Supporting good mental health in people with Prader-Willi Syndrome

May 5, 2021

Every year, during the month of May, Consensus Gretton 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, the 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 the 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.

Myles Kelly, PWS Strategic Lead for Consensus explains, “‘Mental Health’ is a phrase we hear regularly in everyday life, but it is frequently misunderstood.”

“While it is often used as a substitute for mental health conditions such as depression, anxiety conditions or schizophrenia, ‘Mental Health’ is actually about being cognitively, emotionally and socially healthy!”

The World Health Organisation defines Mental Health asa state of well-being in which the individual realises his or her own abilities, can cope with the normal stresses of life, can work productively and fruitfully, and is able to make a contribution to his or her community.”

“At Consensus, we support over 90 individuals with Prader-Willi Syndrome in 22 specialist PWS residential and supported living services across the UK.”

“While all our support teams are specially trained to support individuals to manage the food aspects of their PWS, another key focus is supporting individuals to develop skills that are fundamental to support their Mental Health; including the ability to learn, the ability to feel, express and manage a range of positive and negative emotions, as well as the ability to form and maintain good relationships with others,” says Myles.

Here we look at some of the different ways individuals we support with Prader-Willi Syndrome are supporting their mental health and wellbeing:  

1/ Making a positive contribution to the lives of other people

Kelly

One aspect of good mental health is the ability of a person to recognise their potential, another is their ability to contribute towards their community; in her capacity as a member of the Consensus Quality Checkers Team, Kelly Bridges contributes positively to improving the lives of individuals with learning disabilities and complex needs, such as Prader -Willi Syndrome, by regularly consulting with individuals supported within Consensus services on the things that are important to them. Acting as an advocate, Kelly shares their views with Consensus who then use this feedback to shape and continuously improve services and the delivery of care.

2/ Working towards goals and learning new skills

Lizzie

A person’s ability to learn and to recognise their own capabilities are both good indicators of their mental health and for Lizzie, who lives at specialist PWS services, Gretton House in Gretton Northants, taking part in meaningful activities, working towards new goals and learning new skills has been really important to supporting her mental health to flourish.    

Lizzie says, “I love volunteering at Wellingborough dog centre walking Romanian rescue dogs. I also enjoy walking a Siberian husky called Shadow and a Blue Staffordshire Bull Terrier called Snoop.”

“I have also been working on becoming more independent and have started my driving lessons in an automatic car and completed my independent walks assessment.”

3/ Forming and maintaining good relationships

Stephen

Being able to form and maintain good relationships is another indication of good mental health and for Stephen who lives at Perrywood House, a specialist PWS service in Kettering, Northants; a work opportunity at the Northampton Branch of Travis Perkins enabled him to build long-lasting friendships with his colleagues and to be a valued member of the team.

Having recently celebrated his 10-year anniversary at the company, Stephen reflected on the strong bonds he has made with colleagues, saying, “I enjoy working as much at Travis Perkins today as I did 10 years ago when I first started. I feel valued and part of the team. Everyone who works there is my friend and I even get a birthday gift each year, though I have to gently remind them when it’s my birthday!”

4/ Learning how to feel and express emotions

Taylor

Being able to express feelings and manage both positive and negative emotions is another key aspect of good mental health and for Taylor, who lives at specialist PWS service, Gretton House in Gretton Northants, having a person centred support plan which supports her with her health and emotional needs has resulted in her becoming a much more confident and happy person.

As a result, she has now found a new lease of life, enjoying bowling, swimming, shopping trips and visiting the local country parks. She has also made many new friends who she enjoys passing the time with and having fun whilst doing activities.

Samsoor

Gaining the ability to manage his feelings and heightened emotions was central to Samsoor, who lives at Fletton Avenue, a specialist PWS service in Peterborough, Cambridgeshire, reducing his behaviours and improving his wellbeing and quality of life. 

Working closely with Behavioural Practitioner, Helen Coleman from Consensus in-house Positive Behavioural Intervention Team, the team were able to support Samsoor with social stories that helped him to understand and process different social situations to reduce his anxiety. Samsoor’s mum now says she has got her son back – he is calm and friendly and he listens – she is no longer afraid of his behaviour like she was before.

To learn more about our PWS Awareness Month campaign and to read the full success stories of the individual’s we support, please visit: www.consensussupport.com/pwsandme-2021/