Author Archives: Sue

Deadline approaching for True Colours Trust Small Grants for Children’s Palliative Care administered through APCA

The Trustees of the True Colours Trust have set aside funds towards a small grants programme for hospices and palliative care providers across Africa to support the development of palliative care. All work supported by this programme must adhere to the WHO definition of palliative care (

For eligibility, application requirements and guidelines please click hereKindly note that the application submission deadline is 01st March 2018.

Should you require additional support or information while developing the proposals you can contact the Small Grants Officer at APCA by telephone +256 312 264978 or email at: email hidden; JavaScript is required or email hidden; JavaScript is required

The role of palliative care when caring for children with cancer

For the first 22 months of his life Ayanda Khumalo was a normal child, living with his mother and grandmother near Durban, South Africa. Ayanda’s mother noticed an unusual swelling in his abdomen. She took Ayanda to the local district hospital where he was diagnosed with a rare form of cancer called Rhabdomyosarcoma.

The next 12 months were a tumultuous time for Ayanda and his family consisting of countless hospital visits, chemotherapy and radiotherapy sessions. Doctors were hopeful that the treatment would work but soon after Ayanda’s 3rd birthday they found that the cancer had spread to other parts of his body, and his parents were told that ‘nothing more could be done’ for their son. Confused and devastated they were sent home with a very sick child and a bottle of Paracetamol.

Global statistics

Globally there are more than 300 000 children diagnosed with cancer each year. Like Ayanda, approximately 80 percent of these children live in low-middle income countries where more than 80 percent die of the disease.

With Ayanda back home, his condition soon deteriorated. Feeling desperate, his mother took him back to the hospital at which time they were referred to Dr Julia Ambler, a paediatric palliative care doctor in Durban and co-founder of Umduduzi, Hospice Care for Children. When Dr Ambler first saw Ayanda, he was very sick and experiencing a lot of uncontrolled pain. The Umduduzi team immediately set about controlling his symptoms, including pain, and providing holistic care to not only Ayanda, but to his entire family. Ayanda’s parents were consulted and involved in decision making around his care and treatment and with the appropriate support, Ayanda was able to die in the comfort of his home with his pain fully controlled.

“In palliative care, there is always something we can do,” says Tracey Brand, Director and co-founder of Umduduzi, Hospice Care for Children. “Being part of these children’s journeys is a privilege that no words can describe,”  she adds.

International Childhood Cancer Day

International Childhood Cancer Day is an annual awareness day celebrated on 15 February to raise awareness of childhood cancer, and to express support for children with cancer, the survivors and their families. Stronger children’s palliative care has been identified as an essential aspect of best care for children and adolescents with cancer.

As a leading international voice in advocating for the human right of children to receive the expert and compassionate care that palliative care provides, ICPCN is standing together with thousands across the global to emphasize the important role of palliative care in childhood cancer.

ICPCN’s Chief Executive, Professor Julia Downing, says, “This years theme – Advancing cure, transforming care, instilling hope – captures the importance of not only seeking a cure, but ensuring that care is transformed, and that children have access to palliative care as needed. There is never nothing more that we can do, but even when cure is not possible, we can instil hope through the provision of quality palliative care services, promoting quality of life, and addressing the concerns of the children and their families.

This International Childhood Cancer Day, let us remember that whilst we strive for a cure, the importance of quality care, such as palliative care, is vital in the ongoing continuum of care for children with cancer – so lets do all that we can to instil hope both through a cure and quality care.”

Click here to find out how you can be involved in International Childhood Cancer Day.

Time is running out to register at Early Bird Rates for the 3rd ICPCN Conference

You have only 19 days left to register at the very low Early Bird rates to attend the 3rd ICPCN Conference Inspiration, Innovation, Integrationto take place in Durban, South Africa from 30 May – 2 June 2018. 

The biennial conference, aimed at all members of the multidisciplinary team providing hospice and palliative care for neonates, toddlers, children and young adults, follows on the successes of the two previous ICPCN conferences held in Mumbai, India in 2014 and in Buenos Aires, Argentina in 2016. The conference programme will include plenary and abstract led concurrent sessions covering issues relevant to doctors, nurses, psychologists, researchers, counsellors, social workers, spiritual leaders, educators and therapists. Family members and those who volunteer within the field will also be catered for.

