Palliative Treatment for Children (Patch) South Africa is an inclusive and compassionate network that aims to share specialised knowledge, tools and opportunities to ensure the best possible care for children with life-threatening and life-limiting illnesses, and to provide support to families and lay caregivers.
Patch is a registered non-profit organisation. NPO no: 124-201
PATCH-SA welcomes any families, lay caregivers and child-caring professional including paediatricians, GP’s, nurses, social workers, allied health practitioners, psychologists, teachers, clergy etc to join the network.
Patch community seeks to empower the broader community to support professionals and affected families through fundraising and
other practical initiatives.
Seeks to support families and lay-caregivers through sharing information, practical tools and experiences along their
Seeks to support healthcare professionals through sharing information and resources, promoting learning opportunities, advocacy and research opportunities.
PatchSA welcomes any families, caregivers and child-caring professionals to join the network.
Help us help children with non-curable illnesses, and their families, to have the best quality life possible.
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PatchSA has been busy behind the scenes, and it’s time for us to give feedback on what we have been up to, and what we have planned for the rest of 2015.
PatchSA, under the guidance of Dr Michelle Meiring is facilitating the development of a national paediatric palliative care strategy for South Africa.read more
Paediatric Teaching and Training Centre, Dr Carlos Gianantonia of the Argentinean Society of Paediatrics.
Building on the success of the first ICPCN conference in Mumbai, India (February 2014), the ICPCN is delighted to bring you the 2nd ICPCN Conference: Children’s Palliative Care – NOW!
The conference aims to bring together people from around the world and from all professions working with children with life-threatening and life-limiting conditions and encourage the exchange of knowledge, new and innovative ideas, research and experiences between them. With a line up of world class keynote and plenary speakers, the conference programme promises…View Event
PatchSA is really excited to share our documentary " Beginnings & Endings" with you!
This documentary explores the experiences of Cape Town based families and professionals involved in the care of neonates with a life-threatening or life-limiting conditions.
Caring for a baby with a life-limiting or life-threatening condition is challenging for parents and professionals alike. The journey starts at different points for each family and may follow a unique path with often unforeseen obstacles along the way. The sense of isolation and helplessness felt by many parents when their baby is first diagnosed with a life limiting condition can be reduced by the timely provision of palliative care services.
Many lessons can be learnt from the sharing of experiences and families who may find themselves in a similar situation may be better equipped to deal with the challenges that lie ahead. This video also aims to raise awareness amongst professionals of the needs of families of newborns diagnosed in the perinatal period with life-limiting or life-threatening conditions.
When a child is diagnosed with a serious or life-threatening condition, everything changes. Parents must not only face the difficult realization that their child is seriously ill and may be suffering, but may also feel overwhelmed by the lack of understanding of the complex and ongoing medical care that may be required, and the impact that it will have on their current lives as they know it.
Children’s Palliative care provides physical, emotional, and spiritual support to seriously sick children and their families. It is the holistic care of children with life threatening or life limiting conditions and their families that includes the care of the child’s body, mind and spirit. It is a multi-disciplinary approach that ideally involves a team of carers can range from doctors, nurses, social workers, psychologists, therapists, teachers and spiritual leaders who provide flexible and co-ordinated support to affected children and their families.
Palliative care helps prevent and relieve pain and suffering while also easing stress, anxiety and fear associated with these conditions. Palliative care is a long-term, co-ordinated approach to enhance the quality of life of the affected child and his or her family. It can and should be offered from the time of diagnosis, throughout the course of the illness, and if curative treatment fails, at the time of death and then into the bereavement period.
The focus of children’s palliative care is to ensure the best quality of life possible while the child is alive and, when the times comes, to help the child die well and without pain. It prepares the child and the family for the end of life, supports them through this difficult time and continues to offer care to the family during the period of bereavement.
Any child with a life-threatening or life-limiting illness can benefit from palliative care, either to treat symptoms of the illness, such as pain or shortness of breath, or to ease the side effects of treatment, such as fatigue or nausea. Neonatal and perinatal palliative care can also be provided to assist parents who find out at the birth or know before the birth of their child that it has a life limiting condition.
Psycho-social teams can help children deal with any fears or anxieties they may have about their illness, dying and the impact it will have on their families. Appropriate spiritual support is offered to both the child and family when this is requested.
