Author Archives: ICPCN

Cyclist raising funds for ICPCN

Please support Nikky Goozee who is taking part in the Prudential Ride London-Surrey 46 on Sunday 4th August in aid of the International Children’s Palliative Care Network (ICPCN). She will be cycling along a 46 mile route beginning at Queen Elizabeth Olympic Park in East London finishing at The Mall by Buckingham Palace. She will be joining thousands of other riders in completing the ride and raising money for charities such as ICPCN.

The International Children’s Palliative Care Network (ICPCN) is a global network of organisations and individuals and the only international charity dedicated to securing the right of the 20 million children worldwide living with incurable, life-shortening and life-threatening conditions to receive palliative care. ICPCN’s vision is that all children living with life-limiting or life-threatening conditions and their families will have seamless access to palliative care in order to alleviate serious health-related suffering and enhance their quality of life. We do this through Communication, Advocacy, Research, Education and Strategic Development.

Nikky is a retired GP and now supports people in need by working with various UK Charities and is looking forward to the challenge of riding the 46 miles to help improve the access to palliative care for children throughout the world, who presently have no help at the end of their lives.

Please support Nikky by donating via Virgin Money or PayPal or in order to support the ongoing development of children’s palliative care globally.

Thank You

ICPCN launches funding campaign to address unnecessary pain and suffering in children

Today, Tuesday 9 July,  ICPCN has launched a new Global Giving campaign Promoting Paediatric Pain Management focused on increasing awareness and education on assessment and management of children’s pain.     

We know that more than 21 million children in the world today live with a life-threatening or life-limiting illness or condition, most of which will result in the child experiencing unpleasant symptoms, including pain. Allowing anyone to experience unrelieved acute or chronic pain and suffering when the means exist to provide partial or complete relief is arguably one of the greatest violations of human rights. Even more distressing for us is knowing that millions of children needlessly suffer pain due to ignorance and lack of appropriate training and education.

Speaking of the urgent need for and value of this campaign, Prof Julia Downing, Chief Executive of ICPCN says: 

“No child should suffer pain that can be controlled. Children around the world are experiencing pain due to a variety of causes including a lack of education for those providing care, and a lack of skills to assess and manage pain. ICPCN is committed to the ongoing training and support of individuals working globally in palliative care to manage such pain and suffering. The use of our Pain App and elearning programmes is just one way that we are working together to overcome some of the challenges to children globally receiving appropriate and adequate pain relief.”

Why focus on pain assessment and management?

A recent blog written for ICPCN by Sophie Kieffer, an aid worker in Africa with a passion for children’s palliative care, documents how even within hospitals where pain medication is available, children are cruelly left to suffer excruciating pain. She writes:

This was my first time visiting the burn ward at a large hospital in Kenya. As I entered the room, I was overcome by the piercing sounds of crying children. From my babysitting days, I am used to two-year-old tantrums and playground mishaps. Here, however, sheer physical pain is the driving force behind the guttural cries.

I remember being in a paediatric cancer ward in Uganda and hearing a girl scream so loudly that I couldn’t hear my own thoughts. I asked the nurse what was causing her distress and she said the cancer had gone to the child’s brain. In the bed next to her was a silent little girl, the tears already come and gone. In an attempt to make logical sense of this, I started to compare which was worse: the loud cries or the silent ones. And I realized it didn’t really matter.

This is not acceptable and we urgently need you to partner with us to do everything possible to end this cruelty.

Pain is one of the major reasons for children presenting at health care facilities. Despite much work being done to dispel them over the past few years, there are still several myths that persist around children and pain, such as the myth that a child’s behaviour always reflects the intensity of their pain, or that doctors are skilled at measuring pain in children.

With appropriate training, health care professionals can be taught to control severe pain and unpleasant symptoms in children. Both pharmacological and non-pharmacological methods can be used and with the right knowledge and expertise it is entirely possible to eliminate a child’s pain in most cases or, at the very least, to minimise it to a bearable level.

Pain assessment 
The first and vital step in good pain management is to accurately assess and measure the frequency, type and level of pain the child may be experiencing. This thorough assessment informs the medical professional on what treatment is needed.

The ICPCN has developed the digital ICPCN Pain Assessment Tool for Children downloadable for free onto any smart phone via the iStore or Google Play store. This app allows a child, with the help of an adult when necessary, keep an accurate record of where their pain is located, how intense it is, the type of pain and whether anything relieves the pain. This information can be passed on to the medical professionals to help in assessing the efficacy of pain control measures.

