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International Children’s Palliative Care Network Icpcn newsletter 18    june 2012
 

International Children’s Palliative Care Network Icpcn newsletter 18 june 2012

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Children and young people with life-limiting or life-threatening conditions have very specific and unique palliative care needs, often different to those of adults. The International Children’s ...

Children and young people with life-limiting or life-threatening conditions have very specific and unique palliative care needs, often different to those of adults. The International Children’s Palliative Care Network (ICPCN) shares a vision that these total needs should be met to encompass physical, emotional, spiritual and developmental aspects of care. Mais sobre Paliativos acesse www.palliarte.com.br

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    International Children’s Palliative Care Network Icpcn newsletter 18    june 2012 International Children’s Palliative Care Network Icpcn newsletter 18 june 2012 Document Transcript

    • Issue 18 BOARD OF DIRECTORS June 2012 Joan Marston - Chief Executive LETTERInternational Children’s Palliative Care Network joan.marston@icpcn.co.za FROM THE CHIEF Lizzie Chambers - Co Chair EXECUTIVE Deputy Chief Executive Together for Short Lives, UK lizzie.chambers@togetherforshortlives.org.uk Dear Friends and their government’s of Children’s support . Barbara Gelb - Co Chair Chief Executive Palliative Care, Together for Short Lives, UK On my way home I was A barbara.gelb@togetherforshortlives.org.uk Sabine Kraft - Vice Chair As we enter the run-up to the Olympic delighted to be invited to be the Director Games, I decided that a good theme guest speaker at the opening of National Children’s Hospice Association, Germany kraft@bundesverband-kinderhospiz.de for my message would be that of the first children’s palliative care Richard Carling - Treasurer ‘Champions’. unit in KwaZulu-Natal, at Clairwood Finance Officer Hospital. A partnership between the Together for Short Lives, UK richard.carling@togetherforshortlives.org.uk As part of my job I have the immense Bigshoes Foundation, the hospital Sharon Baxter privilege of travelling to different and the provincial Department of Executive Director Canadian Hospice Palliative Care Association countries, meeting wonderful Health. And, once again, led by two SBaxter@bruyere.org champions who have developed or are dynamic and resourceful ladies, Dr. Dr Delia Birtar (MD) developing programmes that meet the Julia Ambler and Tracy Brand under Paediatric Project Coordinator Hospice Casa Sperantei, Brasov, Romania needs of life-limited children in many the expert guidance of their visionary birtardelia@yahoo.com innovative ways, and getting to meet director, Dr. Michelle Meiring. Dr Hanneke Brits the wonderful children and families Principal Specialist Department of Family Medicine they serve. This last month was spent Each region of the world has at least University of the Free State, South Africa hannekebrits@gmail.com visiting Belarus, Latvia and Georgia, one “Champion” for palliative care countries where resources are limited. for children, and we need to identify Dr Ross Drake (MD)Clinical Director - PPC & Complex Pain Services In Belarus and Latvia, despite the and support further champions who Starship Children’s Hospital, Aukland, NZ RossD@adhb.govt.nz challenges, Dr. Anna Garchakova and can take palliative care services to Dr. Anda Jansone have been very many more children. While funds are Dr Sue Fowler Kerry (PhD) Chair - Education & Research, ICPCN resourceful in setting up and running important, money alone will not make Professor, College of Nursing University of Saskatchewan, Canada expert programmes that reach many the difference; nothing gets done susan.fowler.kerry@usask.ca children and support increasing without those compassionate and Dr Anna Garchakova (PhD) numbers of families. Anna’s vision passionate people who put children Director Belarussian Children’s Hospice, Belarus of establishing a regional training first, care about the suffering of hospicepall@mail.belpak.by resource with a larger In-Patient Unit children and “get out there” to make Dr Rut Kiman (MD) for children and families, is already in a difference. Chief of Paediatric Palliative Care Professor A. Posadas Hospital, Argentina the process of development. rkiman@gmail.com Greetings from a wintry Bloemfontein, to Fatia Kiyange In Georgia, under the leadership of my fellow champions! Joan Director of Programmes African Palliative Care Association the Open Society Georgia Foundation, fatia.kiyange@africanpalliativecare.org plans are underway to set up a Dr Maryann Muckaden (MD) Medical Professor Radiation