Join us for a walk down memory lane in words and pictures as we look at some of the highlights and achievements of our organisation over the past decade.
History in the making
The development of a palliative care network dedicated to those who worked with children in South Africa originated from the Paediatric Sub Committee (known as PAESCO) of the Hospice Palliative Care Association of South Africa (HPCA) which was led by Joan Marston. 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 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 with a goal 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 in Cape Town.
The network’s new name, Palliative Treatment for Children South Africa (PatchSA), was officially presented on 18th September 2013 to the palliative care community at the joint HPCA and African Palliative Care Association (APCA) conference in Johannesburg.
2013: Official Launch of PatchSA at APCA/HPCA Conference
The organisation was first registered as a Voluntary Association with the Department of Social Development and received official NPO status from the Department of Social Development as Palliative Treatment for Children South Africa- to be known as PatchSA – and was launched with our new logos and strapline at the APCA/HPCA Conference held in Johannesburg from 17 – 20 September 2013. Our logos were designed by the marketing company Scarab Origination.

Photo of all the delegates at the APCA/HPCA Conference where PatchSA was officially launched with our new branding and strapline.

Our original logos and strapline
2014: New PatchSA Steering Committee meet in Cape Town
A PatchSA Steering Committee meeting was held at the HPCA Conference that took place at the Lagoon Beach Hotel in Cape Town from 16 – 18 September 2014. Members of the original Steering Committee included Dr Michelle Meiring (Chair), Joan Marston (Vice Chair), Cindy Illing (Secretary), Dr Julia Ambler, Tracey Brand (Treasurer), Annanda Bothma and Sue Boucher. Cindy Illing became involved with PatchSA after the loss of her daughter, Robyn, to cancer and motivated strongly for PatchSA to be a conduit for family support while simultaneously creating an information and support network for South Africans working in the field of children’s palliative care. All work done for PatchSA was done on a voluntary basis with Cindy making sure to keep everyone connected and to raise funds.

PatchSA Steering Group from left to right: Cindy Illing, Dr Michelle Meiring, Joan Marston, Dr Julia Ambler, Tracey Brand, Annanda Bothma & Sue Boucher
2015: National Palliative Care Strategy Meeting
PatchSA, under the guidance of Dr Michelle Meiring, was involved in the development of a national paediatric palliative care strategy for South Africa. An initial strategic pre-planning session took place in Pretoria in May 2015. The founding alliance members were PatchSA, HPCA, ICPCN, Umduduzi, University of Pretoria, Wits Palliative Care, Rare Diseases South Africa, and CHOC. The resulting policy document, The National Policy Framework and Strategy for Palliative Care was published in 2017.

PatchSA was represented by Dr Michelle Meiring and Petra Burger on the National Palliative Care Steering Committee

David Stonestreet and Jan Tukker raising funds by pedaling to raise funds for PatchSA at the 2015 ABSA Cape Epic
2016: PatchSA hires an Information Officer and appoints a Youth Ambassador
PatchSA developed and published a survey to map existing services offering children’s palliative care in South Africa. Hospices and organisations all around the country were contacted and asked to fill in a survey so we could assess how much palliative care for children was available to the estimated 800,000 children who needed to receive it. As we found then and as is the case still today, the need still far exceeds the availability of palliative care provided for children. We continue to do our best to provide accurate mapping of children’s palliative care services providers in South Africa which can be found on this website. In June of 2016 Mrs Fiona McLennan became PatchSA’s first employee when she was employed to work part time as our Information Officer. An important component of her work was to start recruiting members and to circulate the mapping survey.
October 2016 also saw the appointment of Huyaam Samuels as the PatchSA Youth Ambassador. Huyaam has a rare, chronic condition that causes her constant pain, dislocations or subluxations and she requires daily medication. Her journey was not an easy one, with her pain being dismissed by doctors and her condition not being fully understood. It was only when, at the age of thirteen, Huyaam met Dr Michelle Meiring, chairperson of PatchSA and CEO of Paedspal, she found a someone who was prepared to listen to her and believe that she was suffering. Huyaam was Dr Meiring’s patient for six 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. She went on to become a global ambassador for palliative care and made videos and written messages for HPCA, for the Worldwide Hospice Palliative Care Alliance, for the World Health Organization and conducted many TV and radio interviews. She is now a University of Cape Town graduate with an honours degree and continues to advocate for benefits of palliative care for people of all ages.

Boldly promoting PatchSA, Dr Michelle Meiring and Fiona McLennan with newly appointed Youth Ambassador, Huyaam Samuels

A survey was created to map children’s palliative care services across the country
2017: Raising awareness and raising funds
In 2017 PatchSA increased our efforts to raise awareness of our work through our website, social media sites and through participation in the annual Hats On 4 Children’s Palliative Care Day (#HatsOn4CPC) in October. Financially PatchSA was struggling and at one stage had just R5336.36 in the bank. A decision was made to reach out to the Discovery Fund for funding to publish a book, in collaboration with Bettercare, on children’s palliative care in South Africa and to roll out training across 4 provinces being KZN, Gauteng, Western Cape and Free State. The Steering Committee also decided to offer paid membership to belong to the organisation.
Our Youth Ambassador, Huyaam Samuels, encouraged her school to participate in #HatsOn4CPC Day and also visited some patients in the community.