Pain management 
The ICPCN provides a free online e-learning module on pain assessment and pain management in children, available in 7 languages. This course, endorsed by the University of South Wales can be accessed at 

The ICPCN also provides face-to-face training on children’s palliative care, which includes an intensive day-long training module on pain assessment and pain management. To date we have provided this face-to-face training to over 1,000 health care practitioners in 24 countries, mostly in the developing world.

How can you support our campaign?

This funding campaign aims to ramp up awareness and education on the need for proper assessment and expert management of children’s pain, encourage the downloading and use of the ICPCN Pain Assessment Tool for Children

There are 3 ways in which you can support this campaign:

Donate $10 or more

Please consider a donation to the campaign. We hope to reach our target of $10,000 within a year so any once off or monthly amount, starting from just $8 will be gratefully received. We hope to find 100 people willing to commit to a donation of $10 a month for 10 months to reach our target even sooner. You can donate here. 

Download the app

Please download the ICPCN Pain Assessment Tool for Children and encourage your patients and the parents of your patients to download the app and use it. We believe that this app can improve pain assessment and management and it is a free resource that we offer.

Do the course 

If you haven’t already done so, consider taking the free e-learning certificate course on Pain Assessment and Management for Children. All our courses are endorsed by the University of South Wales and available in several languages, including French, Spanish and Portuguese.

Theme announced for World Hospice and Palliative Care Day

On Saturday, October 12 2019, something extraordinary is going to happen.

People from around the world who have been impacted by a life-limiting illness — either personally or by supporting a loved one — will be making their voices heard, asking policy makers to pay attention to prioritize palliative care policies and services. Further, people who have been standing in solidarity with them — local leaders, volunteers, advocates, clinicians — will be volunteering their time to amplify this public message: Palliative Care: it’s “My Care, My Right.”

About the theme

The theme My Care, My Right aims to communicate that palliative care can be demanded by the public – and that, together, every person impacted by a life limiting illness can influence their policy makers to prioritize palliative care financing under Universal Health Coverage.

This year’s WHPCD 2019 comes on the heels of the UN High Level Meeting on Universal Health Coverage (UHC) on 23 September. Therefore, a key action for the campaign will be to call on governments to listen to people who need or access palliative care and support the inclusion of the essential package of palliative care in all national Universal Health Coverage (UHC) schemes.

The sub-theme of My Care, My Right will address the importance of mobilizing communities, particularly volunteers to ensure that patient’s right to care are supported. Specifically addressing the premise that if care is a patient’s right, how can UHC support carers to improve their well being under Sustainable Development Goal 3.8.

How to get involved
  1. Subscribe to the WHPCA’s newsletter for campaign updates and the launch of new campaign materials:
  2. Follow @worldhospiceday on Twitter and hashtags #mycaremyright and #whpcd19
  3. Keep an eye on the World Hospice and Palliative Care Day webpage for updates, materials and to register your World Hospice and Palliative Care Day event.
  4. To translate materials into your local language, please contact Shelley Enarson at email hidden; JavaScript is required.
What is World Hospice and Palliative Care Day?

World Hospice and Palliative Care Day is a unified day of action to celebrate and support hospice and palliative care around the world. Voices for Hospices is a wave of concerts taking place on World Hospice and Palliative Care Day every two years.

When does World Hospice and Palliative Care Day take place?

World Hospice and Palliative Care Day takes place on the second Saturday of October every year and a collaboration with the Voices for Hospices Choir takes place on the same date every two years.

What are the aims of World Hospice and Palliative Care Day?
  • To share our vision to increase the availability of hospice and palliative care throughout the world by creating opportunities to speak out about the issues
  • To raise awareness and understanding of the needs – medical, social, practical, spiritual – of people living with a life limiting illness and their families
  • To raise funds to support and develop hospice and palliative care services around the world.
Who organises World Hospice and Palliative Care Day?

World Hospice and Palliative Care Day is organised by a committee of the Worldwide Hospice Palliative Care Alliance, a network of hospice and palliative care national and regional organisations that support the development of hospice and palliative care worldwide.

Focusing on the small wins – a new ICPCN blog from Sophie Kieffer

This latest ICPCN blog from Sophie Kieffer is both heartbreaking and uplifting at the same time. Saddened and distraught by the pain and suffering of children she witnesses on her regular visits to a hospital in Kenya, she has learnt to appreciate the small wins when they come. 

