Social and community services

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    Providing the appropriate level of care for a person with PWS can sometimes challenge much of what would be deemed appropriate for any other person with learning disabilities, and sometimes the ability of the person with PWS to cope with daily life is seriously overestimated. This is often because the person presents as articulate and able to respond to questions in a reasonable manner, especially with regard to their dietary needs. Unfortunately, this often masks a much lower level of comprehension and ability to put theory into practice.

    A large minority of people with PWS have IQs of over 70, which technically takes them out of learning disability services. However, their emotional level is often very immature. They may handle situations in much the same way as a small child would - acting up both verbally and aggressively when they cannot get their own way and stubbornly refusing to move on. Seemingly trivial events  can cause major upsets.

    One of the major problem areas in caring for someone with PWS is access to food. If food is freely available, or even if there is access to garbage bins and fridges/freezers, most people with PWS will be unable to resist the temptation to eat it, with consequent rapid weight gain. There may also be moral issues such as stealing other people's food or money to buy food.

    Supported living situations require particular care in planning, as too much independence can often lead to unforeseen consequences, impacting negatively on the person's health and quality of life. Similarly, rapid staff turnover and partly-trained staff are unsettling for the person with PWS, who may take advantage of any newer or weaker staff to gain access to food.

    There are currently two major providers of PWS specialist care in the UK, with others providing specialist care on a smaller scale. All of these are independent from the PWSA (UK). Most are within small units of around 6 people with PWS. Other providers provide care for people with PWS either in supported living situations (sometimes sharing with others) or in homes for people with a mixture of learning disabilities, but supported living is also an option which is increasing, in line with local and government policies.

    It is essential that Person Centred Plans take account of the best interests of the person with PWS with regard to dietary needs, rather than what the person themselves wants to do.

    Other useful resources on this website

    Ethical and legal issues

    Behaviour management in PWS

    Educating the child with PWS

    Training and consultancy services

    Weight management

    Health care Information about aspects of PWS which may need particular attention with regard to health care