Real Lives

Adult Social Care provider goes above and beyond in support of Prader Willi syndrome

Jideofo Onono, before his incredible weight loss

Despite its reputation for being a condition that cannot be cared for in a supported living setting, National Care Group has successfully empowered Jideofo Onono, an individual born with Prader Willi Syndrome (PWS), to live a full and happy life – losing more than eight stone in bodyweight. 

 

PWS is an incredibly rare medical condition, affecting around one in 15,000 children in the UK, which causes a wide range of physical symptoms as well as learning difficulties and behavioural challenges. Many people born with the condition are institutionalised due to the challenges it presents, the most prevalent being insatiable hunger, which often causes extreme weight gain. 

 

In the case of Jideofo, the condition led him to consume inedible items. However, since moving to Chosen Care in Gloucestershire, part of leading provider of support services for vulnerable adults National Care Group, colleagues have supported him in leading an active life to help achieve his results, through diet, exercise and 24-hour care.  

 

Kathy Howitt, registered manager at Chosen Care, said: “We’re incredibly proud of Jideofo and his remarkable journey. When he joined us, he was extremely overweight, due to his condition, and would consume items such as shampoo as he wasn’t able to control his hunger. Our team has worked with Jideofo’s doctors and dieticians to implement a structure that has brought his weight down to 146kg with activities like cycling, gym visits, and long walks.  

 

“Through harnessing Jideofo’s potential, we have seen the most significant changes in his quality of life and have helped him to achieve his personal goals. From going swimming at the local leisure centre to embarking on days out to Bristol and getting his first tattoo, Jideofo now has the tools and support to fully enjoy life as part of the community.” 

 

One of the reasons many individuals living with Prader Willi Syndrome face being institutionalised is the challenge presented by living with others, as food consumption is more difficult to monitor. However, to combat this, colleagues at Chosen Care successfully identified and introduced another person they support as a housemate to Jideofo, which has been a great success. 

 

Jideofo Onono, after his incredible weight loss

Kathy added: “Encouraging Jideofo, and every person we support, to engage with others is hugely important, and being able to live with a housemate marks a great step in Jideofo’s progression. 

 

“Having lost so much weight, he is now waiting for an operation to remove his excess skin through the NHS. Once the procedure is complete, his next ambitions are to ride a horse and take a holiday to France; aims that our team will support him with every step of the way.” 

 

James Allen, chief executive of National Care Group, said: “Our colleagues always go the extra mile for the people we support, and Jideofo’s incredible success is the perfect example of this, as well as our progression model of care. Within the adult social care sector, it’s often suggested that the needs of individuals living with PWS cannot be met within supported living settings, however, as we have proven with Jideofo, that is simply not the case. 

 
“I hope this serves as an example to other support providers of how individuals with a range of complex needs can be given the support they require to unlock their full potential with the right approach and team, and we can’t wait to see Jideofo continue to thrive.” 

 

For more information on National Care Group and the services it provides, visit https://nationalcaregroup.com/

Edel Harris

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