Patients’ Experiences And Expectations On Quality Of Care

Vida Augustinienė

President, Lithuanian Diabetes Association

  

European Health Forum

Austria, Bad Gastein, 1- 4 October 2003

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In October 1991, the new Lithuanian National In October 1991, the new Lithuanian National Health Concept became the main document Health Concept became the main document

describing the future of the Lithuanian health describing the future of the Lithuanian health systemsystem..

The Concept sets out the following priorities: permanent improvement of the population’s health;

disease prevention;

development of primary health care;

restructuring of medical education according to the European standards;

concentration of highly specialized health care in university hospitals.

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The National Health Concept and the resolutions The National Health Concept and the resolutions of the First National Conference On Health Policy of the First National Conference On Health Policy

Formulation the necessity to develop and Formulation the necessity to develop and implement the National Health Program is implement the National Health Program is

stressed. stressed.

The main objectives of the Lithuanian Health Program for 1997-2010 are presented:

• reduction of mortality rates and an increase in average life expectancy;

• equity in health and health care;• improvement of quality of life.

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Mortality rates can be reduced by fighting the most common causes of death, cardiovascular diseases, cancer and accidents as well as reducing infant mortality.

Equity is understood as the possibility for every person to get the best of health potential.

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The main condition for social well-being is to aim at the development of positive attitude in society towards the maintenance and improvement of health. Quality of life is an important health care issue, requiring a significant adjustment of priorities and the reallocation of resources should not be used only to treat diseases and prolong life. People with disabilities and those suffering from chronic diseases, especially during the terminal stages, should have adequate conditions for the improvement of their quality of life.

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• In October 2002, the In October 2002, the Health Care Health Care Quality Assurance ConceptQuality Assurance Concept was was authorized by the order of the Health authorized by the order of the Health minister.minister.

• In September 2003 a working group for preparing Health Care Quality Assurance Program was created.

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There are many laws that regulate There are many laws that regulate rights of patients:rights of patients:

Constitution of the Republic of Lithuania; Civil Code of the Republic of Lithuania; Law of Health Insurance; Law of Patient’s Rights and Injury Compensation; Other laws of the Republic of Lithuania.

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Health care reform in Lithuania has aimed to increase patients’ choice, strengthen patients’ rights and increase quality of care while maintaining accessible health care for consumers of health services.

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In practical situationIn practical situation patients are dissatisfied patients are dissatisfied with the health care. with the health care.

The main reasons for dissatisfaction are:The main reasons for dissatisfaction are:

Systemic reasons - deficiencies in the health care system • no possibilities to choose the doctor• difficulties in getting to a specialist (patients need a referral

from GP) • bureaucracy (physicians do not see patients but fill the papers)• high cost of services (dental treatment, consultations of

psychiatrist, expensive medications – a barrier to obtaining needed treatment)

• lack of education • no attention (and financing) for prevention of cronic diseases

and their complications• financing of the services, medications and means of medical aid

is limited

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Institutional reasons - deficiencies in Institutional reasons - deficiencies in provision and quality of service:provision and quality of service:

• waiting, long queues (long registration procedure,

some hours at the physicians’ office)

• lack of medical equipment (especially diagnostic

services)

• inadequate health care service quality (provided in a

hurry, poor service culture)

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Individual reasons - deficiencies in physicians’ attitudes, skills and work:

• lack of competence of GP• physicians’ indifference, lack of attention, rudeness• lack of responsibility, negligence • lack of information (on disease, perspective, way of treatment) • no money – no service (bribery, additional payment

for better service) 

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Conclusions:Conclusions: At present, the quality of At present, the quality of life in Lithuania is not evaluated and life in Lithuania is not evaluated and

observed, therefore the main prerequisite observed, therefore the main prerequisite for the improvement of it is absent.for the improvement of it is absent.

   Though there are many laws in Lithuania that

regulate patients’ rights there is still no policy of health superintendence orientated to the patient. There are still no possibilities to receive safe and effective medical service. And for those who render support it is very difficult to compete in the sphere of medical service under the same conditions.

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Because of the institutional financing patients not always get necessary help, they are often forced to pay for the services that are insured by the obligatory insurance of health. The financing of the services is limited (inquests), independently of the patient’s choice the quality of services is rather bad.

The worst thing is that the patient is still not a target of the Lithuanian health policy. While making decisions the representatives of patients’ organizations are not regarded. That’s why it is necessary to consolidate juridical and institutional defence of patients’ rights in the laws of the Patients’ Rights Defence and Health System.

The quality of health care is priority issue only in the majority of health policy documents, but it has until now been practically non-existent in Lithuania.

