segunda-feira, 17 de novembro de 2014

A Flor do Maracujá, por Rolando Boldrin

"A pois intonce eu lhes conto,
A história que eu vim contar,
Pruque razão nasce roxa, a flor do maracujá.
Maracujá já foi branco,
Eu posso inté lhe jurar,
Mais branco do que a Paiaba,
Mais branco do que o luar..."


sexta-feira, 17 de outubro de 2014

The Prague Charter “Palliative Care: a human right": incentivando os governos a aliviar o sofrimento e reconhecer os cuidados paliativos como um direito humano

A Carta de Praga: aliviar o sofrimento

terça-feira, 14 de outubro de 2014

Feeling helpless in the face of the Ebola crisis?

ICPCN encourages members to participate in the palliative care community response to the Ebola crisis.

It is difficult to watch the news these days. Along with you, we at ICPCN watch the pain and suffering of those with Ebola, particularly the children who are sick or who have been orphaned and abandoned, with feelings of despair. 

In a recent ehospice article, Palliative care and the response to Ebola, editor Kate Jackson asks how the ethos and practice of the palliative care community can help in the response to the disease. She writes "although there is no known vaccine or cure for Ebola, the steps recommended by WHO and other international health organizations to reduce mortality are through supportive care and community education. Both of these areas are core competencies of those trained in palliative care."   Saiba mais...

terça-feira, 23 de setembro de 2014

Little Stars "Value Every Life"

To find out more please visit

The most surprising thing. Palliative care is not just about endings

“The most surprising thing I have learnt about paediatric palliative care is that it is not just about endings. Palliative care is really a steady arm to lean on: it supports you to make your time together the best it can be, and it helps families take some control back over their lives."

These words from Fiona Stewart, Joseph's mom, illustrate the importance of educating the public about the value of children's palliative care. So many people still believe that palliative care is just about end of life care. The Little Stars films WILL CHANGE THEIR MINDS. Each short film in the series focuses on one child's story and celebrates the life affirming and joyful moments that palliative care can provide for them and their families. You can watch Joseph's Story here. 

ICPCN's shared campaign with Moonshine Movies to raise AUD$65 000 for the making of a feature length film on children's palliative care has one week to go. If you have not already done so, we urge you to consider a donation of ANY AMOUNT to ensure that the full length feature film will be complete to premiere at the UICC Congress in Melbourne this December. The World Cancer Congress is the leading gathering place for leaders, policy-makers, activists and media who can begin the process of making children's palliative care a reality for all those who need it.

Please help us with this final push for what we believe to be a very worthwhile cause by donating and by sharing this request amongst all your contacts.

"It's only society's attitude that limits us." Fiona Stewart
Donate to the Little Stars campaign

quarta-feira, 27 de agosto de 2014

II Encontro Brasileiro de Cuidados Paliativos - 11 a 13 de setembro de 2014 - “Saúde Pública e Cidadania”.

Acesse:II Encontro Brasileiro de Cuidados Paliativos

Estão abertas as inscrições do II Encontro Brasileiro de Serviços de Cuidados Paliativos, que acontecerá nos dias 11 a 13 de setembro de 2014. O evento terá como tema geral “Saúde Pública e Cidadania”. 

Este evento faz parte do já tradicional “Ciclo de Cinema e Reflexão: Aprender a viver, aprender a morrer”, em sua sétima edição.

Os objetivos do II Encontro são:

•  Divulgar os serviços de Cuidados Paliativos existentes no Brasil

•  Refletir sobre a situação dos Cuidados Paliativos no país

•  Fomentar a criação de uma rede de colaboração entre diferentes serviços

Como parte especial da programação acontecerá o I Encontro das Ligas Acadêmicas de Cuidados Paliativos. 

Parcerias, estágios, visitas, pesquisas são apenas algumas das possibilidades que este II Encontro trará para os participantes. Sua participação é de imensa importância, e será uma honra tê-lo conosco nestes dias.

sexta-feira, 22 de agosto de 2014

World Media Roundup – hospice and palliative care stories published daily in world media

In the world media roundup we bring you the top hospice and palliative care stories published daily in world media. This service allows you to stay up to date with news, stories, and opinion pieces as well as personal experiences of health care professionals, journalists and bloggers.

sexta-feira, 8 de agosto de 2014

Medicina paliativa auxilia em casos de doenças sem cura - Jornal da Band

Apesar de toda evolução, a Medicina ainda não tem respostas definitivas para várias doenças. Quando não existe cura, os médicos partem para o que chamam de cuidados paliativos. Essa especialidade ganha espaço nos hospitais para confortar o paciente e a família no momento mais difícil, o da despedida. Confira a reportagem:

sábado, 12 de julho de 2014

The latest news from ICPCN - International Children's Palliative Care Network - July 2014

All contributions welcomed! 

