Children, adolescents and young people who live with incurable diseases and need palliative care want to:

1. May age not be an impediment for each of us to receive what we need.
2. To live as best as possible in the place that is good for us. If possible, better at home.
3. If we have to be in a hospital, we want to be able to be with the people and things that are important to us.
4. To be able to continue attending school, as long as it is good for us. And if it is not possible, let the teacher come home.
5. That our families and doctors explain to us, if we need it, what is happening to us and do it in a friendly and understandable way for us.
6. That when decisions have to be made about us, we are taken into account and that our own good is taken into account, before that of those who care for us or attend to us.
7. That professionals help us to be well, that they treat the problems we have, always taking into account our needs.
8. May you not forget our brothers and sisters and help us to continue to have that special relationship that exists between us.
9. That the process and the moment of our death be respected, without unduly advancing or prolonging it.
10. And please don't hide from children in general that people are dying. That does not help us to mature, to overcome difficulties or, of course, to face our own process of death when it is our turn.

Families of children, adolescents and young people with incurable diseases and who need palliative care want to:

1. That there is paediatric palliative care in all the Autonomous Communities so that we are not forced to be away from our homes due to the illness of our children.
2. That we are honestly informed of the evolution of the disease so that we can make the most appropriate decisions for the real situation of our children.
3. If the diagnosis occurs during pregnancy, we should be informed realistically by professionals who know what our child's life will be like from birth and we are offered, also in that situation, palliative care.
4. May we be helped to face and accept the reality of incurability and the prospect of death without creating false hopes.
5. To be able to maintain and strengthen family ties.
6. That we are taught the necessary care to be able to take good care of our child at home.
7. That we are offered respite programs to relieve overload, avoid claudication and be able to continue to care for our children.
8. That there are specific day centers where we can take our children when they need it.
9. That when we are at home we can be attended to 24 hours a day, to face situations of fear, uncertainty and insecurity in care.
10. That after death, they do not abandon us and that we can receive grief care if we need it.

Professionals for children, adolescents and young people with incurable diseases and who need palliative care want to:

1. That palliative care be regulated at the national level and that comprehensive care by specific pediatric interdisciplinary teams be recognized as a criterion of quality of care.
2. That all the Autonomous Communities dedicate the necessary resources (human, organisational and material) so that specific attention can be given to all children who need it with equity.
3. That sufficient human, technological and transport resources are provided to make home care possible 24 hours a day.
4. That new resources be incorporated into pediatric palliative care such as the "Hospices" that exist in other countries (comprehensive care centers for respite and death).
5. That training in palliative care be regulated and that it be valued to incorporate professionals into the teams.
6. That the value and difficulty of the work we carry out is taken into account so that spaces and mechanisms for self-care are provided, as well as flexibility in the workplaces.
7. That society opens up to this reality and is committed to supporting and caring for children and families who are in this situation.
8. We do not want palliative care to be linked to death. Our job is to help make children's lives as full as possible in the most difficult and advanced stages of their lives.
9. Euthanasia is a practice that falls outside of paediatric palliative care.
10. That we are counted on when we want to legislate or communicate on the issues that are the object of our work.

You too can put a voice by adhering to it !!

Enter change.org and signature : https://www.change.org/manifiesto_cuidados_paliativos_pediatricos

You can watch the video of the Manifesto here .

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