People who care

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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

PatchSA

Serving Communities, Families & Healthcare Professionals

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.

Latest PatchSA News

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.

National Children's Palliative Care Alliance

PatchSA, under the guidance of Dr Michelle Meiring is facilitating the development of a national paediatric palliative care strategy for South Africa.

read more

Upcoming Events

2nd ICPCN Conference : Children’s Palliative Care – NOW!

18 - 21 May 2016, 1244 Jerónimo Salguero St., Buenos Aires, Argentina

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…

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PatchSA Documentary

PatchSA is really excited to share our documentary " Beginnings & Endings" with you!

Beginnings & Endings from Julia Cain Wide Eye Video on Vimeo.

Beginnings & Endings

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.

  • Frequently Asked Questions

    WHAT is children’s palliative care?

    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.

    HOW do affected children and their families benefit from palliative care?

    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.

    WHICH conditions are appropriate for the provision of children’s palliative care?

    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:

    • Conditions where potentially curative treatments have failed, e.g. cancer
    • Conditions where death is inevitable. This could be immediately after birth, e.g. a congenital birth defect or in early adulthood e.g. cystic fibrosis.
    • Progressive conditions that are exclusively palliative e.g. Duchenne Muscular Dystrophy.
    • Irreversible but non-progressive disease which has result in an increased susceptibility to complications and premature death, e.g. cerebral palsy.

    WHERE are children with palliative care needs treated?

    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%.

    WHAT needs to be done to improve access to quality children’s palliative care?

    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:

    • Develop, strengthen and implement palliative care policies
    • Support palliative care initiatives including education and training, quality improvement and availability of medicines essential for the provision of palliative care
    • Provide support to caregivers

    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

    HOW is PatchSA planning to improve access to quality children’s palliative care?

    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.

    HOW can you help?

    • Recommend PatchSA to a parent or family who may need support
    • Promote improved access to quality palliative care for affected children in South Africa by increasing awareness of the need through your circle of family, friends and on Social Media
    • Get involved in our PATCH-SA community fundraising projects

    Do you NEED help?

    Please send an email to info@patchSA.org if you require additional information.

  • Our Vision

    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.

    Our Mission

    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.

    Vision
  • Our Objectives

    1. Information:

      To be a repository of information on children’s palliative care, resources and service providers in South Africa and to develop and promote local appropriate guidelines and standards for children’s palliative care.
    2. Education:

      To promote access to evidence-based education in children’s palliative care for professionals and parents.
    3. Advocacy:

      To be a strong collaborative voice for the right of the child to receive quality palliative care in South Africa.
    4. Research:

      To drive the research agenda for evidence-based children’s palliative care.
    5. Support:

      To promote the development of support systems for children, families and caregivers professional and lay caregivers.
  • Our History

    History
    • The development of a palliative care net-work for children in South Africa (SA) was the brain–child of Ms Joan Marston who is the current CEO of the International Children’s Palliative Care Network (ICPCN).
    • The intention to set up a children’s network was presented to the Palliative Care Society of South Africa (PCSSA) by Dr Michelle Meiring in October 2008.
    • In 2009 the Hospice Palliative Care Association (HPCA) with funding support from the Diana Princess of Wales Memorial Fund (DPOWMF) established a virtual resource centre for children’s palliative care (known as the Baobab PPC website) and also developed community based centres of excellence (known as Beacon centres)
    • By 2010 the Bigshoes foundation had developed hospital-based Paediatric palliative care teams in three provinces (Gauteng, KZN and Western Cape)
    • In February 2012 HPCA, ICPCN and the Bigshoes Foundation met to discuss how they could work together to extend the reach of quality children’s palliative care in SA and formed the South African Children’s Palliative Care Alliance.
    • One of the goals of the alliance was to set up the South African Children’s Palliative Care Network (SACPCN)
    • The SACPCN was officially launched at the 25th Anniversary conference of the HPCA in September 2012
    • The networks new name PATCH-SA will be officially presented on the 18th of September 2013 to the palliative care community at the joint HPCA and African Palliative Care Association (APCA) conference in JHB.
  • PatchSA Committee

    Michelle Meiring

    Professional Stream Leader

    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 Marston

    Chief Executive of the International Children's Palliative Care Network (ICPCN)

    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 Bothma

    Qualified social worker

    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 Boucher

    Qualified Foundation Phase teacher and author

    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 Illing

    Family Stream Leader

    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.