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, 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.

Patch is a registered non-profit organisation. NPO no: 124-201

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

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About us

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 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 promote access to evidence-based education in children’s palliative care for professionals and parents;
  • 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.

Our History

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

 

  • 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.

What we do

Patch is a national network that focuses on supporting the provision of palliative care to an estimated 800,000 children living in South Africa with a life-limiting condition, and their families.

We do this in the following ways:

  • Support:

    We work to ensure the voice of the child and family informs all activities of our network. We also promote care for health care providers and caregivers providing day to day care to these children.

  • Advocacy:

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

  • Information:

    We provide a comprehensive source of information on children’s palliative care and service providers within our borders.  We are developing locally appropriate guidelines and standards for children’s palliative care.

  •  Education:

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

  • Research:

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

Our Committee

Dr Michelle Meiring

Professional Stream Leader and Chairperson of PatchSA

Dr 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.

Joan Marston

ICPCN Global Ambassador and Vice Chair of  PatchSA

Joan 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.

Aimee Kinsley

Treasurer of  PatchSA

Aimee 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.

Lyn Croote

Executive Director

Lyn 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.

Melissa Platt

Family Stream Leader and Co-Founder of Footprints4Sam

Melissa 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.

Busi Nkosi

Professional Nurse and Advocate for Children’s Palliative Care

Busi 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.

Dr Jan du Plessis

Lecturer/Specialist Paediatric Oncology/Palliative Care

Dr Jan du Plessis is a Lecturer at the University of the Free State in Bloemfontein and is a Specialist in Paediatric Oncology and Paediatric Palliative Care.

Dr Mehnaaz Ally

Medical Officer in Paediatric Palliative Care

Dr Mehnaaz 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.

Zodwa Sithole

Professional Nurse and Palliative Care Advocate

Zodwa has worked in the health sector in various disciples including general nursing, midwifery, community health and palliative care. She gained valuable experience in various private, government and community institutions and has worked in environments with limited resources, illiteracy, abject poverty and general deprivation, hence covering a diverse content of first and third world care. She is formally trained in general nursing, Midwifery; Primary Health Care; Nursing Administration and Education; Community Health Care and Palliative Care. She holds a B. Cur degree and a master’s degree in Nursing. Zodwa has participated in numerous national and international conferences. She has managed to advocate for the integration of Palliative Care in the caring of inmates living with life threatening illnesses in the South African prisons; advocated for Palliative Care with Traditional Healers resulting in the development of a Palliative Care curriculum for Traditional Healers. She coordinated the development of Alliance for Access to Palliative Care – a group of individuals who are not working for Palliative Care but assist in advocating for Palliative Care.

Dr Samantha Govender

Paediatrician

Dr 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

Tracy Rawlins

PatchSA Training Coordinator

Professional 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 5yrs. 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 decided to study palliative care and completed the Short Course in PC for professional nurses (SCPNC) at South Coast Hospice and realized she had the passion for teaching and empowering caregivers with knowledge and skills so completed her post grad diploma in nursing education through Potchefstroom university. She worked for HPCA as their travelling tutor and facilitated the SCPNC distance programme in Mpumalanga for 3yrs and in 2016  coordinated the SCPNC for HPCA nationally. With a partial bursary from HPCA she went on to study the Post Grad 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. Shease appointed at 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.

Sue Boucher

PatchSA Communications & Training Consultant

Sue Boucher is a qualified teacher, an author and an editor. She was appointed to the position of International Information Officer for the International Children’s Palliative Care Network (ICPCN) in December 2007 and left this position in 2019 as their Director of Communications.  During a teaching career spanning 30 years, she held the posts of teacher, Head of Department and Principal and a member of the school’s Management Committee and Governing Body.

She is a published author of 19 children’s story books and has co-authored and authored numerous 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 textbook on Children’s Palliative Care in Africa  published in 2009 and A Really Practical Handbook of Children’s Palliative Care in 2015. She has contributed to numerous papers and Journal Articles on Children’s Palliative Care and was the lead author of  The Role of Early Childhood Education in Paediatric Palliative Care. She is the mother of three adult children and lives in the beautiful Assagay Valley in KZN.

The PatchSA Youth Ambassador is Huyaam Samuels

Huyaam 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 via Professor Chris Scott (Paediatric Rheumatologist), chairperson of PatchSA and also CEO of Paedspal Paediatric Palliative Care, at the age of thirteen years old, that she found a doctor/specialist who were prepared to listen to her and believe that she was indeed suffering from chronic pain.

Huyaam was a patient of Dr Meiring for six years years and ended up becoming the PatchSA Youth Ambassador due to her commitment to palliative care and the burning desire to raise awareness of palliative care and be a voice for those suffering.

She loves training 6 times a week by doing Pilates and Yoga as well as hydrotherapy with Professor Romy Parker. All her workouts are specifically planned and written out due to her medical condition which needs critical thinking and a well-trained physiotherapist who will not give up on her. She is extremely dedicated in her workout regimes as it helps her continue her daily lifestyle and control pain.

Although one may not be 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 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 studying Psychology at the University of Cape Town.

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