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DEVELOPMENT AND STANDARDS OF PALLIATIVE CARE IN HUNGARY Hungarian Hospice Foundation

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

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DEVELOPMENT AND STANDARDS OF PALLIATIVE CARE IN HUNGARY Hungarian Hospice Foundation

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  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 MOSTLYIN HOSPITAL, ALONE, IN PAIN, WITHOUT DIGNITY.

  3. 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 END-OF-LIFE-CARE before 1991

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

  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

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