On June 25, 2013 a paediatric palliative care stakeholders meeting took place in Lisbon, Portugal. It was organised jointly by the newly formed Paediatric Support Group of the Portuguese Palliative Care Association and Committee of Continued and Palliative Care of the Portuguese Society of Paediatrics and it was sponsored by the Gulbenkian Foundation (DINAMO project – development of palliative home care); the National Committee of Maternal, Child and Adolescent Health (dependent on the Ministry of Health); and ICPCN.
Almost 120 people were present, from all over the country (with the exception of the islands of Madeira and Azores). Healthcare providers from varied institutions and backgrounds attended the meeting; also present were representatives from parents associations and from the Ministries of Health and of Social Security, as well as a member of parliament who is a strong palliative care advocate.
Portugal is currently involved in capacity building for paediatric palliative care and the debate was focused on the unmet palliative care needs of Portuguese children; the current status of the National Health Service, some local experiences, the non-existent (for paediatrics) integration with the National Network of Continued Care and the not-to-be-missed opportunity of the up-coming implementation of the National Network of Palliative Care were discussed at length.
It was agreed that the main barriers to progress are:
- The low numbers, the diversity of diagnosis and geographical dispersion of children,
- the lack of basic professional training,
- the fragmentation of care in situations with complex care needs and
- the non availability of specialised home care and respite options for families (with the exception of small islands of excellent care).
An A5 brochure reviewing the main concepts, models and recommendations for the delivery of paediatric palliative care was distributed to all the participants. (See picture above).
The conclusions of the meeting will now be forwarded to the main stakeholders, these being:
- The Ministries of Health, of Social Security and of Education
- The National Network of Continued Care and the future National Network of Palliative Care
- The boards of the Portuguese Palliative Care Association and the Portuguese Society of Paediatrics
It is hoped that the work of the Organising Committee will progress to a nationwide effort for the sustainable development of equitable and excellent palliative care to Portuguese children.
The members of the Paediatric Support Group of the Portuguese Palliative Care Association:
• Ana Forjaz de Lacerda, MD (coordination)
• Cristina Pinto, Psychologist
• Fatima Ferreira, RN
• Helena Salazar, Psychologist
• Joana Mendes, RN
• Jose Eduardo Oliveira, MD
• Manuela Paiva, Social Worker
• Silvia Ramos, RN
• Susana Corte-Real, MD
Committee of Continued and Palliative Care of the Portuguese Society of Paediatrics
• Ana Forjaz de Lacerda, MD (coordination)
• Eulalia Calado, MD
• Filipa Luz, RN
• Graça Oliveira, MD
• Joana Mendes, RN
• Paula Guerra, MD
• Teresa Nunes, MD
For any further information or queries, both these groups can be contacted through the following email addresses:
Comissão de Cuiddos Continuadeos e Paliativos da Sociedade Portuguesa de Pediatria
Email: secretariado@spp.pt
Grupo de Apoio á Pediatria da Associação Portuguesa de Cuidados Paliativos
Email: gapediatria@apcp.com.pt
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