Author Archives: Sue

Calling on all palliative care advocates globally

We need your help!

As you may be aware, the World Health Organization is currently consulting with member states on its concept note for its 13th General Programme of Work 2019-2023. Unfortunately, within the current draft concept note, palliative care has been omitted as part of the essential spectrum of health services under the Universal Health Coverage definition. We need to get member states (e.g. your governments) to respond to this consultation noting the omission and including our suggested language.

The WHO consultation is available to view online at and submissions must be made online by 13th October 2017.

What would we like you to do?

Send a letter to your government contact to request that they include our suggested language in their submissions to WHO to address the omission of palliative care.

WHPCA, in consultation with ICPCN, have drafted a letter which you can amend and adapt for your situation to send to your key contact in the Ministry of Health. Member states have until the 13th October to respond to the concept note. The priority language we are suggesting is included within the text of the letter and we suggest that you do not amend this language. This is the most crucial action.

If you want to submit your own response, you can do so here.

The deadline is 13th October. We recommend if you do so that you utilise the language international and regional palliative care organisations have drafted in their submission which you can find here.

Please update email hidden; JavaScript is required with any information from member states that they intend to, or have, submitted our language.

New set of NICE standards describe high quality palliative care for babies, children and young people

The National Institute for Health and Care Excellence (NICE) have published standards on end of life care for infants, children and young people (from birth to 18 years) with a life-limiting condition describing high-quality care in priority areas for improvement. These standards are reviewed each year and updated if needed.

NICE quality standards undergo a rigorous process of development, consultation and review before publication. The standards are endorsed by NHS England and supported by numerous organisations within the United Kingdom, including the Royal College of General Practitioners, the Royal College of Nursing and the Royal College of Physicians.

These latest NICE Quality standards, entitled End of life care for infants, children and young people [QS160] comprise six quality statements, these being:

  1. Children with life-limiting conditions and their parents or carers should be involved in developing an advance care plan (ACP).
  2. Children should have a named medical specialist who leads and coordinates their care.
  3. Children and their parents or carers should be given information about emotional and psychological support, including how to access it.
  4. Children should be cared for by a multidisciplinary team that includes members of a specialist children’s palliative care team.
  5. Parents or carers of children approaching the end of life should be offered support for grief and loss, including after their child has died.
  6. Children approaching the end of life and being cared for at home should have 24-hour access to both children’s nursing care and advice from a consultant in children’s palliative care.

Together for Short Lives, the national coordinating body for children’s palliative care in the United Kingdom report on the guidelines on their website that as a registered NICE stakeholder providing a voice for their members on the draft standard they are “pleased that NICE has reflected the important role of community children’s nurses in the final version, in addition to the importance of advance care planning before a baby is born if a life-limiting condition is diagnosed during pregnancy.”

Speaking of the publication,Together for Short Lives Chief Executive, Barbara Gelb OBE, says, ” I wholeheartedly welcome the new quality standard, which is an important milestone in children’s palliative care. NICE have developed an ambitious set of quality statements which, if implemented in full, would transform the lives of more than 40,000 babies, children and young people with life-limiting and life-threatening conditions and their families..”

The NICE Guidelines can be downloaded free from the NICE website.

ICPCN and WHPCA calls for inclusion of palliative care in WHO NCD document

The Worldwide Hospice Palliative Care Alliance and the International Children’s Palliative Care Network have submitted a response to the WHO online consultation on the draft outcome document for Montevideo Roadmap 2018-2030 on NCDs as a Sustainable Development Priority.

The main concern noted in the submission is the absence of any language on palliative care within the draft outcome document. WHPCA and ICPCN note that this is not in line with the WHA resolution 67.19 on palliative care or the Global Action Plan on the Prevention and Control of NCDs.

They suggested the following additions to the language to address the omission:


3. bis We are concerned with the lack of access to pain relief and palliative care services for NCDs throughout the world.

Operational Paragraph

8. We will strengthen, as necessary, essential population level, people-centred public health functions and institutions to effectively prevent, control, treat and palliate NCDs to promote mental health and overall wellbeing.

Also signing on to the submission are:

  • African Palliative Care Association
  • Asociación Latinoamericana de Cuidados Paliativos
  • Asia Pacific Hospice Palliative Care Network
  • Canadian Hospice Palliative Care Association
  • Hospice Ethiopia
  • Kenyan Hospices and Palliative Care Association
  • Hospice Palliative Care Association of South Africa
  • Hospice Palliative Care Association of Zimbabwe (HOSPAZ).

You can view the WHPCA/ICPCN submission on the WHPCA website.

ICPCN’s Chief Exec receives award recognising her contribution to pallaitive care in Uganda

Prof Julia Downing receives an award from the Hon. Sarah Achieng Opendi

Last night at the PCAU (Palliative Care Association of Uganda) Conference being held at the Speke Resort in Kampala, ICPCN’s Chief Executive, Professor Julia Downing, was presented with an award in recognition of her personal contribution to the development of palliative care within Uganda.

The award was presented to Prof Downing by the Hon. Sarah Achieng Opendi, Minister of State for Primary Health Care in Uganda.

In her speech at the conference, the Hon. Sarah Achieng Opendi spoke about the growth and development of palliative care and how PCAU had collaborated with the Ministry of Health to initiate and scale up the provision of palliative care in the country. She said, “Palliative care is now an important component of health care services at all levels of health care service provision in the country. Currently, 69 out of 112 districts offer palliative care services, and it is spread across government facilities and non-governmental organisations.”

Prof Downing, presently the Chief Executive of ICPCN, and an honorary lecturer in Palliative Care at Uganda’s Makerere University, is an experienced palliative care nurse, educationalist and researcher with a PhD evaluating palliative care training in rural Uganda.

