People who care
supporting people who care
Palliative Care for Children South Africa (PatchSA) is an inclusive and compassionate network that aims to share specialised knowledge, tools, resources and opportunities to ensure the best possible care for children with life-threatening and life-limiting illnesses, and to provide support to healthcare professionals, families and lay caregivers.
PatchSA is a registered non-profit organisation. NPO no: 124-201
And a Public Benefit Organisation. PBO no: 930047744
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.
Join Us
Become a member. PatchSA welcomes family members, caregivers, child-caring and healthcare professionals to join the network.
Support Us
Help us help children with life-threatening and non-curable illnesses, and their families, to have the best quality life possible.
Subscribe
Receive our monthly email newsletters with the latest news and events relevant to children’s palliative care in South Africa.
About Us
O
ur 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 palliative care for children and their families from diagnosis to bereavement as an essential component of Universal Health Coverage.
Our Objectives
The Association is a Voluntary Association and non-profit organisation established for the following public benefit objectives:
- To create and sustain a vibrant network of individuals and organisations with an interest in children’s palliative care;
- 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;
- To be a strong collaborative voice for the right of the child to receive quality palliative care in South Africa;
- To drive the research agenda for evidence-based children’s palliative care; and
- To promote the development of support systems for children, families and professional and lay caregivers.
Download our Organisational Profile
What we do
PatchSA is a national network that focuses on supporting the provision of palliative care to an estimated 800,000 – 1,000,000 children living in South Africa with a life-limiting or life-threatening condition, and their families.
We do this in the following ways:
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Support:
We work to ensure the voice of the child and family informs all activities of our network. We also promote care and support for health care providers, parents and caregivers providing day to day care to children with palliative care needs.
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Advocacy:
We are a strong collaborative voice for the right of children to receive quality palliative care. We have an active Advocacy Committee that aims to influence policy development in children’s palliative care and to advocate for the integration of palliative care into all children’s services and relevant healthcare facilities.
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Information:
We are a recognised source of trusted information and resources on children’s palliative care in South Africa for health care practitioners and service providers within and beyond our borders. In 2020 we were thrilled to announce, in collaboration with Bettercare, the launch of our book: Palliative Care for Children – A guide for improving the quality of life of patients and their families which can be purchased from our website or read online on the Bettercare site.We are in the process of updating Clinical Guidelines and standards for children’s palliative care in South Africa.
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Education:
We provide evidence-based education in children’s palliative care for professionals and caregivers through the education branch of PatchSA, Patch Academy. Patch Academy is an online training platform created as an educational resource for all members of the multidisciplinary team who provide care to babies, toddlers, children and young adults with life-threatening and life-limiting illnesses and conditions and to their families. This could include but is not limited to paediatricians, doctors, nurses, social workers, pastors and other spiritual leaders, psychologists, physiotherapists, occupational therapists, art and music therapists. However, the certificate courses are open to anyone with a desire to know more about the practice and delivery of neonatal, perinatal and children’s palliative care. No previous qualification is required.
We also provide face-to-face training and workshops where possible.
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Research:
We contribute to, participate in and signpost research relevant to children’s palliative care in order to drive the research agenda for evidence-based children’s palliative care, particularly as it pertains to South Africa and other Low and Middle Income Countries.
Read Our Annual Reports
Our Steering Committee |
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Dr Michelle MeiringChairperson of PatchSADr Michelle Meiring is a Paediatrician with a special interest in Palliative Care and Chronic Pain Management. She is the Founding Director of Paedspal, an NGO that provides a paediatric palliative care service to public and private patients in Cape Town. Academically she convenes the Post-Graduate Diploma in Paediatric Palliative Medicine at UCT. An active advocate, Dr Meiring chairs PatchSA (the South African Children’s Palliative Care Network) and is engaged in policy making nationally. |
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Joan MarstonVice Chair of PatchSA and Global CPC AmbassadorJoan Marston is an ICPCN Global Ambassador for Children’s Palliative Care and Director of Education and Development for Sunflower Children’s Hospice in South Africa. Joan’s background is in nursing and social science and she has 24 years’ experience in palliative care for children – caring for children when the Executive Director of Bloemfontein Hospice and then founding the Sunflower Children’s Hospice in 1998 in Bloemfontein, South Africa. As the national paediatric development manager for the Hospice Palliative Care Association of South Africa, from 2007 – 2010 Joan and her team developed a strategy for a national network of services , promoting the considerable growth of the number of children’s palliative care services for children in South Africa . During that time, she was the Project Manager for a programme to develop children’s palliative care Beacon centres in Tanzania, Uganda and South Africa. She is married to Richard with two adult children and two grandsons living in the UK, and an active member of the Anglican Church. Joan is a Lay Minister in the Cathedral in Bloemfontein; and an Honorary Lay Canon of Blackburn Cathedral in Lancashire, England. |