Sophie is a passionate advocate for paediatric palliative care who has spent time visiting different successful paediatric palliative care programmes in Eastern and Southern Africa. She has also volunteered in similar work in South America, Nepal, and Israel. Sophie holds a Master’s degree in Global Health from Georgetown University in Washington, DC and presently works from her base in Kenya for an NGO supporting vulnerable populations in Somalia. 

She writes:

Focus on the small wins, I tell myself. The sleeping baby hugging the teddy bear you brought him. One patient pushing another in a wheelchair through the corridors. A nurse warmly greeting you with a hug at the door. Sneaking extra sweets into a patient’s hands. These are the moments that can be easily forgotten amidst the overarching sadness of a paediatric hospital ward with the smells, the cries, and the hollowed eyes.

I’m often asked how I can handle working in such an intense environment. “Wine and cheese” is my usual response! But it is really the focus on the small moments that keep me going. They have to be enough for now.

Especially for mornings like today. This was my first time visiting the burn ward at a large hospital in Kenya. As I entered the room, I was overcome by the piercing sounds of crying children. From my babysitting days, I am used to two-year-old tantrums and playground mishaps. Here, however, sheer physical pain is the driving force behind the guttural cries.

I remember being in a paediatric cancer ward in Uganda and hearing a girl scream so loudly that I couldn’t hear my own thoughts. I asked the nurse what was causing her distress and she said the cancer had gone to the child’s brain. In the bed next to her was a silent little girl, the tears already come and gone. In an attempt to make logical sense of this, I started to compare which was worse: the loud cries or the silent ones. And I realized it didn’t really matter.

Read the full blog here. 

My much anticipated visit to Helen & Douglas House

Busi Nkosi, Director of Advocacy for ICPCN, writes about her recent visit to Helen & Douglas House in Oxford, England.  It has always been a long-time dream of hers to visit the very first children’s hospice set up by Sister Frances Dominica in 1982.

Busi and Dr Emily Harop

Last week I was fortunate to be invited by the child psychiatry department of Oxford University to be a panellist in a meeting of the launch of the Lancet Series on communicating with children about their own or their parents life-limiting illness. Keen to fulfil my long-time dream, I visited Helen & Douglas House Children’s Hospice in Oxford. 

On a cold, rainy day last week I was warmly welcomed into the hospice by Dr Emily Harrop who kindly showed me around the entire hospice.

Helen House was founded by Sister Frances Dominica in 1982 as the first children’s hospice in the UK. It presently provides hospice and palliative care to children from birth up to the age of 19 years who have life threatening and life limiting illnesses.

Hospice teacher Louise O’Donnell

Coming from South Africa where the few children’s hospices provide mostly home based services, I was fascinated by all the equipment and staff available to care for the children. The staff members were smiling, warm and caring and showed such a genuine passion for their work. The first person I met was the hospice’s teacher, Louise O’Donnell, who said she found working with the children very rewarding.

The staff consists of 18 nurses, 1.7 doctors, including locum doctors with the ideal being two full time doctors. There is a counselling team, a teacher, a coordinator for young people and administrative staff.

A quarter of Helen House patients are children with cancer. Other children using the facilities have from neurological disorders, congenital anomalies, metabolic conditions, muscular dystrophy, organ failure and neurosurgical conditions, some of whom were involved in motor vehicle accidents.

Referrals & criteria for admission

Area for play and art therapy

Referrals come from hospitals, GPs and individuals averaging about 30 per year and they care for around 150 families each year. The criteria for admission includes children with brain injuries, anticipation of death, families who have experienced the death of a child and neonates with abnormalities. Emergency referrals can be accepted and admitted within a day. Care at Helen House is not only limited to sick children but their siblings and other family members are also supported.

Respite & home care

Respite care is a valuable service offered by the hospice and enables the family to receive short breaks from caring for their child while the hospice undertakes their often complex care. This care also extends to the home where the child remains in familiar surroundings.

Perinatal service

A perinatal service is also available, whereby parents who are pregnant with a child with congenital anomalies are supported in their decision making, and cared for throughout the pregnancy and birth if they choose to carry the pregnancy to term. They are also given counselling and compassionate care after delivery and when the child dies. A post bereavement service is also offered.

