1. DEVELOPMENT AND STANDARDS OF PALLIATIVE CARE IN HUNGARY Hungarian Hospice Foundation Dr. Katalin Muszbek

2. THE STATE OF ART OF CANCER Hungary Leads the WHO cancer death statistics Cancer incidence 57.000 (new cases per year) 33.000 cancer deaths (0.0033 mortality rate) second major cause after cardiovascular MOSTLY IN HOSPITAL, ALONE, IN PAIN, WITHOUT DIGNITY.

3. END-OF-LIFE-CARE before 1991 Not a separate entitiy in national health system: oncology, geriatrics,poor conditioned nursing homes provedes care for terminally ill patients No government policy at all, palliative care does not exist legally No education, not included into health care provders curriculum Other associations, national boards does not recognize its importance

4. DEVELOPMENT OF PALLIATIVE CARE IN HUNGARY 1991 Hungarian Hospice Foundation 1991-1995 isolated initiatives 1995 Hungarian Hospice - Palliative Association 1995-1997 development 2000 development stops (due to lack of regulation and finance)

5. Opening ceremony of Budapest Hospice House, 2002

6. LEGAL FRAMEWORK  1996 regulation on hospice home care  1997 new health law – first time involves patients rights,and right to hospice care  Drug availability- OK  BUT! Lack of regulation

7. NEEDS TO LOBBY FOR POLICY DEVELOPMENT NEEDS FOR:  Guidelines  Minumum standards  Education  Public awereness

8. POLICY DEVELOPMENT – I. 2000-2002 Guidelines I. II Hungarian Hospice-Palliative Association collaboration with: Ministry of Health and Social Affairs National Health Insurance Patients associations Hungarian Soros Foundation National Home Care Association

9. GUIDELINES Basic principles Levels of care (primary, hospice, specialist) Different settings, organisational forms, accessibility Personal and material requirements Multidisciplinary team Scope of activities and competencies Symptom control, psychosocial support Palliative care for children Efficiency, evalution Education, research Documentation, charts

10. LOBBY PATIENTS’ RIGHT AT THE PARLIAMENT 2002 Interpellation at the Hungarian Parliament Collaboration of Hungarian Hospice Palliative Association, Hungarian Cancer League and Associaion of Human Rights Health act includes dignity and pain relief: does it act? Health Committee investigation with great publicity

11. POLICY DEVELOPMENT CONFERENCE 19-20 April 2004 – Organized by OSI Collaboration WHO and Catalonian WHO demonstration Project, Death in America project Hungarian participants: Ministry of Health, National Health Insurance, Universities, Association of Hospitals, Nurses Association, Patient Organisations, etc. Aim: to develop action plans and sign a consensus paper „National Palliative Care Development Plan 2004-2014”

12. Minister of Social Affairs at a PC Development Meeting

13. Policy meeting, 2004

14. OSI PC policy development meeting, 2004

15. DEVELOPMENT CONCEPT FOR HUNGARY Aims: A good coverage with more inpatient and home care settings Equity of access An integrated hospice-palliative care modell financed by NHIF

16. DEVELOPMENT CONCEPT Based on general home care services and chronic bed hospitals – part of a reform Advantages of integration Rely on existing capacities and services Accessibility will improve Rely on existing personal resources Material requirements

17. DEVELOPMENT CONCEPT Minimum standards Quality monitoring system Information system Development programme Legal framework New hospice code Regulation of Ministry of Health about minimum standards (March 2004)

18. MINIMUM STANDARS Patients with life-limiting illness, in the terminal phase of their life 80% with cancer 20 % with HIV/AIDS and motor neuron diseases

19. MINIMUM STANDARS Multidisciplinary team (trained staff - accredited hospice training) Core: nurse, psychologist, coordinator, physician with hospice training, training on palliative medicine, practice of 6 month. Extended: dietician, physio, social worker, clergymen, occupational therapist)

20. DEVELOPMENT PROGRAMME Complexity and continuity of care Hospice home care (3x50 days) Inpatient care, palliative units (at least 10, at last 20 beds, cooperation with a hospice home care team is obligatory)

21. DEVELOPMENT PROGRAMME Hospice home care 2 per county 6 per region 5 in Pest county 5 in Budapesten Inpatient care 30 beds per county 50 beds in Budapest

22. DEVELOPMENT PROGRAMME Advantage during the evaluation of the applications: Complexity (home care AND inpatient unit) Linkage with other health care services Practice in providing hospice-palliative care

23. SUCCESSFULL RESULT 2 years Palliative Care project launched by the National Health Insurance

24. PC DEVELOPMENT 2004 - 2009 2004 - New regulation on hospice palliative care 2004-2008 - Palliatve Care Development Project, financed by NHIF 2006 – PC is a part of the National Cancer Program 2009 – New regulation for broadening the scope of palliative home care BUT! Gradual and postgradual education on PC on Medical Universities

25. BARRIERS OF DEVELOPMENT Low interest of physicians Lack of gradual and postgradual education on PC on Medical Universities Access to PC all over the country ? Financial difficulties

26. OSI Conference, Budapest, 2005

27. HOSPICE MADONNA BUDAPEST HOSPICE HOUSE

28. Staff of HHF, 2002