DEVELOPMENT AND STANDARDS OF PALLIATIVE CARE IN HUNGARY
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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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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

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.


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

END-OF-LIFE-CARE before 1991


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 tolack of regulation and finance)

DEVELOPMENT OF PALLIATIVE CARE IN HUNGARY


Development and standards of palliative care in hungary hungarian hospice foundation

Opening ceremony of Budapest Hospice House, 2002


Legal framework

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


Needs to lobby for policy development

NEEDS TO LOBBY FOR POLICY DEVELOPMENT

NEEDS FOR:

  • Guidelines

  • Minumum standards

  • Education

  • Public awereness


Policy development i

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


Guidelines

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


Lobby patients right at the parliament 2002

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


Policy development conference

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”


Development and standards of palliative care in hungary hungarian hospice foundation

Minister of Social Affairs at a PC Development Meeting


Development and standards of palliative care in hungary hungarian hospice foundation

Policy meeting, 2004


Development and standards of palliative care in hungary hungarian hospice foundation

OSI PC policy development meeting, 2004


Development concept for hungary

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


Development concept

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


Development concept1

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)


Minimum standars

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


Minimum standars1

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)


Development programme

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)


Development programme1

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


Development programme2

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


Successfull result

SUCCESSFULL RESULT

2 years Palliative Care project launched

by the National Health Insurance


Pc development 2004 2009

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


Barriers of development

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


Development and standards of palliative care in hungary hungarian hospice foundation

OSI Conference, Budapest, 2005


Hospice madonna budapest hospice house

HOSPICE MADONNA

BUDAPEST HOSPICE HOUSE


Development and standards of palliative care in hungary hungarian hospice foundation

Staff of HHF, 2002


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