People who care

supporting people who care

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

Serving Communities, Families & Healthcare Professionals

PatchSA welcomes any families, lay caregivers and child-caring professional including paediatricians, GPs, nurses, social workers, allied health practitioners, psychologists, teachers, clergy etc to join the network.

Community

Community

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
unique journeys.

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Healthcare

Healthcare

Seeks to support healthcare professionals through sharing information and resources, promoting learning opportunities, advocacy and research opportunities.

Join Us

PatchSA welcomes any families, caregivers and child-caring professionals to join the network.

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Support Us

Help us help children with non-curable illnesses, and their families, to have the best quality life possible.

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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.

Our Vision

To ensure the right of every child to access quality palliative care in South Africa.

Our Mission

To mobilise and support a sustainable network of individuals, organisations, professionals and caregivers to provide holistic and culturally appropriate palliative care for children and their families from diagnosis to bereavement.

Vision

Our Objectives

  1. Support:

    To ensure the voice of the child and family informs all activities of the network. To promote care for the caregiver.

  2. Advocacy:

    To be a strong collaborative voice for the right of children to receive quality palliative care.  To influence policy development in children’s palliative care.  To advocate for the integration of palliative care into all children’s services.

  3. Information:

    To be a source of information on children’s palliative care and service providers.  To develop and promote locally appropriate guidelines and standards for children’s palliative care.

  4.  Education:

    To provide evidence-based education in children’s palliative care for professionals and caregivers.

  5. Research:

    To signpost research relevant to children’s palliative care. To drive the research agenda for evidence-based children’s palliative care.

Our History

  • Our HistoryThe 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

Patch SA committee

Michelle Meiring

Professional Stream Leader

Dr Michelle Meiring is a Paediatrician with a special interest in Palliative Care and Chronic Pain management in children. Her interest in palliative care for children started when she was a registrar at Chris Hani Baragwanath hospital in Soweto at the height of the HIV/AIDS epidemic in the late 90’s. Determined to find better ways to support dying children and their families she started her career in the NGO sector in 2003 and partnered with Hospice Wits to set up 2 children’s hospices. She later became the director of a national NGO called Bigshoes that started hospital based paediatric palliative care services in public hospitals in Johannesburg, Durban and Cape Town. Despite the unfortunate closure of Bigshoes in 2012, the work of the NGO continues in all three provinces. In Cape Town, Dr Meiring founded a new NGO called Paedspal in 2015 that continues to provide a consultative paediatric palliative care service to public and private hospitals in the city. Paedspal also runs a newly established palliative care and chronic pain management clinic situated within Rondebosch Medical Centre across the road from the Red Cross War Memorial Children’s hospital.

A keen teacher, Dr Meiring has been involved in the development of paediatric palliative care courses through the Hospice Palliative Care Association of SA (HPCA) and convenes the paediatric elective of the Post-Graduate Diploma in Palliative Medicine at UCT. She also teaches the final year medical students and is involved in mentorship support with 6th years at UCT through the Christian Medical Fellowship (CMF). Dr Meiring has presented at several local and international conferences and has written a number of articles and book chapters on paediatric palliative care and pain management.

On the research front, Dr Meiring supervises students doing the MPhil in Palliative Medicine at UCT and in 2014 was awarded an Academic Scholarship from Discovery Health to enable her to conduct research in Paediatric Palliative Care toward fulfilment of a PHD.

Her hobbies include art and cake making. She is married to Dr Owen Porrill and has 2 children.

Joan Marston

Joan Marston

Global Ambassador for the International Children’s Palliative Care Network (ICPCN)

With a background in Nursing and Anthropology, Joan has worked in the field of palliative care for 27 years, with special focus on children’s hospice palliative care for 17 years when she founded the St Nicholas (now known as Sunflower ) Children’s in Bloemfontein in 1998. Previously the Executive Director of Naledi Hospice; the first Advocacy Officer of the Hospice Palliative Care Association of South Africa (HPCA) and their first Paediatric Palliative Care Manager.

A member of the WHO ad hoc Technical Advisory Group for Palliative Care ; a Board member of the Worldwide Hospice Palliative Care Alliance; the Elisabeth Kübler –Ross Foundation; EMMS International and the St Nicholas Children’s Hospice. Joan has contributed to a number of textbooks, Journal articles, research and development projects and conferences. She initiated and coordinates an international group looking at palliative care in humanitarian situations – PALCHE.

Married to Richard, with two adult children and two grandsons. With a special interest in spiritual care of children Joan is a Lay Minister at the Anglican Cathedral in Bloemfontein and a Lay Canon of Blackburn Cathedral in the UK.

