Need for change of paradigm

The 2008 report of World Health Statistics was released by WHO, that underlines the increasing need in the change of paradigm of organisation of health services:

The global burden of disease is shifting from infectious diseases to noncommunicable diseases, with chronic conditions such as heart disease and stroke now being the chief causes of death globally, according to a new WHO report published today. The shifting health trends indicate that leading infectious diseases – diarrhoea, HIV, tuberculosis, neonatal infections and malaria – will become less important causes of death globally over the next 20 years.World health statistics 2008 is based on data collected from WHO's 193 Member States. This annual report is the most authoritative reference for a set of 73 health indicators in countries around the world. These are the best available data and they are essential for painting the global picture of health and how it is changing.

"We are definitely seeing a trend towards fewer people dying of infectious diseases across the world," said Dr Ties Boerma, Director of the WHO Department of Health Statistics and Informatics. "We tend to associate developing countries with infectious diseases, such as HIV/AIDS, tuberculosis and malaria. But in more and more countries the chief causes of death are noncommunicable diseases, such as heart disease and stroke."The statistical report documents in detail the levels of mortality in children and adults, patterns of morbidity and burden of disease, prevalence of risk factors such as smoking and alcohol consumption, use of health care, availability of health care workers, and health care financing. It also draws attention to important issues in global health, including:Maternal mortality: in developed countries, nine mothers die for every 100 000 live births, while in developing countries the death rate is 450 and in sub-Saharan Africa it is 950.Life expectancy trends in Europe: life expectancy in eastern Europe increased from an average of 64.2 years in 1950 to 67.8 years in 2005, representing an increase of only about four
years compared with 9 to 15 years for the rest of Europe.

Health-care costs: 100 million people are impoverished every year by paying out of pocket for health care.Coverage of key maternal, neonatal and child health interventions: four out of 10 women and children do not receive basic preventive and curative interventions and at current rates of progress it will take several decades before this gap is closed.World health statistics 2008 is the official record of data produced by WHO's technical programmes and regional offices in close consultation with countries and in collaboration with researchers and development agencies. In publishing these statistics, WHO underlines continuing health challenges and provides an evidence base for strategies to improve global public health.

Chronic conditions require life-style changes that can be facilitating the change of paradigm where the affected persons are seen as a resource and are supported to organise themselves in groups and organisations that acquire information and skills for their own care. Such groups and organisaitons become partners of health services and part of multisectoral teams in helping all persons newly diagnosed with chronic conditions to take better care of themselves.

Self-Mutual help groups from Brindisi Italy

Recently I was in Brindisi in south of Italy for a meeting on mental health. In this meeting, Two self-help groups of users of psychiatric services spoke about their experiences that I have translated into English to share on this blog. (Sunil Deepak)

"LOVE THE RAINBOW" GROUP

A group of users and family members of mental health services called “Ama L’Arcobaleno”, literally “Love the Rainbow” talked about their group work. Rosalia Ferrnandini, a member of the group made a presentation

This group is heterogenous and the members have different medical care needs. So they are not strictly within the goals of this blog since till now they have never discussed issues related to better understanding of their mental illness and their own medical care needs, but this is another possibility for them in the future. At the same time, this group raises some general issues that are useful for all self-help or self-care groups.

Speech of Rosalia Fernandini

I am going to read my speech as I feel that I am too agitated emotionally to remember all the things that I would like to say. Actually it is not my speech or something written by one or two persons but rather all our group members have contributed to it.

Officially our group “Love the Rainbow” was born on 2 February 2005 when 9 of us met for our first meeting. Beofre this meeting, some of us, on the suggestion of our socisal assistant, we had gone to the neighbouring city of Martina Franca, to attend some meeitngs of a similar group there. Since that experience was positive so we decided to make our own group.

Why did we start our self-mutual support group?

Francesco: “I decided to come to the meetings because I could talk and discuss problems.”

Carmelo: “I came to meet people who face similar problems that I face. People who have never faced these problems can’t understand them.”

Maria: “I like being with othger persons. After my father’s death I was sad. Teresa, one of my friends was coming to this group and I liked it.”

Vincenzo: “I like passing one and half hour with other persons.”

Penelope: “To meet persons who have same problems as I. Medicines are important but it is equally important to communicate.”

Stella: “It is like a window on the world. I used to avpoid so many things. Here in the group I feel at ease. We who have suffered so much we can’t be hypocrites.”