Oncology children’s palliative care programme Tata Memorial Hospital, India and I was very impressed by the vision muckaden@vsnl.net and the inclusiveness of the project, Welcome to Hazel Bala - Fellow from Parsons The New School for Design introduce Bala W We are delighted to introduce you to Hazel Bala who has come to South Africa to Hazel has spent much of her time being oriented to the field of children’s palliative care and has worked on various information and design projects, including looking at the design of the We are looking for ICPCN members who would be willing to participate in this project. We need interviews (using simple cell phone technology) with children’s palliative work with the ICPCN website, creating new banners, posters and care practitioners, primary caregivers (e.g. for six weeks as a helping the staff with social networking sites. parents) and children old enough to articulate recipient of the Open their thoughts and feelings about their Society Foundation’s She has also spent time taking photographs condition. Fellowship. The Fellows and interviewing practitioners, primary of this prestigious caregivers and children in order to put together If you wish to participate and contribute, scholarship are all a DVD that will be worked on by a collaborative please e-mail our Information Officer at: graduate students in the Communication team once she is back in New York. This will info@icpcn.co.za and Design and Technology Department of be suitable to use as an advocacy tool for Parsons The New School for Design in New children’s palliative care worldwide. York. 1 ICPCN is a registered charity in England & Wales (number 1143712) and a registered company in England & Wales (number 7675172)
    • NEWS & EVENTS INTERNATIONAL EVENTS CALENDAR: JUNE - SEPTEMBER 2012More information and contact details for all these conferences, courses and events can be found on our website. Go to www.icpcn.org.ukJune28 High Visibility (about transition to adult services) London, UK www.highvisibility.eventbrite.comJuly11 Workshop: Anticipatory Grief Derian House Children’s Hospice, UK patricia.clarkson@derianhouse.co.uk11 - 13 6th Annual Cardiff Conference on Paediatric Palliative Care Cardiff University, UK www.icpcn.org.uk20 - 21 Children and HIV - Closing the Gap Washington D.C. USA22 - 27 AIDS 2012 Washington D. C. USA www.aids2012.orgAugust27 - 31 IASP 14th World Congress on Pain Milan, Italy www.iasp-pain.org27 - 30 World Cancer Congress Montreal, Canada www.worldcancercongress.orgSeptember05 - 11 7th World Research Congress of the EAPC Trondheim, Norway www.eapcnet.eu/04 - 07 ANZPM 2012 Queensland, New Zealand www.willorganise.com.au/anzspm2012/08 - 12 14th Asian Pacific Congress of Pediatrics and 4th Asian Pacific Congress of Pediatric Nursing Kuching, Malaysia http://apcp2012.org/main/12 - 14 3rd Kenya Pallitiative Care Congress Nairobi, Kenya www.kehpca.org17 Launch of the South African Palliative Care Network CTICC, Cape Town, South Africa www.bigshoes.org.za18 - 20 HPCA International Conference CTICC, Cape Town, South Africa www.hpca.co.za 6th International Cardiff Conference SACPCN Launch Meeting on Paediatric Palliative Care 17 September 2012 CTICC in Cape Town The ICPCN is thrilled to be partnering once again wtih Cardiff University and Dr Richard Hain for the 6th International Cardiff Conference on Paediatric Palliative Care. What is the SACPCN The South African Children’s Palliative Care Network, (SACPCN) has arisen out of the need to provide a forum for healthcare and other professionals as well Speakers will include: as parents/caregivers to give input and support for an integrated approach to Myra Bluebond-Langner improve palliative care for children across South Africa. UK Chair in PPC The Venerable Richard Seed What is the SACPCN launch meeting all about? Archdeacon of York The launch meeting will provide an opportunity to bring leading experts in the field of PPC to a plenary session where they will share their knowledge and Professor Wilfred McSherry experiences with delegates. Faculty of Health, Staffordshire University Speakers include: Dr Pradnya Talawadekar Dr Khaliah Johnson Country Co-ordinator for the CPC project in Visiting fellow from Children’s Hospital of Philadelphia (CHOP) Mumbai, Maharashtra, India Joan Marston Jonathan Montgomery Chief Executive, International Children’s Palliative Care Network (ICPCN) Chair of Hampshire Primary Care Trust and Dr Michelle Meiring Professor of Health Care Law at the University Clinical Director Bigshoes Foundation and Paediatric Palliative Care Lecturer, of Southampton University of Cape Town Joan Marston Chief Executive of ICPCN The launch meeting will provide delegates with an opportunity to give input into and identify key areas of need for both the