The Children and Young People’s (CYP) Reference Group aims to advocate for and drive the development of accessible and high-quality palliative care for children and young people through the EAPC.
The CYP Reference group brings together all those working to develop and sustain children’s palliative care services in order to expand the evidence base and share learning and research.
A Steering Group has been established to organise this work and to build the membership of the wider group.
Aims and objectives
1. To bring together the wide range of professionals working to develop children’s palliative care in European countries and provide opportunities for sharing of information, research, education and advocacy.
2. To support the development and dissemination of the evidence base in children’s palliative care through identification of specific workstreams leading to published guidelines and standards.
3. To provide educational opportunities for those working in children’s palliative care through the development of paediatric sessions at EAPC events.
4. To support the development of palliative care for children and young people across Europe, through advocacy and awareness-raising, signposting organisations to the support offered by the International Children’s Palliative Care Network, the guidelines and standards developed by the Paediatric Task Force and other useful resources.
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Consultant in Paediatric Oncology, MSc Palliative Care
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We are keen to encourage new members to join the wider group and get involved in this programme of activity. Please contact email@example.com
Natasha Pedersen, Founder and Chief Executive, The Norwegian Association for Children’s Palliative Care, Norway (EAPC Board Link)
Dr Kim Beernaert, Postdoctoral Researcher, University of Gent, Belgium
Lizzie Chambers, Development Director, Together for Short Lives, UK
Dr Finella Craig, Consultant in Paediatric Palliative Medicine, The Louis Dundas Centre, Great Ormond Street Hospital for Children, UK
Dr Julia Downing, Chief Executive, International Children’s Palliative Care Network (ICPCN), UK
Dr Lorna Fraser, Senior Lecturer, NIHR Fellow & Director of the Martin House Research Centre, University of York, UK
Silvia Lefebvre, Director, The Maruzza Foundation, Italy
Jitka Kosikova, Paediatric Nurse, Supporting Mobile Hospices, Czech Republic
Dr Deborah Gubler, Children’s Palliative Care Consultant, Zurich Children’s Hospital, Switzerland
Erna Michiels, Netherlands, Children’s Oncology and Palliative Care Consultant, Prinses Máxima Centrum voor kinderoncologie BV, Utrecht, Netherlands
Achievements over the past year (2020):
- We now have 146 members of the Children and Young People’s Reference Group and produce a newsletter to share information, research, educational events and advocacy. We have also reached out to other organisations to encourage them to include children’s palliative care, such as SIOP (International Society of Paediatric Oncology).
- We have worked with the Martin House Research Centre to develop and distribute a survey relating to the use of cooling facilities in services across Europe and will be sharing a report of the findings in a future newsletter.
- We have supported all the EAPC Congresses since the Task Force was set up, organising a dedicated day on children’s palliative care and holding open meetings.
- We have commenced work on developing an international version of the Together for Short Lives Guide to Children’s Palliative Care. We are also awaiting the publication of the Maruzza Foundation IMPaCCT Standards and will use this to develop a Charter that can be used to advocate for the development of Paediatric Palliative Care