Pre-conference workshops

A full day of pre-conference workshops on 30 May will include a workshop on the effective management of pain in children, led by Dr Satbir Jassal (MBE), chair and editor of the Association for Paediatric Palliative Medicine (APPM) Master Formulary, as well as workshops on children’s palliative care in humanitarian situations, perinatal palliative care, difficult conversations in children’s palliative care and ethical considerations in children’s palliative care.

Continuing Professional Development (CPD) points will be allocated for the workshops and the conference by a South African academic institution.

Plenary speakers

Delegates can look forward to hearing from the following inspirational and internationally acclaimed speakers:

  • Dr MR Rajagopal  Founder-Chairman of Pallium India and recipient of the Human Rights Watch Alison Des Forges award for “Extraordinary activism in promoting the notion that denial of pain relief is a violation of human rights” and the person whose contribution to palliative care is featured in the film, “Hippocratic: 18 experiments in gently shaking the world”.
  • Dr Pat Carragher  Medical Director for Children’s Hospice Association Scotland (CHAS) and Chair of the Association of Paediatric Palliative Medicine and a Fellow of the Royal College of Paediatrics and Child Health.
  • Sister Frances Dominica OBE  founder of Helen and Douglas House, the very first children’s hospice.
  • Professor Julia Downing  Chief Executive of the ICPCN, Conference Chair and International Palliative Care Consultant.
  • Kelly du Plessis CEO and Founder of Rare Diseases South Africa and mother of a child diagnosed with Pompe disease.
  • Linda Ganca  Lecturer and convenor of the palliative care undergraduate programme at the University of Cape Town Faculty of Health Sciences.
  • Dr Satbir Jassal MBE Medical Director of Rainbows Children’s Hospice, author of the Rainbows Children’s Hospice Symptom Control Manual, co-author of the Oxford Handbook of Paediatric Palliative Medicine, chair and editor of the APPM Master Formulary.
  • Dr Ana Lacerda  Paediatric oncologist and coordinator of the Paediatric Palliative Care Task Forces at the Portuguese Association of Palliative Care and the Portuguese Paediatric Society and founding member of the Portuguese Observatory of Palliative Care.
  • Dr Neil McKerrow  Head: Paediatrics and Child Health for KwaZulu-Natal, South Africa.
  • Dr Michelle Meiring  Paediatrician,Founding Director of Paedspal, convenor of the post graduate diploma in Paediatric Palliative Medicine at University of Cape Town and chair of PatchSA.
  • Dr Regina Okhuysen-Cawley  Representative for Latin America on the ICPCN Board of Trustees and paediatrician affiliated with Texas Children’s Hospital.
  • Professor Danai Papadatou Author of the book In the Face of Death: Professionals who Care for the Dying and the Bereaved, Professor of Clinical Psychology at the School of Health Sciences at the National and Kapodistrian University of Athens, Greece, co-founder and president of “Merimna”, the only association in Greece providing paediatric palliative home care services and bereavement support for children, adolescents, families, schools and communities.
  • Huyaam Samuels  A young adult living with a rare medical condition and the Youth Ambassador for PatchSA who has advocated for access to  pallaitive care on global platforms through her work with the Worldwide Hospice Palliative Care Association (WHPCA)

Film premiere

The conference organising committee is delighted to announce that the conference will hold the premiere showing of the film Hippocratic:18 Experiments in Gently Shaking the World’ in South Africa. Dr MR Rajagopal will be present to introduce the acclaimed film about his work in palliative care as will filmmakers Mike and Sue Hill from Moonshine Agency.This compelling documentary will inspire all those passionate about the power of the human spirit, human rights and social justice and is essential viewing for anyone working in health care, medicine, nursing and public health.

Registration fees

Conference fees are set on a sliding scale related to profession and where delegates reside, according to their SADC membership and the World Bank country income classification. These are:

  • Low and Lower middle income countries and all SADC* countries
  • High and Upper middle income countries (excluding SADC countries)

* SADC (Southern African Development Community) countries which include: Angola, Botswana, DRC, Lesotho, Madagascar, Malawi, Mauritius, Mozambique, Namibia, Seychelles, South Africa, Swaziland, Tanzania, Zambia & Zimbabwe)

Enduring legacy

Conference Chair, Professor Julia Downing, says, “The ICPCN strongly believes that this conference will not only enlighten and inspire all those who attend, but will make a vital contribution to building a positive and enduring legacy of passionate healthcare workers and other professionals, empowered with the knowledge and skills to further develop children’s palliative care provision within South Africa and abroad.”


