Author Archives: Sue

In open letters, six women affected by serious illness urge decision makers to improve palliative care access

On World Hospice and Palliative Care Day this past Saturday 13 October, a report was published by the WHPCA containing open letters written by six extraordinary women calling upon national and international decision makers to improve access to palliative care. 

Six women affected by serious illness and palliative care have written open letters to national and international decision makers, urging them to take a leading role in advancing palliative care in their countries and internationally.

The letters were published in a report released on Saturday 13 October 2018, World Hospice and Palliative Care Day, by the Worldwide Hospice Palliative Care Alliance.

The report contains the open letters of six extraordinary women from Australia, Bangladesh, India, South Africa and the UK to decision makers who can influence access to palliative care.

These women are directly affected by palliative care through living with serious illness themselves or being parents of children with serious illnesses. They are working to make a difference to the lives of other adults and children who are affected.

They aim to encourage greater understanding of and commitment to ending avoidable suffering and making palliative care available for all as part of the move towards Universal Health Coverage.

Lucy Watts at her meeting with Dr Tedros in 2017.

Letter to Dr Tedros

Included in the report is a letter from ICPCN’s Global Youth Ambassador, Lucy Watts MBE, to Dr Tedros, Director General of the World Health Organization. She writes “… palliative care development is not getting the resources it needs either from national government health budgets, donor governments or international agencies. I hope in my lifetime to see that change happen especially given the evidence we now have from the Lancet Commission on Palliative Care and Pain Relief that an essential package of palliative care costs just $3 per capita in low and middle income countries. It is a moral imperative to stop avoidable suffering.”

Son’s immense suffering

In her letter to Mr Mohammed Nasim, Hon Minister of Health and Family Welfare in Bangladesh, Shayema Shafiz Sumy writes, “I lost my three year old son to cancer after witnessing his immense suffering for 8 months. My son, Ayman, was born on 19th April, 2012 and left us on 3rd January, 2016. Although he is no longer with us, we are continuously reminded of the pain and suffering he went through. Now, long after losing my son and after meeting many other families and children with experience of this journey of suffering, we know that even though we could not cure him, we could have alleviated much of his, and our, suffering if we had access to palliative care for children in Bangladesh.”

Lack of  services

61.5 million people worldwide experience serious health-related suffering which could be addressed by palliative care. Unfortunately, less than 10% of those that need palliative care can access it and 42% of the world’s countries have no palliative care services at all.

This is despite the fact that an essential package of palliative care in low- and middle-income countries costs about $3 per capita.

As countries move towards Universal Health Coverage, the voices of those affected by serious illness must be heard to ensure equitable coverage of palliative care for those who need it.

Download the report

You can download the report from The WHPCA website.

Palliative Care highlighted at World Cancer Congress in Kuala Lumpur

The UICC World Cancer Congress was held in Kuala Lumpur, Malaysia from 1 – 4 October 2018. The theme of the conference was Strengthen, Inspire, Deliver and encouraged effective knowledge transfer and best practices exchange amongst 3 500 cancer control and public health experts from 150 countries. It aimed to strengthen action and impact on national, regional and international scales through a multidisciplinary programme that feature the latest successful interventions in cancer prevention, diagnosis, treatment and care. The conference was run by the Union for International Cancer Control (UICC) and hosted by the National Cancer Society of Malaysia and held at the Kuala Lumpur Convention Centre.

Palliative Care a central theme

Palliative care was a theme central to the conference, with palliative care sessions being found throughout the programme including plenary sessions, workshops, oral presentations and poster presentations. The opening ceremony was chaired by Prof Sanchia Aranda the President of UICC with presentations by Dr Princess Nothemba Simelela, Assistant Director-General for Family, Women, Children and Adolescents at the WHO, Saunthari Somasundaram, Board member of UICC and the Minister of Health of Malaysia H.E. Dr Haji Dzulkefly Bin Ahmed.

The palliative care sessions got off to a good start with a session looking at global access to palliative care and pain relief. Key findings and recommendations of the Lancet Commission report were presented, including an overview of the report, the global burden of cancer-related suffering, an essential package of palliative cancer care, and whether palliative care can reduce healthcare costs and strengthen healthcare systems globally. The session was well attended and set the scene for ongoing palliative care discussions throughout the congress.

Later in the first day of the congress a workshop was organised by the Canadian Partnership Against Cancer and the Cicely Saunders Institute, King’s College London on the global use of person-cantered outcome measures to drive up quality in advanced cancer. Alongside presentations from South Africa and Jordan, ICPCN’s Chief Executive Prof Julia Downing, presented on the use of outcome data for paediatric and adult patients in low and middle income countries. This was then followed with details of an international collaboration for patient reported outcomes being coordinated by the Canadian Partnership Against Cancer (CPAC).