In the past she held the position of DIrector of the Mildmay International Study Centre in Kampala from 2001 to 2006 after which she was employed as the Deputy Executive Director of the African Palliative Care Association (APCA) in Kampala from 2006 to 2011. In this position she was responsible for the development of a BSc in palliative care at Makerere University and Hospice Africa Uganda.

During her time at APCA, she worked at the national, regional and at international levels with regards to advocacy for palliative care for both children and adults as well as on the development and implementation of appropriate palliative care policy.

Professor Downing was made Vice President of PCAU in 2007 as well as a member of the Inaugural Board of Directors for the organisation. She has chaired and co-chaired numerous conferences for PCAU, including the present one.

Speaking after the event, Prof Downing said that the award came as a completely unexpected but welcome surprise and she was thrilled to receive it.

The Board of Trustees, the staff and members of ICPCN join together in congratulating Prof Downing on this very well deserved award.

ICPCN trains 22 professionals to assess and control pain in children

Participants and trainers at the three day workshop on pain assessment and control held at Mildmay Uganda

A three day workshop from 14 – 16 August, hosted by Mildmay Uganda and led by the International Children’s Palliative Care Network (ICPCN) provided training for medical professionals on the assessment and control of pain in children.

Attended by 22 doctors, nurses, medical officers and one laboratory technician, the workshop covered the role of palliative care in the care of children with life limiting and life threatening illnesses and the importance of recognising, assessing and competently controlling children’s pain.

The training was facilitated by Dr Jane Nakaweesi and David Kavuma of Mildmay Uganda and Prof Julia Downing and Sue Boucher from ICPCN and included sessions on:

  • The work of the ICPCN
  • The work of Mildmay, including their diploma on paediatric palliative care
  • What is palliative care for children
  • Introduction to pain control in children
  • Non pharmacological pain control in children
  • Pharmacological pain control in children
  • Tools for measuring and assessing pain in children
  • The effects of pain and illness on childhood development
  • Communication with children and families
  • Resources available  for medical professionals treating children in pain

The participants became enthusiastically involved and showed genuine interest in the topics covered. Some commented that in their professional training there was far too little attention paid to how to treat pain in children and also not enough training provided on the development of good communication skills. They rated the workshop highly and have given a commitment to remain linked to the ICPCN in order to learn more about children’s pallaitive care and keep up to date with the latest developments in the compassionate care of children needing palliative care and pain control.

“ICPCN is committed to improving the lives of children in countries around the world through our continuing face to face and online education of those who care for them. We hope that we will be able to replicate this workshop in other parts of the world,” said ICPCN Chief Executive, Prof Julia Downing.

Publication of first Norwegian textbook on palliative care for children

Natasha Pedersen (centre) presents copies of the translated textbook to Minister Bent Hoie (left) and Kari Kjonaas Kjos, chair of the Standing Committee on Health and Care Services

An estimated 4000 children and young people are living in Norway with health conditions that are life-shortening or life-threatening — and the number is rising. The Norwegian Association for Children’s Palliative Care (Foreningen for Barnepalliasjon – FFB ) is the leading non-profit organisation in the Nordic region, working for children’s palliative care and that speaks out for all children and young people who are expected to have short lives. Together with everyone who provides care and support to these children and families, we are here to help them have as fulfilling lives as possible and the very best care at the end of life. We can’t change the diagnosis, but we can help children and families make the most of their time together. The organisation is also supporting all the professionals across Norway. By working together with professionals, we provide a strong and unified voice, and help by contributing knowledge and relevant information and by providing courses and lectures in children’s palliative care. Children with life-limiting and life-threatening diseases and their families have many and complex needs and need services from a wide range of professionals. Children’s Palliative Care is a new field in Norway, which is reflected in the fact that there are few courses in the field and very limited literature available in Norwegian.

The Norwegian Association for Children’s Palliative Care received funding from The Norwegian Directorate of Health in 2015 for the translation of the “Oxford Textbook of Palliative Care for Children”. By translating this book, we have provided a foundation and easy access to the most relevant information on children’s palliative care for all Norwegians who want to learn more.

In the Norwegian language, the book is entitled: “The foundation of Children’s Palliative care”. It has 512 pages and 40 chapters that provide a broad introduction to key topics and issues in the field. The book provides knowledge and discusses the medical, psychological, practical and spiritual issues that arise in the care of children with life-threatening and life-limiting illnesses and their families. The book deals with the physical treatment of symptoms, communication techniques and mental issues such as feelings of guilt and isolation. The authors of the book are among the world’s foremost in their field.

The Norwegian Association for Children’s Palliative Care entered into a partnership with the municipal publishing agency for the translation and publication of the book. After an intense year of work, the book was published in October 2016. In December 2016, Natasha Pedersen from FFB and editor Ingunn Berling Fridheim and chief editor Bjørn Simonsen from the publishing agency met with the Ministry of Health and Care Services. Natasha Pedersen emphasised that seriously ill children challenge us in the most fundamental way as humans, both emotionally and cognitively.

“For many of these children and young people, time is what they have the least of. Therefore, they rely on being met with the best knowledge and practice we have to offer,” says Pedersen.  She describes the book as providing the minimum knowledge needed for those who work with this group of patients.

Bjørn Simonsen described the demanding work process needed to translate the book, but also said that this has largely been a Con Amore (with love) project for all those within the editorial and association.

The minister, Kjos and Pedersen agreed that competence is what matters most in order to provide the best quality of life for these children. In conclusion, the Minister gave thanks for the important task they have completed and expressed his hope that all those who work with children with life-threatening and life-threatening conditions who would benefit from palliative care, would read the book from the first page to the last.

The book is also now included in several educational courses as a required book and can be bought through the organisation and found in all bookshops in Norway.