quarta-feira, 30 de setembro de 2015

#HATSON4CPC - VESTIR CHAPÉUS PARA OS CUIDADOS PALIATIVOS PEDIÁTRICOS

International Children's Palliative Care      

http://www.icpcn.org/

A Rede Internacional para os Cuidados Paliativos Pediátricos  declarou a primeira
sexta-feira de Outubro de cada ano como um dia para arrecadar dinheiro
e para chamar á atenção internacional sobre o trabalho do Hospice e
Serviços de Cuidados Paliativos Pediátricos em todo o mundo.   
Como forma de apoio aos cuidados paliativos é solicitado a você doar
uma pequena quantia e também usar um chapéu no trabalho
ou na escola naquele dia.
Temos chamado esta campanha de
sensibilização e de coleta “Vestir Chapéus para os Cuidados
Paliativos” e nas redes sociais: #HatsonforCPC

#Hatson4CPC takes place on Friday 2 October and aims to raise funds and awareness of children's palliative care
O día em 2015 é Sexta-Feira 2 de Outubro.
Queremos que muitas pessoas possam participar nesta                             
campanha, por isso precisamos de sua ajuda para difundir
esta iniciativa para os seus amigos e colegas,
de usar um chapéu no trabalho naquele dia e doar uma
pequena (ou grande) soma de dinheiro para os serviços
de cuidados paliativos ou ICPCN, Rede Internacional de
Cuidados Paliativos Pediátricos.

O QUE VAI A ACONTECER NESSE DIA?
Esse dia destina-se a aumentar a conscientização sobre os
direitos das crianças gravemente doentes que recebem cuidados
paliativos. Sabemos que mais de 21 milhões de crianças em todo
o mundo sofrem de doenças limitantes da vida ou condições que
podem ou poderiam encurtar drasticamente suas vidas, e que, em
muitas situações, podem diminuir severamente a qualidade de vida que essas crianças podem desfrutar. Nem mesmo 1%dessas crianças pode no presente, acessar esses serviços.

ENTÃO, O QUE EXATAMENTE SÃO OS CUIDADOS PALIATIVOS PEDIÁTRICOS?
Os Cuidados Paliativos Pediátricos (CPP) consistem de um cuidado holístico, integral,  que atende todas as necessidades físicas, emocionais, sociais e espirituais de uma criança com uma doença limitante ou ameaçante da vida, e sua família. O seu objetivo é proporcionar alívio da dor e controle especializado dos sintomas, e todo o apoio psicossocial necessário para permitir que a criança afetada possa desfrutar da melhor qualidade de vida possível nas circunstâncias. Quando necessário, deve apoiar a criança e a família no final da vida e continuar com o cuidado dos membros da família
durante o luto enquanto for necessário. Este atendimento é prestado por uma equipe de pessoas usando diferentes, e muitas vezes vários, chapéus!

WOW! ISTO É MARAVILHOSO! COMO POSSO SER PARTE DO #HATSON4CPC?
Realmente é muito fácil de mostrar o seu apoio e também arrecadar fundos para os cuidados paliativos para crianças ou para serviços de cuidados paliativos pediátricos em sua comunidade. Aqui estão algumas grandes idéias:
1. Faça o download e imprima os documentos no pacote de promoção. Use este folheto para promover em seu trabalho e mostrar o seu chefe e colegas e concordar em celebrar o dia # hatson4CPC na sexta-feira 2 de outubro, pedindo a cada um, uma pequena (ou grande) doação.
2. Traga este folheto para a escola do seu filho (ou a sua escola, se você ainda é uma criança) e solicitar às autoridades se eles podem celebrar o Dia ‘Hatson4CPC’ na sexta-feira 2 de outubro. Os alunos usarão um chapéu na escola e podem doar uma pequena quantia em troca de um sticker.
3. Se você é um professor ou líder de juventude, tente fazer uma atividade ‘hat-making ‘, onde as crianças possam projetar e vestir seus próprios chapéus naquele dia. Você pode adicionar um sticker na parte dianteira de seu chapéu.
4. Organiza um almoço, chá, ou até mesmo uma Festa do Chapéu Maluco (o que quer que sua imaginação lhe diga) e convide seus amigos. Obviamente, eles devem usar chapéus e ser convidados a fazer uma doação.
5. Temos certeza de que você, inclusive terá idéias melhores, e nós adoraríamos ouvir sobre isso tudo. Queremos ver fotos, portanto, tire muitas fotos e mande para o nosso Facebook www.facebook.com/ICPCN

RECOLHIDAS AS  DOAÇÕES - O QUE É QUE EU FAÇO AGORA?
Gostaríamos que qualquer serviço de cuidados paliativos em sua comunidade seja beneficiado por estas doações. Se você não tiver certeza de qual é o serviço mais próximo, dê uma olhadinha no nosso Mapa de Serviços em nosso site ICPCN ou pode nos escrever algumas linhas.
Você pode doar diretamente para ICPCN através do botão PayPal em nosso site e nos ajudar a ajudar 21 milhões de crianças e suas famílias para receber o tipo de cuidado que merecem.