Dr Julia Ambler

Dr Julia Ambler

MBChB (UCT), MRCGP (UK), Dipl. Pall. Med. (Cardiff), DCH (CMSA)

Dr Julia Ambler graduated from UCT with her MBChB in 1998. After her junior doctor years she spent 6 years in Oxford, UK returning home in early 2008. Whilst in the UK she trained and worked as a general practitioner and a children’s hospice doctor at Helen and Douglas Houses in Oxford. She is a member of the Royal College of GP’s in the UK and holds the Diploma in Paediatric Palliative Medicine from Cardiff University, Wales. She has also completed the Diploma in Child Health.

On returning to Durban, Julia continued her career in paediatric palliative care and general practice through the Bigshoes Foundation. When this non-profit organization closed in December 2012, she was instrumental in launching Umduduzi – Hospice Care for Children to continue the work. Through this NPO she consults in palliative care to state hospitals and hospice programs and trains health professionals in children’s palliative care. She is a sessional lecturer in the Department of Paediatrics, Nelson Mandela Medical School, UKZN.

Julia lives in Morningside with her partner, Tracey and two sons, Luke and Jack.

Sue Boucher

Sue Boucher

Director of Communications, teacher and author

Sue Boucher has a background in education as a teacher and school principal and is a published author of numerous children’s story books and educational text books. She was appointed to the position of International Information Officer for the International Children’s Palliative Care Network (ICPCN) in December 2007 and now serves this organisation as their Director of Communications.

Over the past eight years she has been a contributing author to numerous papers and publications on the topic of children’s palliative care. She has been involved in curriculum development for the ICPCN course: Introduction to Children’s Palliative Care, ICPCN Train the Trainers, ICPCN e-learning course on Childhood Development and Play and the HPCA course ‘Palliative Care for Traditional Healers’.

She presently sits on the board of Umduduzi – Hospice Care for Children in Durban, KwaZulu Natal.

In her present position she manages the ICPCN website and information service, is the editor for the International Children’s edition of ehospice, is responsible for the design, layout, printing and dissemination of all marketing and advocacy materials for ICPCN, assists in the organisation of ICPCN’s international conferences and provides training for the Introduction to Children’s Palliative Care and Train the Trainer courses.

Tracy Brand

Tracey Brand

Director / Paediatric Palliative Care Social Worker – Master of Social Work (Clinical Practice)
Petra Burger

Petra Burger

National Disability Mainstreaming Coordinator for HPCA

I am a person with a disability – paraplegia after a motor vehicle accident and a social worker by profession. Ever since I can remember, I always strived towards the improvement of quality of life for all vulnerable groups and children. My motor vehicle accident many years ago shaped and directed me towards my true passion and calling in life: the disability sector.

I have been active and employed in the disability sector for the last 18 years as Social worker, National Social development Manager, and since last year as the National Disability Mainstreaming Coordinator for HPCA.

My qualifications include a BA (SW), MBA, a Certificate in Social Entrepreneurship and a Certificate in the Design & Development of learning materials. (Working towards National Certificate Occupational Directed Education, Training and Development Practices). I am also a registered Assessor.

I am passionate about the empowerment of persons with disabilities to enjoy their lives to the fullest, through the equal participation and enablement towards optimum quality of life in which adults and children work, live and play.

Linda Ganca

Lecturer in Palliative Medicine – MPhil in Palliative Medicine

Mrs Linda Ganca has dual qualifications in both teaching and social work. She has over 30 years of experience in teaching and 16 years in Social Work. She holds an MPhil degree in Palliative Medicine. She is a dynamic lecturer who teaches and convenes the undergraduate palliative medicine programmes in the School of Public Health and Family Medicine at the University of Cape Town, South Africa. She teaches and co-facilitates in the palliative medicine postgraduate diploma course and supervises MPhil students. She has a passion for children and is the chairperson of Paedspal board, a public-private partnership programme that provides care and support for children living with life threatening and life limiting illnesses in Cape Town/Western Cape. She is also a Board member for ICPCN (International Children’s Palliative Care Network) Operations. Linda has keen interest in research with focus on qualitative methods.

Fiona McLennan

Fiona McLennan

BA LLB (UCT) Dip Therapeutic Aromatherapy, Dip Therapeutic Reflexology, PG Dip Palliative Medicine (UCT)

Fiona was admitted as an Attorney of the High Court of South Africa but later changed her career to complementary health. She is registered with the Allied Health Professions Council for both Therapeutic Aromatherapy and Therapeutic Reflexology, and has volunteered for several years at Red Cross War Memorial Children’s Hospital. She is now employed as the Aromatherapist at Paedspal Paediatric Palliative Care (part time) and is the Information Officer for PatchSA.

Fiona is married to Howard Pearce and they have two children, Caitlin and Angus.