health care professional stream and For more information the caregiver and family streams, as well as to elect representatives to guide the Phone: +44 (0) 29 2087 5508 institutionalization of the SACPCN. The meeting will also provide an opportunity for Email: PPC2012@cardiff.ac.uk stakeholders to network with each other and for organisations to showcase their work. Website: www.icpcn.org.uk Who should come? The launch meeting is aimed at child health professionals such as nurses, doctors, paediatricians,social workers, allied health practitioners, spiritual leaders as well as caregivers including parents, grandparents, NGO staff and home-based care workers. The meeting will be accredited for Continuing Professional Development Points for South African participants. Book your place Please complete the registration form at www.hpca.co.za How much will it cost? The two-day symposium will be held on 20 & 21 July 2012 at Health Care Professionals R750 Parents and caregivers R500 the Georgetown University Hotel and Conference Centre in Washington D.C Find out more at: www.teresagroup.ca Find out more: www.bigshoes.org.za ICPCN is a registered charity in England & Wales (number 1143712) and a registered company in England & Wales (number 7675172)
    • INTRODUCING....New resources from Together for Short Lives Together for Short Lives has launched Together for Short a brand new charter representing the Lives has also re- needs of families of children with life- branded four family limiting and life-threatening conditions. factsheets which were previously The charter focuses on the types of produced by ACT. information and support families should expect to receive. These are: The ten statements set out in the charter are general principles that Together for  Understanding siblings’ needs Short Lives believes all organisations  Spiritual, religious and cultural working in children’s palliative care and wishes disability sectors, as well as complex care  End of life planning services and acute settings will support.  After your child’s diagnosis By displaying the charter, services will These have all been re-vamped to fit with be publicly showing their commitment to the Together for Short Lives brand and these core principles, and will be sending are free to download at www.act.org.uk/ a clear message to the families they work familyfactsheets. with. For hard copies, contact View and download the charter at susannah.woodhead@ www.act.org.uk/tfslcharter togetherforshortlives.org.uk or call 0117 989 7820. Posters can be ordered in A4 or A3 format by emailing info@togetherforshortlives. org.uk or calling 0117 989 7820.eHospice - a free website and app with international news on hospice,palliative and end-of-life care, including children’s palliative care hospice and Available across web, mobile and palliative care tablet, ehospice will offer you a dynamic organisations learning experience, including a directory worldwide. of hospice and palliative care worldwide accessed via an interactive globe. At the touch of a button, you To find out more about ehospice ahead Launching in October, ehospice is a free will find the latest news, commentary and of the launch on 2 October, sign up for website and app that will bring you real analysis from across the world, bringing regular email updates by visiting: time international news and intelligence together the expertise and experience on hospice, palliative and end of life of the global hospice and palliative care www.ehospice.com care – delivered by regional and national community. ICPCN eLearning module on the WHO Pain Guidelines updated Have you completed the short course revised with new information in line as taking participants through the on the new WHO Pain Guidelines with the published guidelines. principles of pain assessment and for persisting pain in children? You management in children, this course can still do Pain assessment and management will also introduce them to the new this through are key competencies within the guidelines. Thus it will serve both as the ICPCN’s discipline of children’s palliative a course for teaching clinicians new eLearning care. New guidelines were released to the area, as well as updating those m o d u l e on 1 March 2012 by the World who have been working in children’s which can Health Organization (WHO) on the palliative care for a while. be accessed management of persisting pain in t h r o u g h children. Various changes have been Go to www.icpcn.org.uk and click on the ICPCN made since the last guidelines were this icon or follow the website. This published, including the reduction of link on the menu bar. module has the three step analgesic ladder for recently been children to a two step ladder. As well 3 ICPCN is a registered charity in England & Wales (number 1143712) and a registered company in England & Wales (number 7675172)