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Aimee KinsleyTreasurer of PatchSAAimee obtained a Bachelor of Economics degree from Stellenbosch University and spent over 20 years working in the financial services industry specialising in the retirement fund space. Aimee has worked very closely with Fund trustees and also acted as Deputy Principal Officer for some retirement funds. She is a trustee of a body corporate as well as Treasurer and Public Officer of Patch SA. Aimee became associated with Palliative care when her younger teenage son, Jesse, was diagnosed as terminal. She spent many years working closely with a palliative team trying to make Jesse’s life as comfortable as possible with as much quality of life in challenging circumstances. After Jesse passed away, Aimee and her husband John moved to their farm in Robertson, where they breed horses and enjoy a quieter life. |
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Lyn CrooteExecutive Director of LambanoLyn Croote is the Executive Director of Lambano – a care and Paediatric Medical Step-down Facility/Hospice facility for children with life limiting and life threatening illnesses. |
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Melissa PlattPalliative Care Coach and Co-Founder of Footprints4SamMelissa is Fred’s wife, Sam’s Mum and a bereaved parent. She is also a palliative coach and a professional consultant now strategically focused on the paediatric healthcare sector. Melissa obtained a Post Graduate Diploma in Palliative Medicine at UCT (2017, graduating with distinction), a coaching qualification at the Centre of Coaching at UCT Business School (2015), and has a Bachelor of Arts Degree from Rhodes University (1993). Melissa is passionate about patient and child advocacy, and family-centred healthcare. She is a co-founder of Footprints4Sam. Melissa’s senior management experience has been in heading up teams in sales, marketing and business development for many years. Her consulting, coaching and advocacy work has inspired positive growth, resilience and change in the families, individuals and teams. She has worked with both in the healthcare environment, as well as in the commercial sector. |
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Busi NkosiProfessional Nurse and Advocate for Children’s Palliative CareBusi Nkosi was the Director of Advocacy for the International Children’s Palliative Care Network for 8 years. She is a nurse by profession and spent 20 years working in the South African Department of Health. She practiced as a Midwife for 3 years after qualifying as a midwife. She is also a Primary Health Care Nurse, Nurse Educator, Nurse Manager and Community Health Nurse. Passionate about working with children, she joined the field of children’s palliative care 18 years ago and spent 13 years in a children’s hospice. She worked for the International Children’s Palliative Care Network for 7 years advocating for children’s palliative care at global, regional and local levels. She has conducted training courses in children’s palliative care in various African countries. She has also presented papers on CPC at various international conferences, advocating for children’s palliative care. |
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Dr Jan du PlessisLecturer/Specialist Paediatric Oncology/Palliative CareDr Jan du Plessis is a paediatric oncologist at the Universitas Academic Hospital in Bloemfontein. He obtained his undergraduate degree (MBChB) at the University of the Free State in 1995. Thereafter, he completed his internship at the Bloemfontein Hospital Complex. His post graduate qualification as a general paediatrician (MMed Paed) was obtained from the University of the Free State in 2003. Dr Du Plessis then continued his studies and obtained his Certificate in Medical Oncology (Paediatrics) from the Colleges of Medicine (SA) in 2006. He then did a 2-year fellowship in Paediatric Haematology/Oncology and Bone Marrow Transplantation at the Sydney Children’s Hospital in Sydney, Australia. Dr du Plessis did the diploma in palliative care at the University of Cape Town in 2013 and then completed and obtained the MPhil in Palliative Medicine degree from the University of Cape Town in 2016. Currently, Dr Du Plessis acting as the head of Paediatric Oncology and is also a lecturer at the University of the Free State for both undergraduate and postgraduate medical students. He has a special interest in paediatric palliative care and haemophilia and presently works part time for the South Africa Non-Communicable Diseases Alliance. |
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Dr Mehnaaz AllyMedical Officer in Paediatric Palliative CareDr Mehnaaz Akbar Ally is a paediatric palliative care specialist in Gauteng. After completing her undergraduate degree in Medicine from Wits in 2005, she pursued post grad studies in Paediatrics, and then in Paediatric Palliative Care. She successfully completed the post grad diploma through UCT in 2017, with distinction, and consults both in private and public sectors in Gauteng. She heads up the WitsPal Paediatric Palliative Care team at the Chris Hani Baragwanath hospital in Soweto, and Lambano Sanctuary, which is the only paediatric step down unit / hospice faculty in South Africa. She is passionate about educating fellow healthcare workers about Paediatric pain and has a special interest in neonatal pain / palliation. Of late, she has also taken to running support groups and debriefing workshops for healthcare workers burdened by burnout and compassion fatigue. |
