Take Matters Into Your Own Hands

ČSH

Next year, the Czech Hemophilia Society will enter its twenty-eighth year of existence. That is long enough for everyone to be able to evaluate its positives and negatives, to reflect on what can be improved, what to abandon, and what new ideas to introduce. A change of year is a fitting occasion for taking stock and making plans. Before we wish each other all the best, let us reflect. All activities of the Society have stabilised, and everyone can calculate what to expect in the coming year. Members and supporters will once again gather at regular events, consuming what the Society Council serves them. The menu has remained the same for several seasons -- alongside the regular Society agenda, there are World Haemophilia Day celebrations with a rich programme for adults and children, regional seminars, and the autumn highlight in the form of the large "Together About Haemophilia" meeting. And this is where we need to pause.

This year, the Hotel Jezerka near Sec was replaced by the Aquapark in Cestlice, and once again everything was met with great interest. Many dozens of participants came, most of them praised the programme and left feeling that their time was not wasted. During the weekend, Council members repeatedly asked participants to cooperate in completing a questionnaire for the next instalment of the survey "How Czech Haemophilia Patients Live." After five years, new data needed to be collected and compared with the data from 2011. Pre-stamped and addressed envelopes with forms were available; all that was needed was to fill them in on the spot or at home in peace and drop them in a postbox. Those who preferred online communication could do so as well -- everything is described in detail in one of the previous articles on this website. As if that were not enough, each treatment centre also received addressed envelopes with the Society's address and the same content, i.e. the questionnaire. And how many completed forms were returned? Out of several hundred Society members, eleven bothered to comply with the Council's request. Yes, that is the picture of how much the membership cares about creating an objective picture of the haemophilia population's situation. So that it can be used, trends can be identified, and areas for improvement can be pinpointed. Several people worked on the preparation, mostly without remuneration of course, but significant costs arose from the creation of statistical materials by professionals, distribution of questionnaires, purchase of postage, and so on. All was in vain -- people from all over the country are happy to come for entertainment at an attractive venue of an exclusive hotel, to meet friends at a chateau and so on, but devoting ten minutes to ticking a few extremely useful answers in a questionnaire is already beyond their interest.

The end of the year thus found us feeling disillusioned and frustrated. Again and again it becomes apparent that Society members care about very little. Yet the survey results were not meant to please their authors, but primarily to benefit those they concern. Would it not be worth searching your conscience, making a few strokes with a pencil, and posting the envelope? Or visiting https://goo.gl/forms/jOKjP6Zgv8ltECgs1 and clicking a few times? Those options still exist.

In a week, Christmas trees will be lit, people will wish each other peace, comfort, moments of love and understanding, and will choose their New Year's resolutions. We wish you to enjoy it all in the company of your closest ones in an atmosphere of understanding and harmony. And also with the awareness that everyone mostly holds their fate in their own hands, that with minimal effort they can do a lot for themselves and others. And that is, after all, one of the main missions of our Society, isn't it?