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Palliative care brings life to the room

Read the report of the successful webinar that took place in October 2022.


These are some of the words from our webinar guests, where we launched our new EAPC Charter for children. This was developed as a tool for empowering children, families and health care professionals in advocating for the development of children’s palliative care services across Europe. During the webinar, a healthcare professional, a parent and a young person tell their stories. We wrote a short summery.

A Peadiatrician, a mother and a young woman

We opened the webinar with a paediatrician from the Czech Republic, Mahulena Exnerova, who talked about the importance of advocacy for  professionals, but also for  other stakeholders and system representatives. Children and young people can often miss out on support, but the same is also true for professionals. We often have such a mountain of work to doand we, as professionals, tend to do this in our own private time. This caught Mahulena’s eyes. We should never stop caring for ourselves. Like on an airplane, we first have to put on our own masks and then we are able to help others.

Then we heard from the mother of Seppe, representing the view of parents. Renee was talking about the burden of making decisions, these are relentlessly expected from parents and her comfort team gave her relief from this constant pressure. They helped her to create an integrated total care plan which involved communication with her whole family, including her other children.  It was not only about dying, it was about living an ordinary life every day with a so called ‘helicopter team’ looking after them from behind the scenes. This helicopter team included the comfort team, community team, GP etc.  and provided ‘all we needed to be able to enjoy our lives’.

Last, but certainly not least, was Hannah, a young person who needed palliative care in her life after a long hospitalisation, when shesaw her life change and no longer being in her own hands. When palliative care first entered her ‘room’, it was very hard for her to hear the word hospice, but now she speaks about her support, about palliative care as a friend who brings life to the room and recognition of her as a person, not just a patient. She said ‘palliative care helps me to have a good life, with my family, with my friends, who previously did not know what to say to me and didn’t come into my room’. Palliative care has made it possible for me to talk honestly and feel very much in the centre of care.

You can see a recording of the webinar and support the Charter by signing it here.

 


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