Huyaam Samuels with staff and pupils from her school raise awareness of children’s palliative care by wearing a hat

A home visit to remind us that improving the quality of life of children and their families is at the centre of all the work we do
2018: Partnered with ICPCN for International Conference
The International Children’s Palliative Care Network (ICPCN) held its third international conference on children’s palliative care in Durban, South Africa, from May 30 2018 to 2 June 2018. The conference, with the theme Inspiration, Innovation and Integration brought together 250 participants from 41 countries and was held in conjunction with local partners Umduduzi Hospice Care for Children, Palliative Treatment for Children South Africa (Patch SA) and the Hospice and Palliative Care Association of South Africa. Additional people were added to our Steering Committee this year and PatchSA received its first tranche of funding from Discovery to publish a book on children’s palliative care in South Africa and to develop a training curriculum based on the book. Tracy Rawlins, a professional nurse educator, was employed to coordinate the writing of the book and the roll out of training across 4 provinces. Our Steering Group grew and members now included Busi Nkosi, Dr Jan du Plessis (the first man on the committee), Melissa Williams-Platt (co-founder of Footprints4Sam) Lyn Croote, Petra Burger and Dr Mehnaaz Ally.

Pictured at the conference. Back row from left to right: Sue Boucher, Joan Marston, Michelle Meiring, Tracey Brand, Julia Ambler, Fiona McLennan, Jan du Plessis and Sister Francis Dominica (Founder of the first Children’s Hospice in the UK). Front: Huyaam Samuels, Melissa Williams-Platt, Tracy Rawlins & Mehnaaz Ally.

At a meeting held on 24 August 2018 in the Paedspal offices in Rondebosch, a group of PatchSA Steering Group and staff members met with Prof Dave Woods from Bettercare to discuss the writing of a South African book/training manual on children’s palliative care. We took the opportunity to pose for a HatsOn4CPC photo. Back row from left to right: Prof Dave Woods (Bettercare editor), Melissa Williams-Platt, Dr Jan du Plessis, Lyn Croote, Dr Julia Ambler, Tracy Rawlins, Fiona McLelland, Tracey Brand Front row: Petra Burger, Dr Mehnaaz Ally, Dr Michelle Meiring, Sue Boucher, Huyaam Samuels, Joan Marston.
2019: National Stakeholders Meeting held
PatchSA organised an historic National Stakeholders Meeting for Children with Serious Illness in collaboration with The Children’s Task Team in March 2019 which led to The PatchSA 2019 Declaration of Children’s Right to Palliative Care
A high-level national stakeholders meeting that was held in Johannesburg, South Africa, on Monday 18 March 2019. The meeting highlighted the constitutional imperative to address the need for palliative care for children, provided information on the national palliative care policy and set goals to achieve better provision of children’s palliative care across the country. Key stakeholders in children’s health and welfare in government and the NGO sector attended the meeting convened by the Children’s Task Team, a sub-group of the Minister of Health’s Steering Committee on Palliative Care, and PatchSA. Speakers who addressed the meeting included KZN MEC for Health, Dr Sibongiseni Dhlomo, Dr Michelle Meiring, chair of the national children’s palliative care network – PatchSA, Huyaam Samuels, representing the voice of a person receiving palliative care, Mark Heywood, Executive Director of +Section27 an organisation seeking to achieve equality and social justice in South Africa and Dr Charmaine Blanchard. A comprehensive report on the meeting can be found.

The invitation to the National Stakeholders Meeting that was held in Braamfontein, Johannesburg
2020: Publication of our book on Children's Palliative Care
In 2020, with support and funding from Discovery and written by a team of experts in children’s palliative care, PatchSA published a book in collaboration with Bettercare titled Palliative Care for Children – A guide for improving the quality of life of patients and their families written for South Africa by a team of South African experts in children’s palliative care. This book 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. Bettercare materials are used widely by government and private hospitals, non-profit organisations and training institutions in South Africa and other countries. The book is dedicated to the memory of Samuel John Frederick Platt who was born on 9 April 2015 and died on 22 July 2016. A little boy who spent his entire life in ICU and never went home. Samuel is the son of the founders of Footprints 4 Sam, Fred and Melissa Platt. Melissa became a member of our Steering Committe in 2018.
A training curriculum was designed based on the information in the book and a pilot training was held at Knysna Sedgefield Hospice in March 2020. The 5-day training was led by Tracy Rawlins and Sue Boucher. While in Knysna, the first case of Covid-19 was identified in South Africa and no future face-to-face training was possible for the following 2 years.

