Do Just One Thing for Children's Palliative Care

by International Children's Palliative Care Network
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Do Just One Thing for Children's Palliative Care
Do Just One Thing for Children's Palliative Care
Do Just One Thing for Children's Palliative Care
Do Just One Thing for Children's Palliative Care
Do Just One Thing for Children's Palliative Care
Do Just One Thing for Children's Palliative Care
Do Just One Thing for Children's Palliative Care
Do Just One Thing for Children's Palliative Care
Do Just One Thing for Children's Palliative Care
Do Just One Thing for Children's Palliative Care
Do Just One Thing for Children's Palliative Care
Do Just One Thing for Children's Palliative Care
Do Just One Thing for Children's Palliative Care
Do Just One Thing for Children's Palliative Care
Do Just One Thing for Children's Palliative Care

A recent study published in the Journal of Palliative Medicine revealed that 71% of adults in the United States had never heard of palliative care. It is our experience that ignorance about children's pallaitive care is even more widespread.

It often feels as if we are 'whistling in the wind' when working to raise the profile of the vital work of children's palliative care providers and children's hospices. Not only do we remind people of the 'taboo' topic of death, particularly as it pertains to children, we know that there are many other tragic and equally deserving causes out there competing for the same funding from the same compassionate people. We thank you for acknowledging and caring about ICPCN and about palliative care for children.

The 'Do Just One Thing' for Children's Pallaitive Care GlobalGiving campaign managed to raise just over $1000 towards the education work of our organisation and we have decided it is time to bring it to a close.  

Over the years your money has helped us to reach many thousands of children.

To date, ICPCN has provided face to face training for over 1,000 health care professionals. Additionally, more than 3,500 people have signed up for one or more of the modules on our e-learning platform. If we consider that after receiving training each of these people provided improved and more holistic and compassionate care for just 10 children with a life-limiing or life-threatenting illness, potentially we will have impacted the lives of more than 45,000 children globally.

For this reason we cannot underestimate or undervalue the educational element of our work. 

We have created a new GlobalGiving campaign with a focus on improving pain assessment and pain management in children. Please do visit our website to learn more and help us achieve our vision that all children living with life-limiting or life-threatenting conditions, and their families, will have seamless access to palliative care in order to alleviate serious health-related suffering and enhance their quality of life.  

Thank you once again for your generosity. ICPCN relies entirely on charitable funding and donations in order to continue doing the work we do, and this is becoming more and more difficult to source. 

Don't forget to join us for our 6th annual 'Hats On for CPC Day' to raise awareness and funds by wearing a hat to work or school on 11 October. 

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ICPCN team & partners at Durban meeting
ICPCN team & partners at Durban meeting

Dear friends

Every culture has its own belief systems, practices and ways of celebrating important life events. And every culture has its own taboos - things you can talk about and things you should not. We are respectful or our differences and celebrate the strength to be found in our diversity.

However, across almost every culture where ICPCN has membership, one taboo consistently arises. The taboo of talking to children about death. In some cultures, this is a very definite 'no, no' and in others it is just assumed or thought that it should not be done. For most of us it is something to avoid at all costs because we want to protect our children and it is simply too difficult a conversation to have. 

So what do we say to children who have a life-threatening or life-limiting illness from which they are likely to die? Should we pretend that everything is fine when most children know that everything is not fine? What do we say to children who have a parent with a life-threatening or life-limiting illness? Should they be told the truth or 'protected' by the adults around them who pretend that all will be well?

The team at ICPCN has recently been involved in a seminal research project with a team from Oxford University on developing guidelines for health care practitioners to encourage holding honest conversations with children about their own illness or the illness of a parent. Conversations that do not avoid talking about the possiblilty of death and addressing the fears and concerns they may have been holding on to so as not to upset others.

We recognise how important it is to talk to children of all ages about these difficult topics in a way that is honest yet thoughtful and compassionate and will make them feel supported, despite their distress. The end result of this consultative process will be a set of guidelines for health care practitioners who work in low and middle income countries on how best to communicate with children in these situations.

ICPCN is proud to be associated with this project and we look forward to sharing the guidelines with our members and disseminating them through our network. A two-day focus group workshop with the researchers from Oxford, the ICPCN team and key stakeholders was recently held in Durban, South Africa, where ICPCN is based. 

We also have exciting plans to increase awareness on the importance of recognising, assessing and effectively treating acute and chronic pain in children. Far too many children are living and dying in agony because their pain goes unrecognised and unmanaged, particularly in developing countries. The need to address this is urgent. 

We hope you agree with us that ICPCN's work is crucially important in advocating for children's palliative care, advancing research in the field, providing education, networking and disseminating important information on supporting children with hospice and palliative care needs.

We are the only global organisation that provides free e-learning courses on children's palliative care in multiple languages and we are recognised as a global leader in the field. Despite this, we are finding it more and more difficult to access funds to continue our work and are humbly asking once again for your support. 

A small monthly donation of as little as $8 - $10 or a once off donation of any amount to support our work would be so gratefully received. If you also believe in the value of our work and are able to donate, please click on the DONATE link on our project page and follow the prompts provided. 

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Palliative support for child and family in Moldova
Palliative support for child and family in Moldova

What a whirlwind of a year it has been! The weeks and months of 2018 have flown by and we are so grateful to find ourselves at the end of another year where we can contemplate our accomplishments while planning for a successful new year.