ICPCN is on the lookout for a universal symbol for children's palliative care and for stories to use for advocacy purposes. 

Over the past month the ICPCN has sent out two requests to our members. The first is a request for ideas for a universal symbol for children's palliative care and the second for stories about how palliative care has made a difference in the life of a child or family. Please take the time to read about these two projects by clicking on the links provided below and get back to us soon with your ideas and your stories. 
It's time to get creative!
The ICPCN is looking for a universal symbol for children's palliative care. Our aim is to find one symbol that can become synonymous with children's palliative care wherever and whenever it is used. If you have a good idea or a creative bent, you have until the end of July 2014 to submit your idea to us. Find out more
Do you have a story for us?
We are looking for true stories in writing or video clips that describe what it is like to have a life limiting illness or to parent a child with a life limiting illness and the difference that palliative care can make in that situation. Wherever you are in the world, we would like to hear your story.Find out more.

What's new on ehospice?

  • Building design for children's hospices - what works? Click here
  • Hungary celebrates Children's Hospice Week  Click here
  • Getting end of life care right for the child and the family Click here

Do you have a palliative care story to tell?

These pictures illustrate stories in Touching Rainbows. Isabelle's story tells of how Brian House helped her to cope with her sister, Grace's, illness and death. Dr Jan du Plessis tells the story of when his patient, Rethabile, wanted to see a real snake before she died. What is your story?    
                           International Children's Palliative Care Network

Calling all children, parents and carers. Do you have a palliative care story to tell?

If so, we want to hear from you.

In 2011, ICPCN published Touching Rainbows, a book that gave a voice to children with life limiting conditions from around the world by allowing them, and those who cared for them, to tell their stories. These powerful stories gave readers an insight into the reality of having a child with a life limiting illness, the pain of losing a child and the difference children's palliative care services made to both the children and their carers. The book continues to be an influential advocacy tool that has been used around the world to highlight the need for the integration of children's palliative care into all health care services.

In 2015, the ICPCN will be celebrating 10 years of being the only international charity fighting globally for the rights of life-limited and life-threatened children. As part of our planned international campaign we would like to gather together as many stories from across the globe as possible which tell the story of children needing and receiving palliative care and how this has impacted positively on their quality of life.

These stories can be sent to us either as short video clips or as written stories with photographs. Those we choose will be uploaded to a website and various social media platforms in order to gain the greatest traction with the general public.

The ICPCN assures all those who participate in this 10 year anniversary project that any photographs and videos sent to us will be used solely for advocacy purposes in order to raise awareness of the need for and the value of palliative care for children.

Story categories
As we wish to show the difference that palliative care makes on the quality of life of the child and the family, the stories we are looking for should fall into one of the following two categories:
  1. True stories about children who are or were able to access palliative care services and how this impacted on quality of life for the child and the family.
  2. True stories about children who are not or were not able to access palliative care services and how this impacted on quality of life for the child and the family.
Who should tell these stories?
Stories can be told by the child, a parent, sibling or relative, or a person who cares for or who is/was involved in the care of the child as long as they have the permission of the child and/or the child's parents or legal guardians to do so.

Language and translation
We recognise the importance of having stories in as many languages as possible in order to reach as many people across the globe as we can, so are happy for the stories to be told in any language. We will provide English translations where applicable.  

Permission to publish
Permission to tell the story should be provided by the child and/or the child's family. This will be required before any story will be published or posted to the site. Permission forms will be sent to you via email once your story has been received and accepted for publication.  

Photographs and videos
Photographs should be supplied with all written stories as these dramatically enhance the impact of the stories being told. Photographs should be attached separately in JPEG format. Video clips need not be polished or expertly edited. Raw footage from a cell phone camera is perfectly acceptable, as long as it provides interesting footage which honestly portrays the positive impact palliative care has on a child's life. Videos should be kept to between 1-5 minutes in length. 

Submitting your stories
Please submit your queries or your videos or written stories and photographs for consideration to Sue Boucher 
Our mailing address is:
Cluster Box 3050
South Africa

sexta-feira, 23 de maio de 2014

Historic day for palliative care as WHA passes resolution GENEVA 23 May 2014

Groundbreaking resolution passed today at the 67th World Health Assembly 

ICPCN Press Release
For immediate release

Passing of Resolution on Palliative Care at WHA
What does this mean for children’s palliative care?

