Experience has demonstrated that individuals living with PWS can be difficult to diagnose and challenging to treat. People living with PWS respond differently to medical interventions. Professionals will find medical alerts and resources that have been developed by some of Australia’s leading hospitals.

Prader-Willi Syndrome (PWS) is a complex, multi-system disorder that changes in presentation over a person’s life. Treatments and services must be coordinated. People with PWS suffer from cognitive disabilities and high anxiety. They will need disability as well as health support when presenting at hospital as an out or in patient. Despite appearances they will probably find it difficult to comprehend hospital processes. If their expectations and assumptions are not addressed, it could escalate into disruptive behaviour. You may not see this during a short consultation. But the consequences of mis-communication will be felt by the patient and their carers for a long time to come. PWS is not like other intellectual disabilities. Parents and carers of a person with PWS can be very stressed as a result. The hospital’s Disability Liaison Office should be included.

People living with PWS are not good reporters of their own ailments and may even confabulate or lie. They have a high pain tolerance. You should seek input to any decisions from a person who knows the patient well. They have poor short term memory and any treament instructions should be given to an adult or support person who knows the patient well.

If the person is an in-patient, try at all times, to prevent the person with PWS being exposed to, or distracted by food or beverages that do not belong to them. Food security and food barrier arrangements will need to be put in place, along with support for menu choices.

People living with PWS have different bodily response to health issues and medications. The Medical Alerts booklet, reviewed by Australian medical experts, provides detail.
Royal Prince Alfred Hospital (Australia) has developed a recommended hospital admission policy for people living with PWS (guidelines)
Information for hospital emergency departments (Casualty) gives an overview of medical risks.

People living with PWS have a certain communication style when meeting professionals
They may confabulate (tell stories/lie) when meeting with you.