Author Archives: Sue

We’d like to tell your stories

ICPCN is looking for new personal narratives and images to use in the work we do to support and develop children’s palliative care internationally. These true stories and related photographs can be from family members, from children themselves and from those who provide care.

The strategic nature of our work means that our direct connection to individual children and families is often limited. That’s why we are reaching out to our members to assist us in telling the inspiring, the honest and the difficult stories of the children and families in your corner of the globe who are receiving and benefitting from palliative care services, whether this is in a clinic, in a children’s hospice or in the child’s own home.

We would particularly appreciate hearing about the positive impact of palliative care, but we are also very open to stories that tell of the difficulties you may have in accessing what you need to provide adequate care.  We would consider it a privilege to provide an international platform to share the highs and lows of this work. With the necessary permission forms signed, the stories and images may be used online via our social media sites, our websites and on the international children’s edition of ehospice and may also be used in our printed materials.

If you have a story to tell or if you are caring for a child and family who would be willing to share their stories and images with us, please email hidden; JavaScript is requiredand we will provide you with further information and permission forms.

We look forward to hearing from you!

New fact sheet on palliative care and Universal Health Coverage published

International hospice and palliative care organisations, including ICPCN, have published a fact sheet on Universal Health Coverage and palliative care.

The fact sheet is based on the findings of The Lancet Commission Report on Palliative Care and Pain Relief.

The report estimated that 61.5 million people experience serious health related suffering worldwide, and that an essential package of palliative care can be implemented in low and middle income countries for about $3 per capita.

The fact sheet is an essential tool for national level palliative care advocacy.

Universal Health Coverage (UHC) means that all people and communities can use the promotive, preventive, curative, rehabilitative and palliative health services they need, of sufficient quality to be effective, while also ensuring that the use of these services does not expose the user to financial hardship.

An essential package of palliative care should be included within national UHC packages because it:

  • alleviates suffering
  • is cost effective and affordable, and
  • supports those with some of the highest health needs, and those who are particularly vulnerable to catastrophic expenditure on health.

The fact sheet provides key recommendations on how to make this happen, including:

  • To promote equitable access, palliative care services must be universally available and free of charge.
  • Build public awareness and engagement in palliative care, and strengthen and enable the voice of people, particularly those directly affected by life-limiting conditions, to demand palliative care.
  • Pilot and support innovative multi-sectoral programmes to produce the necessary evidence to show how a publicly funded, essential palliative care package can be provided within primary care, and be free at the point of use under UHC.
  • Ensure palliative care is part of all training curricula for health and social care professionals and community health workers.
  • Build the evidence on what works, the impact of palliative care inclusion in UHC packages, its cost effectiveness and how to measure progress.
  • Include patients and families in all activities to achieve palliative care as part of UHC to reflect true and current needs of patients and their families.

You can download the Palliative Care and Universal Health Coverage Fact Sheet from our website.

Christian radio interview with our Chief Exec. Prof Julia Downing

Professor Julia Downing, ICPCN Chief Executive and Honourary Professor at Makerere University in Uganda

Premier Christian Radio in the UK has recently released a podcast featuring an interview with Professor Julia Downing, the Chief Executive of ICPCN.

Interviewed by Andy Peck from Premier Christian Radio for a programme calls ‘The Leadership File’, Prof Downing, who is also an Honourary Professor at Makerere University in Uganda, talks about how it came about that she went to work in palliative care and about how she came to move to Uganda where she worked full time for 17 years.

The interview covers information on the huge need for more children’s palliative care services and what ICPCN is doing to work towards better access to services. Prof Downing also talks about the need for better access to pain relief medications and the advocacy that needs to be done and is being done worldwide to improve awareness of these issues.

CLICK HERE to listen to the radio interview.

Founding Assembly and First National Symposium of the China Association for Life Care (CALC) Children’s Palliative Care and Family Health Care Professional Services Committee

President of CALC and distinguished guests at the Symposium in China held in May

Saturday 19th May 2018 saw the Founding Assembly and the First National Symposium of the China Association for Life Care (CALC) Children’s Palliative Care and Family Health Care Professional Services Committee at the Beijing Children’s Hospital.