So, what has ICPCN accomplished this year? Here are just a few of the highlights: 

  • We held a our most successful 3rd ICPCN Conference in Durban, South Africa with delegates from over 40 countries. This not only ignited a passion for children's palliative care within the local health care community but gave renewed energy to many to provide the best care possible to children and families facing life-limiting and life-threatening illnesses. 
  • Provided face-to-face training and personal support for the development of children's palliative care in several countries including Hong Kong, China, Moldova, Kuala Lumpur, India, Austria, Italy and Mozambique.
  • Provided the opportunity for 863 people from 85 countries to register for one of our free online E-learning courses in children's palliative care.
  • Held our most successful 5th Hats On for Children’s Palliative care day - which reached over 800 000 people on our social media platforms, raising the profile of children's palliative care globally.
  • Produced an exciting new Strategic Plan to guide the path our work will take and the new heights we aim to reach in the years 2019 - 2023 

ICPCN is entirely dependent on donations and grants and our many achievements are only made possible through the hard work and dedication of a very small staff and the generosity of those who donate towards our work. Thank you so much for being one of those people! Please take a moment to receive and feel our sincere gratitude for your assistance in the past. So far, we have received 100 donations for this campaign, totalling $11,614.33. We are indebted to every single person who has helped us reach this amount and for the support of the Global Giving team. 

Going forward, we will continue to find ways to create reality from our vision. That all children living with a life-limiting or life-threatening condition and their families will have seamless access to palliative care in order to alleviate serious health-related suffering and enhance their quality of life.

Every amount, small or large, that you donate towards our work will help us to accomplish this. If you would consider an end of year donation to our 'Just One Thing' campaign, we would be most grateful. 

We would also like to take this opportunity to wish you a very blessed festive season and a joyful and successful 2019. 

ICPCN Training in Moldova
ICPCN Training in Moldova
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Hats On for CPC
Hats On for CPC

The International Children's Palliative Care Network recently hosted a most successful Conference in Durban, South Africa where we welcomed delegates from 43 countries. It was an incredibly rich time of sharing, learing, networking and included some fantastic experiences of a beautiful and diverse country and its people. We are so proud of what this conference achieved and were thrilled to hear the positive feedback from delegates afterwards. One delegate wrote,“Never before have I felt so much at home at a conference. Never before have I been surrounded by so many brilliant, kind, compassionate, unassuming and warm souls all at once. People who refuse to take no for an answer, for whom no wall is too high, no boundary impervious, no child less important than the others. People who insist on looking for the humanity that unites us all.”

Through fundraising and generous donations, ICPCN managed to sponsor or secure sponsorship for the attendance of more than 50 delegates to this conference, many of whom would otherwise not have been able to attend, and we strongly believe that countless children  with life threatening illnesses will benefit from their participation. We are extremely proud of all that we achieved through the 3rd ICPCN Conference and believe that children's pallaitive care was strengthened not only in South Africa, but globally as well.

We have been running our 'Just One Thing' fund raising campaign since our 2nd conference in Buenos Aires in 2014 and have had many people doing many things to support our work.

But today we ask you to do just one more thing! On 12 October this year will you to take part in our 'Hats On 4 CPC' campaign by wearing a hat to work or school? There are many wonderful and fun ways that you can participate in this awareness raising campaign. You can read all about them on our website.

We hope that you will participate in #HatsOn4CPC and make a small donation either to ICPCN or a local children's pallaitive care service. With every dollar of support we receive, we promise we will continue to do what we do best to work towards a world in which children with life-threatening and life-limiting conditions do not suffer unnecessarily and are given the physical, social and spiritual support that they deserve.

#HatsOn4CPC
#HatsOn4CPC
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Rethabile and her doctor with the snake
Rethabile and her doctor with the snake

Rethabile, a young South African girl undergoing treatment in hospital for a very rare bone cancer, told her doctor she dreamed of going to the zoo. She wanted to see all the animals, but most of all she wanted to see the snakes. Too sick to leave the paediatric ICU, her doctor did what any good palliative care doctor would do. He arranged for a snake to visit Rethabile.  After she died, her doctor received a beautiful note from her mother. It read:

"I have no words to thank you. You gave me a lifetime of memories with my child. You turned the worst into the best. I will always cherish the moments we had with 'Ritsi'. You loved her like your daughter, you never gave up on her. She died peacefully, knowing that she was loved. She is now in a better place. Thank you for everything."

Her doctor knew that treating Rethabile's pain and symptoms was only meeting her physical needs. He found a way to meet all her needs and the needs of her family. That is palliative care in a nutshell. 

We don't work directly with children at ICPCN so it's not always easy to explain to people how the work we do improves the lives of children like Rethabile. But with your help, it does.

Your money allows us to travel to countries where there is little or no children's palliative care provision and train key health care professionals, like Rethabile's doctor. For example, we recently provided training in CPC to key people in Mozambique. These doctors, nurses, social workers, pastors and therapists touch the lives of thousands of children like Rethibile every year. 

You have already donated to us once, so you believe in the work we do.

There are still so many people who don't know of the work of the ICPCN. They have no idea that there are 21 million children in the world who could benefit from pallaitive care services. Please help us reach them. 

Will you forward this email to at least one person who you think may be interested in our work and who may consider a once off or monthly donation? If each person who receives this email donated as little as $8 dollars and then forwarded it to another who did the same, and that person forwarded it to another, imagine the difference we could make collectively!

So the Just One (more)Thing we are asking you to do today, is to donate to us and forward this mail to another person. Do it for children like Rethabile and for her mother and for the many, many more who need  our help.

Health Care workers in Mozambique trained by ICPCN
Health Care workers in Mozambique trained by ICPCN

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Organization Information

International Children's Palliative Care Network

Location: Bristol - United Kingdom
Website:
Facebook: Facebook Page
Twitter: @iCPCN
Project Leader:
Sue Boucher
Bristol, South West England United Kingdom

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Combined with other sources of funding, this project raised enough money to fund the outlined activities and is no longer accepting donations.
   

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