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Dr Samantha GovenderPaediatricianDr Samantha Govender qualified as a Paediatrician and also obtained a Diploma in Child Health from the College of Medicine South Africa. She also obtained her MMed from the University of KZN were she also completed her undergraduate degree in Medicine in 2007. Sam Govender is a Paediatrician based at General Justice Gizenga Mpanza Regional Hospital (previously known as Stanger) in the iLembe Region In KwaZulu Natal. She has a special interest in Paediatric Palliative care and has successfully completed the Post graduate Diploma in Paediatric Palliative Care through UCT in 2017. She is passionate about advocating for palliative care for her patients as well as educating health care workers about the benefits of palliative care with the aim of achieving a good quality of life for their patients. |
Our Staff |
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Tracy RawlinsEducation and Training ManagerProfessional nurse, educator and paediatric palliative care nurse specialist – Tracy is a professional nurse and midwife who has experience working in clinics, doctor’s surgeries, has run a private well baby clinic offering birth education classes as a school nurse and taught at a preschool for 5 years. During this time she undertook home care visits to those diagnosed with terminal illnesses, something she still does. In 2011, after being employed by the local hospice as the clinical manager, she completed the Short Course in Palliative Care for professional nurses (SCPNC) at South Coast Hospice and, realising she had a passion for teaching and empowering caregivers with knowledge and skills, completed her post graduate diploma in nursing education through Potchefstroom university. She worked for HPCA as their travelling tutor and facilitated the SCPNC distance programme in Mpumalanga for 3 years and in 2016 coordinated the SCPNC for HPCA nationally. With a partial bursary from HPCA she went on to study the Post Graduate Diploma in Palliative Medicine at UCT in 2017. Her experience in adult palliative care had laid a foundation of knowledge and skills but her heart and passion has always been in working with babies and children. She had identified a gap and need to offer more specialised care for babies and children with life limiting and life threatening conditions so chose to complete the paediatric sub-specialty of the diploma. She was appointed as the training coordinator at PatchSA in May 2018. Tracy lives with her husband on a farm in the KZN midlands and has four adult children. |
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Sue BoucherProject & Communications ManagerSue Boucher is a qualified school teacher, an author and has vast experience in digital design and communication. During a teaching career spanning 30 years, she held the posts of Head of Department and Principal and sat on school Management Committees and Governing Bodies. From 2008 she spent 11 years with the International Children’s Palliative Network as their Director of Communications and joined the staff of PatchSA in 2020. She is a published author of numerous children’s story books and has co-authored and authored teaching manuals, text books and teaching aids for use at Junior, Senior Primary and High School level. She wrote the HPCA handbook: Promoting Early Childhood Development within Paediatric Palliative Care, and was a contributing author to the Oxford Textbook on Children’s Palliative Care in Africa published in 2009 and A Really Practical Handbook of Children’s Palliative Care in 2015. She is a contributing author to the 3rd edition of the Oxford Textbook on Palliative Care for Children published in 2021. She is the mother of three adult children and lives in the beautiful Assagay Valley in KZN. |
Our PatchSA Youth Ambassador
Huyaam Samuels is our Youth Ambassador. She has herself battled with a lifelong condition that causes her constant pain, dislocations or subluxations due to her rare condition, which requires daily medication. Her journey was not an easy one, with her pain being dismissed by doctors and her condition not being fully understood. Imagine seeing doctors, specialists and being told there’s nothing wrong with you or nothing can be done or a direct quote from one of the specialists she saw “I chop people up and put them back together” and as a thirteen-year-old walking out of the room with that in her mind.
It was only when Huyaam met Dr Michelle Meiring, chairperson of PatchSA and CEO of Paedspal Paediatric Palliative Care, at the age of thirteen years old she found a doctor/specialist who was prepared to listen to her and believe that she was indeed suffering from chronic pain.
Huyaam was Dr Meiring’s patient for six years years and agreed to become the PatchSA Youth Ambassador due to her commitment to palliative care and a burning desire to raise awareness of palliative care and be a voice for those who were suffering.
Although one may not be able to see her condition or disability, it doesn’t make it any less real. She struggles with sleeping due to pain flare-ups, sometimes hospital admissions are necessary when flare ups become very bad and her whole-body spasms and her pain can be debilitating.
She is a past pupil of Livingstone High School in Claremont, Cape Town, and is in her final year of studying Psychology at the University of Cape Town.
At the launch of the South African Children’s Palliative Care Network in 2012 were from left to right, Joan Marston, Dr Kaliah Johnson, Dr Michelle Meiring and Cindy Illing
How it all began
- The development of a palliative care network for children in South Africa (SA) was the brainchild of Mrs Joan Marston who set up the Paediatric Sub Committee while working at the Hospice Palliative Care Association of South Africa (HPCA) and is the past Chief Executive and Global Ambassador 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 network’s new name, PatchSA, was 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 Johannesburg.
