Counselling, art, music and therapy will work wonders for our healthcare
Focus falls on providing palliative care for the millions who need it
For years doctors accused Huyaam Samuels of being overly dramatic and imaginative and told her that her chronic pain was not real.
It was only when palliative care became part of the Cape Town University student’s life that she discovered real support from the medical fraternity.
Samuels, 19, suffers from Pseudo-achonodroplasia and Hypermobility Syndrome, a rare medical condition that is characterised by chronic pain, chronic fatigue, joint laxity and joint dislocations or subluxations, a slight misalignment of the vertebrae.
“Doctors never believed in me. They said they can’t fix me. As a teenager, growing up like this, it impacted me really hard. But when palliative care came into my life, it brought meaning to my life,” she told Times Select.Samuels, the youth ambassador for Palliative Treatment and Care for Children, will be speaking at the upcoming International Children's Palliative Care Network (ICPCN) conference in Durban later this month.
The World Health Organisation describes palliative care as an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.
In South Africa less than 5% of affected children can access appropriate palliative care due to lack of this service.
Research by the ICPCN and Unicef revealed that at least 800,000 children in South Africa have a condition that will shorten their lives, with about 305,000 requiring specialised palliative care services, due to a terminal diagnosis.
Samuels said palliative care provided her with a solid treatment plan and helped her form a regime that allowed her to do normal activities like most young people her age.“Through palliative care, I received counselling, art and music therapy and endless support from my doctors and the palliative care team.
“You are not just dealing with one or two doctors. With palliative care you are sitting with a multi-disciplinary team and not only do they provide support for me but for my family as well.”
ICPCN local organising committee chairperson Sue Boucher believes the conference will put palliative care in the spotlight, allowing more children to access it.
“The national policy for palliative care, which includes care for children, has been approved for adoption by the South African National Health Council.
“The ICPCN strongly believes that this conference will make a vital contribution to building a positive and enduring legacy of informed healthcare and other professionals, empowered with the knowledge and skills to further develop children’s palliative care provision within the province of KwaZulu-Natal and in South Africa."
“It is only through this kind of event, coupled with continued mentoring, that we will reach the many thousands of children in our country in urgent need of this specialised care,” she said.