The African Palliative Care Association (APCA) chaired a session on accelerating the implementation of the World Health Assembly Resolutions on palliative care and cancer looking at the experience of Malaysia, Ghana, and Togo, along with that of the United Nations Office on Drugs and Crime and the Pain and Policy Research Group at the University of Wisconsin. Dr MR Rajagopal from Pallium India, talked about Palliative care as a human right for cancer patients in the plenary session on improving outcomes through healthcare systems.  Alongside specific sessions related to palliative care, palliative care was integrated into the discussions in a wide variety of sessions, workshops and Meet’in café sessions.

Well-known and influential leaders within the global palliative care community attended the UICC Congress in Kuala Lumpur from 1- 4 October 2018

ICPCN workshop

ICPCN hosted a workshop on improving quality of life for children with cancer and their families through the provision of quality palliative care. The workshop showcased the work of Hospis Malaysia in Kuala Lumpur and Rachel House in Jakarta, along with the work of ICPCN and of Eve Namisango in developing the children’s palliative outcome scale. It was also an opportunity to share ICPCN’s experience of developing and implementing the ICPCN Pain Assessment App and also to hear from our Global Ambassador Lucy Watts MBE on the importance of palliative care for all children and young people, giving examples of how palliative care has helped her and her family. The congress also gave the opportunity for participants to watch the Film Hippocratic: 18 Experiments in Gently Shaking the World – a feature length film exploring the life story of Dr MR Rajagopal.

The emphasis on palliative care at the conference – both for children and adults – was great. It was so encouraging to go to a conference where the value of palliative care was recognised and there was opportunities for discussion with our cancer colleagues. Congratulations go to the UICC for the conference and in particular we thank Dr Ednin Hamzah from Hospis Malaysia for all the work he did in promoting palliative care as a member for the scientific committee for the conference.

Countdown to #HatsOn4CPC on Friday 12 October

Wherever you’re headed one week from today on Friday, 12 October, make sure you wear a hat and lend your support to the #HatsOn4CPC initiative, raising awareness and funds for palliative care services offered to children with life-threatening or life-limiting illnesses.

Organised by ICPCN, #HatsOn4CPC both raises funds and creates awareness about the vital work being done by children’s hospices and palliative care services globally. We play a strategic role within the international health and palliative care arena, assisting countries and organisations to develop services and promote universal access to palliative care for children and their families.

Our Chief Executive calls upon everyone to wear a hat next Friday 12 October

Holistic care

Children’s palliative care (CPC) is holistic care that responds to the unique physical, emotional, social and spiritual needs of a child with a life-threatening or life-limiting illness, as well as the needs of the child’s family. Physiotherapy, occupational therapy, counselling, and social services are just some of the resources are offered. All assistance is tailored according to the needs of the child and family.

Some of the illnesses treated include:

– Cancer

– Congenital abnormalities

– Cystic fibrosis

– Severe Down’s Syndrome

– Organ failure

– Moderate to severe cerebral palsy

– Neuromuscular conditions

– HIV/AIDS

– Drug-resistant TB

– Severe malnutrition

– Metabolic conditions

– Rare diseases

The primary palliative concern is that the child’s pain and symptoms are relieved so that they are able to enjoy the best possible quality of life, for whatever period of time that may be. CPC also supports the child and family at the end of a child’s life with bereavement care provided for as long as it is needed. This specialised care is delivered by a dedicated team of people, many of whom wear many different hats – symbolically represented in the #HatsOn4CPC initiative.

Show your support

If you would like to support the 5th annual #HatsOn4CPC awareness campaign, just follow these 3 simple steps:

  1. Wear a hat to work, college or school on Friday, 12 October 2018.
  2. Take a selfie and post it to social media using #HatsOn4CPC and tag ‘ ICPCN’.
  3. Donate online at www.ICPCN.org or directly to your nearest children’s hospice or palliative care service.

Those motivated to do more to raise awareness for these children can encourage businesses and schools to get involved. Alternatively, get creative and host a ‘Mad Hatter’s Tea Party’ , or a Funky Hat Day and be sure to take photos and tag ICPCN using #HatsOn4CPC. You are encouraged to register your event online so it can be added to the ICPCN Map of Hats On Events.

To find out more, visit http://www.icpcn.org/hatson4cpc/ or contact ICPCN at email hidden; JavaScript is required

New WHO guide on integrating palliative care into paediatrics

The World Health Assembly has resolved that providing access to palliative care for children is “an ethical responsibility of health systems” and that integration of palliative care into public health-care systems is essential for achievement of the Sustainable Development Goal on universal health coverage (WHA 67.19). Yet access to paediatric palliative care and symptom relief remains rare in a number of countries. As a  result, millions of the world’s vulnerable children suffer unnecessarily each year.

Research has shown that the number of children, including neonates, infants, children, and adolescents up to 19 years of age, who need paediatric palliative care each year exceeds 21 million. However, palliative care for children has not been seen as a priority around the world.

