• The members of The Asthma and COPD Society, V.b.b.A are all patients with "Fellow Sufferers-Contact"
• During hospitalization, we organize swimming and other sports for patients as part of their recovery process
• We provide information to patients prepared from the "Patient-View"
• We are experts by experience
• We also offer information to health-care professionals.

Mr. Chairman, ladies and gentlemen,

I am very pleased to have the opportunity to tell something about the need for a patient organisation, especially in chronic diseases and how our patient support-group is acting in the Netherlands.

Besides, I really do hope, that this conference in the famous and beautiful town will be a next step to start patient support groups in your country.

Before I come to the importance of a patient organisation, I do have to tell You something about our history.

Our Asthma and COPD Society is officially founded in 1955, September 28, and consists 100% of people suffering with asthma or COPD. 

It is one of the oldest, still existing, categorical patient organisations in the Netherlands.

We are a 100% lay organisation.

The board as well as the executives are volunteers.

We have about 2300 members, which is only 1 promille in relation to the total asthma and COPD patient group in the Netherlands.

About 2 million people are suffering with asthma and COPD, of which about 400.000 people do take physic two or more times a day.

The informal start of our society was shortly after World War II, by a few local discussion groups, under supervision of late Professor Dr. J.J. Groen and Doctor H. Pelser, both specialists for internal diseases.

Together with their patients they discussed on a equal base the problems they came across - patient as well as physician - suffering from or treating the disease.

The patients were also taught how to supervise these discussions, which was the actual beginning of the 'fellow suffers contact'.

This meant breaking very new ground, which proved to be a epoch-making initiative.

Discussion groups are still a form of therapy.

The aim of our Society, dating back from that time, is still valid and is as follows:

"Learning how to handle your disease, thus living as relieved as possible".

Again, our society is a 100% pure patient organisation, with a board of management entirely consisting of volunteers and also suffering asthma and COPD.

As fellow sufferers we start discussion groups, sick-visiting, house-to-house calls as well as schooling-programmes, information programmes and the so called re-activation or rehabilitation programmes.

All these activities are directly meant for our members, candidate members as well as those people who are concerned in asthma and COPD.

In relation to taking our medicine, we do have a very important message.

In spite of the fact that many patients have to take their medicine a number of times a day, it is very important to give information on medicine, regular therapy and how to take your medicine most effectively, because it is well known, that more than 70 percent of the people do not take their medicine the right way and now and then even forget to take the medicine that does not show immediate result.

Apart from that it turns out that in many cases people suffering from asthma and COPD know only a little of their disease. And not only patient. But also people in their direct neighbourhood are insufficiently informed about asthma and COPD.

Therefore informing family, relatives, school, colleagues, friends and acquaintances on the many facets that go with the disease has also a high priority.

We do think, that only in this way it is possible that asthma and COPD patients will be judged more kindly, even between themselves.

In our opinion emancipation of patients as well as nearest relations has also to play an important role in this process and has to be improved.

And, let us not forget, the contacts between companions in distress. It happens to often, that everyone thinks that he or she is the only one with all these disaster.

You see, we can not sit down and look.

There is always a lot to do.

Individually and in groups.

The almost 40 contact addresses of our society, spread over the country, are trying to organize all the activities in which everyone can participate.

For instance:

Adjusted sports under expert supervision, so-called post-therapeutic sports, for those people with severe asthma who absolutely cannot join the regular sports clubs but still need motion, because our physical condition is very important to fight our disease.

We also have the so called recreative sports, ment for people with moderate asthma or COPD.

Especially those people who know and want to take their own responsibility, but (still) have insufficient capacity to participate in regular sporting clubs.

The aim is, that after a while these people can go on, finding their own way without help of the patient organisation.

We certainly hope that they will remain members of our society.

Members of the board, advisers and contact persons do also take care of the patient's interest.

They do this by taking part in joint-meetings, which initiate national activities as well as regional or local activities.

We are now trying to start a self-management plan.

Not only from the view of our doctors, but from our own patient view.

You will understand, that we have to do this be very carefully.

We do need a scientific support, otherwise our self-management plan doesn't have any value.

A few minutes ago, I have told you that we were a lay organisation.

But, as you have heard, we are more than just a lay organisation.

We are experts by experience, a very important new supply on the medical, physical and psychological treatment, because:

* we have learned to handle our emotions

* We have learned to look back

* We have learned to use our experience in the daily life.

