Rebecca’s Success Story – Ty Hendy
Rebecca, a 27 year old lady with Prader-Willi Syndrome (PWS) from Wokingham, moved in to one of the five self-contained flats within Ty Hendy, an innovative residential setting for individuals with learning disabilities and complex needs, based in Carmarthenshire Wales, after a previous placement at another learning disability service broke down.
Prader-Willi Syndrome is a rare genetic disorder characterised by a persistent hunger, excessive appetite and a lack of satiety cues which means individuals with the condition never feel ‘full’ and need specialist support to carefully manage their food intake. Individuals often become anxious around food and need a clear, calorie-controlled dietary regime with meals planned in advance to reduce ‘food stress’ and associated challenging behaviours.
Reflecting on why her previous placement broke down after just three days, Rebecca said, “They made a plate of lunch up. It was macaroni cheese and the calories were too high, so I had a little bit of a behaviour and the police were called. My mum came down because she knew what the problem was. I apologised three or four times but then they didn’t want to put their face and my face together anymore.”
After this experience Rebecca moved into her own self-contained flat within ‘The Laurels’ setting at Ty Hendy. Combining an individualised living environment adapted to meet her needs with a dedicated support team trained in Positive Behaviour Support (PBS) and the structure and safety of a residential service has enabled Rebecca to manage her PWS and really flourish in the five years she has lived there.
To support Rebecca with managing her food intake, the support team work closely with her to plan meals in advance and actively involve her in the process of weighing out food and controlling the calories within each meal. This has enabled her to gain a sense of choice and control over what she is eating while also empowering her to make positive decisions and to take accountability for managing her own diet.
“I have managed really well. I really like the food I get for my calories and the daily routine,” said Rebecca.
The support team also understand that going out in the community Rebecca’s Story can be more challenging for Rebecca due to the amount of food choice and its easy availability. To minimise stress and anxiety when she is out and about the team help her to pre-plan and to build treats in to her overall diet, which helps reduce the desire to gorge.
“When I went to the circus, I planned to have a Burger King and I sat down with staff to make healthier choices from the menu beforehand. I also took a bag of popcorn to the circus which was 80-90 calories rather than buying a treat in there,” Rebecca added.
Lorraine Jackson, Operations Manager and former Manager at Ty Hendy and a PBS accredited coach explains, “Having a self-contained flat within a residential setting works really well for Rebecca.”
“We store food in a designated area outside of her flat which removes temptation and the anxiety of having food constantly in sight. She also feels more at ease eating her meals in her flat rather than within a communal setting where she may have to watch people eat food that she can’t.”
Since moving to Ty Hendy and being supported to manage her PWS, Rebecca has grown in confidence, only has minimal behaviours and has become an active part of the local community.
“Rebecca is a really lovely lady with an infectious personality – she is very popular here. The team know her very well and understand what can trigger a behaviour for her. In this way, we can manage the environment and her support so behaviours are kept to a minimum and she can focus on living a happy and fulfilling life.”