Wide range

A wide range of childhood health problems can generate the need for palliative care and symptom relief including not only advanced noncommunicable disease and HIV/AIDS, but also severe prematurity, birth trauma, congenital anomalies, severe non-progressive disabilities such as paraplegia and quadriplegia, drug-resistant tuberculosis and injuries. Paediatric palliative care requires special knowledge and skills, and it is essential that all providers of primary health care for children and paediatric specialty care possess these competencies.

Practical guidance

This document is part of a series of WHO publications on palliative care. Their objective is not to provide clinical guidelines, but rather practical guidance on integrating palliative care and symptom relief into health care systems. The current publication is intended to assist anyone involved with planning, implementing, managing or assuring the quality of health care for children to integrate palliative care and symptom relief such that the quality of life of children and their families will be improved, health-care systems will be strengthened and cost-effective models of service provision will be implemented.  It also proposes an Essential Package of Palliative Care for Paediatrics and Symptom Relief and provides practical guidance on integrating PPC and pain relief into health care systems.

Relevance

Its contents are relevant to anyone involved with planning, implementing or managing PPC, including officials of United Nations organizations working with children, Ministry of Health officials, public health leaders, hospital managers, nongovernmental organizations, general and specialist paediatricians, surgeons, anaesthesiologists, primary care providers and palliative care providers. It has been developed by a working group of experts in PPC and symptom relief from around the world with extensive experience in working in low and middle income countries, including ICPCN’s Chief Executive, Professor Julia Downing.

The series of new WHO publications on palliative care, including this new guide on paediatrics can be accessed here.

The missing middle : Being a teen with cancer in South Africa – a new ICPCN blog by Cara Noble

Cara Noble is the National Relationship Manager for Service Delivery Programmes at the Cancer Association of South Africa (CANSA). where she has worked since 2011 as a social worker with children and families affected by cancer. She is passionate about helping families cope, adapt and heal through their journey of cancer.

In this latest ICPCN blog which honours the Childhood Cancer Awareness month of September, Cara writes of the difficulties faced by teenagers with cancer in her country.  A problem which is replicated in many other sub-Saharan African countries. Depending on the policy of various hospitals or paediatric oncologists, young South African teenagers are very often shunted off to the adult oncology wards and expected to behave and respond as adults.

In her blog, Cara calls these young people the ‘missing middle’ and calls upon health services providing treatment for this overlooked group to provide a suitable physical environment for them and to ensure they receive the age-appropriate social and emotional support for the challenges they face.

Read her blog here

Funky Hat Day at Hillcrest Primary School kicks off ICPCN #HatsOn4CPC campaign

ICPCN’s annual ‘Hats On 4 CPC’ day is just around the corner. On Friday 17 August, the pupils and staff of Hillcrest Primary School got to parade around school wearing their funkiest hats to raise awareness and funds for a great cause.

‘Hats On 4 Children’s Palliative Care’ Day is an annual global awareness raising event organised by the International Children’s Palliative Care Network (ICPCN) with the aim of drawing the world’s attention to the needs of children and families need hospice and palliative care.

For just a small donation to the ICPCN, pupils of Hillcrest Primary School in South Africa were allowed to come to school wearing a hat and by so doing, managed to raise an impressive R14 135,60 (Approx $900)

Gratefully accepting the cheque from Mrs Jenny Scott, Deputy Principal of Hillcrest Primary School and school leaders Kenan Smith (Deputy Leader), Liam Jansen Van Rensburg (Head Boy), Akhona Kunene (Deputy Leader), Zoë Padbury (Head Girl) and Georgia Finnis (Deputy Leader) was ICPCN’s Director of Communications, Sue Boucher.

Grateful

“The ICPCN is incredibly grateful to the staff and pupils of Hillcrest Primary School for showing how much they care for children and families whose lives have been affected and often shattered by the diagnosis of a life-threatening or incurable illness,” said Sue Boucher on receiving the cheque. “Palliative care helps to lift and lessen the enormous burden of pain and suffering from affected children and families. There is nothing that gives one more hope for the future than seeing children show their compassion for other children,” she added.

A Grade R class at Hillcrest Primary wearing funky hats for #HatsOn4CPC Day

Globally there are estimated to be over 21 million children with pallaitive care needs,  800,000 of which live in South Africa. These children live with complex and serious illnesses that are life threatening. It is estimated that less than 5% of these children and their families are being reached at this time. ‘Hats On 4 Children’s Palliative Care’ Day is on 12 October this year and the pupils of Hillcrest Primary School and the ICPCN wish to challenge every school in South Africa and around the globe to take part in this day by allowing their pupils to wear a hat to school for a small donation to the ICPCN or to a children’s palliative care service close to you. Individuals and businesses are also encouraged to participate in the day.

How can you become involved?

To learn how your school or business become involved in this wonderful cause, visit the Hats On page on the ICPCN website or contact Lorna Sithole at email hidden; JavaScript is required

HPS Staff and pupils showing their support for the work of ICPCN