At Consensus Gretton, we support over 90 individuals with Prader-Willi Syndrome (PWS) in 22 residential and supported living services across the UK. This includes people living in one of our 12 specialist PWS services or in a service for people with learning disabilities and autism.
Every year, during the month of May, we launch a campaign to support Prader-Willi Syndrome Awareness Month, with the aim of raising awareness and creating better understanding of this rare, genetic condition. This year, our campaign focusses on supporting good mental health for individuals with PWS.
Due to the nature and characteristics of Prader-Willi Syndrome (PWS), individuals diagnosed with this rare genetic condition can often experience a range of cognitive, emotional and behavioural challenges, that’s why supporting them with their mental health is an absolute priority.
Take a look at our case studies and success stories booklet below to learn about the different ways we are supporting individuals with PWS with their mental health and wellbeing.
Watch our ‘What is PWS?’ animation to learn more
Prader-Willi Syndrome (PWS) is characterised by an excessive appetite and a range of cognitive, behavioural and emotional challenges; but with the right support, individuals with PWS can lead a happy, fulfilling life.
Case Studies on supporting good mental health and wellbeing
For Samsoor, who lives at Fletton Avenue in Peterborough, Cambridgeshire, not being able to control his emotions and missing home led to a number of behaviours; taking part in meaningful activities and learning new ways to express his feelings, has supported him to improve his wellbeing and quality of life. His mum now says she can’t believe the difference in him – he is calm, listens and she is no longer afraid when he visits.
For people with PWS, keeping fit and active is an essential part of maintaining a healthy weight and managing their condition, however, regular exercise also has a positive impact on a person’s mental health – not only can it boost their overall mood, it is also a powerful medicine for any mental health challenges. At Gretton House, the team are always coming up with new and innovative ways to motivate individuals to maintain active lifestyles, such as their Virtual Tour around the World!
“While our support teams are trained to help individuals manage the food aspects of their PWS, a key focus is supporting them to develop skills which support their mental health; including the ability to learn, feel, express and manage a range of positive and negative emotions and their ability to form and maintain good relationships”
Myles Kelly – PWS Strategic Lead
In this booklet you will find a selection of success stories about the people we support and how they have overcome the challenges they face every day. They are testimony to the fact that when the right support and structure is in place in the right setting and where their mental wellbeing is a top priority, people with PWS can live a meaningful, independent life and achieve their goals and dreams.
Our PWSandme Campaigns
We’re passionate about continually raising awareness and understanding of this rare genetic condition. Our PWSandme campaigns are helping to do this and each year focus on a different theme.
From what it’s like Living, Parenting and Working with PWS, to telling the story ‘through the eyes’ of individuals who have PWS, our campaigns cover not only the challenges but the good times and moments of joy and pride.
Organisations for parents who can offer support and advice
Prader-Willi Syndrome Association UK
PWSA UK provides support, mediation and a dedicated helpline to the PWS community, they have a wealth of knowledge and resources to help people know everything they need to know about PWS.
Like all charities, they rely on donations and fundraising to enable them to continue the important work supporting the PWS community whether this is through a programme of family events, training, conferences or funds for research.
This Awareness Month, the PWSA UK is going to Get Active in May and would like you to join them in a virtual Round Britain Relay where, anyone can complete the 2,992 miles or 7,063,080 steps of this great challenge – raising valuable funds for PWSA UK.
LEARN MORE ABOUT PWSA UK READ ABOUT THE CHALLENGE
Foundation for Prader-Willi Research UK
Established in 2003 by a small group of parents who saw the need to foster research that would help their children with Prader-Willi syndrome to lead more healthy and fulfilling lives.
FPWR UK is a charity and works closely with their sister organisation the FPWR in the United States. FPWR UK raises money through donations and fundraising for the sole purpose of research to help improve the lives of individuals with PWS
This Awareness Month, the FPWR UK are encouraging people to go ORANGE on Friday 28th May, their challenge MOVE IT MAY is for all ages and abilities, the challenge is to cover a distance of 30, 60, 90 or 120 miles throughout the month – raising valuable funds for FPWR UK.
Learn more about Consensus and our PWS services…
Our current referrals process during the pandemic
Read about how we are supporting people to move into our services during the pandemic and the procedures we have put in place to keep everyone safe, including the individuals we support and our colleagues.
Our current PWS services rated Outstanding
We constantly strive to deliver best practise and quality across all areas of the business to make a real difference to the lives of the people we support with learning disabilities and Prader-Willi Syndrome (PWS).
Our PWS services with placements available
Our homely and supportive services are in attractive rural and town locations and are close to a range of local facilities, so the individuals we support can lead a meaningful and fulfilling life in their local community.
Spread the word: #PWSandme
Help us spread awareness of PWS.
Share our videos, share our tweets, share our stories at #PWSandme