Services are provided in 10 State Hospitals (Inkosi Albert Luthuli Central Hospital, King Dinuzulu, Clairwood, King Edward VIII, Addington, Osindisweni, Mahatma Gandhi, Prince Mshiyeni Memorial, KZN Children’s & RK Khan Hospitals). Inkosi Albert Luthuli Central Hospital is the major referral hospital serving the entire province; hence children from all over the province receive services.
Where it all began
Julia and Tracey both started their careers working for an organisation called the Big Shoes Foundation which was a Durban branch of a bigger foundation. Unfortunately, due to unforeseen circumstances, the whole organisation closed down at the end of 2012. A lot of hard work and major strides were being made by Julia and Tracey before the organisation closed down and they both realised that they couldn’t stop. “We had to start something because we are so passionate about palliative care and especially paediatric palliative care. Literally after Big Shoes closed down we then opened up Umduduzi at the end of 2012 and that is where it all began.”
Paediatric palliative care
Paediatric palliative care is really all about any child with a life-threatening/limiting illness who then becomes eligible for palliative care. Julia feels that a lot of people when they hear the word ‘palliative care’ associate it with end-of-life care and palliative care is definitely not about that! The idea and definition of palliative care states that it should start at the time of diagnosis for successful intervention to occur.
Profile of the children who are treated
The kind of kids that Umduduzi treats are those kids suffering from cancers, heart problems that can’t be cured, liver problems, kidney failure and so forth. The whole idea behind what they do is to provide good counselling coupled with good symptom control for the child while they are receiving treatment or when active treatment stops. (That does not mean that the symptom control must stop.)
They make sure that they support the families fully to make proper and correct decisions as to where the child should be cared for and looked after.
Challenges and rewards of the work we do
“Of course the main challenge of running a NGO is funding and that is the core reason as to why we are only a team of two. We cannot afford to bring on another doctor or medical person, so at times we are quite stretched because of our resources, however we are effective none the less and always make sure that every child we make contact with gets 110% commitment from us.” Stated Tracey.
Another challenge that they encounter daily, however is ‘changing mind-sets’. The work that they have been doing is remarkable and there are many doctors who would jump at utilising their services and especially early. “However in the same breath there are others that will not acknowledge that we are there. They feel by handing the child over to us it means they are ‘giving up’ which is really the furthest from the truth. On the other hand the successes are indescribable at times; we have such joy waking up in the morning, knowing we can make a huge difference in a child’s life. It is a joy and privilege.”
Palliative care making strides
Julia and Tracey both concluded by saying they have experienced and seen how people, doctors, nurses and patients have begun to fully understand palliative care and especially how meaningful it can be in terms of improving the quality of life.
“There is a real growing acceptance of palliative care and it is there for everyone to see” concluded Julia Ambler.
How can you help? Umduduzi is a non-profit organisation and is dependent on sponsorship and donations to cover their operational costs. In addition, they would also appreciate any time, expertise or goods that could be donated that would help them with the work they do. Please visit their website for more information on how you could assist them.