For Professionals

The complex symptoms of PWS can involve many different professionals and require a multidisciplinary approach. PWS is not just a learning disability, nor just an eating disorder, nor just about challenging behaviour, and it is very important for professionals to understand the underlying dysfunctions in PWS to be able to care for the person in an appropriate way. The PWSA (UK) provides various training packages and events which increase knowledge and awareness of the syndrome. If you would like to find out more about our training packages, please contact us.

The right to eat?
Professionals may find their judgement called into question from various quarters on the subject of whether or not it is right to allow a person with PWS to eat what they want, or not.

The balance in this situation is always this tension between respect for autonomy and need for care. The solution is ideally through co-operation and consent but if that is not possible there are limited options. Key to this is whether PWS should be considered as different from general obesity. It can be argued that people with PWS may be different given the genetic basis of the syndrome and the severity of their over-eating behaviour. Whilst they may have the capacity to consent to many things in their lives, when it comes to food the insatiable hunger so distorts their thinking that it renders them incapacitated with respect to decisions about dieting. Under those circumstances there is a duty to take over control of dieting in their best interests. Thus, one could defend limiting access to food on the grounds that it is in his/her best interest. In addition, the Mental Health Act may have a part to play, albeit very rarely, in acute situations but only then as part of a longer term strategy to establish an appropriate social care placement ideally locally.

For more on this subject, see also:

Mental Capacity Act  (you will need to register to access this part of the site. Registration is fast and free).

Case studies (you will need to register to access this part of the site. Registration is fast and free).

Press releases 
 
Reading List
Prader-Willi Syndrome: Development and Manifestations (2004) Joyce Whittington and Tony Holland. Cambridge University Press ISBN 0 521 84029 5
In this book the authors seek to identify and provide the latest findings about how best to understand the complex medical, nutritional, psychological, educational, social and therapeutic needs of people with PWS. Their approach is an integrated one, centred on the PWS phenotype. Both authors have been involved in the Cambridge PWS study,which is the largest and most rounded of the cohort studies of PWS anywhere in the world. The unique data it provides is the basis of this book.

Prader-Willi Syndrome as a Model for Obesity (2003) Eds: U Eiholzer, D'Allemand, WB Zipf. Karger ISBN 3 8055 7574 2
Proceedings from a symposium on PWS which was organized on the assumption that insights into the pathophysiology in PWS would also help understanding of normal obesity. The symposium brought together PW researchers and leading researchers of energy regulation systems to exchange information about the current state of their research.

The paradox of Prader-Willi syndrome: a genetic model of starvation (2003)
Anthony J Holland, Joyce Whittington, Ella Hinton
The Lancet, Vol 362, Sept 20, 2003, 989-991

Autonomy and Intellectual Disability: the case of prevention of obesity in Prader-Willi Syndrome (2002) RH van Hooren, GAM Widdershoven, HW van den Borne, LMG Curfs
Journal of Intellectual Disability Research Vol 46, part 7, pp560-8, Oct 2002.

A Comprehensive Team Approach to the Management of Prader-Willi Syndrome (2001) Ed. U Eiholzer.
Available online at http://www.ipwso.org/management_of_pws.html

Genetically determined obesity in Prader-Willi Syndrome: the ethics and legality of treatment (1999) Anthony J Holland and Josephine Wong.
Journal of Medical Ethics 25, 230-236

Eating themselves to death: Have "Personal Rights" gone too far in treating people with Prader-Willi Syndrome? (1997) Elisabeth M Dykens, Barbara J Goff, Robert M Hodapp et al.
Mental Retardation, August 1997, 312-313