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Official ICPCN monthly e-bulletin. Visit our website at www.icpcn.org
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Message from our Chief Executive

In our last newsletter I reported that the new ehospice website was being developed. As you will hopefully have seen, the website is now up and running. We hope that you like it – a lot of work has been going on behind the scenes in preparation of the launch of the new website and we thank everyone involved in this and look forward to reading all the new articles that have been posted.
 
As I write this I am at a conference to mark the 10th Anniversary of the Makerere/Mulago Palliative Care Unit (MMPCU) which ICPCN is supporting. Many of you will know that I have been working in Uganda since 2001 and this is part of the celebrations of 25 years of palliative care in the country. It has been a privilege to be part of the palliative care journey here in Uganda and to hear of the ongoing developments and strategies for future development, especially for the increase of palliative care for children. Several of the participants attending the conference have undertaken the Diploma in Children’s Palliative Care at Mildmay Uganda and we congratulate them and all the students who are graduating later this month.
 
ICPCN has been working with our partners, the Worldwide Hospice and Palliative Care Alliance (WHPCA) and the International Association of Hospice and Palliative Care (IAHPC) on a fact sheet about Universal Health Coverage (UHC) – this fact sheet can be downloaded and we encourage you to share this document, especially with those at decision making level, so that they can understand the importance of palliative care within UHC and the need to integrate palliative care into primary health care and to ensure equitable access for adults and children.
 
It is hard to believe that we are now halfway through August and #Hatson4CPC is only a couple of months away. I hope that you have begun to think about how you will be marking this day and the different ways that you can raise awareness for children’s palliative care. I will be travelling at that time and am looking forward to being involved in events in both Indonesia and Hong Kong. Please do let us know what you are planning and we look forward to hearing all about it and seeing your photos through facebook, twitter etc.
 
Meanwhile you will have received an email from us about collecting your stories about children’s palliative care. As a network we would like to be able to share stories of the difference that palliative care can make to the lives of children and their families from different parts of the world – so please do share your stories and experiences and we look forward to reading them.
 

Prof. Julia Downing
Chief Executive
 

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.

Read more and download the Fact Sheet from the ICPCN website. 

ICPCN Chief Executive attends important symposium in Beijing heralding a 'new era' of CPC development in China


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.   

 
Prof Wang Tianyou, Vice President of Beijing Children’s Hospital, heralded in a “new era” for children’s palliative care in China as he opened the symposium and launched the committee. 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 National Symposium gave attendees the opportunity to hear about the work on children’s palliative care 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.

Read the full article on the ICPCN website.  这篇文章有中文版。  

University seeks evidence on respite care for young adults with complex health care needs

Researchers at Edge Hill University are leading a collaborative NIHR-funded systematic review investigating respite care and short breaks for young adults aged 18-40 years with complex healthcare needs due to a life-limiting condition and/or complex physical disability. If you know of any unpublished work (e.g. service reports, evaluations) or currently ongoing research or evaluations being undertaken on this topic which could be of relevance, the team would like you to get in touch. Please click on this link for full details of the call for evidence and the review website.

Launch of new ehospice website

 

After much anticipation and much hard work behind the scene, the new ehospice website has gone live. Take a look and let us know what you think.  

ehospice is a globally run news and information resource committed to bringing you the latest news, commentary and analysis from the world of hospice, palliative and end of life care. It is published across multiple editions by regional and global pallaitive care organisations. ICPCN has been involved with ehospice since it's initial launch in October 2012 and gives a voice to our members, telling your stories and creating greater awareness and helping to dispel the myths that often prevent children from accessing care when they need it most through the International Children's edition.
 
ehospice aims to improve patient care through access to information, to foster a sense of community in hospice and palliative care worldwide and to give a voice to people associated with hospice and palliative care, whether as professionals, volunteers, patients or carers. 

To join this community and to contribute to ehospice, please visit the new ehospice website.

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.

Read more

Upcoming Conferences and Events

The ICPCN website has a regularly updated Calendar of Events listing events related to children's palliative care taking place around the world. Contact us to have your event listed on this calendar at no cost.
  1. 12 - 16 September IASP World Congress on Pain, Boston, USA
  2. 13 - 16 September RareX 2018 - Rare Diseases Conference, Johannesburg, South Africa
  3. 17- 18 September 20th World Congress on Paediatric Oncology and Nursing, Philadelphia, USA..
  4. 21 September The Martin House Research Centre 1st Biennial Research Conference, York, UK
  5. 2 - 5 October 22 International Congress on Palliative Care, Montreal, Canada
  6. 12 October Hats On 4 Children's Palliative Care - Global
  7. 24 - 27 October 4th Global Gathering Maruzza Congress on Paediatric Palliative Care, Rome, Italy
Sign up for ehospice alerts and keep  up to date with what is happening in children's palliative care around the globe.
Thousands walk for CPC in Germany
Members of the German national association of children’s hospices, Bundesverband Kinderhospiz e.V., including outpatient and in-patient children’s hospice facilities will participate in the Kinder-Lebens-Lauf (Children’s Life Run) around the country this summer – an event that will take place in around 100 stages and last an estimated 132 days. Thousands of supporters of the association and its member organisations have committed to run, walk, cycle, ride, roll in a wheelchair and even travel in a hospital bed as they carry a specially crafted ‘Angel Torch’ around the whole of Germany. The event was launched by Sabine Kraft, Chair of the ICPCN Board of Trustees.

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Good luck message from Ed Sheeran and 'Ed-head' for hospice shop
Global music star, and local Suffolk resident, Ed Sheeran, sent a message of “good luck” to St Elizabeth Hospice for the opening of their new Zest shop on Queen Street in Ipswich which opened to the public in June this year. The Ipswich shop which aims to generate funds to support the care of young adults living with progressive and terminal illnesses across east Anglia is the first of a number planned for the coming year. A long-time supporter of the hospice through the donations of personal items, Ed sent the message when he was told that some of his recent donations – including the much publicised LEGO ‘Ed head’ and his first record player would be used to support this new brand.
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Video asks Robert Downey Jr to support Ladybug House in Seattle

In an effort to reach out to actor Robert Downey Jr, who assisted in fund raising over 2 million dollars for the building of Julia’s House Children’s Hospice in Wiltshire, UK, a video has been made which it is hoped will ‘go viral’.Currently there are only 3 children’s hospices in the United States. While many hospitals provide high quality hospice and palliative care for children, 80% of children’s deaths occur in hospitals. Founded by Suzanne Gwynn, Ladybug House hopes to be the 4th Children’s Hospice to open its doors in the USA. In this video, Julia’s House CEO, Martin Edwards, appeals to the famous ‘Iron Man’ to assist in building a hospice like Julia's House for American children.

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