    • GOODBYE AND THANK YOU The end of an era - a sad goodbye to the wonderful ‘Champions’ from the Diana, Princess of Wales Memorial Fund Champions who are very often found in the background are the visionary people working for donors to ensure that the donor funding is given where it is needed and will make a difference. It has been my privilege to work with the Diana, Princess of Wales Memorial Fund since 2001. Sadly the fund is closing down at the end of 2012 and its impact on Children’s Palliative Care will be sorely missed. I would like to take this opportunity to thank the following people within the fund who have tirelessly supported the ICPCN and children’s palliative care over the years. Laura Ross-Gakava has been a Dr. Astrid Bonfield, the Chief Olivia Dix, who has led the real friend to children’s palliative Executive, is very supportive of Palliative Care Initiative for care in sub-Saharan Africa, palliative care for children and many years, is a true and leading efficiently and effectively we congratulate Astrid on her energetic visionary who has on a project to develop Beacon appointment to head the Queen’s often identified a need before Centres for children’s palliative Diamond Jubilee Fund. people working in the field, and care in South Africa, Uganda and proposed effective solutions. Tanzania, supporting the in-country Olivia has been a “forever friend” leaders or Navigators, and being to palliative care and we know forever supportive of myself as that wherever she goes from project coordinator. Laura is now the Fund, she will make a real working for another Foundation and difference in the lives of children we know that she carries children’s and adults who need support. palliative care in her heart. To all the staff of the Palliative Care Initiative , we send a very big and heartfelt “Thank you” and wish you all well in the work you do in the future. We will be forever grateful to the Diana, Princess of Wales Memorial Fund for their wise and effective grant-making that has made a real and lasting difference to children in Africa. The Sally Lyon is the quiet and efficient fund has been a fitting tribute to Diana, Princess of Wales and Administrator of the Palliative Care the ICPCN is committed to making sure that the work they have Initiative and it has been a joy to started in children’s palliative care continues. work with Sally as she has been the calm and friendly “engine” of Joan Marston this wonderful fund. 4
    • FEATURE ARTICLESTWO NEW CHILDREN’S HOSPICES FOR AFRICA Tiny Tim and Friends opens Maluba House in Zambia being HIV and HIV-related cancers. along with generous donations from Paediatric palliative care through Tiny Tim and Friends supporters Maluba House is child-centred around the world that the opening of care and support which relieves Maluba House was made possible. not only the pain and difficult physical symptoms, but also deals with the child as a whole person— remembering each child has specific psychological and spiritual needs. Selected Tiny Tim and Friends (TTF) staff members were sent to Uganda for one month to study paediatric palliative care. In our imperfect world, there are I In partnership with Our Lady’s many children who suffer and die in Hospice and the Elizabeth Glaser needless pain. Until very recently, Pediatric AIDS Foundation, Maluba there were next to no palliative care House was created for paediatric services for children in Zambia, palliative care, or for children where even preventable pain has with life-limiting or life-threatening been accepted as a fact of life for illnesses, such as HIV/AIDS, TB, many. While working with critically ill children, it is a natural progression that Tiny Fifteen year old Michael Mapenzi Tim and Friends and our from the Kalingalinga compound in partners should be at the Lusaka, Zambia and whose story forefront of establishing was featured in ICPCN’s publication these services for children ‘Touching Rainbows’ was one of in Zambia. Maluba House’s first patients and was able to appreciate the benefits of the beautiful new facility before he passed It is thanks to funding from away earlier this year. The Diana Princess of Wales Memorial Fund, Elton John To find out more about the work AIDS Foundation, UK based being done in Zambia visit: charity, True Colours Trust, www.tinytimandfriends.org cancer or severe disabilities. Open since July 2011, “Maluba” is the local word for flower. And indeed, it does live up to its name! Walls are covered with beautiful flowers painted by the 10th grade class of Lusaka International Community School. Since the opening around 40 children have passed through Maluba House with various diagnoses, mostly 5 ICPCN is a registered charity in England & Wales (number 1143712) and a registered company in England & Wales (number 7675172)
