New Prader-Willi Syndrome Service Now Open
Prader-Willi Syndrome (PWS) is a rare genetic condition, affecting an estimated 1500 – 2000 people in the UK of all ages. Individuals are restricted in their daily life through their insatiable appetites and they may experience other complications, such as restricted growth and behavioural problems.
Due to a lack of provision, individuals with Prader-Willi Syndrome (PWS) who live in London often have to move out of their communities and away from their families to find support and accommodation which can meet their unique challenges and needs. As a result of identifying an unmet local need, Consensus developed Bear Road near Hounslow to provide a small, supportive setting for four people with PWS to share. Individual living spaces at the service enable people to have maximum choice and control over their lives and living environment but with peer support from others with PWS.
Our Head of Development and Partnerships for East Anglia, London and Surrey, Belinda Robinson and our Divisional Director for the East of England and London, Allyson Kay, talk about the exciting new developments at Bear Road and how Consensus are leading the way in person centred support.
Bear Road has been refurbished and remodelled into a four-person PWS service. The service has been especially designed and developed to take into consideration best practice approaches in providing the right support and accommodation for people with PWS, working in collaboration with individuals, their families and our PWS Outreach team, Kathryn Clarke (Head of PWS Outreach Support) and Myles Kelly (Prader-Willi Syndrome Liaison Officer). The focus is on supporting independence and helping people to lead the life they want to, with the dedicated support they need and where friendships and peer support can play a key factor in maintaining a happy and inclusive life.
There is a 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.
Located in Hanworth in the London Borough of Hounslow, this two-storey house has four en-suite bedrooms, two of which have separate lounge areas, as well as a bedroom and bathroom. There is also a separate communal dining room and two separate lounge areas which both open onto a ‘secure’, large garden. Nearby Hounslow has many amenities including cafes, restaurants, libraries, cinemas and leisure facilities.
Meet Grace Martinez – Service Manager
Grace has worked in the social care industry for 10 years and is passionate about making a difference to someone’s life, no matter how big or small. She is excited to be working at Bear Road and cannot wait to welcome four new individuals to live at this new, specialist PWS residential service.
Kate and daughter Alex’s story
Alex was diagnosed with PWS at nine months old. For Kate, her mum, the initial feeling was shock and devastation. Her thoughts immediately fast forwarded – “Right well, she probably won’t go to University. Where will she live? What will her life chances be?” 23 years on, Kate is so proud of the confident and happy young woman Alex has become.
Jacky, David and son Nick’s story
When Nick was diagnosed with PWS at eight months old, the doctors told his parent’s, “don’t go and look up all the information because it doesn’t all apply to your son. But of course, what do you do?” said Jacky. “David went to the library and printed out the sheet on PWS and of course you read all the bad things…”
