Driving PWS provision forward
New, innovative solutions for more independent living
The current successful model of care and support for individuals with Prader-Willi Syndrome (PWS), offers people an opportunity to benefit from the support of their peers. By living with others who have the syndrome, individuals are less likely to feel aggrieved as those they live with follow the same structure of dietary discipline. In this respect, PWS differs from other syndromes in that there is clear evidence that living in a group environment with others with the same diagnosis leads directly to improved health outcomes, and ultimately a better quality of life.
Successful group living depends on the compatibility of those sharing the environment. Most people referred to Consensus PWS services go on to thrive in supportive shared household settings, however for some, sharing is simply not an option. This may be due to a person’s mental health, sensory sensitivity related to autistic spectrum conditions or behaviours that others may find challenging.
New models to address the Gap
To respond to this diversity, Consensus has recently pioneered an innovative flat based model of support. This draws on the key elements that have made the traditional group household model such a great success, while delivering an individualised living environment enabling compatibility issues to be supported more easily.
Weston Villa in Kettering, consists of four individual flats with a communal lounge and pleasant gardens.
This unique service offers individuals who might otherwise have found themselves living in inappropriate generic residential, supported living or hospital settings, a real opportunity to benefit from the experience and expertise that Consensus, the UK’s longest established and leading provider of services to people with PWS, has to offer.
Further evidence of our innovative solutions is the development of accommodation for people with PWS being pursued in Essex, which will provide one of the first supported living services primarily supporting individuals with this syndrome. This service will also be suitable for people with learning disabilities and other eating support needs. The scheme has been discussed and developed in consultation with Essex County Council in response to identified local need.
Offering a supported living environment means each person will have their own tenancy and separate individualised support package based on an assessment of their bespoke needs.
The focus will be on recognising individual needs whilst understanding the challenges that an individual with Prader-Willi Syndrome (or other eating support needs) experiences daily. We recognise all the difficulties that this condition can present to individuals; not just a person’s health and well-being but also emotionally, physically, cognitively, behaviourally and socially. This in-depth understanding enables our trained team of colleagues to deliver a person-centred approach that is appropriate to each individual whilst addressing their specific needs and supporting positive outcomes for them.
The flats are being developed within an existing building and will include six self-contained one bedroom flats, as well as some communal space.
Centrally located in Clacton on Sea and close to all local amenities, there are excellent opportunities to support and develop an inclusive lifestyle.
Understanding the challenges
Supported living has always been considered a challenging accommodation and support option for people with PWS due to the need to have food safety measures in place and the philosophy of greater levels of choice and control within supported living.
We recognise that how people are affected by PWS is unique to them and with person centred planning, robust risk assessment and the right levels of support, it can work for people with PWS.
The environment, a managed diet and access to food both at home and in the community are all key aspects that need to be addressed. Good support comes from excellent knowledge, experience and training around PWS for all colleagues supporting individuals with the condition, as well as partnership working with local NHS services to raise awareness of the complexities of PWS. Working in partnership with families and the individuals we support, comprehensive support plans including positive behaviour intervention where necessary, are tailored to each individual’s needs to help them to live a meaningful, fulfilling life in the local community.
To find a PWS service in your local area click here