Acesse aqui hatson4cpc/

segunda-feira, 17 de agosto de 2015

Amigos são fragmentos - Paulo Roberto Gaefke

  Diz o poeta: "... amigos são testemunhas vivas de nossas vidas". São fragmentos de nossa história, e em cada lembrança de um rosto amigo podemos recordar um momento de nosso passado, e amigos são muito mais do que momentos, são alianças que fazemos pela eternidade, mesmo que a amizade seja passageira, que dure apenas um contrato de trabalho, um período escolar ou as férias de verão, ainda assim, fica uma marca indelével na alma... continua..


sexta-feira, 17 de julho de 2015

World Hospice & Palliative Care Day focus on children - Hidden lives, hidden patients - particularly children. ICPCN - International Children's Palliative Care Network - e-bulettin July 2015 -





This year's theme for World Hospice and Palliative Care Day is 'Hidden Lives, Hidden Patients' and the messaging around this has a strong focus on the needs of life-limited children to receive palliative care. Children with palliative care needs are some of the most ‘invisible’ patients of the health-care world. ICPCN is working hard to change that and we are delighted that to align with the ICPCN's NOW Campaign the Worldwide Hospice Palliative Care Alliance has placed a particular emphasis on children in this year’s theme and in the accompanying report. Read more

ICPCN - International Children's Palliative Care Network - e-bulettin July 2015

Cardiff Conference
The 7th International Cardiff Conference on Paediatric Palliative Care ended last Friday, 10 July 2015 and was declared a great success by those in attendance. The conference theme was "Medicine and Compassion: Tool for the Task...Or Dangerous Distraction? Following the first day speakers was never going to be a easy, but the invited plenary speakers on Day 2 were more than equal to the task. In his summation, Dr Richard Hain said "If you had to use one phrase that summed up what we have been talking about, it is this:Compassion is...intelligent kindness." 
Read more
24 hour helpline 
OSKAR, the world's first 24-hour helpline for families with life limited children was launched recently in Berlin, Germany with the number 0800 8888 4711. An initiative of the Bundesverband Kinderhospiz e.V. this service is aimed at the approximately 40 000 families in Germany caring for children with palliative care needs. OSKAR will also provide support to bereaved families, as well as professionals and volunteers working in the field of children's hospice and palliative care.  
Read more
Dutch e-learning 
Providing online electronic learning (e-learning) courses for health professionals and volunteers working in the field of children’s palliative care has long been a vision of Stichting PAL, the national children's palliative care networking foundation in The Netherlands. On Friday 26 June the first group of students in The Netherlands to complete a Dutch e-learning course form ICPCN were presented with certificates of completion. The students are all volunteers from the ZaZaZorg Foundation. 
Read more
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ICPCN - International Children's Palliative Care Network - e-bulettin July 2015 - Events

Events

The ICPCN website has a comprehensive  Calendar of Events listing events related to children's palliative care taking place around the world. Contact us to have your event listed on this calendar.
  1. 27 - 28 August:The 6th Biannual Palliative Care Association of Uganda Conference Kampala, Uganda
  2. 18 - 20 September: European Academy of Paediatrics Congress and Master Course 2015 Oslo, Norway
  3. 27 - 30 September: Hospice Palliative Care Association of South Africa Conference 2015 Durban, South Africa
  4. 1 - 3 October:  1st Portuguese Meeting of Paediatric Palliative Care Lisbon, Portugal
  5. 1- 4 October: International forum on Pediatric Pain, Nova Scotia, Canada
  6. 28 October: Transitions in Pediatric Palliative Care, Ottawa, Canada
  7. 25 - 27 November: The 1st Nordic Conference in Children's Palliative Care, Oslo, Norway 

ICPCN - International Children's Palliative Care Network - e-bulettin July 2015 - Host a screening of 'Little Stars' for a free DVD

