ICPCN has launched a new campaign!
Every day 350 000 babies are born, an event that is, for most people, one of the most joyous moments in life. Imagine the devastation of parents when their child is born with, or develops, a condition or disease that threatens or will shorten its life.
In time, many of these parents will hear the devastating words: ‘We are sorry, but there is nothing more that we can do’. This is the heart-breaking reality for millions of children and families around the world. When palliative care services are available these words will never be spoken, because in children’s palliative care we sincerely believe that there is always something that can be done. Whether this is the provision of appropriate medications to ease the child’s pain and other distressing symptoms or surrounding the family with a compassionate team of people who will ensure a good quality of life for the child. A team that will accompany the child and family on the journey that lies ahead – a journey that can be filled with precious moments of joy between those of sadness and despair. Support will also be provided at the time of death and into bereavement.
It’s a human right
ICPCN supports the view that palliative care for children is a human right. We have established that there are over 21 million children worldwide living with a life-limiting or life-shortening condition that would benefit from generalised palliative care and around 8 million that need specialised paediatric palliative care, including the care of a child at the end-of-life. Our research also reveals that barely 1% of these 21 million children are receiving it, most of these who miss out, are living in the developing world. For these children, as the disease or condition progresses, unnecessary pain and suffering will occur, including physical, spiritual and emotional suffering.
A daunting task
Meeting a need of 21 million children seems a daunting and almost impossible task, but ICPCN believes that if we can just persuade you as an individual, in your corner of the globe, to commit to doing Just One Thing to promote and improve children’s palliative care provision, we can get closer to ensuring that these 21 million children live for as well as possible, as long as possible. And if the disease prevails and their lives are cut short, that their deaths will be as pain free and as dignified as is possible to achieve.
Watch as Joan Marston calls on everyone to commit to ‘Just One Thing’ for CPC
The ICPCN Commitment of Buenos Aires
The ICPCN Commitment of Buenos Aires, first published in May 2016, states that “all children with life-threatening and life-limiting conditions have the right to receive quality palliative care provided by trained professionals and support workers, wherever they live in the world.”
It notes with concern the unacceptable unmet need of children requiring palliative care, particularly in the low and middle-income countries and calls upon governments to ensure equitable access to palliative care for neonates, infants, children and young people, and their families. The final paragraph issues a call to action for all those who work in children’s palliative care and reads as follows:
As palliative care practitioners and advocates we recognise that disparities exist within and between countries and services, but collectively we are a rich resource of knowledge and skills. We therefore commit to share all that we can, and to collaborate with the World Health Organization (WHO), UNICEF, governments and other relevant groups to achieve our global vision of palliative care for all children who need it.
The question we would like to ask you today, is simple: Will you commit right now to do Just One Thing to help us achieve our vision?
Just One Thing
Whether you are a child, a parent, a healthcare professional, the head of a corporate organisation or just an ordinary person who would like to bring about real change in the lives of these most vulnerable of children we need your help.
We ask you to commit to doing Just One Thing to help us carry out our mission and ensure that every child in every corner of the globe receives the necessary palliative care that is their right. That one thing can be as simple as making a small (or large) once off or monthly donation to ICPCN, joining in our ‘Hats On 4 CPC Day’, taking an ICPCN online e-learning course, holding a tea party or hosting an extravagant fundraising event to benefit ICPCN or your local children’s palliative care service. You can decide to volunteer at your local children’s hospice, or raise awareness through providing training in your hospital. In fact, there is no Just One Thing that is too big, too small or too outrageous. Many small acts, can make a difference.
We will keep a count of every one thing that someone commits to do. Our greatest dream is that 21 million individuals will reach out to the 21 million children who need palliative care!
Fill in the form below and commit to doing your Just One Thing for children’s palliative care today!
Thank you for making a commitment to do Just One Thing for children’s palliative care.
To donate to our 2016 Christmas appeal
To make a donation to ICPCN
To learn more about our Hats On 4 CPC Campaign
To find out about our e-learning courses
To locate a nearby children’s hospice or palliative care service
Check out some of the Just One Things people have committed to do so far:
- Take part in Hats On 4 CPC
- Sign up for an ICPCN e-learning course
- Make a donation to the ICPCN
- Arrange a children’s palliative care workshop or In-Service Training Course in your area
- Encourage a colleague to join ICPCN
- Volunteer at your local children’s hospice or palliative care service
- Hold a round table conference on children’s palliative care with media women
- Advocate government to have palliative care services
- Providing education and training to healthcare professionals who work with children and families affected directly by palliative circumstances.
- Conducting research into decision making for children with life-limiting illnesses
- Leaving a bequest to a children’s hospice in Bloemfontein
- Including palliative care in paediatric courses
- Work as a volunteer in communication for children
- Use advocacy to improve CPC in Africa
- Finish preparing and introduce at hospital where I work a ‘care of the child at risk of dying’ care guideline for the paediatric ward medical and nursing staff
- Empower parents to support other parents
- Continue to show this amazing film (Little Stars) that can only succeed in advocacy efforts
- Work more
- Look for new ideas
- Upskill my French so as to plan to enable PPC in West Africa
- Listen and have feelings of love for my little patients and families
- Provide more support to palliative care partners in our region
- Translate any materials for website into Spanish
- Hold a Crumbs for Comfort event for Umduduzi
- Join the Umduduzi 100 Club
- Hold High Tea at the Manor House to raise funds for Umduduzi
- Provide home based care
- Try to build a children’s hospice in Argentina – there isn’t any at the moment!
- Participate in a walk to raise funds and awareness for children and young adults waiting for organ transplants.
- I am the co-founder of a non profit dedicated to promoting the necessity of PPC
- Make sure children in need of morphine for managing pain are able to get it.
- Volunteer in a children’s hospice once a week.
- Provide a hat for each child with palliative care needs on 14 October. On the hat will be written ‘Justonething for CPC’
- Advocate for pain assessment and management of pain in children as an essential process in health care delivery.
- Identification of children with life limiting illnesses for enrolment in home based palliative care.