Prader-Willi syndrome Supporting Chris to live a happy and healthy life at Esmer House
Chris moved to Esmer House, our specialist Prader-Willi syndrome service in February 2020.
Living with Prader-Willi syndrome
Chris has Prader-Willi syndrome, a rare genetic condition that is most commonly associated with an excessive appetite and overeating, as well as weight gain and lack of muscle tone. It has a significant impact on the mental, physical and behavioural well-being of people. It can lead to the development of a variety of complex needs including learning disabilities, physical symptoms and behavioural problems. Although there is no cure, a person living with Prader-Willi syndrome can still lead a healthy, fulfilling life when they have consistent support from people who understand the condition.
The importance of family
Before moving into Esmer House, Chris lived at home with his family in Halifax. Chris is the eldest of five and having a big family means everything to him! Overtime, Chris’ siblings grew up and moved out of their family home. This had a huge impact on Chris’ mental health, as he was no longer surrounded by the people he loved most daily.
Chris began to suffer with depression and anxiety, and as a result his behavior began to change. Relationships with family and friends began to suffer, his behavior led to arguments on a regular basis and he was no longer allowed to attend day services. Chris and his family identified that support was needed and reached out to Voyage Care.
A new place to call home
After 37 years at home, Chris took a huge leap and moved into Esmer House in February 2020. Esmer House is a six-bed residential care home in Nottinghamshire, which provides 24-hour support to people with Prader-Willi syndrome. This service is a two-hour drive from Chris’ home town of Halifax.
At first Chris struggled to settle into his new home and surroundings as it was difficult being away from his home and his routine had completely changed. As a result, Chris began to display challenging behavior towards our staff and residents. We understood that this would be an extremely difficult time and so our team went above and beyond to make the transition as comfortable as possible.
Understandingthat Chris was missing his family, the team would support him in contacting them whenever he wanted, day or night, to help with the separation. Being away from his family was incredibly hard and despite a four hour round trip, our team would drive Chris to his parents whenever they wanted to see each other. On occasions, Chris’ mum would ring our team at 12pm and we would have Chris with her by 3pm! If we have staff available, there is no reason why our team wouldn’t drive the people we support to see their loved ones – no matter what the distance!
Making positive changes
While adapting to new routines, Chris would occasionally have outbursts in the house that would, unintentionally, cause upset with the other residents. Following a few episodes of this, Chris identified that he wanted support in changing his behavior. He would often tell us that he didn’t like behaving the way he did and that he didn’t want to cause upset to his friends in the house.
Our first step in helping Chris achieve this was to understand what upsets him and causes his outbursts. We began working with Chris on a one-to-one basis to understand what would cause these outbursts and help Chris to understand why there may be consequences. After having regular chats with Chris, we discovered where the problems started and began working to resolve them.
Chris is very routine based. Being kept in the loop and understanding why things have changed is very important to him. We ensure that Chris is kept up to date with all decisions that involve him. Whether this is who will be taking him out for the day or what meals and snacks he will be eating. This way Chris knows he is still in control of his day and understands why any changes have been made. Since introducing this way of supporting Chris, we have seen huge improvements in his behavior and the way he acts with our residents and staff.
Keeping routines during COVID-19
Chris loves to socialise! Being out and about, visiting new places and meeting people was part of his daily routine. After living a full and exciting life at home, it was our priority to ensure he could continue doing the things he loved at Esmer House. Our team would support Chris to go out and get familiar with the local area, taking him to the shops and the local pub where he would play snooker and make new friends. Chris’ dream was to go to a nightclub, something he had never done before. Our team were more than happy to accommodate and help make this dream come true. Within a few weeks of Chris moving in, staff organised a safe trip to a local nightclub where he was able to boogie the night away!
As COVID-19 restrictions were introduced across the UK, Chris’ regular trips out had to come to an end. At first, he struggled with not being able to go out. Staff began to worry about his mental health as he became more and more demotivated.
Staff did everything they could to minimalise the impact of COVID-19 on Chris’ routine, including building Esmer House’s very own pub in the back garden! The garden pub has furniture, a bar pump, dart board and even a place to play beer pong. This had a huge impact on Chris’ mental health and went a long way in helping his routine return to normal.
Striving for goals
It has been a year since Chris moved into to Esmer House and despite being in a pandemic, he has achieved so much! Living with Prader-Willi syndrome means Chris can overeat and if not monitored carefully, it is easy for him to gain weight and difficult for him to maintain a healthy lifestyle. His main goal when moving in was to lose weight so Chris joined a gym and dedicated a lot of hours to working out. Paired with his active lifestyle and a healthy diet meant that he was losing inches in no time! Chris was soon able to go and pick his own clothes from stores and fit into sizes he had never done before. This was a huge achievement for Chris and only motivated him to keep going. Despite going into lockdown and with gyms closing, Chris didn’t lose motivation and he continued to work incredibly hard towards his weight loss goal. Since moving into Esmer House, Chris has lost an incredible two and a half stone!
Supporting you to live a healthy and happy life
Chris moved from his family home of 37 years to join us at Esmer House, supporting him to continue to live a happy and exciting life! If you’re interested in how we can support yourself, a loved one or a client to live their best healthy lives, please fill in this quick enquiry form and a member of our team will get back to you.
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