Host a screening of 'Little Stars' for a free DVD

The world needs to know the value of children's palliative care and the 'Little Stars' short films and 52 minute documentary, presented by David Suchet, CBE, provides one of the most comprehensive and relevant vehicles available today creating awareness. The producers of Little Stars have committed to mail a free copy of the 'Little Stars' film to anyone who commits to host a screening of the film in their part of the world.Click here to find out more about this amazing offer, while stocks last. The producers have requested that those fortunate enough to have attend the only 2 screenings of the film to date to please assist them and rate it here

ICPCN - International Children's Palliative Care Network - e-bulettin July 2015 - Treating Pain in Children

The latest film in the Little Stars series addresses the issue of chronic pain in children. In this latest Little Stars film, we are introduced to Dr Stefan Friedrichsdorf, a children’s pain expert in Minneapolis, USA, who says “taking pain away is not really rocket science, it is not that difficult, and we can teach any junior doctor in one or two hours to manage 90% of children with acute pain. However most children’s hospitals have not yet implemented even the standard methods of taking acute pain away.” Click here to learn more and watch this latest superb Little Stars short film.

ICPCN - International Children's Palliative Care Network - e-bulettin July 2015 - Wear a hat on 2 October for #Hatson4CPC

Wear a hat on 2 October for #Hatson4CPC

ICPCN has declared the first Friday in October an international day of awareness for children's hospice and palliative care services, highlighting the global right of 21 million children with life-limiting conditions to receive palliative care. We call on our members and those working in the field to use this day to raise funds and awareness of the need for children's palliative care.

To show support people will be asked to make a small donation and wear a hat to work, school, college, or just around the house. They will also be encouraged to post a picture of themselves with a hat on social media sites. The campaign will be known as ‘Hatson4CPC’ with the hashtag #Hatson4CPC. The date for this hat wearing extravaganza in 2015 is Friday 2 October.

There are many ways to engage the public, and we particularly hope that schools across the globe will become involved, learn about the needs and rights of children with life-threatening and life-limiting illnesses and raise funds for local services. Click the button below to learn more and download resources that can be used. We are also looking for volunteers to translate materials into as many languages as possible.  
#Hatson4CPC

terça-feira, 2 de junho de 2015

Cuidados Paliativos: Épreciso lembrar que doenças terminais e as doenças crônicas atravessam todas as faixas etárias, do recém-nascido ao idoso frágil.


Quando se trata de  pacientes com doenças crônicas, o acompanhamento durante todo o curso da doença, o amparo psicológico e a humanização do tratamento fazem parte das atividades do profissional de saúde que se dedica à Medicina Paliativa.    


Existe a necessidade de atenção especial paa estas situações.
Nesse cenário, surgem os cuidados paliativos (CP), uma modalidade de assistência e intervenção cujo alvo é a pessoa doente, com ênfase no alívio do sofrimento físico e no atendimento das demandas psicossociais e espirituais


Aliviar a dor e outros sintomas que geram sofrimento, além de afirmar a vida, são alguns dos princípios fundamentais dos cuidados paliativos, segundo a Organização Mundial da Saúde (OMS). Até mesmo empresas estão se especializando nesta área, fabricando produtos que facilitam o dia a dia das pessoas com algum tipo de necessidade especial. São elevadores, cadeiras de roda especiais, talheres (órteses), automóveis, camas, entre outros itens.

Os CP constituem-se num conjunto de medidas eficazes no combate à dor e outros sintomas físicos, bem como os emocionais, sociais, os ligados à espiritualidade e outros, e que devem ser aplicados por uma equipe treinada. 
Idealmente, a assistência inclui médicos, enfermeiros, psicólogos, assistentes sociais, nutricionistas, fisioterapeutas, fonoaudiólogos, terapeutas ocupacionais, cuidadores, musicoterapeutas e também profissionais de outras áreas, como direito, filosofia e teologia. 
Os cuidados paliativos constituem uma resposta indispensável aos problemas da cronicidade e do final da vida.
Em nome da ética, da dignidade e do bem-estar de cada ser humano, é preciso torná-los cada vez mais uma realidade. 

International Children's Palliative Care Network - e-bulletin - March 2015

Introducing Lucy, ICPCN's first Youth Ambassador

Lucy Watts has recently been appointed as ICPCN's very first Youth Ambassador

 
"My biggest fear in life is that I won't have made a difference, that my life won't mean anything. I hope I am making a difference with what I am doing."  Lucy Watts.