    • FEATURE ARTICLESTWO NEW CHILDREN’S HOSPICES FOR AFRICA The Bigshoes Foundation opens the First Children’s Hospice for KwaZulu/Natal, in South Africa at Clairwood Hospital in Durban siblings and primary caregivers, can be taught how to provide care and support and administer treatment and themselves receive counselling and support. For health care workers this unit will be a place to put knowledge into action and to learn from experts and then take that knowledge and competence back to their own organisations. The ripple effect of having such a professional centre. For the community this unit is an expression of the good in our communities and an opportunity Volunteers add the finishing touches to the for individuals and organisations outside mural on the new playroom, named to give of their time, talents and ‘Sithandeni’, which means ‘We love them’ in Zulu. resources. For all who help here in any way, it will enrich your own life immeasurably. However a unit such as this cannot work in isolation. It must be part of a continuum of care and network and Dr Julia Ambler of the Bigshoes train extensively to ensure children Foundation describes the services that continue to receive palliative care will be provided by the new children’s when back in their homes and palliative care unit at the hospital communities where they belong. The opening speech given by Joan Marston, Chief Executive of This warm and inviting centre has the ICPCN its own voice and speaks loudly on I behalf of these children and their I believe that the opening of families. Twelve year old Mattie this this beautiful unit, the wise and Stepanek was the fourth child in his compassionate compassionate partnership could family to live with and eventually be the stimulus for KZN to look at a die from a rare form of muscular provincial network of palliative care dystrophy. He wrote about colours services for children. The value in his anthology about ‘heartsongs’: of this unit goes far beyond the unit itself. For the children, always The colour of earth is browns and greens first and foremost, it will be a safe The colour of sky is blues and greys and child friendly haven where their condition can be assessed, The colour of hope is rainbows and If well enough, every child in the two paediatric and for expert treatment of pain sunsets wards are provided with stimulation under the supervision of a dedicated play co-ordinator and and symptoms of the body mind And the colour of love is people together a qualitifed teacher. Toys are also taken to the and spirit. For intensive therapies, wards for the children who are confined to bed. developmental stimulation and for May this unit be a blessing and little time spent playing and enjoying bit of heaven on earth for children normal childhood activities. A and their families and all who come place where they can express their into contact with it. emotions and get help in dealing with them. Joan Marston KZN Statistics for KZN has more children than any And for those children who cannot other province in South Africa (23%) die at home to be cared for with and the highest prevalence of HIV in children under 15 years of age. compassion and skill, in comfort (4.1%) and with dignity and respect. Families can safely leave their 78,7% of children living in KZN live in children here while they enjoy poverty where their family earns an income of less than R552 a month some respite from the unending (approx. US$ 65) A dash of colour was added to the wards responsibilities of care. Parents, and the small ‘End of life’ room. 6
    • FEATURE ARTICLESCHILDREN’S PALLIATIVE CARE IN URUGUAY Achievements Achievements to date have included: Mandatory Paediatric Residents Course of 22 hours with a 6 month clinical rotation (So far 132 paediatric residents have passed this); Professional health workers workshops; Seven eight hour ‘Introduction to PPC’ workshops have been held for 210 participants from different disciplines and regions. Participation in national congresses and scientific events including: • Uruguayan Congress of Paediatrics • Uruguayan Congress of Medical Psychology • Uruguayan Congress of Paediatric The paediatric palliative care team based at Pereira Rossell Hospital Centre in Montevideo Nursing Uruguay is a little country in the south of clinical reasoning tool is used. After this • HIV national scientific conference South America, in between Argentina on meetings with the children and families • Neonatology Department conference the west and Brazil in the North. It has are held as well as with specialists and the • Paediatrics Uruguayan Society annual a population of 3.3 million and an infant primary care physician. With