Original PatchSA Committee members met in Cape Town in September 2014
L to R: Cindy Illing, Dr Michelle Meiring, Joan Marston, Dr Julia Ambler, Tracey Brand, Annanda Bothma, and Sue Boucher
Our latest news
It’s a small change, but the meaning is everything! While our previous name name has served us well as it is one that is easy to remember, it was always felt that the word ‘Treatment’ did not accurately represent the work of hospices and those working with children who had palliative needs. Palliative care is more than just ‘treatment’ and is rather a philosophy of care that is holistic in nature. A unanimously carried proposal was made at the Annual General Meeting of PatchSA on 8 June 2021 to replace this word with the word ‘Care’ and thereby change the name of the organisation to Palliative Care for Children South Africa.
Palliative Care for Children – A PatchSA Guide
Purchase our recently published South African guide to Children’s Palliative Care. Palliative Care for Children: A guide for improving the quality of life of patients and their families is a useful and easy to read guide on the key elements of children’s palliative care written for doctors, nurses, social workers, psychologists, counsellors, spiritual leaders, teachers, therapists and anyone who interacts with and provides care for seriously ill children. The book can also be read for free online on the Bettercare website.
Learn online through the Patch Academy
Patch Academy is the education branch of PatchSA. It is an online learning platform created as an educational resource for all members of the multidisciplinary palliative care team providing care to babies, toddlers, children and young adults with life-threatening and life-limiting illnesses and conditions and to their families. All Patch Academy courses are CPD accredited through the Colleges of Medicine of South Africa (CMSA) with General and Ethics CPD points. Try our FREE course Introducing Children’s Palliative Care and earn 5 General CEU’s.
Take our latest online course on ethics and decision making in children’s palliative care
Why take the course?
“The PatchSA course on Ethics and Palliative Care is excellent. It takes the learner through all the important aspects of ethics, children’s rights, and the law regarding children, particularly in the context of palliative care. Apart from the core module contents, many links and additional resources provide interesting information and reading. Discussion of ethical dilemmas and actual cases provides additional interest and learning opportunities. Each section revises the core knowledge through quizzes and questions. The ethics novice and the experienced person will both gain from this module. I highly recommend it.”
Prof Sharon Kling MBChB DCH(SA), FCPaed, MMed, MPhil (Applied Ethics)
Consultant Paediatrician
Tygerberg Hospital
Part-time Lecturer
Centre for Medical Ethics and Law, University of Stellenbosch
Watch our video on neonatal palliative care
Beginnings and Endings – a PatchSA film on the importance of neonatal and perinatal palliative care
“Dying is difficult…. the beginning is not supposed to be the end.”
In this film, set in Cape Town and made for PatchSA, three families courageously share their experiences of losing a child, and living with a child with a life-limiting condition and the support provided to them by their palliative care team. The film takes a close look at the enormous value of neonatal palliative care.
Find a children’s palliative care provider in South Africa
There are several services in South Africa dedicated to providing palliative care to children but these are inadequate to meet the growing need for paediatric palliative care provision on all levels. A number of predominantly adult hospices also have staff equipped and trained to provide hospice and palliative care services to babies, toddlers, children and adolescents. We have conveniently mapped and listed the names of all services who can provide palliative care to children along with their relevant contact details.
Read our latest news
PatchSA is the only national organisation providing strategic support to healthcare professionals, allied healthcare practitioners and parents and lay caregivers in South Africa. Our diverse membership represents those who provide palliative care services to children around the country and we do our best to keep you up to date on what is happening in the field both within our borders and internationally. Read our latest news and stories and subscribe to our monthly newsletter if you want to be kept informed.
Consult the PatchSA Paediatric Palliative Care Formulary
Based on the (APPM) Association of Paediatric Palliative Care Medicine Master Formulary created by Dr Sat Jassal, the PatchSA Paediatric Palliative Care Formulary provides medical professionals with a list of medicines appropriate in providing paediatric palliative care in South Africa. Many of the medicines are prescribed “off-licence” and “on expert opinion” as it is difficult to do studies in this vulnerable population.
Join our grief support group: Patch People who Care
Access our COVID-19 Toolbox of Resources
In the midst of the coronavirus (COVID-19) pandemic, a concerning time for everyone, we are aware that parents of babies, children or young people with complex medical conditions and palliative care needs will have added concerns around safety and infection. We are also aware that the pandemic has left in its wake many thousands of children grieving the loss of a loved one.
We hope to answer some of your most pressing and frequently asked questions on this page and direct you to some helpful resources for more detailed information. If you have other questions, please feel free to send these to us on info@patchsa.org and we will do our best to respond and advise.