Weston Villa: Pioneering a unique care and support service for individuals with PWS and complex needs

May 1, 2018

Anyone who has been involved in the process of finding the right accommodation and support for an individual with Prader-Willi Syndrome (PWS) will know it can be a difficult task, but what about when that person also has additional complex needs, behaviours that challenge or mental health requirements that give rise to compatibility issues with others?

For these individuals, the right care and support to meet all aspects of their unique needs is critical but also presents a multi-faceted and complex challenge.

Prader-Willi Syndrome, a rare genetic disorder affecting 1 in 15,000 births in the UK, is characterised by a persistent hunger, excessive appetite and a lack of satiety cues which means no matter how much an individual has eaten they never feel ‘full’ and will still have a constant desire to consume more. As a consequence, if food is not carefully managed, they are at risk of several life limiting illnesses, including morbid obesity and its secondary conditions; type 2 diabetes and obstructive sleep apnoea.

As it is a spectrum disorder the other range of cognitive, emotional and behavioural challenges associated with PWS vary depending on the individual. Most will present with at least a mild to moderate learning disability with others experiencing more acute symptoms that result in complex needs and/or mental health problems.

When the current successful model doesn’t fit all 

The current successful model of accommodation and support usually endorsed involves living in a group environment with others who have the syndrome due to the multiple benefits this can provide, including peer support, improved health outcomes and better quality of life; however, success is dependent on the compatibility of those sharing the environment and while many individuals with PWS thrive, for those with additional complex needs – this is often not an option.

Similarly, for individuals with PWS, the philosophy of greater levels of control promoted within a tenancy based supported living environment can be problematic when establishing boundaries around access to food both at home and in the community.

So, the question then becomes what is the right accommodation and support model for this group of individuals? In order to successfully answer this question, further considerations must be addressed:

  • How do you ensure that the environment is such that an individual with PWS who isn’t suitable for a traditional residential setting has a living space that suits their complex needs but also has the right lifestyle structure and support system in place to ensure their food consumption is effectively managed?
  • How do you ensure that those providing the care and support not only have a good knowledge and understanding of PWS and the Positive Behavioural Support that helps to reduce behaviours associated with the condition but that they also have the same level of expertise when it comes to supporting these individuals with their additional complex needs or mental health issues?

Pioneering a unique solution

Weston Villa, a unique PWS service, was pioneered by Consensus in response to this challenge. Consisting of four individual flats, a communal lounge and pleasant garden, the service is an innovative flat based model of accommodation and support which draws on the key elements that have made the traditional household model a success, while also delivering an individualised living environment enabling compatibility issues to be supported more easily.

Ray Godwin, Head of Developments and Partnerships, North, explains “At Consensus, we have spent many years developing our world-renowned PWS services alongside our traditional offering of support and accommodation for individuals with a learning disability who may also have complex needs and behaviours that challenge or mental health issues.”

“As a result, we were in a unique position to use our dual knowledge and experience to really bring something new to the table – to offer a truly person-centred solution for these individuals, many of whom were trapped in hospital settings because their particular needs really couldn’t be met by what was currently available on the market.”

“The fact that all four flats were taken up before the service was opened shows there was a real demand for this type of service model and with many individuals within this category still struggling to find suitable support and accommodation, this demand is ongoing,” Ray continued.

The service which opened in December 2017, retains all the fundamental elements of a successful residential PWS service in terms of 24-hour food security and appropriate environmental measures but with their own flat and individualised support from a dedicated support team trained in both PWS and Positive Behavioural Support, the right balance of structure, space and support can be achieved for each individual.

“We often get asked how we successfully monitor food when individuals are living in their own flats. The way the service model works is that all food is kept in a separate locked building onsite. At meal times, the support team measure out the ingredients for that specific meal and deliver them to each individual at their flat where, depending on their level of independence they can then prepare their meal on their own or with support,” said Ray.

“The peer support element that works so well in a traditional residential setting also comes into play here because while individuals may not be sitting down sharing a meal together, they are all aware that they are sharing an environment with other individuals with PWS who have to adhere to the similar food and dietary management. There’s definitely a bit of healthy competition to keep trim.”

With PWS, managing access to food to help an individual maintain a healthy weight and lifestyle is only one aspect of supporting an individual, the other crucial element is the Positive Behaviour Support that individuals receive to help reduce challenging behaviours.

“Having a support team that is trained in Positive Behaviour Support has been fundamental to the success of the service. Pre-occupation with thoughts of food is something that individuals with PWS have to live with – there is no cure. We work with individuals and teach them strategies that serve to distract them from those thoughts by focusing on other pursuits that are meaningful for them. This in turn gives them a greater sense of choice and control, while also reducing behaviours that challenge, making their everyday lives more fulfilling.”

“Developing a unique service that has provided individuals with PWS and other additional complex needs with the person-centred support and accommodation they have not been able to access in the past has been a very rewarding experience. Moving forward, we intend to replicate this unique service model in other areas where a need has been identified, Ray added.

For more information on Weston Villa or to discuss opportunities for future partnerships, please contact: Ray Godwin, Head of Development and Parnerships, North on rgodwin@consensussupport.com