New publication highlights the history and work of the ICPCN

A paper, published this week in the Journal of Pain and Symptom Management (Volume 55, Issue 2 Pages S1-4 – S111) written by Prof Julia Downing, Joan Marston and Sue Boucher gives a detailed overview of the history and activities of the International Children’s Palliative Care Network that have led to the development of children’s pallaitive care services in many parts of the world where previously little or none existed. The paper forms part of a special issue, Palliative Care Development in Resource Limited Countries, edited by Mary Callaway and Kathy Foley.

Many detractors

The ICPCN began as a simple conversation between like-minded people from different countries, and a vision of a world where all children with life-limiting conditions and life-threatening illnesses would receive the palliative care they required. At first, there were many detractors and those within the greater palliative care community who felt that a separate organisation for children was not necessary. Today, even they recognise that without the ICPCN, palliative care for children would not have developed as far as it has.

ICPCN is a global network of individuals and organisations working together to reach the estimated 21 million children with life-limiting conditions and life-threatening illnesses. The drive to establish the ICPCN was born from the recognition of the gaps in service provision for children’s palliative care and the need to collaborate, network, and share resources.


Established in 2005 during a meeting in Seoul, South Korea, the ICPCN has developed over the years into an established network with a global membership. The history of the organisation is described, including some of the key events since its inception. Working in collaboration with others, ICPCN has five key focus areas represented by the acronym, CARES: Communication; Advocacy; Research; Education; and Strategic development, and is the only international charity working globally for the rights of children with palliative care needs.

In this paper, activities in these areas are discussed, along with the inter-connection between the five areas. Without the ICPCN, palliative care for children would not have developed as far as it has over the years and the organisation is committed to ongoing work in this area until all children requiring palliative care have access to quality services, wherever they are in the world.

Global membership

The ICPCN communications strategy has led to a truly global membership and information being shared across the world. Their  e-learning courses have been done by health care workers in 115 countries, and hundreds of health care professionals in 23 countries have received face-to-face training that has led to the development of new programmes for children. Partnerships have been formed to increase access and to support each other’s projects, research has led to new evidence to strengthen the case for children’s palliative care and a list of global priorities; and a number of journal articles have been written.

While the focus of the ICPCN is on low- and middle-income countries which have the greatest need, they continue to provide support to all who request assistance, including in high income countries where children are often left behind and neglected.

Access the paper here.

ICPCN’s Global Youth Ambassador’s personal story of palliative care impacts the leader of the World Health Organization

Last week, the Executive Board of the World Health Organisation (WHO) met in Geneva. The Worldwide Hospice Palliative Care Alliance (WHPCA) and International Association for Hospice and Palliative Care (IAHPC) amongst other organisations sent representatives to speak at the meeting.

Lucy Watts with ICPCN Chief Executive, Prof Julia Downing

Lucy Watts, along with two other palliative care direct stakeholders, Huyaam Samuels and Sharon Thompson, sent messages to be read by palliative care advocates attending the meeting.

Their words had a huge impact on all those present, and this shows how important it is to get our voices into global discussions about their healthcare.

In her own words below, Lucy Watts, Global Youth Ambassador for ICPCN and a Young Avenger for Together for Short Lives, writes about this incredible experience and her work advocating for access to palliative care for children and young adults.

Lucy’s story

I’m extremely privileged to work closely with two children’s palliative care charities; as an Ambassador and “Young Avenger” for Together for Short Lives in the United Kingdom as well as the International Children’s Palliative Care Network (ICPCN) as the Global Youth Ambassador. As a young adult of 24 years old, who has been receiving palliative care since her teenage years, I know the true benefit of palliative care for all, but especially for children and young people.

It is through my role as the Global Youth Ambassador for ICPCN that has opened my eyes to the world of palliative care and also healthcare generally outside the UK; in the UK we, although not perfect, have fantastic access to palliative care services, children’s hospices, we even have dedicated young adult hospice services, as well as access to medications we require such as opioid analgesics to manage distressing and debilitating symptoms and this is provided free at the point of use through our universal health coverage package, the National Health Service (NHS). Many other countries, especially lower and middle income countries, have little-to-no access to palliative care and also poor or no access to medications to relieve symptoms, especially opioid analgesics to relieve severe pain. This is especially true for children and young people. With an estimated 21 million children globally in need of palliative care and less than 1% of these children receiving that care, the statistics speak for themselves. Not only that, if it’s hard enough for adults in these countries to access medications such as opioid painkillers, it is almost impossible or children to be able to access pain relief in formulations suitable for children of their age.