As he opened the symposium and launched the committee Prof Wang Tianyou, Vice President of Beijing Children’s Hospital, heralded in a “new era” for children’s palliative care in China. Acknowledging the tremendous work that has been going on in the development of children’s Palliative Care through CALC, Butterfly House Children’s Hospice and the children’s palliative care teams in many of the children’s hospitals in China, he went on to say that the government recognises the need for children’s palliative care in China, that for many of the 4.5 million children in the country who need palliative care, access to services is limited and he hopes that in this “new era” children’s palliative care will be extended to all in need across China. The founding and awarding ceremony of the committee was overseen by Prof Wang Tianyou, Li Huairong (Secretary General of CALC), Lynda Gould MBE (CEO of Butterfly Children’s Hospices) and Prof Julia Downing (CEO the International Children’s Palliative Care Network).

Opening speeches were also delivered by leaders from the National Health Department and the Ministry of Civil Affairs. Ms Song Wenzhen from the State Department of the Women and Children’s Commission confirmed the government policy and actions to improve quality of life for families and recognised the role that palliative care for children plays in achieving that goal.

The National Symposium gave the opportunity to hear about the work on children’s palliative care that is going on within China. Prof Julia Downing, Chief Executive of ICPCN set the scene by talking about the state of children’s palliative care globally and policy development. Having addressed the definition of children’s palliative care, she went on to discuss the global need for children’s palliative care, setting it in the context of the World Health Assembly Resolution in 2014, Universal Health Coverage (UHC), the Lancet Commission report (2017) and the Sustainable Development Goals. Following on from this Paul Quilliam, CEO and Co-founder of Hummingbird House and ICPCN Board Member, shared the Hummingbird House experience of developing a children’s hospice service in Brisbane, Australia.

Lyn Gould, Founder of Butterfly Children’s Hospices

Individuals from services across China then went on to describe the services they were providing. These included Chen Xingjia,Liu Zhengchen New Sunshine Charity Foundation, Fang Yongjun, Children’s Hospital of Nanjing Medical University, Chen Jinzhi, Shanghai Children’s Medical Centre, Tan Lihong, Hunan Provincial Children’s Hospital, Fu Lili, Children’s Hospital affiliated to Fudan University and Dr Weng Yuxi u, Taiwan Social Working Department. Li Zhang spoke movingly of their commitment and the challenges to deliver support services for families from the Children’s Hospital affiliated to Suzhou University. Lynda Gould, CEO of Butterfly Children’s Hospice and Board Member of ICPCN, also shared her experiences of developing a children’s hospice in China, the need and motivation for the development of children’s palliative care in Changsha, China.

Participants were active in their discussions around the presentations, keen to learn what is happening in children’s palliative care in China and to share lessons learnt from each other. The need for support for carers such as social workers and nurses was acknowledged, with questions posed from a wide range of disciplines and provinces.

Prof Julia Downing, ICPCN Chief Executive

It was great to have a team from Brisbane, Australia, at the symposium, sharing their experience of developing and implementing children’s palliative care in different settings. Dr Anthony Herbert discussed the hospital model of children’s palliative care at Lady Cilento Children’s Hospital in Brisbane, identifying the components and roles of a hospital based palliative care programme, Helen Wilson then went on to discuss the role of Social Work in children’s palliative care, building on some of the discussion from the previous day. Maggie Leung looked at the role of therapies and psycho-social care, and finally Kelly Oldham discussed the children’s hospice model and the role of nurses within the hospice. The talks were inspirational and left the participants wondering how best they can implement children’s palliative care within their settings in China.

这篇文章有中文版。 (Read the article in Chinese)

Providing Palliative Care in a Humanitarian Crisis Situation: Using Community Health Workers in Rohingya Refugee Camps

In this post, Dr Megan Doherty and Mr Scott Gunn write about the important work being done to provide palliative care in the Rohingya Refugee camps in Bangladesh. 

