The Children’s Hospital Trust will be funding the Western Cape’s first dedicated hospital-based paediatric palliative care programme in the Province. The programme offered by The Bigshoes Foundation will assist healthcare professionals at tertiary and district hospitals, specialised children’s hospices and homes and home-based care organisations to provide comprehensive care for children in need of long term palliative care.
Palliative care is a specialised area of healthcare that focuses on relieving the suffering of patients and their families, when facing life-threatening or life-limiting illness. Unlike hospice care with its focus on end-of-life care, palliative care is essential for patients as they progress from diagnosis, to disease progression and finally to end of life and includes the family’s bereavement.
In South Africa palliative care has largely been developed out of the Hospice movement and is predominantly community based. Although hospices in South Africa have been caring for adults since the late 70’s, there are few hospices that have the confidence to treat terminally ill children, especially those with more complex conditions.
In the Western Cape alone, more than 80 000 children live with life-limiting or life-threatening illnesses that could require palliative care. Unfortunately, there are few dedicated services offering comprehensive care in children’s hospitals, homes or hospices in the Province. This has resulted in many of these children spending long periods of time in in hospital or being sent home with the ultimate care falling on the ill-prepared family.
Many not properly trained
Healthcare professionals generally receive insufficient training in paediatric pain management and palliative care which means that chronically or terminally ill children’s symptoms are not managed optimally; they are hospitalised for prolonged periods; and may die in hospital rather than at home.
As a result, these children and their families experience tremendous distress and suffering that could be prevented to a large extent.
Palliative medicine uses a multidisciplinary approach to patient care, relying on input from physicians and nurses and other allied health professionals. The Bigshoes consultative team will provide training aimed at giving the children dignity, relieving their suffering and offering support to families who care for them during this very emotional and difficult time.
Tertiary and district hospitals, intermediate facilities and home-based care organisations will be trained, supported and mobilised into a network to offer healthcare professionals the training they need to care for these children.
“Decreased hospitalisation of these children not only makes economic sense but also decreases the emotional and financial burden of recurrent hospitalisations on the child and their family,” explains Dr Michelle Meiring, Clinical Director of The Bigshoes Foundation.
Dr Meiring says that when there’s nothing more that can be done, there’s actually a lot that needs doing. The Children’s Hospital Trust will raise 50% of the approximate R5.6million needed to fund this programme over a three year period, while Bigshoes will fundraise for the remainder. The first year of this programme has been funded by The Harry Crossley Foundation and surplus funds raised at the 2011 Art Benefit in aid of the Hospital.
Childhood death a tough reality
The Red Cross War Memorial Children’s Hospital has an active Pain Management Unit headed by Professor Jenny Thomas with whom Dr Meiring has worked closely since 2010, introducing the palliative care programme at the Hospital. The Bigshoes team will work alongside the existing teams of healthcare professionals to formulate a plan of care to relieve suffering in all areas of a patient's life, promoting maximum quality of life.
“The Children’s Hospital Trust’s fundraising for this programme is part of our extended strategy to fund programmes that not only support the needs of the Red Cross War Memorial Children’s Hospital, but also impact more broadly on supporting paediatric healthcare in the Western Cape.
Death in childhood is unthinkable but a tough reality - the Bigshoes programme will help affected patients and their families deal with this reality and allow terminally ill children to be able to spend their last days with their families in their home environment doing the things they love without pain and with peace,” says Louise Driver, CEO of the Children’s Hospital Trust.
(Press release, March 2012)