input from meeting mortality rate of persons 7.7°/oo. It is children, family and professionals, caring • TELETON conference unknown how many children need palliative objectives and support needs are defined care. and their implementation planned. Barriers Barriers to our development include having The paediatric palliative care team is Our work in the field of education has only honorary/part time work conditions, based at Pereira Rossell Hospital Centre included: the lack of budget for providing continued (PRHC) the national women and children  Incorporation of CPC into the care for ambulatory and ‘at home’ patients reference hospital, located in Montevideo, Paediatric Resident’s curriculum as well as slow official recognition. Public Health Ministry – Universidad de la  Continuous Professional Republica. Development workshops for health Challenges workers  To know the number of Uruguayan National legislation in Uruguay has stated  Spreading CPC principles and children living with life threatening- that it is the right to the whole population experience in different health limiting conditions to receive palliative care but before 2004 professional scenarios  To create a national PPC network, there was no paediatric palliative care unit for caring of children in all possible (PPCU) in the country. In 2004 the first Clinical reasoning tool for scenarios (home, office, hospital), in PPCU inside the Intensive Care Unit PRHC Paediatric Palliative Care public and private settings, 24 hours/ was formed and in 2008 the Pereira Rossell 1. Does this child need Palliative Care? day Hospital Centre - Pediatric Palliative Care Why?  To include “death management” and Unit (PRHC-PPCU) was implemented with 2. To which ACT Category does he/she PPC in the curriculum of all health assistance and for educational purposes in belong? professions that work with children the Paediatrics’ Department 3. In which stage is he/she in relation to  To achieve more complete assessment death risk? methods for educational activities Our Interdisciplinary, part-time/honorary 4. What are their main problems?  To asses impact of CPC in children team consists of two paediatricians, two Biological, psychological, social, and family quality of life in order to paediatric residents, one oncologist, one communication, spiritual ? adapt and improve professional action social worker, three psychologists, two 5. What are the major child and family nurses and one physiotherapist. needs and preferences? We are very happy to be part of the ICPCN 6. What are the human, materials, network! The primary objectives of the unit are organisational, or management to improve the quality of health care and resources needed to solve the Mercedes Bernadá quality of life of hospitalized children with problems and satisfy needs Professor of Paediatrics life-limiting/threatening conditions and to identified? PRHC-PPCU Coordinator improve the palliative care competencies 7. To define together with the child (if Uruguayan Pediatric of paediatric staff working at PRHC. possible) and the family the care Palliative Care Team objectives and action plan Weekly meetings are held in order to facilitate the clinical work and for the To date we have worked with 165 children planning of educational activities. ranging in age between 28 days and 16 Map showing years. levels of children’s Patients are presented by the paediatric palliative care residents/ward staff and a systematic provision in South America 7 ICPCN is a registered charity in England & Wales (number 1143712) and a registered company in England & Wales (number 7675172)
    • FEATURE ARTICLES First Children’s Hospice in Germany has been Awarded the Seal of QualityThe first SEAL of Quality for a children’s The idea to developing this sealhospice in Olpe was awarded by the of quality grew out of the needTÜV Rheinland Group, a global leader to prevent any institution callingin independent testing and assessment itself a ‘children’s hospice’services. without providing the necessaryF services and to guaranteeFor the very first time in Germany, a continuity, standards andchildren’schildren’s hospice has been awarded a seal transparent quality in children’sof quality. The seal was specially developed palliative care. With thefor the work of children’s hospices in support of a special consultantGermany. It guarantees reliable quality agency the development ofstandards in a children’s hospice. The a quality handbook, whichglobal leader in independent testing and should become a guide for allassessment services, the TÜV Rheinland, institutions, was created. It hassent an auditor who investigated the been a long, arduous and verystructures and processes of the children’s time consuming process. But From left to right:hospice in Olpe. The