The Professional Providers and Caregivers Board was established by IPWSO to provide support, information and to share international knowledge among professional service providers throughout the world.
Since the meeting of the first International Caregivers Conference in Herne, Germany in 2008, there has been universal support for establishing an international board of providers. The board was created to establish guidelines for best practices among caregivers of individuals with PWS and to provide a forum for providers to discuss specific issues affecting not only the individuals with PWS who reside in residential care, but issues affecting the institutions or community agencies that provide this care.
As many adults with PWS are living longer because of better weight management largely due to the environmental modifications required for managing hyperphagia, more support is required to sustain both the caregivers and the institutions that employ them in order to manage the challenges created by the syndrome. Establishing and maintaining a forum for discussing quality care for individuals with PWS who reside in group homes will assure optimal prognosis for maximum function with support across all aspects of living, including health, social function emotional stability, vocational skills, and the pursuit of individual interests.
Law enforcement & criminal law
In 2008 and again in 2009, IPWSO, with the Regens-Wagner Absberg Centre and Wittekindshof Centre, jointly hosted the first and second specialised Caregivers' Conferences in Herne, Germany. These conferences were the brainchild of Pam Eisen, Hubert Soyer, and Norbert Hödebeck-Stuntebeck and at their invitation a group of residential specialists, teachers, and medical specialists met to hammer out a set of Best Practice Guidelines and Standards of Care for those with PWS.
The conferences followed a format of lectures and workshops where the topic of the lecture was discussed in depth. Delegates shifted around from group to group, working incredibly hard and, at times, well into the night, getting conclusions ready for presentation. "This was the most hard-working conference/workshop we had ever attended, and there was no let-up! Everyone was there for the best interests of those with the syndrome. The environment of the Akadamie Mont-Ceris was perfect - it was like a small, self-contained village set inside a glasshouse. It was extremely eco-friendly and its enclosed feeling made us unite as a family."
From these two conferences came the first draft of the Best Practice Guidelines of Residential Care for those with Prader-Willi Syndrome; a compilation of the outcomes of all the work over the two years. With the help of IPWSO consultants, Jan Forster, Hubert and Norbert, this compilation was put into CD format and is now ready for distribution.
The PPCB sees this still as a work in progress and as such, is to be used as a guideline for best practices, according to each country's specific needs and cultures. They realise that not every country in the world can achieve the dream goal of having the very best residential care for those with PWS, but these guidelines are the best starting-point to make dreams become reality.
The full set can be purchased for E35 (includes postage). To order, please contact firstname.lastname@example.org
The third PPCB conference was held in Munich, August 26-28, 2018 and brought together more than 200 delegates from 20 countries.
Law Enforcement and Criminal Law
(guideline for law enforcement personnel)
Prader-Willi syndrome (PWS) is a complex, multi-stage genetic disorder that impacts the thinking, understanding, satiety, sensation and behaviour of affected children and adults. Most commonly it is identified by an uncontrollable drive to eat and the inability to perceive fullness or satisfaction with the amount of food or beverages consumed. In people with PWS the hypothalamus of the brain, which regulates hormones, does not work as efficiently as it should.
There may be times when law enforcement agencies become involved in their life, usually due to disruptive or violent behaviour, either at home or in public.This guideline is to assist law enforcement personnel in their knowledge of PWS. (read more)
Law enforcement and Criminal Law
(Guideline for what care-givers can do)
When a person with Prader-Willi Syndrome (PWS)
is in trouble with the law:
what to think about and what you can do.
The criminal justice system
Usually it is the police who are called in the event of behaviour that is thought by others to be against the law (e.g. shoplifting, hitting another person). The police may exercise some discretion based upon their assessment of the situation at the scene, varying from giving an informal warning to arresting and charging the person who is alleged to have engaged in unlawful behaviour (for example, theft or assault). If there are concerns about the person’s health at the time the police arrive, urgent medical advice may be requested. This, for example, would be important if the person with PWS appears to be displaying unusual symptoms and/or was known to have had a previously diagnosed mental illness, such as bipolar disorder or psychosis, or there is any indication that they are physically unwell.
Once arrested and out of the hands of the police, different countries will have their unique processes that are followed, but this may be a point in which the authorities (prosecution) may show some discretion. They may decide not to proceed with charges and to just give a formal warning. It is also possible that they may decide to prosecute and go to Court. Different criteria may apply in different countries, but this decision could be influenced by their knowledge of the person and how their alleged behaviour may have related to them having PWS; by whether or not, in the event of the person pleading not guilty, there is a reasonable chance of conviction; and more generally, whether it is considered in the public interest to prosecute. (Read more)
Tony Holland and Georgina Loughnan
31st March 2019
This advice has been reviewed by members of the Clinical and Scientific Advisory Board of IPWSO and by the Board of Famcare.
Get in touch and let us know how we can help you with any enquiry about Prader-Willi syndrome and how our organisation works.