Umduduzi – Hospice Care for Children
• Tell us about the history of your Organisation
Palliative medicine is a poorly understood concept in South Africa and there is a huge gap in services for children. We established Umduduzi in January 2013 to address this gap – we provide care and support to children with life limiting and life threatening illnesses in the form of pain and symptom control, counselling of the child and family and bereavement support when a child dies. Few health professionals know how to support families facing serious illness. We provide direct services to families but also invest time in training other health professionals to be able to provide this care.
• Which three words best describe your Organisation?
Compassion, Comfort and Care
• If you could change only one thing about your Organisation, what would it be?
It would be wonderful if palliative care services were integrated into all health services both private and state sector. Then we could focus on our jobs and not worry about fundraising to survive as an organisation.
• Describe what a typical work day looks like for you at your Organisation?
We drive a lot! Most of the day is spent consulting with patients and their parents at one or more of eThekwini’s 10 main state hospitals. The children we see may be battling with a range of conditions from cancer, organ failure, prematurity to congenital problems, neurological disorders and infectious illnesses. We help the health professionals and families to make good decisions about treatment options and when treatment is failing, to change focus to comfort care. I also drive between the medical school campuses teaching medical students for 6 hours a week. In between we are fielding calls from across KZN – the different hospitals and hospices seeking advice or a new referral. We also squeeze in home visits to the children that have been discharged. At night we find time to answer the myriad of emails and work on our fundraising so that we can wake up and do it all again tomorrow.
• What is the one thing you wish members of the general public knew about your Organisation?
Palliative care is not the same as terminal care or end of life care. It is about ensuring best possible quality of life during any illness or treatment and all we believe all health professionals should be trained and able to provide it!
• Describe the saddest moment you’ve experienced while at work in your Organisation
There have been so many it is hard to pin it down to one, but I will try.
Jabu* sent me an SMS today. 2 weeks ago she lost her 4 year old son to a debilitating kidney problem; he died very comfortably with dignity at home with the help of Umduduzi. She is missing him dreadfully. But the loss goes beyond this heartache to absolute destitution. You see children with chronic illnesses that require 24/7 care are eligible for a government grant of R1400. But when the child dies the grant goes with them. Jabu had to give up her job to care for her precious son. Now she is stuck, jobless, starving and grieving.
The saddest moments are when we realise the social issues go way beyond our resources and good palliative care is not enough.
• Apart from donating money, how can members of the general public assist your Organisation?
We are planning to open an assessment centre later this year – we will need folk willing to donate their time and possibly expertise in decorating, gardening and volunteers willing to come in and play with the children. We also ask supporters to participate in Crumbs for Comfort – organise and event of your own, such as a dinner or a tea, ask friends to support and donate to attend. Email firstname.lastname@example.org for more information
• Describe the happiest moment you’ve experienced while at work in your Organisation
It has to be seeing a child, fully empowered to live a life full of quality and their parents coping with the enormous stress and anxiety that comes along with having a sick child.
• If you could say only one thing to the Community your Organisation serves, what would that be?
Call us early if you see a need. People are often afraid of contacting us too soon in the course of an illness, as if somehow it means ‘giving’ up. But that’s not what we do. It’s all about quality regardless of the expected outcome. Health professionals will only start to realise this when patients start demanding it!
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