ambassadorship for finally, in 2011, the handbook – Gero Gieseler, Quality Manager, Child Hospice Balthasar, Olpethe seal has been taken up by a German one for purpose-built institutions Sabine Kraft, CEO, National Association of Childrens Hospices inmember of parliament, Mrs. Bracht-Bendt, Germany; Rüdiger Barth, CEO, Child Hospice Balthasar, Olpe and one for home-services, was Olaf Seiche, CEO Business Unit Service Sector, TÜV Rheinlandwho was also the chairwoman of the finished. MdB Nicole Bracht-Bendt, Member of Parliament, BerlinFederal intergroup child commission. The handbooks contain a description of all and it gives our families even moreChildren’s hospices and children’s hospice procedures that take place in a children’s assurance of our reliability and thathome care services support children with hospice. The level of the handbook is they are in good and professionallife-limiting diseases, together with their structured in the same way as the DIN ISO hands.”families. The care begins from diagnoses quality seals for companies, commonlyand continues into the time of bereavement. used in Germany. We wanted something Sabine Kraft, CEO of the NationalThese organisations take care of the sick that went beyond that of the DIN ISO Association of Children’s Hospiceschildren, offer recreational support, relief certification. We wanted the seal to be adds “With the Children’s Hospiceand understanding and help the families unique and to be specific to children’s Quality Seal we can give betterto organise their day-to-day living and to hospices. For this reason we added direction and meaningful advice todevelop a new perspective on life. further criteria to the handbook. Finally, people needing to find a children’s the handbook also refers to the commonly hospice able to meet their needs.”In 2006, the members of the National agreed structural format of children’sAssociation of Children’s Hospices hospices. The National Association of Children’s(Bundesverband Kinderhospiz e.V.) Hospices in Germany (Bundesverbanddeveloped the concept of how to When a children’s hospice has successfully Kinderhospiz e.V.) is the umbrellaimplement standards of quality in children’s instituted all processes and policies as organisation for the Children’s Hospiceshospices. It was a challenge – taking into set out in the handbook within its own and Children’s Hospice Home Services inconsideration the sensitivity of the subject organisation, it can apply for certification. Germany. Our focus is the quality of life ofas well as the highly complex structure of The TÜV then audits the organisation and life limited children and their families.a children’s hospice. A task team made up as the National Association of Children’sof leaders of children’s hospices collected Hospices, Bundesverband Kinderhospiz Sabine Kraftinformation on how children’s hospices can award the seal of quality. The children’sare structured. For example, in the case hospice seal is valid for three years. Contactof purpose-built children’s hospices there Bundesverband Kinderhospiz e.V.needs to be a minimum of eight beds for Coincidently, the first institution to attain the Sabine Kraftsick children, specially qualified palliative seal was also the first children’s hospice Antoniterstr. 13, 79106 Freiburgcare professionals, a separate area for to open in Germany. CEO of Balthasar Tel.: 0049-761-7661725end of life care, professional bereavement Hospice, Rüdiger Barth says: “We are so E-Mail: kraft@bundesverband-support, training and supervision of the proud and happy, that we are now kinderhospiz.devolunteers and employees. This information the first children’s hospice with aregarding the requirements was included in seal of Child Hospice Quality. It isthe position paper of the Bundesverband an acknowledgement of our workKinderhospiz. 8 ICPCN is a registered charity in England & Wales (number 1143712) and a registered company in England & Wales (number 7675172)
    • BITS AND PIECES Report back on first Paediatric Palliative Care Conference in Norway Several of the media also mentioned theIIn May this year the first children’s palliative increased knowledge, skills and educationcare conference for the Nordic countries on issues such as communication with conference and there was a brief interviewtook place in Kristiansand, Norway’s fifth dying children and their families as well on Norwegian radio in the early morningbiggest city. The same city where palliative as how to prepare health professionals to of the conference day. We want to thankcare for children in Norway started in 2009. practice palliative care to children. everyone who helped, all who participated, and all who helped with practical tasks.It began with a young girl of 17 years The conference was attended by over And also a