The role of patient organizations in the care for the patient and his/her family is becoming increasingly important. Fortunately, this is not only seen by all those involved, but patient organizations are also increasingly heard and involved in (medical) care.
Previously, it was mainly about the patient and the doctor, with the doctor mainly focusing on the medical aspects. However, in addition to the medical aspects of living with a (rare) condition, there are a number of other important aspects. The condition also very often has an impact on how the patient feels and sees themselves. How do friends react to a condition and how are things going at school on a cognitive (learning performance), physical (sports) and social (belonging to a group) level? What is the impact on the parents and the other brothers and sisters?
Often the patient is looking for someone to talk to about his/her condition. Someone who understands the patient from their own experience and knows what they are up against. This applies to both the patient themselves and their parents and brothers/sisters. Talking to someone with the same condition or parents of a patient who talk to other parents often proves to be very pleasant. People can exchange experiences, support each other and gain useful information. These experienced experts or ‘fellow sufferers’ (we are still looking for a synonym for this word with a positive connotation) can be found via patient organisations. And the patient organisation plays a key role in this!
With our community we want to improve the quality of life of people with vascular malformations. CMTC is a rare condition and that is why we think it is important that everyone who has CMTC, or other blood vessel abnormalities, can get in touch with each other.
As a CMTC-OVM patient organisation, we therefore regularly organise events where (parents of) patients can meet and talk to each other. We look for a relaxed and beautiful environment for this. Our member conference usually takes place in a beautiful hotel in nature. All kinds of activities are organised for the children so that parents can follow the programme undisturbed and talk to each other. In recent years, our family day has taken place in the Efteling, where the whole family can enjoy themselves.
At the beginning of this article we discussed the classic model of only doctor and patient. We propose to look at the care around the patient in a different way, in which besides the doctor also the patient organization and family play an important role. We then arrive at the ‘CMTC-OVM Klaverblad model’ that represents holistic care (see figure).
This model includes all primarily involved parties.
With our community we want to improve the quality of life of people with vascular malformations. CMTC is a rare condition and that is why we think it is important that everyone who has CMTC, or other blood vessel abnormalities, can get in touch with each other. We cannot do this without the sustainable support of our donors or input from our involved members.
