Craig’s story: support with Prader-Willi syndrome & a learning disability in supported living

Overview

Craig lacks mental capacity around food due to his excessive appetite. When AFG were awarded his care and support package in 2008, he weighed over 20 stone and displayed behaviours that challenged others due to frustrations with his condition.

He did not have any independence around planning, preparing or choosing his meals. This led to him frequently absconding from his home and eating excessive amounts of food, as well as becoming regularly extremely distressed and locking himself in his bedroom, throwing his personal items out of the window and threatening to harm himself.

Our approach

Providing the right environment

One of the initial things Craig’s team learnt was that he did not enjoy living with others and was very keen to have his own living space. Through engagement with professionals involved in his care, his team supported him to find a flat to move in independently and immediately saw improvements in his mood and behaviour.

Establishing routines and building relationships

His support team discovered that consistency and structure are extremely important for Craig. They worked closely with him to build a trusting rapport and to establish a regular routine around his activities and meals, so that he always knew what to expect and when, which further improved his ability to cope with his appetite and mood.

Support to promote independence

In collaboration with his social worker, his team trialled empowering Craig to be independent in measuring his own food and ingredients in keeping with his calorie limit, so he could have increased choice over what he would like to eat and if he would like to save calories for a treat, like a meal out. Following this, the team organised for Craig to manage his own money, where previously his parents had full control of his finances. An appointeeship arrangement with the local authority was arranged which gives him a weekly allowance, which he now creates his own budget plan for.

Outcomes

Healthy weight

Craig has lost 5 and a half stone and currently weighs 14 stone 6 lbs.

Independence around food and money

Craig has independence on what he eats and how he spends his money, which he never had before. He has developed cooking and budgeting skills, and a robust process on calorie counting. His kitchen doors and cupboards no longer need to be locked at all times.

Discharged from psychiatrist and medications

When AFG began supporting Craig he was in the care of a psychiatrist and was on anti-anxiety medication for his behaviour that challenged others. He has now been completely discharged from the psychiatrist and no longer requires medication.

Activities and a holiday

Craig is described as the ‘life and soul of the party’, enjoying a range of activities including discos and the bingo, which he previously had restricted participation in before. He enjoyed a recent planned trip to Blackpool, which he requested because his grandmother used to take him as a child.