big thanks to ICPCN andwho died after a life of illness. Now her 204 health care professions from all over Together For Short Lives for contributing,mother, Natasha Pedersen, is continuing Norway, including nurses, doctors and great cooperation and good advice. Alsowith her daughter’s life legacy through the social workers. There were also attendees we want to give a special thanks to Andrèorganisation, “Yes to Units and Palliative from Sweden. Grundvig, the leader of the NorwegianCare for Children in Norway”. Paediatric Nursing Association. Both the Mayor and the head of the HealthMore than two years ago Natasha initiated and Care Committee from the Departmenta partnership with the Paediatric Nurses of Health were involved in opening theAssociation and the planning began for conference along with a large children’sNorway’s first conference on palliative care choir with over 50 children.for children which they called “Not bits andpieces”. The title was taken from a book The conference was a great success.by Jan Kåre Hummelvoll. The title was The evaluation showed that 95% of thewell suited for the focus of this important participants gave very positive feedbackconference, namely to put palliative care about the conference and were inspiredfor children on the government agenda. to do more. The conference was just theThe goal for the conference was to provide beginning and an introduction to palliativea basic introduction to palliative care for care and palliative care for children. Thatchildren; to look at what issues we need there is a need for more conferences in theto focus on, what has been done and future is now very clear. It has challengedwhat should still be done. Research was us to continue working to achieve a more Dr Ann Edner, with Livia the labradoodle,presented as well as recommendations on practical conference the next time and from the only children’s hospice in Swedenwhat is happening at the international level. even possibly a Master class with the help called Lilla Erstagården, attended theThe conference also focused on the need for of the ICPCN. conference and gave a presentation. Bayt Abdullah Children’s Hospice in Kuwait is looking for a Medical Director, Head of Care and Director of CareBayt Abdullah Children’s Hospice (BACCH) from individuals and organizations within team and serving as a clinical preceptor foris one of the major projects under the Kuwait to run its operations and to provide junior and senior nurses.Kuwait Association for the Care of Children the medical and clinical care required.in Hospital (KACCH). The Head of Care is expected to run Bayt Abdullah is seeking a full time clinical day-to-day operations by providingBayt Abdullah Children’s Hospice is Medical Director of International Standing professional and clinical leadership toproviding comprehensive, paediatric who will assume the overall responsibility the palliative care team, creating anpalliative care facility that embraces all the for the medical component of the hospice environment and culture within the careneeds of children with life-limiting and life- program and lead our highly motivated team where quality and excellence arethreatening conditions and their families and committed multidisciplinary team valued and clinical practice reflects thein an attractive, child friendly environment of professionals to achieve the highest highest standards of care for children,enabling them to live their lives as fully as standard of paediatric palliative care for all young people and their families.possible for as long as possible. children in Kuwait, and their families. Closing date for applications for these threeBACCH is providing specialised The Director of Care is expected to positions is 1 July 2012. To find out moreprofessional palliative care service, free of plan, direct and manage the provision of about these positions and how to applycharge for all children in Kuwait who meet paediatric palliative care for children and please visit their website at:the criteria for admission to the hospice, their families across the hospice and home-regardless of nationality or religion. care services, working with Medical Director www.bacch.orgBACCH depends entirely on donations and other members of multidisciplinary Should you wish to contribute to ICPCN acknowledges with gratitude the ICPCN is a registered charity in England & or advertise in ICPCN Network funding received from The True Colours Wales (number 1143712) and a registered News please contact the Editor, Trust for the furtherance of its work in company in England & Wales (number 7675172) Sue Boucher promoting the development of paediatric Email: sue@icpcn.co.za palliative care worldwide. Registered as a Co in SA: 2011/001648/08 Cell: +27(0)82 897 4420 www.truecolourstrust.org.uk