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.
You signed up for membership of ICPCN.

Our mailing address is:
International Children's Palliative Care Network (ICPCN)
Cluster Box 3050
Assagay
Durban, KwaZulu Natal 3624
South Africa


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.
You signed up for membership of ICPCN.

Our mailing address is:
International Children's Palliative Care Network (ICPCN)
Cluster Box 3050
Assagay
Durban, KwaZulu Natal 3624
South Africa

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