The building

Special bathing area

The inside of the building is very well designed for children with palliative care needs. Each child has a spacious well-equipped room with an adjustable bed.  There are large play areas decorated with children’s murals, assortment of toys and colourful flickering lights. What really fascinated me was the stimulation room and a special bath fitted with various gadgets. The walls are full of children’s photos and paintings. This is a facility which every community aspires to have if resources were available, I felt very envious.

I was given the opportunity to witness Dr Emily talking to a mother whose child was being admitted for symptom control. She listened with great patience to all the mother needed to say and then addressed each issue in detail until the mother felt satisfied and ready to leave the child. This type of attention is not common to find in other health facilities but palliative care.

So many children have passed through the doors of Helen House and their families have expressed sincere gratitude for the care they received. Such as Libby, Alexander’s mum who stated in their 2019 Newsletter, “Helen and Douglas House opened more than just its doors to us. They opened their hearts and we gained another family. They help us to make fantastic memories, while giving me the chance to be a Mummy and not a nurse. They give me some much needed comfort and also their time to enable me to recharge my batteries.”

I would like to thank Dr Emily and the wonderful staff for making me feel  so welcome. It was an honour to be your guest for the day. 

New Chair and Vice Chair for ICPCN Board of Trustees

Sabine Kraft (centre) hands over the reins of the ICPCN International Board of Trustees to Paul Quilliam (left) with Chief Exec, Prof Julia Downing, looking on 

The annual meeting of the ICPCN Board of Trustees took place on Wednesday 22 May in Berlin, Germany. On completion of her term of office, former Chair of the Board, Ms Sabine Kraft, was thanked sincerely for her service to the organisation as chair.

Founding member

Sabine is a founding member of ICPCN, a member of the original Steering Committee set up in 2005 and since May 2011 has been and remains a member of the ICPCN Board of Trustees. She served as Vice Chair for two years and as Chair since 2016. 

Sabine is a founding member of ICPCN, a member of the original Steering Committee set up in 2005 and since May 2011 has been and remains a member of the ICPCN Board of Trustees. She served as Vice Chair for two years and as Chair since 2016.

On her time in office, Sabine had this to say, “It was an absolute honour to me to be the chair of the ICPCN. I admire every family that has to live with the challenges of a very sick child and every care person who helps in these difficult times. If we achieved that even one more child received proper palliative care, then every effort was worthwhile.

The ICPCN is a small organisation with a huge task and wonderful and professional staff. It’s been a pleasure to work with each one, including the professional board members and with Julia as the CEO. She had to manage quite a few challenges and she surprised us many times with the successes she could achieve within such a short time. My appreciation also goes to Joan Marston as the initial CEO because without her ICPCN would be non-existent.

The financial strain that is ever present adds enormous pressure, but I believe that with events like ‚The children’s life walk‘, the ‘Hats On 4 CPC’ campaign and with input from the staff and its members – ICPCN will grow stronger and stronger.

Thank you all for your patience with me, for your support and for your trust in me. I am very happy to pass on the role of Chair to Paul and I am convinced he will lead ICPCN to make the progress needed to reach its ultimate goals.”

New board appointments

Paul Quilliam was appointed as the new chair of the board and Lyn Gould MBE as vice chair. Mike Palfreman remains as Board Treasurer. 

Experienced NFP (Not for Profit) director and senior executive, Paul Quilliam is the co-founder of Hummingbird House in Queensland, Australia and presently is the Tasmanian State Manager for yourtown and Kids Helpline.

On his appointment as Chair, Paul says, “It’s indeed a privilege and honour to become the new Chair of the board of ICPCN and continue to provide strong governance leadership following on from former Board Chair, Ms Sabine Kraft.  I look forward to playing my part in stewarding the mission and vision of ICPCN for the benefit of children around the world impacted by life limiting conditions.”

Lyn Gould MBE is the co-founder of Butterfly Children’s Hospices in China and is presently the Chief Executive Officer and Director of Operations for that organisation. 

Speaking after her appointment, Lyn said, “During the early years of pioneering children’s palliative care in China I learned about ICPCN and was hugely grateful for access to all the information, support and encouragement. I feel very honoured and excited to become Vice-Chair and look forward to furthering ICPCN’s vision and mission as the only international organisation supporting those who work so hard to develop and provide services for life limited and life threatened children around the world.”

You can see all those who serve on the ICPCN International Board of Trustees here