Wherever you’re headed on Friday, 12 October, make sure you wear a hat and lend your support to the #HatsOn4CPC initiative, raising funds for palliative care services offered to children with life-threatening or life-limiting illnesses.
Organised by The International Children’s Palliative Care Network (ICPCN), #HatsOn4CPC both raises funds and creates awareness about the vital work being done by children’s hospices and palliative care services globally. ICPCN plays a strategic role within the international health and palliative care arena, assisting countries and organisations to develop services and promote universal access to palliative care for children and their families.
The valuable impact of palliative care is evidenced by the smiling face of young Gauteng resident, Koketso. Admitted in August 2010 to Lambano Sanctuary, a hospice facility in Germiston offering palliative care to children, Koketso was in considerably ill health.
Lambano Sanctuary is a 14-bed inpatient unit that receives patients from a large catchment area. It is the only paediatric facility offering palliative care to chronically ill children in the Gauteng province. Although Koketso’s dire condition warranted hospital admission for a proper work up, territorial factors and a lack of referral summary meant Lambano Sanctuary was his last hope.
With limited medical history, the dedicated staff at Lambano Sanctuary worked with Koketso and his foster mother, providing a caring hospice environment and access to much needed medical care from Chris Hani Baragwanath Hospital. Within less than a year, Koketso had made a remarkable recovery, with his quality of life drastically improved from his first admission when he required end-of-life care. He has since moved back home to Pretoria.
It is estimated that Koketso is one of more than 21 million children worldwide who are battling with a life-threatening or life-limiting illness or condition. At present, fewer than 1% of these children have access to children’s hospices or palliative care services. In South Africa, it was recorded in 2013 that more than 800 000 children are in dire need of palliative care. This number has, in all probability, only increased over time.
“Palliative care is essential for all children, and the families of these children, suffering from life-threatening and life-limiting illnesses,” explained Busi Nkosi, Director of Advocacy at the ICPCN. “Those working in palliative care offer relief from suffering while promoting quality of life for these children. When the time comes, palliative care ensures a dignified, pain-free death – something everyone deserves.”
Children’s palliative care (CPC) is holistic care that responds to the unique physical, emotional, social and spiritual needs of a child with a life-threatening or life-limiting illness, as well as the needs of the child’s family. Physiotherapy, occupational therapy, counselling, and social services are just some of the resources are offered. All assistance is tailored according to the needs of the child and family.
Some of the illnesses treated include:
– Congenital abnormalities
– Cystic fibrosis
– Severe Down’s Syndrome
– Organ failure
– Moderate to severe cerebral palsy
– Neuromuscular conditions
– Drug-resistant TB
– Severe malnutrition
– Metabolic conditions
– Rare diseases
The primary palliative concern is that the child’s pain and symptoms are relieved so that they are able to enjoy the best possible quality of life, for whatever period of time that may be. CPC also supports the child and family at the end of a child’s life with bereavement care provided for as long as it is needed. This specialised care is delivered by a dedicated team of people, many of whom wear many different hats – symbolically represented in the #HatsOn4CPC initiative.
If you would like to support the 5th annual #HatsOn4CPC awareness campaign, just follow these 3 simple steps:
1. Wear a hat to work, college or school on Friday, 12 October 2018.
2. Take a selfie and post it to social media using #HatsOn4CPC and tag ‘ ICPCN’.
3. Donate online at www.ICPCN.org or directly to your nearest children’s hospice or palliative care service.
Those motivated to do more to raise awareness for these children can encourage businesses and schools to get involved. Alternatively, get creative and host a ‘Mad Hatter’s Tea Party’ – and be sure to take photos and tag ICPCN using #HatsOn4CPC.