ICPCN is delighted to announce the appointment of Lucy Watts as our very first Youth Ambassador. Lucy, a 21 year old from the UK who, despite being disabled and living with a chronic, life-limiting illness, has already made an enormous impact on the world through her writing and speaking activities.  Diagnosed with Ehlers-Danlos Syndrome (EDS) and  intestinal failure, Lucy’s condition confines her to bed most of the time. Lucy has a long list of achievements behind her name and is a passionate advocate for a number of charities. We are thrilled that she will be speaking out for children's palliative care through ICPCN.
Click here to read Lucy's story and follow her via her blog and social media sites. 

Run, Richard, run... 

TV News Correspondent, Richard Newton, has committed to run the London Marathon to raise funds for ICPCN 

 

Richard Newton, a specialist correspondent for the SABC TV News in South Africa will be running the London Marathon in May this year in support of ICPCN. Richard’s connection with children’s palliative care began in 2002 when he covered a story about Sunflower House Children’s Hospice in Bloemfontein and met the founder and then director, Joan Marston -  now ICPCN's Chief Executive. Explaining why he is prepared to run a marathon for us, Richard said: “My family and I are proud to support the ICPCN and the amazing work it does. When asked if I would be prepared to run the London Marathon to raise funds I was more than willing. Compared to the everyday challenges, ups and downs and dealing with pain that the kids, the dedicated staff and families go through, running a marathon seemed like the least I could do!”  Read more.

Please consider contributing to ICPCN by sponsoring Richard via the Virgin Giving website. Every small amount adds up and allows us to continue supporting people around the world through our training, research, advocacy and networking.

International Children's Palliative Care Network - e-bulletin - April 2015

Seeking sponsors for our London Marathon runner 

For the very first time, we have someone running the London Marathon for us and we are still some way off our £5,000 target.

"Compared to the everyday challenges, ups and downs and dealing with pain that the kids and the dedicated staff and families go through, running a marathon seemed like the least I could do!"  Richard Newton.

Would you be prepared to run a marathon to show your support for ICPCN? This year for the first time ever, ICPCN was awarded a single charity entry in the world famous London Marathon and Richard Newton, SABC TV Specialist Correspondent, agreed to run the marathon for us. He is all set to line up at the start with over 40,000 other runners on Sunday 26 April.

The London Marathon
The Virgin Money London Marathon is one of the great British sporting events, combining elite athletics, mass participation and record-breaking fundraising in one race. The course is a gruelling 26 miles 385 yards long, passing through the streets of London from Blackheath to the famous finish line at The Mall. If you happen to be a spectator, look out for the blue T-shirt with our ICPCN Now campaign logo on the front and a sunflower on the sleeve and give Richard your support.

Training hard
Richard has been training hard over the past few months and earlier this month reported that he had run 223 km, cycled 270km and swum 9.6 kms in preparation for the event. And despite the many hours this has taken him away from his family he says that he is proud to be supporting ICPCN in this way.

We are very grateful to the 25 sponsors who have already shown their support for Richard and the ICPCN but we are still over £3,500 off reaching our target, with only 8 days to go.

Donate just £5
If every one of our ICPCN members would donate as little as £5 through the VIrgin Money Giving Page we would more than reach the target and would make all Richard's efforts even more worthwhile.

Will you consider supporting Richard and ICPCN by making a donation today?
Donate now
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Copyright © 2015 International Children's Palliative Care Network (ICPCN), All rights reserved.
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Our mailing address is:
International Children's Palliative Care Network (ICPCN)
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International Children's Palliative Care Network - e-bulletin - June 2015


Successful side event held at 68th WHA in Geneva

At the recent World Health Assembly ICPCN was instrumental in staging a very successful side event on children's palliative care attended by two Assistant Director Generals and Dr Margaret Chan, Director General of the WHO.


Children with palliative care needs are some of the most ‘invisible’ patients of the healthcare world. The International Children’s Palliative Care Network (ICPCN) is working hard to change that and took advocacy for the rights of all children with palliative care needs to the highest level when they successfully staged a side event at the 68th World Health Assembly recently held in Geneva, Switzerland on Monday 25 May.

Organised through the Permanent Missions of Panama, Chile, Italy and Spain, the side event, entitled Implementing WHO’s Resolution on Palliative Care: Ensuring Access for Children was attended by over 90 delegates. In addition to opening remarks from two Assistant Director Generals from the World Health Organization (WHO), Dr Oleg Chestnov (ADG Non Communicable Diseases and Mental Health) and Dr Marie-Paule Kieny (ADG Health Systems and Innovation) along with the Panamanian Ambassador who closed the session, there was an unexpected but very welcome appearance by Dr Margaret Chan, Director General of WHO.

