly what [is needed] on the European level right now.”

Emanuel Schipor – Romania

  • Student at the Faculty of Psychology and Educational Sciences, Cluj-Napoca
  • Patient Support Volunteer
  • Assistant to Little People hospital psychologist, Institute of Oncology in Cluj-Napoca
  • Cancer survivor

“Not only do we need to empower survivors to look after themselves better, but we also need their help. As a medical research community we need the survivors to tell us what are the important questions that we need to be doing research on in the future.”

Kathy Pritchard-Jones, MBCh, Ph.d.MD – United Kingdom

  • Professor of Paediatric Oncology University College London
  • Institute of Child Health
  • Steering Committee member of ENCCA (European Network Cancer research in Children and Adolescents)

“I think survivors also should be able to express their voice and be part of the decision making process.”

Florin Barnea – Romania

  • Business owner and lead designer of Digital Etiquette
  • Student at the Faculty of Philosophy and Political Sciences, Iasi
  • Cancer survivor

“I think that the idea is very much welcome and I hope that we will be able to collaborate together and go for it strategically”

Dr. Riccardo Haupt, MD – Italy

  • Head of Epidemiology and Biostatistics Hematology and Olcology Institute Giannina Gaslini Genova, Italy
  • Founding member of PanCare

“I think that anything that gets young people with this experience to connect and share experiences and learn from each other is a good thing.”

Lars Hjorth, M.D lose belly fat fast. Ph.D. – Denmark

  • Consultant Paediatric Oncology and Hematology Department of Paediatrics, Skane University Hospital
  • Chairperson PanCare
  • Coordinator PanCareSurfUp

“It’s extremely important that all adults who went through cancer when they were young, get together, share, explain, help the new ones and help us.”

Gilles Vassal M.D. Ph.D. – France

  • Professor of Oncology in University Paris-Sud
  • Head of Clinical Research at Gustave Roussy Institute
  • President of SIOPE (European Society of Pediatric Oncolgy)
  • Founder of ENCCA (European Network Cancer research in Children and Adolescents) and ITTC

“I definitely think that a united voice is much stronger and at the very least it shows that young people are not facing these issues alone”

Mathew J. Cooke – United Kingdom

  • Phd Candidate (Politics), University of Cambridge
  • Member, NHS England’s Teenage and Young People Cancer Clinical Reference Group
  • Member, NCRI Teenage and Young Adult Clinical Studies Group
  • Cancer survivor

“Here it does not matter who you are, it matters what you’ve been through, and it matters that you are willing to share and that you stand on equal grounds with the rest of the participants. So yes, I definitely believe that Youth Cancer Europe is the perfect forum for young people with cancer to develop their full potential.”

Karina Kopriva – Romania

  • Political Science Graduate, BBU, Cluj-Napoca
  • Consultant on external affairs, Little People Romania and Republic of Moldova

Cancer survivors looking for their place in society [Article]

Posted on by Hilda Hajdu

The young cancer survivors often suffer from depression and have a hard time finding their place in society. The first study made in Romania on the needs of the people in this category reflects this situation. Over 200 young people participated in Cluj-Napoca at the first national seminar on long-term effects of cancer.

The attention and fertility issues or the fear of relapse were some of the topics discussed at the meeting of cancer survivors and medical specialists.

Emanuel Schip, survivor: “It is good to know what’s going to happen next, so you can prepare yourself.”

Theodore Urziceanu, survivor: “The experiences of those who went through something like this could prove to be very useful.”

The young people who attended also helped by participating in a study whereby the specialists could better understand the profile and needs of someone who survived cancer.

Katie Rizvi, founder of the Little People Romania: “It is a study that has never been done before. The most important thing the young people are concerned about is their fertility and the possibility of having children after cancer treatment. ”

The results also show that 20 percent of those who defeated the disease still suffer from chronic pain and experience difficulties in learning, while nearly 60 percent experience emotional difficulties and some of them even depression. 19 percent of those aged over 18 do not work and do not study and 16 percent face discrimination in the workplace.

Rodica Cosnarovici, Head of Pediatric Oncology Department in the Cluj Oncology Institute: “I think the most common problems that they face are psychological and reintegration problems“.

The doctors suggested that the Ministry of Health could also come to their aid, by developing a national pediatric oncology program at a national level.

Gheorghe Popa, pediatric oncologist: “Financing oncology programs for adults does not fully meet the children’s needs, as child cancer patients have special needs.”

 

Originally published on 12th Dec 2015 via http://www.digi24.ro/Stiri/Digi24/Lejer/Sanatate/Supravietuitorii+cancerului+isi+cauta+locul+in+societate