The influx of over 900 000 Rohingya refugees from Myanmar into neighbouring Bangladesh poses many challenges to delivering humanitarian aid, and providing healthcare is one of the biggest hurdles currently faced. The majority of the healthcare sector’s response is focused on acute injuries and illnesses, and with very little focus on chronic or serious illnesses. In November 2017, a team from World Child Cancer and Fasiuddin Khan Research Foundation (FKRF, a local NGO) conducted a rapid situational analysis to assess the needs of these individuals, with a focus on their palliative care needs. We found that 58% of people with chronic illnesses were not able to access essential care required to manage their medical problems. We also found that 73% of people with chronic or life-threatening illnesses were not receiving the treatment necessary to alleviate their pain. Indeed, patients who could benefit from palliative care had been largely excluded from the health humanitarian response.

After these findings, under the leadership of Dr. Farzana Khan (President of FRKF), FRKF has implemented a pilot project community based solution for palliative care. The solution involves using trained community health workers to provide basic palliative care support, combined with a palliative care physician to develop treatment plans and provide medical oversight. Thus far, our team has supported more than 1000 patients with a variety of serious illnesses, including cancer, paralysis, cerebral palsy, tuberculosis, HIV, and other chronic diseases. Our team has developed a secure system to ensure that morphine and other essential symptom control medications are available for patients in their homes.

Palliative Care Assistants

These community health workers – called palliative care assistants (PCAs) –deliver palliative care to patients with chronic or life-threatening illnesses in their homes. The PCAs schedule regular visits to patients’ homes and are available by phone should a patient require more urgent help. The PCAs support patients by delivering medications, providing basic nursing care,  and monitoring symptoms. PCAs are supported by a palliative care physician who develops management plans for the patients and trains the PCAs to implement these plans.

Patients join the palliative care program through two main channels; the first is through health centre referrals. Our team conducted meetings with health centres and hospitals in the refugee camps to introduced this new palliative care service to these facilities and provide them with information about how to refer patients. Health facilities were very pleased to learn about our service, acknowledging the significant gap in the provision of care required for these types of patients. The second referral channel is through case finding by the PCAs. Since the PCAs are members of refugee community, they are often aware of those who are sick and who may need palliative care, or members of the community will approach the PCAs when someone becomes sick and may need palliative care.

Dr Farzana Khan and Dr Megan Doherty with palliative care assistants visit patients in the Cox’s Bazaar Refugee camp in Bangladesh

Using a community based approach to deliver palliative care may reduce pressure from the main health centres by supporting patients requiring palliative care to remain at home. Frequently, patients requiring palliative care make visit health centres where they end up being turned away due to lack of resources and knowledge about how to treat their condition. Community health workers such as PCAs are valuable tools in the Rohingya humanitarian crisis that allow the healthcare system to better serve the needs of patients.  After the success of this pilot project, a proposal for a comprehensive palliative care service from FKRF has been accepted by the World Health Organization as part of the Joint Response Plan for the Rohingya Refugee Crisis, recognizing the vital importance of this program. This means that FKRF requires increased financial support to implement a palliative care program which will provide palliative care coverage all of the Rohingya refugees and local host communities in the Cox’s Bazar district.

Calling all keyboard warriors! Comment on WHO Declaration on Primary Health Care by 22 July to include palliative care

The World Health Organization (WHO) is conducting a second consultation requesting input for the Declaration on Primary health Care to be approved at the Global Conference on Primary Health Care (25 – 26 October 2018). The purpose of this meeting is to renew government commitments to strengthening primary health care to achieve universal health coverage and the Sustainable Development Goals.

The first draft of the declaration did not define Universal Health Coverage, and contained no mention whatsoever of palliative care as an essential service within primary care. Despite several palliative care organisations commenting on this, the WHO Secretariat did not include these comments. 

Read the draft declaration here

As part of the global pallaitive care community, ICPCN asks members to help to change this by submitting as many comments as possible to the second consultation, which is only open until 22 July 2018.  The more comments requesting inclusion of palliative care the better. The International Association of Hospice and Palliative Care (IAHPC) has prepared a guide for organisations wishing to comment. This guide, which can be found at, is meant to be suggestive only and we ask that you put as many of the comments as possible into your own words.

The WHO website states, “We would like to hear from you. From patient to provider, from policy maker to educator – it doesn’t matter who you are or where you are from, primary health care is important to us all. The comment period will be open until 22 July at midnight CEST.”

We would be very grateful for your support!

Julia Downing
ICPCN Chief Executive