I think about myself, I cannot take medications orally that absorb in my digestive system due to intestinal failure, which means my medications must come in other forms; my pain relief consists of a transdermal patch delivering a constant stream of the opioid Fentanyl into my body, as well as sublingual Fentanyl that absorbs under the tongue for any pain that breaks through. I also have access to intravenous Paracetamol (Acetaminophen). Many countries have little-to-no access to pain relief in child suitable formulations, and I think about the distress these children will be in, the agonising pain, and the anguish of their families of watching their child suffer, probably knowing something exists to help but that is not available in their country. However it’s not just about having paediatric formulations of such drugs but also the delivery route, especially at end of life when swallowing and absorption may be poor, thus liquid or non-oral formulations must also be available. I think of myself and what I’d do in another, less fortunate country; I’d be living with intolerable pain, unimaginable suffering and have no quality of life, for myself or my family. I am truly blessed to live in the UK.

WHO Executive Board

Last week, it was the World Health Organisation (WHO) Executive Board. The Worldwide Hospice Palliative Care Alliance (WHPCA) and International Association for Hospice and Palliative Care (IAHPC) amongst other organisations sent speakers to the Executive Board. I, along with two other palliative care direct stakeholders, Huyaam Samuels and Sharon Thompson, sent messages to be read by palliative care advocates attending the meeting. Our words had a huge impact on all those present, and this shows how important it is to get our voices into global discussions about our healthcare. It was fantastic to have the direct stakeholder voice included at such an important high-level meeting. Dr Tedros, the Director General of the WHO, picked up on something in my message and contacted me through Stephen Connor, who read my statement. Dr Tedros asked to speak with me directly. I was passed his details and planned out when best to call.

The phone call

That telephone call took place in the afternoon of Tuesday 30th January 2018. I felt it was a great success. I shared my story and the points important to me and other direct palliative care stakeholders to be met with gratitude, respect and kindness from Dr Tedros, who I could tell valued the opportunity to speak with me as much as I valued the opportunity to speak with him. I delved into my story, in brief, sharing who I am, my life with my illness, and the benefit of living in a country with universal health coverage in the form of our amazing National Health Service (NHS) which includes palliative care, having access to the medications such as opioid analgesics in forms that I’m able to absorb and having a state-funded care package that enables me to live at home. I explained how palliative care has transformed my life, giving me a far superior quality of life than anyone could’ve predicted and has also supported my mother and my sister and wider family. Dr Tedros appreciated the impact of palliative care not just for me, but for my mother too; formerly my mother was my full time carer until she developed a brain tumour and suffered a post-operative stroke and subsequently developed epilepsy, although she now provides some of my care again.

I also discussed how palliative care has enabled me to go on and be a voice for others, to work with charities and organisations and to become an advocate for people in similar situations to myself, for which I received an MBE in 2016, aged only 22, for services to young people with disabilities. He said I am a true leader and a champion for others, which I greatly appreciate, as well as expressing pride for my achievements. I always try to give a voice to the voiceless; part of this involves ensuring these 21 million unseen, unheard children needing palliative care have a voice and are visible in society. If they are not seen or heard, if no one fights for them, nothing will change. However, I, along with the International Children’s Palliative Care Network, the various children’s palliative care organisations across the world and all the fantastic children’s palliative care advocates, will fight to change this. We are the voice for the voiceless. 

Talking about my work led onto me discussing the international direct stakeholder network I set up, Palliative Care Voices, which gives direct palliative care stakeholders like myself, that is people with life-limiting conditions and their carers and families, the platform and opportunity to speak up and contribute to global palliative care advocacy. Dr Tedros said how important it is to hear from people with direct lived experience.

Palliative care must be part of universal health coverage

I explained how vital it is that people like myself have access to the palliative care we desperately need and will benefit from. My care is a shining example of the benefit of palliative care as part of a universal health coverage package, how well it works, the benefits and the cost savings to the government and I explained how it’s good to have a benchmark, a successful case study to work from and attempt to replicate. I understand that my experience is not common outside of the UK, and how scarce palliative care is around the world, particularly in lower and middle income countries. He agreed that palliative care must be a part of universal health coverage and that together we must work together to ensure it is included. We agreed that I am living proof of the success of universal health coverage packages and the inclusion of palliative care within these packages, and discussed how my story could be used as a case study to affect change at the highest level by showing the true benefit of universal health coverage and palliative care. Many countries don’t have the resources necessary to fund palliative care services, they have limited capability, there isn’t the understanding of the benefit and need for palliative care and there is often resistance from governments to institute universal health coverage packages at all, let alone ones that include palliative care services. This is an issue I am keen to tackle through my direct relationship with Dr Tedros.