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StrategyStrategy

The assessment of quality of life should be included into existing programs for the monitoring and improvement of health. The development of the programs for the improvement of quality of life should be based on scientific results by the joint efforts of all government, research, health care institutions, patients and their organizations. The quality of life for the Lithuanian population must be improved.

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Role of patient organizationsRole of patient organizations

At present the awareness of patients’ rights is growing in country. Patients join into different patients’ organizations. The role and influence of these organizations is growing in Lithuanian health policy.

In 2002 the Council of Representatives of Patients’ Organizations of Lithuania (CRPOL) was established on the initiative of the Lithuanian Diabetes Association.

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The achievements of the CRPOL:The achievements of the CRPOL:

In 2003 the Health Ministry of Lithuania confirmed a new Council Of Obligatory Health Insurance (CRPOL). The president of LDA and chairwoman of CRPOL was elected to be a representative of patients’ organizations.

In 2003 Health Department of Parliament of Lithuania invited the president of LDA and chairwoman of CRPOL to be a supernumerary expert.

Representatives of CRPOL are invited to participate in working groups, created by the Health Ministry, the State Patient Cash of Lithuania; to different meetings and conferences of State institutions.

  ROLE OF THE LITHUANIAN ROLE OF THE LITHUANIAN DIABETES ASSOCIATIONDIABETES ASSOCIATION

Vida Augustinienė Vida Augustinienė President, Lithuanian Diabetes AssociationPresident, Lithuanian Diabetes Association

European Health ForumEuropean Health Forum Austria, Bad Gastein, 1- 4 October 2003 Austria, Bad Gastein, 1- 4 October 2003

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DIABETES IN LITHUANIADIABETES IN LITHUANIA

Area 65,3 km²  Population of country 3,5 mln  Registered number: of people with type 1 diabetes >8 thousand of people with type 2 diabetes >50 thousand of children with diabetes about 400  Number of members

of the Association > 5 thousand

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LITHUANIAN DIABETES LITHUANIAN DIABETES ASSOCIATIONASSOCIATION

  MEMBER OF THE INTERNATIONAL MEMBER OF THE INTERNATIONAL

DIABETES FEDERATIONDIABETES FEDERATION

MISSIONMISSION     To prevent diabetes

and to improve livesof all people

affected by diabetes

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GENERAL TARGETSGENERAL TARGETS

Provide assistance to all people with diabetes Organize education in diabetes management and care Promote independence, equity and self-sufficiency for

all people with diabetes Raise awareness in the population and among carers of

health for prevention of complications and of diabetes itself

Remove hindrances to the fullest possible integration of the people with diabetes into society

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ACHIEVEMENTS (1989 – 2003)ACHIEVEMENTS (1989 – 2003)ORGANIZATIONAL MATTERSORGANIZATIONAL MATTERS

• Founding of the Lithuanian Diabetes Association (09 12 1989)

• National Diabetes Programme (1991, confirmed by Ministry of Health)

• National St Vincent Diabetes Task Force (1993)

• Premises, telephone and fax (since 1994)

• “Hot line phone” (since 1994)

 

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ACHIEVEMENTS (1989 – 2003)ACHIEVEMENTS (1989 – 2003)ORGANIZATIONAL MATTERSORGANIZATIONAL MATTERS

• Consultations of physician-endocrinologist, education (since 1994)

• Checking of glucose in blood, cholesterol in LDA (since 1996)

• Closer contacts with the Lithuanian Parliament, the Ministries Of Health, Social Security And Labour, Education, the Board Of State Social Insurance, the State Cash Of Patients, other institutions and mass media 

• 50 Diabetes Clubs, Society Of Nurses-Diabetes Educators, Society Of Weak-Sighted And Blind People With Diabetes, 5 permanent supporters (About 5 thousand members)

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ACHIEVEMENTS (1989 – 2003)ACHIEVEMENTS (1989 – 2003)ORGANIZATIONAL MATTERSORGANIZATIONAL MATTERS

• Founding of the Council Of Representatives Of Patients’ Organizations Of Lithuania

(CRPOL, 28 10 2002)

• In 2003 Health Ministry of Lithuania confirmed a new Council Of Obligatory Health Incurance (COHI). The president of LDA and chairwoman of CRPOL has been elected to be a representative of Patients’ Organizations

• In 2003 Health Department of Parliament of Lithuania invited the president of LDA and chairwoman of CRPOL to be a supernumerary expert

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SOCIAL CONDITIONS AND RIGHTSSOCIAL CONDITIONS AND RIGHTSFOR PEOPLE WITH DIABETESFOR PEOPLE WITH DIABETES

20 per cent from MSL a month compensation for food (since 1991)

The guide to better diabetes care: rights and roles” in Lithuanian language (since 1992)

Driving license for the personal car (since 1992) 

50 blood glucose monitoring strips a year free of charge for people with 1 type diabetes (since 1994)

