I am often asked, “so do all the children you support have cancer or HIV?”
This fascinates me as there are so many other conditions requiring good quality palliative care. I am sure it has something to do with the publicity that cancer and HIV get worldwide.
Next month is both World Cancer Day, celebrated every year on the 4th of February and International Childhood Cancer Day on the 15th. There are awareness months for childhood cancer, skin cancer, eye cancer, cervical cancer, breast cancer, bone marrow stem cell donation and Leukaemia; a week for CANSA care, and even a day for cancer survivors. And lastly let’s not forget National Bandana Day.
Locally, there are over 11 non-profit organisations dedicated specifically to support children with cancer and their families.
And while this is truly wonderful – a lot of good people raising funds and doing amazing work – there are children suffering with other conditions receiving little or no support at all.
So as Umduduzi – Hospice Care for Children, Member of PatchSA (http://patchsa.org/), our aim is to raise awareness for palliative care and for all the children that need it.
“Palliative care for children is the active total care of the child’s body, mind and spirit, and also involves giving support to the family. It begins when illness is diagnosed, and continues regardless of whether or not a child receives treatment directed at the disease. Health providers must evaluate and alleviate a child’s physical, psychological and social distress. Effective palliative care requires a broad multidisciplinary approach that includes the family and makes use of available community resources; it can be successfully implemented even if resources are limited. It can be provided in tertiary care facilities, in community health centres and even in children’s homes.”
World Health Organization 2002
So the children we see range from newborn to 18 years of age. They have a variety of conditions including congenital or inherited disorders, organ failure, prematurity, neurological deficits, infections and of course HIV and Cancer. Every child with a condition that causes symptoms needs some form of palliative care whether it be emotional support or pain management. And regardless of the condition, their parents need support too. We may not be able to prevent all illnesses but through palliative care we can offer a different strength and hope.
Please help us in 2017 to raise awareness, because when individuals understand what palliative care is and its benefits they can start to ask for it and only then will the supply need to meet the demand.