We asked three people to write a letter to Santa Claus. What wishes do they have for Santa when we are talking about child palliative care?
This year we have made great strides with the EAPC Children & Young People Group. Working with the EAPC Board and our Group members, we are growing up… Not only did we achieve the status of Reference Group, which gives us more influence and responsibilities, but we also managed to present our charter. We are very happy with the steps we are taking. But there is still much to be done for the equitable development of Children & Young People’s Palliative Care. We asked three people to write a letter to Santa Claus. What wishes do they have for Santa?
My name is Dave and I’m 8 years old. I have Batten disease. I really want to be a soccer player, but I don't think that will ever happen because I have been going to the hospital a lot…
Instead of that, I would really like to go to school and play soccer with my friends while I can. If soon that will no longer be possible, then can I maybe get a wheelchair. One that is easy to drive along the field so I can cheer on my friends!
For all the children who are also ill, I wish they can play with their friends too. Oh, and Santa, can I have those blue soccer boots please?
Wishes from a mother
I am Tess, and my 15 year old daughter Lisa has cystic fibrosis. She is a sweet funny girl, who does need a lot of care. Think not only of all the hospital visits we must make, but especially all the tasks of daily life… And everyday we are trying to answer so many questions like: “is it safe for Lisa to go on a school trip?” “are any more adjustments needed at home?”…
Despite all the difficulties, I am grateful because Lisa’s healthcare team goes by the so-called integrated total care plan - this is so helpful to us as parents! It allows us to better oversee all of Lisa’s care (we deal with more than 20 caregivers… that's so many, Santa, it would be a full-time job just to arrange and coordinate all the care ourselves…)
Also, together with the care professionals, we are continuously looking towards the future. What is likely that Lisa will need later on and how can we anticipate and prepare for this? However hard it is, if we discuss matters in time, we can better understand what is coming. And this is not just about Lisa, but also about us and her siblings. Is there something they need, now or in the future? I hope we continue to do this because this is so important. I wish healthcare professionals will continue to have the courage to raise such issues with the families.
And Santa, I wish, oh I wish, that all little children like Lisa and all the families like ours also receive such great care. All around the world. Because they need it and they deserve it.
PS – Lisa says that if she is able to stay at home this year she will bake you some chocolate chip cookies
Will you make it happen, Santa?
I almost couldn’t find the time to write this letter – we have been so busy around here! It seems that more and more children are being recognized as having palliative care needs…(this is great for them, but we do need more services and trained personnel!)
During my work I see children who need palliative care sometimes for only a short time and sometimes for years. Often I see that my colleagues who don’t have palliative care education don’t know exactly how to deal with such care and related issues, so when the families finally reach us they feel quite lost.
That’s why I wish that all professionals that care for children with life-limiting or life-threatening conditions should have at least basic Pediatric Palliative Care education. It’s so important to increase awareness and knowledge about children and young people palliative care needs.
I’ve been good, so I believe I can add one more wish…
That all the children and families who need palliative care have easy access to quality services, so they will always feel supported throughout their journey and be cared for wherever they wish and prefer.
Will you make it happen, Santa?