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SOCIAL CONDITIONS AND RIGHTSSOCIAL CONDITIONS AND RIGHTSFOR PEOPLE WITH DIABETESFOR PEOPLE WITH DIABETES

• 150 blood glucose monitoring strips a year free of charge for all people treated by insulin (for pregnant women – 300) (since 1997) 

• Selfcontrol devices on the favorable conditions for all the members of LDA (since 1997)

• Extension of list of specialities to be studied by people with diabetes in higher schools (since 1994)

•  Human insulins, plastic syringes, tablets available free on prescription

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EDUCATION AND EMPOVERMENTEDUCATION AND EMPOVERMENTOF PEOPLE WITH DIABETES

Educational camps for children and youth with diabetes (since 1990) 

Assesment of skills and knowledge of the children and youth with diabetes in summer camps (since 1997)

Outpatient Clinics with Foot Care Rooms and Diabetes Schools (since 1993)

Conferencies and seminars for physicians, nurses and people with diabetes (since 1994) 

Newspaper “DIABETES” (since 1994) 

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EDUCATION AND EMPOVERMENTEDUCATION AND EMPOVERMENTOF PEOPLE WITH DIABETESOF PEOPLE WITH DIABETES

Various printed materials in Lithuanian language (since 1995) 

Association’s information on cassettes for blind and weak-sighted people with diabetes

(since 1995) 

Education materials on video cassettes

(since 1994) 

Health Passport Diabetes (since 2002)

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PUBLIC AWARENESSPUBLIC AWARENESS

World Diabetes Day (since 1993) Poster presentations and seminars in the exhibitions

“BaltMedica”, “Health and Beauty” in Lithuania

(since 1998) Chapter in the magazine “Patient” for LDA

information (since 2001) Information on the Lithuanian radio, TV, in the press Meetings in the Parliament of Republic Of Lithuania,

State Cash Of Patients, Ministry Of Health with the President Of Republic of Lithuania

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WORLD DIABETES DAYS IN LITHUANIA WORLD DIABETES DAYS IN LITHUANIA RESULTSRESULTS OF CHECKING GLUCOSE IN THE OF CHECKING GLUCOSE IN THE

BLOODBLOOD 

In year

Number of persons who tested their blood

Number of persons with rather high

glucose level

 

%Figures taken from

regional clubs(number)

1993 1943 100 5.1 20

1994 1272 80 6.0 9

1995 3249 295 9.0 31

1996 2880 369 13.0 24

1997 2387 186 8.0 27

1998 1829 130 7.1 20

1999 2485 230 9,3 28

1999 2328 321 13,7 Korys

2000 3064 316 10,3 26

2001 694 143 20,6 LDA

2001 4656 996 17,7 31

2002 6883 1208 17,8 37

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WORLD DIABETES DAYS IN LITHUANIA WORLD DIABETES DAYS IN LITHUANIA RESULTSRESULTS OF CHECKING GLUCOSE IN THE OF CHECKING GLUCOSE IN THE

BLOODBLOOD

These persons who had high level of glucose, were suggested to undergo a proper health examination.

  Date of such test has been presented to the

Ministry Of Health.

© Lithuanian Diabetes Association

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INTERNATIONAL CO-OPERATIONINTERNATIONAL CO-OPERATION

Twinning programme between the LDA and Danish Diabetes Association (1992 - 1995)

Joining the IDF (1994)

Presentations of LDA in the EASD, SVD, IDF Conferences, permanent contacts with WHO, IDF representatives

The I and IV Conferences of Diabetes Associations from Baltic Countries organized by LDA (1998, 2003)

 

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DIFFICULTIESDIFFICULTIES

Lack of formal strategy of Government towards the prevention and cure of diabetes and its complications

Public awareness is still insufficient Many people with diabetes are undiagnosed Many people are with long-term complications

as a result of uncontrolled diabetes About 700–900 new cases of invalidity every

year because of diabetes complications

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DIFFICULTIESDIFFICULTIES

Lack of motivation among doctors who are still not emphasizing the importance of self-monitoring to people with diabetes (especially people with type 2 diabetes)

Education of people with diabetes is still not adequate

Some out-patient diabetes centres with foot care rooms and diabetes schools are closed

Shortage of means of self-control Difficult financial situation of people with

diabetes (low pensions, many unemployed)

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CONCLUSIONSCONCLUSIONS The interests of all people concerned with diabetes,

whether they live or work with disease, are best served by joining together into one national association. The association includes people with diabetes and their families as well as health care professionals, scientists, physicians, and allied health personnel. Having only one national diabetes association in each country will ensure a single voice for diabetes in the country.

Lithuanian Diabetes Association has done a great job in 1989-2003 a charity helping people with diabetes and improving diabetes care in country.