The cover of the Bettercare/PatchSA book which was published in June of 2020

Tracy Rawlins and Sue Boucher at Knysna Sedgefield Hospice with the group of healthcare providers attending the first 5-day training on children’s palliative care based on our Bettercare Book

Staff from Knysna/Sedgefield Hospice excited to have their own copy of our book. Due to Covid, masks were worn by all.
2021: Name change and launch of Patch Academy
Development and launch of Patch Academy as a direct result of Covid-19. Unable to roll out in-person training based on the publication of the Bettercare Book in 2020, we were given permission by our funders to create an online learning platform. Patch Academy now has 12 courses related to children’s palliative care in 2021. This year we also made the decision to change our name to Palliative Care for Children South Africa and started the process to register PatchSA as a Non-Profit Company.

We made a small but significant change to our name!

Our Patch Academy was launched with 2 courses on 15 February 2021

Tracy Rawlins was asked to address the matric students at St Mary’s Catholic School in Kokstad to assist learners struggling with the challenges caused by Covid and the lockdown
PatchSA was involved in history being made in December 2021 when a group of palliative care experts from the country met in Gauteng to start the process of developing National Guidelines on Palliative Care with the support of the National Department of Health. For the first time in South Africa the National Department of Health gathered a group of experts in both adult and children’s palliative care in Gauteng to start the process of creating palliative care guidance and guidelines for healthcare providers.

In December 2021 members of PatchSA staff and Steering Committee participated in the first meeting held by the National Department of Health to discuss the development of Paediatric Palliative Care Guidelines
2022: Publication of our book on Perinatal Palliative Care
Further funding from Discovery allowed the development and publication of our book: Perinatal Palliative Care: A guide to supporting families when a baby is at high risk of dying before or shortly after birth in 2022. We held an online webinar on 29 November as part of the launch of this new publication with presentations from Tracy Rawlins, Dr Julia Ambler, Dr Khakhu Mathivha and Dr Michelle Meiring.

The flyer for the Perinatal Palliative Care webinar and cover for the book

In August of this year Dr Michelle Meiring attended the APCA Conference in Uganda and presented APCA’s president, Dr Emmanuel Luyurika, with a copy of our first Bettercare Book. The Mildmay Uganda Clinic in Uganda purchased several copies to use for their CPC Diploma Course.

Dr Samantha Govender organised a PatchSA #HatsOn4CPC event on 14 October at the General Justice Gizenga Mpanza Hospital in KwaDukuza. From left to right: Dr Samantha Govender (PatchSA Vice Chair), Sue Boucher, Mr Lawrence Mandikiana (National Dept. of Health) and Alex Daniels (ICPCN)
2023: Partner in collaborative Palliative Care Conference in Cape Town
With Covid restrictions completely lifted, once again we were able to enjoy the energy of providing face-to-face training in children’s palliative care. In February of 2023 Tracy Rawlins and Sue Boucher were invited to train members of the multi-disciplinary team working at St Joseph’s Home for Chronically Ill Children in Cape Town over a period of two weeks.

Members of staff at St Joseph’s that underwent the 5-day training
On Tuesday 25 April 2023, PatchSA held a Strategic Planning meeting in Rondebosch, Cape Town which was attended by all members of the PatchSA Board, Staff and consultants. Present at the meeting and appearing in the photograph below were:
Top row from l to r: Mrs Margaret Louw (Bookkeeper), Dr Mehnaaz Ally, Busi Nkosi, Mrs Aimée Kinsley (Treasurer & Admin Support), Prof Jan du Plessis, Tracy Rawlins (Education& Training Manager), Mr Malcolm Kling (Funds Procurement Consultant)
Middle Row from l to r: Mrs Melissa Williams-Platt, Dr Michelle Meiring (Chair), Ms Sue Boucher (Programme & Communications Manager), Dr Kalr-Günter Technau
Front row from l to r: Dr Samantha Govender (Vice Chairperson) and Ms Thaaniyah Gydien
In this year the first collaborative conference on palliative care took place in Cape Town from 26 – 29 April 2023. Held at the spectacularly situated Vineyard Hotel in Newlands, the event was the result of a collaboration between three palliative care organisations, being PatchSA, the Association of Palliative Care Practitioners of South Africa (PALPRAC) and the Hospice Palliative Care Association (HPCA). The conference attracted more than 415 delegates and presenters participating in the 3-day event, some coming from as far afield as the USA and with several delegates from other African countries. Due to high interest levels and, building on its initial success, the conference is likely to become a regular event on the South African palliative care calendar. It was a first of its kind collaboration and the largest and most diverse gathering of people interested and working in palliative care from the NGO, public and private sectors ever seen in this country. The theme of the conference was “palliative care is everyone’s business” chosen to convey the important message that palliative care is not just the domain of specialist or dedicated NGOs, but something that can and should be implemented at all levels across all healthcare settings.
A video of some of the highlights from the 2023 Palliative Care Conference
Here’s to the next ten years!