Teresa: “I was ill psychologically and I didn’t feel like doing any thing. I started coming here so that I won’t become completely isolated.

Antonio: “I like it when we make experiences of going around and understanding our environment.”

Manuela: “I liked the group because I felt at home here, it helped me to overcome and face my separation. It is like an anchor, a point of reference. I felt that in the group people loved me.”

Antonio: “In the group I feel free and I can talk to others.”

Teresa: “I was hoping that the group would accept me as I am. The group understood me. Slowly I feel better.”

Giuseppe: “I like talking to peopole, to listen to their stories, that serve me as examples.”

Rosalia: “I participate in the group because I belive in social relationships. For me it is important to have relationships with other persons. I thank the group for having given me this opportunity for meeting others.”

Our basic and shared rules

To be punctual: Being punctual is a sign of affection and respect for others.

Confidential: Everyone is free to tell their secrets, and this would not be possible if people didn’t have confidence that everything they say remains with us as confidential and does not go out.

Democracy: There are no hierarchies in our group, no one is superior or inferior. All decisions are taken on majority vote.

Non-judging attitude: You must never be disrespectful towards others even if you don’t share their positions and ideas.

Committment: We have discussed this rule many times because some of us didn’t accept that others didn’t come to our appointments and it was seen as “lack of committment”. Slowly we are trying to be less rigid about it to find a point of equilibrium so that we do not ask too much from others and at the same time avoid becoming indifferent to each other.

What have we done in these last three years?

We have made many cultural, artistic, educational and just for fun visits. We are attentive towards the nature and the environment. We leqarned about the history of our city and our area. We are also attentive towards health issues. We went for check ups and we attended yoga classes. We go together to cinema and theater. Our most important activity is to help each other.

What do we wish to do?

We have started a news bullettin. Some of us have written poetry and articles. We also have a sports project. We want to meet other self-mutual help groups and share ideas with them. We want information on birth control and family planning. We want to do more cultural visits.

SELF-MUTUAL HELP GROUP OF MARCO CAVALLO CENTRE OF LATIANO

As the name indicates, this group is made of persons who all receive medical and social services at Marco Cavallo centre of a small city called Latiano. Ms. Maria Conca of this groupo made the following presentation.

We are a new groups, just a few months old but in these few months it has become a community where intensive dialogue is taking place between the service providers and users. We try to look beyond our institutional roles to look at each other and listen to each other as persons for finding solutions to our problems as persons with psychic disturbances.

As a community we are very worried about kind of wrong information that is circulated about psichiatric disturbances. The news about criminal problems often blames depression or psychic problems as the cause of crimes. Thus general public views persons with psychological disturbances with suspicion. Once communities think like this they feel that we should be closed insides sanatoriums.

People also want us to be closed away somewhere for economic reasons. The medicines, psychotherapy, other rehabilitation services all have a cost. Ideally we need a vision of mental health for all the community and not just treatment of persons with psychic disturbances but for economic reasons, people talk of closing us in hospitals. They want us to drugged with psycho-medicines, rather than having us as responsible and active citizens. We need to take back our dignity as autnomous and free subjects, capable of taking care of ourselves and our own futures.

For this reason we need to multiply experiences like this where people meet in self-mutual help groups and helping in moving towards a mental health vision for all the communities, not to go back to the old institutional models of services.

Starting a new group in Colombia

Ofelia and Rocio just told me that ASODISPIE has “multiplied”. They are going to another area of Santander, a plateau that is a bit off the beaten path, on Saturdays. There are a lot of children with Cerebral Palsy on the plateau, perhaps because they are so far away from medical care and midwifery. A group of people (family members of these kids) have formed an organization (I don’t know if they have registered with the Chamber of Commerce yet) and Henry of Asodispie is their President. He is basically getting them started. Rocio, Ofelia, Henry, Oscar and the therapists employed by Asodispie go there on Saturdays to work with the parents and children. Their plan is to duplicate the project there, although self-help groups will be difficult to form because they all live quite far from each other (it is a rural area).

This is nice news, don’t you think?

Regards,
Marlene Wiens

Self Care Groups - Comments from ASODISPIE, Piedecuesta, Colombia

Marlene Wiens translated the comments from Rocio and Ofelia of ASODISPIE (Piedecuesta, Colombia) about setting up of self-care groups:

1. Our coming together as persons with disabilities, persons with chronic conditions and/or their family members is a key first step in the process for the paradigm shift that becomes an active subject in ensuring participation, continuity and sustainability.