GENEVA 23 May 2014

The ICPCN is thrilled to announce that a landmark resolution has been passed unanimously at the 67th session of the World Health Assembly (#WHA67) in Geneva, Switzerland that will encourage all member states to take a greater interest in palliative care, including palliative care for children.

The key functions of the World Health Assembly (WHA) held each year in Geneva, Switzerland, is to determine policies of the World Health Organization (WHO), to appoint the Director-General, to supervise financial policies and review and approve the proposed programme budget.   

This year, for the first time ever, the WHA has passed a landmark resolution on palliative care calling on all member states to:
  • Develop, strengthen and implement palliative care policies
  • Support palliative care initiatives including education and training, quality improvement and availability of medicines essential for the provision of palliative care
  • Provide support to caregivers
  • Include palliative care as a part of integrated training for all healthcare workers who routinely work with people with serious illness
  • Ensure access to essential medications
  • Foster partnerships between government and civil society to increase access to palliative care
Leaders within the global palliative care community are optimistic that this resolution will initiate the development of structured standards and guidelines for palliative care, including palliative care for children, as set by the World Health Organization.

The ICPCN feels that this resolution will also strengthen both local and national advocacy efforts for the development of paediatric services. It not only signals that palliative care for all ages should be taken seriously but also calls upon countries to include palliative care in their healthcare budgets.

While the WHO cannot enforce decisions made at the WHA the passing of this resolution means that all member states will be obliged to provide a statistical reports on the progress of palliative care within their borders.

From Geneva, where she is attending the WHA and has been a vocal advocate for the inclusion of children in the conversations on palliative care, ICPCN's CEO Joan Marston had this to say: “This is a historic moment for palliative care, with recognition by the World Health Assembly that palliative care is an essential part of health systems in every country. But it is only the beginning of our work. We now have to ensure the resolution is put into practice in order to reach the millions of children living with life-limiting conditions around the world. For these children and their families, we must continue to work together and use all our commitment, compassion and energy to relieve their suffering and to make life worth living."
Copyright © 2014 ICPCN, All rights reserved.
Our mailing address is:
Cluster Box 3050
South Africa
Contact the editor on:

sábado, 17 de maio de 2014

E tudo continua mudando...o tempo todo...

Tudo muda muito rápido, e quem aceita essa realidade e consegue exercitar sua capacidade de adaptação, já sai com vantagens
Há poucas coisas mais edificantes para o caráter do que começar de novo, relevando as mágoas, engolindo a lágrimas e lançando um olhar otimista para o futuro. Começar de novo é uma fantástica forma de libertação.Provavelmente a melhor de todas.  Eugênio Mussak – revista Vida simples
"Toda mágoa que passei
É motivo prá comemorar
Pois se não sofresse assim 
Não tinha razões prá cantar..." Falamansa

terça-feira, 13 de maio de 2014

Wonderful nurses...always! And the latest ICPCN news bulletin


This news bulletin is brought to you by the International Children's Palliative Care Network. Keeping you up to date and informed on issues related to children's palliative care from around the globe.

Acknowledging the role of nurses in children's palliative care

Monday 12 May is International Nurses Day. Nurses form the backbone of children's palliative care services in many countries and are always there to share the ups and downs of the journey with the children they care for and their families. An American nurse practitioner, Christine Bell, sums up the role of a nurse beautifully when she says: Our job as nurses is to cushion the sorrow and celebrate the joy every day, while we are 'just doing our jobs'.

ICPCN would like to take this opportunity to honour and acknowledge all those wonderful nurses who work in children's palliative care and thank them for their compassion, expertise and love. 

ehospice in line for top charity award

ICPCN is proud to be a part of ehospice which has been shortlisted for the prestigious Charity Awards, recognising and rewarding those organisations doing exceptional work in all areas of charitable activity. The awards are an annual programme held in the UK which celebrate and highlight best practice across the voluntary sector.

ehospice has been shortlisted in the ‘Healthcare and Medical Research’ category, and will be assessed on 10 Hallmarks of Excellence.

Watch a short promotional video on ehospice

The winners of the awards will be announced at a ceremony in London on 12 June.
Read more 

An intolerable burden of care

A recent article in the Sunday Tribune, a South African weekly newspaper, takes a deeper look at the unbearable burden of care that led a South African mother living in London to kill her three children suffering with SMA and try to kill herself. The story highlights most poignantly the need for more and better palliative care services around the world.
Read more
Copyright © 2014 ICPCN, All rights reserved.
Our mailing address is:
Cluster Box 3050
South Africa
Contact the editor on: