Increase Paediatric Palliative Care in KZN, SA

Wow! I can hardly believe that it is already February 2019. Where does time go? 2018 was a good year for Umduduzi - Hospice Care for Children. Our work keeps growing as more health care professionals realise what we can offer them and their patients. While that is awesome for the patients because it means they are getting the care they deserve, capacity remains an issue. As a team we work to ensure that every family is seen and that they are given the care and support that they need. A tough task sometimes with a team of 3 but we believe in what we do and so find a way to make it happen. 

Sometimes our work takes us out of our area of expertise but it is what our patient needs. Palliative care is holistic care. It is about meeting the needs of the child - body, mind and spirit. Take for example NV. He is a 13-year-old boy with a very rare condition called polymyositis. Polymyositis is an inflammatory disease that causes muscle weakness affecting both sides of your body. Having this condition can make it difficult to climb stairs, rise from a seated position, lift objects or reach overhead. In NV’s case, he is wheelchair bound and is unable to use his arms. He only has use of his thumbs. One of NV’s greatest needs is to go back to school. A difficult task in a rural community where roads are not accessible for wheelchairs and the distance to the school is very far. In addition to that, there are not many community schools who will accept a “special needs” child. This is incredibly frustrating as NV is an exceptionally clever young man who is being treated as if he is cognitively impaired. The only thing wrong with him is that his body doesn’t work so well.

As a palliative care team we have had to venture into a completely new world. We are meeting with the schools to try and promote NV’s case to be at school in a class of his peers. We are negotiating transport because his family are unable to get him to school and he cannot get himself there. We are also trying to manage the emotions of a teenage boy whose mind is active but whose body is failing. Although a challenge it is one we are willing to take on. Just because NV has a life-limiting illness it does not mean that he cannot fulfil his potential.

Therefore, as we venture into 2019 I would like to take this opportunity once again to thank you for your continued support. It is because of you that we are able to do what we do and that we are able to help NV meet his full potential.