Meeting to take place in London

Dr Tedros has asked that I meet with him next time he is in London. He wants to hear my story in more detail when we meet as well as to discuss how we can move this forward, in his words, ‘together’. He has said he would like to work together to improve the inclusion of palliative care in universal health coverage packages and to improve access to palliative care for people like myself. I appreciate his use of the word together; I truly believe he will work with me to create the necessary change.

At the meeting with Dr Tedros, I will ensure that children’s palliative care is not missed off the agenda. I will learn more about palliative care around the world through the palliative care direct stakeholder network I set up, Palliative Care Voices, as well as the guidance of professionals around the world, such as colleagues at the ICPCN, to truly understand the global children’s palliative care situation and be able to take that knowledge with me to Dr Tedros. I will share with him the shocking statistics, coming with those statistics the heart-wrenching suffering and struggles these 21 million children globally, and their parents and families, are experiencing due to a lack of access to palliative care and medications such as opioid analgesics. I come from the perspective of a person living with a life-limiting Illness, who suffers with excruciating pain, but who has access to pain relief, to antiemetics, to round the clock care, the support of a hospice and palliative care team and to all of this without facing financial burdens or even financial ruin. I’m living proof of the success of universal health coverage and palliative care; let us use my positive story to show the positive human and societal benefits of palliative care services, the need for universal health coverage packages, and the crucial need for access to medications, in both adult and child formulations and in different forms that are delivered and processed differently.

I live on a time limit

I’m 24 years old, and my life has been saved and enhanced by palliative care and I know I live on a time limit; in fact, I’ve exceeded the prognosis I was given. For whatever reasons, my words spoken at the Executive Board have touched Dr Tedros, so much so that he is keen to work together to improve access to palliative care and universal health coverage. He wants to work in partnership with me. I greatly appreciate his use of the word together, for all it implies, as this is a milestone where a direct stakeholder has secured personal contact and the opportunity for collaboration with the World Health Organisation (WHO) Director General himself. I will remain on top of this and ensure the meeting goes ahead and that Dr Tedros will act upon his words. For me, this is an opportunity to effect change at the very top level. He expressed a wish to work closely with me and to keep in touch and I intend to support Dr Tedros in his work, to advise and inform and to work with him towards a brighter future. Children’s palliative care is a cause very close to my heart and I am grateful for this opportunity’s that I can ensure the often forgotten topic of children’s palliative care is firmly on the agenda and on the radar of Dr Tedros. I will ensure that children with palliative care needs aren’t missed from this golden opportunity, that their voices are heard and their need for and in my opinion, right to palliative care is not forgotten.

Thank you, Dr Tedros. Here’s to a successful meeting when you are next here in London and to working together to get palliative care the recognition and investment it needs and to enlighten the top political leaders to see the human benefit of palliative care. I extend my eternal gratitude for speaking with me, treating me with such kindness and respect, for valuing my input and for any opportunity to work in partnership with you.

Follow the Child – a blog on anticipatory grief by Sacha Langton-Gilks

Sacha Langton-Gilks, author of the book Follow the Child: Planning and Having the Best End-of-Life care for Your Child has written a blog exclusively for ICPCN on her experience with her own anticipatory grief and on writing a book to give families guidance on planning for a ‘positive death’ for a child.

She writes:

I wish someone had explained to me that grief starts the instant your child is diagnosed with an incurable and life-shortening condition. You grieve for the life your child, and by extension the whole family, was supposed to have; it’s called anticipatory grief to distinguish it from grief after the death. The word ‘grief’ comes from an Old French verb meaning to burden, afflict, oppress and which in turn stems from a latin verb – to make heavy. Having experienced its sheer weight of pressure in my chest and stomach, I find this etymology fascinating. No one told me about this type of grief and therefore I accused myself of being borderline pathetic that I couldn’t keep a grip when our eldest child was in the last months of his life in the summer of 2012; it is so very hard to dismiss the mirage of their graduation, wedding, christenings and parties.

The other families had children with different diseases to cancer, live in different parts of the UK and had chosen different settings for care for their child at the end of their life. By an amazing stroke of luck my local hospice director also connected me to a mother in Florida, who is trying to get a network of specialist children’s palliative services organised in Florida where none exist.  It has been a huge privilege to get to know these mothers, my new friends, and we all consider this book a legacy for our dead children.

Read the blog