Our experiences have really become an expert knowledge.

But what more can we do with our knowledge by experience.

* First it is a enrichment for your own life.

You are more self-assured, stronger.

You now know that you are of the same value with your surroundings,

* You can be energetic in an organisation,

* You can support others by talking about your own experiences.

By simple being there, it is possible to act as a positive example

* Finally you could be active political, trying to remove borders, which are attending for people with handicaps.

You could have an own, positive contribution, per example in discussions about ethical aspects and the quality of service

In a word, expert by experience is a enrichment for ourselves and our society, because we are also able to support others.

In the Netherlands we join:

* the (WOCZ), an Organisation in which more than 40 organisations of Chronic Diseased are represented,

* the Counsel for Handicapped People,

* the Dutch Patient and Consumers Council, Organisations, were we can make ourselves heard in national politics and organisations of social attendants, so that our ideas and views can be fit in a our National Policy.

Apart from that we do have a close relationship with the Dutch Asthma Foundation (NAF).

In the Netherlands the Dutch Asthma Foundation is looked upon as authority number one in the field of asthma and COPD.

The aim of the Dutch Asthma Foundation is fundraising and com-batting asthma in its broadest sense, by p.e. scientific research, information and so on.

Although it is not a patient society, they do have a patient-advice board and support our society.

But I will concentrate the activities on our pure patient organisation.

What are we doing more:

By way of regular contacts of our organisation with the association of lung specialists, the general practitioners and the pharmaceutical Industry we also take care of the patient's interest in these areas too.

We are also guest speakers during courses for further education of physicians, psychotherapists, nurses and attendants.

We have our own 30 minutes video information film "Astma heb je niet alleen" (You are not the only one who is suffering with asthma), meant for medical attendants and patients as a spin-off for discussions.

The film shows us a number of patients, ranging from young till old, who have developed a way of life by which they have come to an acceptable way of handling their disease.

Consequently the board of our organisation has made a list of main points. The coming five years much attention will be paid to the following five points:

* Improvement of image.

- "We are not to be pitied, we can participate fully fledged"

- a small number of members does not mean unimportant (2300 members).

(In spite of that our organisation is looked upon as the pre-eminent patient organisation in the field of Asthma and COPD.

* Improvement of schooling and education

* Better and payable medicine

* Evening consultancies for people who want to avoid non-attendance at work or school

* If you can no longer work up to the mark (relation physical strength/workload) to have the right to (adjusted) work and maintain your income.

In conclusion I can tell you, that many patients and parents from patients have found that just by joining our Patient Society, they start to feel better.

This is partly, because often for the first time they have access to more information on every aspect of the condition through reading our literature and by attending our information meetings.

But it is also because, through our organisation, that they have the opportunity to meet and talk with people who shared and understand their own problems.

Members also find that by taking an active part in the organisation, they feel they are doing something about their asthma or COPD.

This helps not only patients and parents and their children, but many others who connected the same difficulty.

It was The International Asthma Council who gave us, as a lay organisation, in June 1992 the opportunity to discuss the quality of life of people with asthma with representatives of 14 other countries.

Today we are a full member of this council.

I have told You before, that many patients do know very little about asthma. They get their drugs and do not even know that asthma patient support groups exists in their country.

So you see there is a lot to do for patient societies. Even in our country!

There is an international charter of the International Asthma Council, which has been pronounced, to help to ensure that patients get the benefit of the best treatment available - no matter where they live -, would communicate to them that they should be questioning whether they are getting the best help.

Ladies and gentlemen I am at the end of my argument, and I will summarize:

The organised patient movement is the mouthpiece of patients. In the Netherlands we are very lucky with our high standard of healthcare, in which many experts make interesting statements about things, in which patients are involved.

There is still missing an important thing: The patients view, in which knowledge by experience is the heart of the matter.

Our knowledge by experience is not opposite of the doctors knowledge, but fashions a meaningful supplement.

I really do hope, that by revealing to you the origins and the way our organisation works, has given you some handles how to start a patient organisation in your countries.

May be this conference will be the start of it.

I also hope, that this will not be the last time that our patient is acting international.

Thank you very much for your attention.

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Bauke Talens
Griend 26
6852 GX HUISSEN HOLLAND
(Tel. + 31-263254483 Fax. + 31-263255967)