Do Just One Thing for Children's Palliative Care

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. 

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.