Comments: Meeting together helps to build participation and meetings should continue in the future. The interaction helps participants to realize the importance of the issues they are discussing. Empathy and trust develops and this leads to expression of experiences and reflection on their lives.When I asked Rocio and Ofelia the difference between “integración” and “participación” they said that “integración” is more like attendance and this is also a goal of Asodispie – to increase the attendance of their membership at meetings. But participation is something that is developed in stages.

2. Many of us do not require any specific continuing or periodic medical care. For us disability or the chronic condition may be part of our lives.

Comment: Yes, it is true, but it is important to learn about our condition in order to prevent secondary problems and to have a better quality of life.

3. Forming a group is not automatic and needs care and facilitation in the beginning. An external facilitator can be useful in the beginning. However with greater experience and capacity building, we as persons with disabilities and/or persons with chronic conditions can also play this role.

Comments: An external facilitator is important at the beginning to orientate and to review the work being done so that a productive work can be achieved. But since the facilitators will not always be there, it is important that the PWD become facilitators so the work can go on. The ideal is that the group will take their own actions. But they will still need someone to coordinate and to orientate them and these people can be from within the group. But there needs to be funds to encourage people to dedicate the time to do the coordination. In this year, the current facilitators (Rocio and Ofelia) should delegate responsibilities so that the leaders can have direction and also to Asodispie so they learn how to find resources.

4. Forming a group, sharing experiences and ideas can be a powerful tool to break our isolation, to identify and access opportunities and strategies. Groups have to be based on participation, reciprocal confidence and relationships, and this requires time. Forming groups can pass through ups and downs, so it is important not to give up but to resist and find ways of overcoming initial difficulties.

Comments: The groups provide the possibilities to achieve more things like activities and resources. Our groups had their own characteristics in terms of the way they matured – the time they took to establish relationships with each other prepared them to confront issues. The participants share common interests, which is a powerful tool and can lead to achievement of future benefits. All groups have their problems but all are active, they all have their moments of inactivity and passivity but that is normal.

5. As persons with disabilities, with chronic conditions and as family members, we may face different obstacles to find a place for our meetings, barriers to travel and access meeting places, barriers to effectively participate and share in the groups. All these need to be acknowledged so that satisfactory solutions can be sought that respect our dignities as human beings.

Comment: Each group has their own difficulties, depending on the disability. It is one of the most obvious issues that we observe and that we always take into account to have effective meetings.

6. As a group we can liaise and advocate for respect of our human rights.

Comments: First we need to come together, to act as a group in Asodispie, to understand and know our own organization and our rights. And after that, we can work with people outside of Asodispie, which will give us more force.

Creating Self-Care Groups - from Dec.07 report

How do you set up self-help groups? Under this area we are looking how persons affected with a chronic condition or persons with disability requiring regular health care support, set up a self-help group. How can you facilitate setting up of self-help groups? How do self-help groups develop over a period of time? How do they deal with conflict?

In the meeting held in Rome in December 2007, the group reached the following conclusions:

1. Coming together as group of persons with disabilities, of persons with chronic conditions and/or their family members is a key first step in the process for the paradigm shift that becomes an active subject in ensuring participation, continuity and sustainability.

2. Many persons with disabilities do not require any specific continuing or periodic medical care. For them disability may be part of their lives.

3. Forming a group is not automatic and needs care and facilitation in the beginning. An external facilitator can be useful in the beginning. However with greater experience and capacity building, persons with disabilities and/or persons with chronic conditions can and should also play this role.

4. Forming a group, sharing experiences and ideas can be a powerful tool to break isolation, to identify and access opportunties and strategies. Groups have to be based on participation, reciprocal confidence and relationships, and this requires time. Forming groups can pass through ups and downs, so it is important not to give up but to resist and find ways of overcoming initial difficulties.

5. Persons with disabilities, persons with chronic conditions and family members, may face different obstacles to find a place for meetings, barriers to travel and access meeting places, barriers to effectively participate and share in the groups. All these need to be acknowledged so that satisfactory solutions can be sought that respect dignity of persons.6. Once groups are formed, they liase and advocate for respect of their human rights.