Better understanding = Better lives

 With the right care and support, people with PWS can now live much longer and healthier lives. However, in too many cases, PWS is still being mismanaged - often with devastating consequences.

On Wednesday 14th May, we hosted an event for policymakers at the House of Lords to raise awareness of the challenges faced by people with PWS.

We know what good care and support looks like, but we need policymakers and professionals to understand this too, and to commit to implementing best practice.

At this event, we engaged with MPs and key stakeholders to help them understand PWS, focusing on three key challenges:

• Hyperphagia - the persistent insatiable hunger people with PWS feel and the implications this has for support needs and mental capacity.
  
• The absence of warning signs in a medical emergency - how serious injury and illness can be missed in people with PWS.
  
• The need for specialist support for people with PWS across all areas of life.
  
  

Sadly, our support team receive far too many calls where the implications of hyperphagia for people with PWS have not been properly understood by professionals. This leads to inappropriate decisions about the care and support they need, leaving people in danger, with inadequate care.