People with Prader-Willi Syndrome (PWS) often present as cooperative, knowledgeable and highly capable of making their own decisions. They appreciate responsibility and respect. Adults with PWS, who are intellectually able, usually resent the fact that parents or other family members want to accompany them to appointments with professionals invovled in their health care or life matters. This can create much frustration for parents and families as well as the professionals. It can also lead to misleading information being received and incorrect action being taken on the part of the professional.
How can family members avoid difficult situtions based in misrepresentation and misinterpretation while maintaining respect for and avoidance of belittling of the person with PWS?
We know people with PWS can be very suspicious and guarded when it comes to disclosure of their “negative” traits, but people interviewing them, whether it be for health or a social issue need to be aware of the characteristics of PWS.
People with PWS also have the right to health and social care provided by an informed professional. Given that people with PWS make up a very small percentage of the population, PWS-informed professionals are not common.
This information sheet covers important facts about PWS and tips to enhance the communication between the person with PWS and the professional with whom they are meeting. It highlights why knowledge of PWS is important and what can happen if it is not understood. Parents and/or caregivers of people with PWS have a“responsibility of care” to provide this information. For best practice of health management they need to be heard, as this information will not be given to the professional by the person with PWS. If possible, maintain regular follow-up with the same professional, so a relationship can be developed between them and your person with PWS and yourself.