Invited to address the gathering, Dr Chan praised all the civil society organisations listed on the programme who had given their support to the event for their continued efforts and advocacy for what she called ‘this very important subject’.

Referring to the WHO resolution on palliative care (WHA67.19) passed at the 67th World Health Assembly in 2014, Dr Chan said, “We are very pleased to be able to work with you to get this resolution going. Now the important thing is to implement it and to support countries to continue to do their best for this group of children with special needs.”

Presenters were Joan Marston, Chief Executive of ICPCN, Dr Anna Garchakova, Director of the Belarusian Children’s Hospice, Ms Silvia Lefebvre, Director of the Maruzza Foundation in Italy, Dr M. Rajagopal, Chairman and Founder of Pallium India and Prof Anne-Sylvie Ramalet from the International Association for the Study of Pain (IASP).

Each of them spoke with great conviction about the need to provide education to all medical and allied healthcare professionals working with children in issues related to children’s pain and palliative care, for the development of relevant policies and for governmental health departments to find ways to integrate children’s palliative care services into their healthcare systems.

In her presentation Joan Marston quoted new research data from ICPCN revealing the global need for children’s palliative care being as high as 21,6 million, due in part to the high number of children with HIV, with 7,1 million requiring more specialised services. With an average prevalence rate of 44 in 10,000 children the ICPCN believes that presently less than 1% of children can access the palliative care services they require. India has been identified as the country with the greatest need.

The presentation concluded with a moving video interview with Lucy Watts, ICPCN’s first Youth Ambassador, who spoke of her personal experiences in accessing palliative care for children and young adults. She urged policy makers to provide palliative care for everyone in order to improve the quality of life of all who had to live with a life limiting condition.

Visit our website for information on the side event and to download and watch a selection of the presentations.

Upcoming Conferences and Events

The ICPCN website has a Calendar of Events which lists events related to children's palliative care taking place around the world. Contact us to have your event listed on this calendar.
  1. 20-26 June: 8th Annual Pediatric Pain Masterclass 2015  Minnesota, MN, USA  
  2. 8-10 July: 7th International Cardiff Conference on Paediatric Palliative Care  Cardiff, Wales, UK
  3. 27 - 28 August 6th Biannual Palliative Care Association of Uganda Conference
  4. 17 - 20 September European Academy of Paediatrics Congress and MasterCourse 2015
  5. 18 - 20 September 2nd Biennial USANA (United South African Neonatal Association) Conference
  6. 27-30 September HPCA Conference 2015

Papa Francisco - Pope Francis gives blessing to NOW campaign - ICPCN for their 10 year anniversary campaign,NOW for Children with Life-Limiting Conditions, to promote palliative care for children throughout the world.

International Children's Palliative Care Network - e-bulletin - June 2015

Pope Francis gives blessing to NOW campaign
His Holiness Pope Francis sends his best wishes to all members of the ICPCN for their 10 year anniversary campaign,NOW for Children with Life-Limiting Conditions, to promote palliative care for children throughout the world.
Impressed by the initiative and vision of the programme, Pope Francis encourages the ICPCN to continue to work for children in need of palliative care, and assures the ICPCN of his prayers and blessings on their endeavours for the success of this campaign. 
Read more
True love against the odds
Little Stars Mike Hill writes that after visiting 10 countries to capture stories with dozens of families about children’s palliative care you might think that it would be impossible to surprise him.
"Not so. In Greece, I found a story – more specifically, a love story – so remarkable that it touched my heart and affected me profoundly.
On the second day of our Hellenic odyssey, I met a 16 year old named Alexandra diagnosed with Kearns-Sayre Syndrome as an infant.
Read more

Rachel House encourages students to think about palliative care
School students in Karawaci, Jakarta recently participated in 30 Hour Famine, an event where the students fasted for 30 hours to get a glimpse of what it was like to be without a basic necessity. Rachel House was invited to speak about the need for palliative care for children in Indonesia in general, and for children living with HIV/AIDS in particular.
Read more
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Copyright © 2015 International Children's Palliative Care Network (ICPCN), All rights reserved.
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International Children's Palliative Care Network (ICPCN)
Cluster Box 3050
Assagay
Durban, KwaZulu Natal 3624
South Africa

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