Mental Capacity in Prader-Willi Syndrome
The Mental Capacity Act (MCA) protects individuals’ rights to make decisions. However, for those with Prader-Willi Syndrome (PWS), especially regarding food and finances, the MCA can present challenges.
PWS involves a biological drive to eat excessively and difficulties with impulse control and risk awareness. Although individuals may understand risks intellectually, neurological factors often impair their ability to regulate behaviours that threaten their health and safety. Similarly, someone may appear to have the capacity to manage finances, but PWS involves compulsive or risky spending, especially around food.
Because the MCA focuses on cognitive understanding, it may not fully address these behavioural complexities. Professionals must therefore balance respecting autonomy with safeguarding wellbeing.
There have been multiple cases of people with PWS dying from overeating shortly after they were deemed to have mental capacity around food and money.
As well as dying from obesity-related complications, people with PWS can and do die from gastric rupture following a single binge eating episode, even if they are not obese.
Experience shows
- People with Prader-Willi Syndrome do not have capacity to make decisions about food and money
- To allow someone with PWS to have free access to food and/or money is a serious safeguarding risk due to reflect
