Consensus develop new specialist Prader-Willi Syndrome Service in the London Borough of Hounslow
Due to the lack of specialist provision, individuals with Prader-Willi Syndrome (PWS) who live in London and the surrounding areas, often have to move out of their communities and away from their families and friends to find support and accommodation to meet their unique challenges and needs.
As a result of identifying an unmet local need, Consensus have developed a new specialist residential service for individuals with the rare genetic condition in the London Borough of Hounslow.
Based in Hanworth, Bear Road, formerly a residential learning disability service, has been refurbished and remodelled into a four-person specialist PWS service comprising of two large bedrooms with en-suites and two flats with separate lounge areas, bedroom and bathroom.
The service also has a number of spacious communal areas including a separate dining room, two separate large lounge areas and a large garden with a dedicated workshop for creative/occupational activity.
PWS is a rare genetic disorder affecting one in 15,000 births. It is characterised by a persistent hunger, excessive appetite and lack of satiety cues, as well as a number of physical symptoms, learning difficulties and behavioural challenges.
Specialist PWS support and accommodation has been recognised by several leading PWS experts as potentially the best effective ‘treatment’ in managing an adult’s weight loss, resolution of obesity- related complications, and improved quality of life, as there are no currently available medications to control the excess appetite in PWS.
Through a long-standing working relationship with Dr Tony Goldstone, who runs a specialist clinic in London for individuals with PWS, Consensus were able to identify an unmet need for a specialist PWS service in the local area.
The service has been specially designed and developed taking into consideration best practice approaches in supporting individuals with PWS and working in collaboration with individuals, their families and specialists in the condition, to ensure the accommodation and support meets their unique needs.
Design features include one communal kitchen within the service to enable food to be restricted to a designated area where individuals will be supported to prepare calorie-controlled meals that support them to maintain a healthy lifestyle.
The support team at Bear Road will receive specialist PWS training from the organisation’s dedicated PWS outreach team on dietary management and Positive Behaviour Support approaches specific to individuals with PWS. This will enable the team to support individuals to gain a sense of choice and control over what they are eating while also empowering them to make positive decisions and to take accountability for managing their own diets.
Belinda Robinson, Consensus’ Head of Partnerships and Developments (South) said, “Due to the unique characteristics of this rare genetic disorder, individuals can require specialist support to maintain a calorie-controlled dietary regime and to manage ‘food stress’ and associated challenging behaviours. This can mean moving out of their local community and away from friends and family.
“We are delighted that having identified an unmet need in the local area, we have been able to use our knowledge and expertise to design and develop a specialist PWS service that enables local individuals with PWS to remain within their community, while receiving the support they need to manage their condition effectively and enjoy a good quality of life.”
Kathryn Clarke, Head of PWS Outreach support at Consensus said, “As a specialist team with over 35 years’ experience in supporting individuals with PWS, our role will be providing the support team with specialist strategies and approaches that will enable them to provide these four individuals with the support they need to achieve their goals and live active and fulfilling lives within their local community.”