House of Hope Brasov, Romania Dr. Delia Birtar, Paediatric Project Coordinator

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Beginnings First steps  April 1992, Hospice 'Casa Sperantei' Brasov was founded as a Romanian- British charity -home care team for adults.  March 1996 The first PPC for children from Romania started as a home care service with a nurse and a doctor.

A big development was in 2002 when we opened the new building

House of Hope Brasov, Romania Adults complex services Children PC department  Home-care  In-patients unit with 6 beds  Day center  Rehabilitation service  Out-patient clinic  Hospital consultations  Study center

Paediatric Team Doctor: 1 Nurses – 5 in-patient – 2 for HC Nurse-assistants: 5 Social workers: 2 Psychologist: 1/2 Play therapist: 1 Physiotherapist: 1 Driver Spiritual coordinator: 4h/week Volunteers

Patient eligibility criteria Age: 0-18 years Diseases: all the diseases who fall in the 4 ACT categories Life expectancy: not likely to reach adulthood Referred by: – Physicians –most of them from the children hospital, but also from family doctors – Community, children‘s institutions – Family self referral

Patients 2011 House of Hope Brasov, Romania N=142 Age groups – – – – >18 y 21 Death: death Place of death: a study over 12 years showed that about 80% patients died at home

Funding From totally supported from U.K. to mainly self supported 2011 External funding: Hospices of Hope U.K. 12% in 2011 Local funding 88% in 2011 grants Public funds: health insurance, social subvention from the town hall Fund raising events, campaigns and stands

Funding From totally supported from U.K. to mainly self supported The local funds grew up dramatically after 2006 Dedicated fund-raising team Campaigns not only events 2% from taxes (the fiscal code allows the employees to redirect 2% of the taxes to NGOs) The good reputation built in time The public awareness's built in time The volunteers department

PPC Services in Romania Hospice of Hope 12

The national role of Hospice “Casa Sperantei To offer a valid and complex model of care for a neglected category of patients To set and maintain standards of care in cooperation with Health and Child Protection Authorities To provide theoretical and practical teaching in palliative care To promote the concept of palliative care for children on a national level through education and lobby To act as a national resource and training center in palliative care

The international outreach Education, tutoring, organizational help: MoldovaMoldova BosniaBosnia SerbiaSerbia AlbaniaAlbania GreeceGreece BulgariaBulgaria Georgia, Tajikistan etc,Georgia, Tajikistan etc,

Organizational issues PPC for children – independent service or part of an adults-children service??? AdvantagesDisadvantages Stronger lobby, advocacyChildren exposed to media Common managementNot always similar problem Common administrative expensesDistributions of funds Larger community recognitionConfusion of the scope of care Learning from adults experienceOverlapping the experience Facilities for education, researchPriorities for adults research…

When God likes someone’s ways He will make Even his enemies into his friends “ When the time has come for an idea nothing can stop it”

17 Thank you