A multidisciplinary approach to maintain health and build individual capacity. Experienced allied health professionals, with knowledge of Prader-Willi syndrome (PWS) are vital to enable a holistic approach to good health and wellbeing. Most individuals will benefit from accessing these services at various life stages.

PWS is a very complex condition, impacting many body systems. The impact of PWS on the individual changes over time.

Most people living with PWS have many mainstream service providers involved in their care, plus disability service providers. That includes children and adults. There is a role in the NDIS called a Support Coordinator. If the patient has a paid coordinator, they may contact you to attend care team meetings or for reports.

Examples of other professions that may be involved include:

• Dietician
• Endocrinologist
• Gastroenterologist
• Occupational Therapist
• Ophthalmologist
• Orthopaedic nurse or surgeon
• Orthoptist
• Orthotist
• Paediatrician
• Physiotherapist
• Speech pathologist
• Psychologist

You can provide better service to patients living with PWS if you know a bit about the disability. There are some common characteristics that will have an impact on service delivery.

People living with PWS are not good reporters of their own ailments.
They have a certain communication style when meeting professionals.
They may confabulate (tell stories/lie) when meeting with you. There is consensus amongst experts about common behavioural characteristics such as temper outbursts, high anxiety, rigidity, obsessions and social cognition deficits. Details are in the paper ‘Behavioral features in Prader-Willi syndrome (PWS): consensus paper from the International PWS Clinical Trial Consortium’ when meeting with you.