Timely and culturally sensitive psycho-social support for the family, including grandparents and siblings, helps to reduce levels of anxiety or stress. This results in families feeling less overwhelmed by the difficult decisions that they may need to make. The more preparation and support a family receives, the more quality time they have to spend with their child.
Bereavement support aims to assist parents and siblings to integrate the loss of a child into the rebuilding of their lives in a meaningful and compassionate way.
Children die from a far broader range of conditions than do adults. Many conditions are rare, some of them are familial; some are malignant cancers, some are HIV related illnesses and others are neurodegenerative diseases, congenital and chromosomal anomalies.
It is useful to think of these conditions in four groups:
Children’s palliative care can be offered in hospitals, in community health centres, in custom built hospices and in the child’s own home. Unfortunately in South Africa there are very few facilities and trained caregivers available and most children who require palliative care in South Africa are not getting it.
According to a 2013 UNICEF/ICPCN research report, an estimated 801 155 children needed paediatric palliative care in South Africa in 2012, and of them 304 441 needed specialised palliative care. Only 14 501 children received any palliative care, which equates to less than 6%.
There is a huge need to improve access to palliative care in South Africa. Children’s palliative care needs to be integrated into our health care system and healthcare workers and caregivers need to be trained to meet the backlog.
The International Children’s Palliative Care Network (ICPCN) and PatchSA welcomed the landmark resolution that was unanimously passed on the 23 May 2014 at the 67th session of the World Health Assembly (#WHA67) in Geneva, Switzerland. This resolution encourages all member states to take a greater interest in palliative care, including palliative care for children.
The key functions of the World Health Assembly (WHA) held each year in Geneva, Switzerland, is to determine policies of the World Health Organization (WHO), to appoint the Director-General, to supervise financial policies and review and approve the proposed programme budget.
In 2014, for the first time ever, the WHA has passed a landmark resolution on palliative care calling on all member states to:
Leaders within the global palliative care community are optimistic that this resolution will initiate the development of structured standards and guidelines for palliative care, including palliative care for children, as set by the World Health Organization.
PATCHSA feels that this resolution will strengthen both local and national advocacy efforts for the development of children’s palliative care services. It not only signals that palliative care for all ages should be taken seriously but also calls upon countries to include palliative care in their healthcare budgets
PatchSA plans to improve the quality of paediatric palliative care in South Africa through improved access to information, providing training to healthcare professionals and carers, supporting research in the field and advocating for the development of services.
Please send an email to info@patchSA.org if you require additional information.
We ensure that the right of every child with a life-threatening or life limiting condition to access quality palliative care in South Africa is met.
We mobilise and support a sustainable network of individuals, organisations, professionals and caregivers to ensure that all children and families facing life-threatening and life-limiting conditions receive holistic and culturally appropriate palliative care from diagnosis to bereavement.
Michelle is a Paediatrician by profession with a passion for Palliative Care for children. She co-founded Bigshoes in 2002. She is the Paediatric Palliative Care Consultant for Red Cross War Memorial Children’s and Sarah Fox Convalescent hospitals in Cape Town. She convenes the Postgraduate Diploma in Palliative medicine at the University of Cape Town and is an active child health advocate.
Joan is also a board member of the Worldwide Palliative Care Alliance; and the Elizabeth Kubler-Ross Foundation, a member of the UN Social Protection , Care and Support Working Group and the European Association of Palliative Care Children's Steering Group as well as on the editorial Board of Progress in Palliative Care and Management committee of E-Hospice.
Annanda has a MA in Social Work (Play therapy). She is currently the Palliative Care Development Officer in the Western Cape for the Hospice Pallaitive Care Association of South Africa (HPCA). Annanda was responsible for managing the paediatric palliative care programmes for HPCA in the Western, Northern and Eastern Cape.
Sue is currently the International Information Officer for the ICPCN. She has a wealth of experience in writing, editing and publication of books ranging from children’s story books, training materials and tools, to text books on palliative care. She is currently the editor of the International Children’s edition of EHospice.
Cindy is a mother who lost her child to a brain tumour in 2010. Cindy is keen to help PatchSA access support needed for the families, parents and caregivers to enable them, together with the healthcare professionals, provide the best care so that children with life-limiting and life-threatening conditions can have the best quality of life possible.