Life for an individual with Prader-Willi Syndrome at St Stephen’s Road

January 14, 2021

Kieran a 29-year old man with Prader Willi Syndrome, (PWS) from Peterborough, first moved to St Stephen’s Road, a supported living service in Cheltenham, Gloucestershire, after a previous placement at a specialist residential service for individuals with PWS broke down.

Prader-Willi Syndrome is a rare genetic condition characterised by a persistent hunger, excessive appetite and a lack of satiety cues which means individuals with the condition never feel ‘full’ and need support to carefully manage their food intake. Individuals can 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.

From Kieran’s assessment, it was clear that he would benefit from having his own individualised living environment which could be adapted to meet his needs along with a dedicated support team trained in PWS and Positive Behaviour Support strategies to give him the support he needed to manage his condition and grow in independence. 

St Stephen’s Road is a supported living service consisting of nine self-contained flats that provides accommodation and support for individuals with learning disabilities, autism and a range of additional needs including physical disability and behaviours that challenge.

Each individual has their own tenancy and separate support package, with a 24-hour onsite team providing personalised support tailored to the individual’s bespoke needs. The focus at St Stephen’s is on supporting people to have greater control over their lives and to lead an active, meaningful, fulfilling life as part of their local community.

Due to the unique characteristics of PWS, it was important that the support team had the knowledge and expertise to support Kieran to manage the different aspects of his condition so the input of Consensus’ PWS Outreach team was essential.

With over 35 years of experience in supporting individuals with PWS, Consensus PWS Outreach team provide direction and support to support teams on how best to support individuals with PWS that are living in their services.

Prior to Kieran’s transition into St Stephens, the PWS Outreach team worked closely with St Stephen’s support team, sharing their knowledge and expertise of PWS as well as giving advice, guidance and training on aspects such as dietary management and behaviour strategies. The team also continue to closely monitor Kieran’s health, weight and outcomes in order to identify any potential health risks or other concerns so they can be acted upon swiftly and further guidance can be provided as needed.

Kathryn Clarke and Myles Kelly our PWS Outreach Team

At St Stephen’s, support focuses on all aspects of a person’s life and is as much or as little as they need. This includes support with health and well-being, ongoing education, skills development and accessing social, leisure and work opportunities. Individuals are also encouraged to develop and maintain a network of relationships.  

Since moving to St Stephen’s, Kieran has grown in confidence and independence, only has minimal behaviours and has become an active part of the service and the local community.

Abbie, Kieran’s Keyworker said, “Kieran is very popular here at St Stephen’s Road. He has an infectious personality, and everyone loves working with him. He also interacts well with the other individuals living at the service and has struck up a lovely friendship with another individual who he likes to go and visit at 7pm each day to see how his day has been. “

“We affectionately refer to Kieran as ‘Mother Hen’ because he likes to get involved in everything – he loves to get involved with the stock take of PPE and cleaning the service alongside the team. We always get him involved in lots of different activities as it helps to distract him from constant thoughts of food, which is a characteristic of his PWS.”  

Kieran used to enjoy volunteering in a local charity shop as well as the butterfly centre, where he loved taking part in the activities they offer there, including, pottery, arts and crafts and games. The COVID pandemic has meant that his volunteering work has had to come to an end temporarily, but one of his goals is to start again as soon as it is possible,” adds Abbie.

To support Kieran with managing his food intake, the support team pre-plan a six-week rolling menu, with a strict calorie allowance each day, this provides Kieran with the certainty he needs about what he is going to eat and when, which in turn helps to reduce anxiety and ‘food stress.’

On occasion, Kieran does have behaviours related to food, which is common with individuals with PWS and accepted as part of the condition. Most of the time however; he copes very well and is able to understand and respect the boundaries that the team have put in place. Most of his behaviours are related to the frustration he feels that other people can eat things that he can’t, so to overcome this, the team have built ‘treat days’ into his overall diet which has helped to ease this for Kieran.  

Abbie explains, “With Kieran it is about finding the balance between supporting his independence but also setting boundaries and providing a clear structure to his day. He very much needs to stick to the routine because if he has that plan in his head, any deviations can increase his anxiety and trigger behaviours.”

“Because we know him very well and understand what can trigger a behaviour for him, we can manage the environment and his support so behaviours are kept to a minimum and he can focus on living a happy and fulfilling life,” said Abbie.

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