Twinkle Twinkle Little Star – David Suchet
This short film, narrated by acclaimed British actor David Suchet CBE, communicates some of the key principles of children’s palliative care.
Regrettably, not all children are blessed with the gift of good health.
In fact, there are over twenty million children around the world who have been diagnosed with potentially life-limiting conditions.
Twinkle, Twinkle Little Star – David Suchet
You are about to witness something unexpected – the extraordinary stories of children and young people around the world living, and thriving, with serious illnesses. This is thanks not only to their tremendous individual characters, courage and spirit, but also to the support of their loved ones, who are working in close collaboration with children’s palliative care teams. Children’s palliative care is a response to the suffering of a child and their family facing life-threatening conditions. These illnesses may be relatively common, like cancer and cystic fibrosis, or very rare indeed. Children’s palliative care is holistic, looking at the body, mind and spirit within the social and cultural context. It cares for the child, and their family, from the time of diagnosis and can continue for years or even decades.
Care is provided by multiple professionals specializing in physical, phycological and social support, wherever that care is required. Many life-limiting conditions are familial – they run in the family.
Children’s palliative care acknowledges that despite their diagnoses, children continue to develop physically, emotionally and cognitively.
This affects both their medical and social needs and their understanding of disease and death. Importantly, children’s palliative care demands the provision of education to sick children as essential, and a legal entitlement. It also acknowledges that this adds to the complexity of care.
Children’s palliative care acknowledges that families are the prime careers and that home is the centre of caring. Services should be coordinated to provide flexible, comprehensive support for the whole family, including siblings. The care of children with life-limiting conditions should be holistic and multi-disciplinary. This requires a range of services and the skills of those trained and experienced in the care of children. In all settings children should be cared for in a child-centred environment.
Different aspects of the children’s palliative care package are delivered by a wide range of services and agencies across the health, social and voluntary sectors. This requires close liaison and effective networking to deliver care in a coordinated way.
Children’s palliative care stands for social inclusion and rails against discrimination. It seeks out opportunities for growth and development. And it advocates for the voice of children living with life-limiting illness to be heard.
Children’s palliative care cares for the child from the time of diagnosis until death, and after death it does bereavement support for the family. In some countries health professionals never acknowledge death in children. The cultural denial of the fact that children actually die prohibits the development of children’s palliative care services. The taboo around child death, without an open and honest approach, means that families are often forced to make ill-informed decisions to pursue aggressive curative treatments.
Little Stars tells the surprisingly life-affirming stories of young people around the world living with life-limiting illnesses. Against the odds, these children and young adults are making the most of every moment thanks to the support of their loved ones, working in harmony with passionate ‘pain and palliative care’ teams.
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True love against the odds – Little Stars Greece
Guest Blog by Mike Hill (Filmmaker, Little Stars)
After visiting 10 countries to capture stories with dozens of families about children’s palliative care you might think that it would be impossible to surprise me.
Not so. In Greece, I found a story – more specifically, a love story – so remarkable that it touched my heart and affected me profoundly. Read more…