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, in mixed ability and condition settings, the needs of the other residents must always be considered.
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.
The PWSA (UK) hosts a residential care and supported living forum from its offices in Derby three times a year. This is open to all care providers who wish to meet to share concerns and good practice. If you would like to attend, please contact us.
Meeting nutritional need - standards for care providers. A consensus statement on managing weight for people with PWS in residential care or supported living.