Prader Willi Syndrome

 

ETHOS AND PHILOSOPHY

The aim of New Directions is to provide a home where service users are happy, healthy and leading a full and meaningful life.  To achieve this we:-

 

·   provide the best possible quality of life for adults with Prader Willi Syndrome in specialist provisions where there is a full understanding of this rare syndrome.

·   encourage social interaction, participation and community presence, by using community facilities for work, learning, leisure and recreation wherever and whenever this is possible.

·   enhance and maintain independence to a level which is appropriate to each individual with PWS, using robust risk assessing which allows people to take calculated risk and therefore develop as an individual whilst remaining as safe as possible.

·   seek meaningful work places, day services or education opportunities for all service users according to their choice and needs, there is a dedicated senior manager who looks for new work experience placements, learning opportunities and other courses and facilities which may be suitable and enjoyable for one or more of the service users.

·   promote and encourage healthy eating and fun activities which get people out and about, by using calorie controlled healthy eating philosophy and including as much physical activity into the weekly programme as possible, without this becoming tedious and boring for the individual.

·   maintain an environment where service users and staff feel valued and respected and that which is inappropriate for service users is not appropriate for staff (in particular relation to food issues).  This is achieved with agreement and understanding between our staff team and the service users by restricting access to food and empathetic support during times of emotional insecurity.

·   ensure that staff training is plentiful, thorough, kept up to date, relevant and serving its purpose so that the staff team is as well equipped as possible to meet the needs of the service users in our care, by having a senior manager with dedicated responsibilities for organising and co-ordinating staff training and constantly looking out for relevant new training to enhance the understanding of the staff and therefore the well-being of the service users. 

 

AIMS AND OBJECTIVES

 

New Directions provides homes for Service Users aged 18+ regardless of sex, race or religion.  Whilst Service Users with minor physical disabilities may be accepted, we are not able to accept those with physical disabilities that would prevent them from participating in the active lifestyle which is part of the philosophy of the home.  The home does, however, accommodate Service Users who suffer from Prader Willi Syndrome, and therefore accepts Service Users with gross/morbid obesity and challenging needs.

The aim of the homes is to provide opportunity for those with learning disabilities who, by their ability and desire, wish to pursue a more independent  lifestyle and become a member of the local community.  We provide training and instruction to assist Service Users in achieving this aim, whilst providing such levels of care required to help each person cope with the limitations that PWS brings.

In order to achieve these aims and objectives, New Directions provides high standards of accommodation, furnishing, equipment and training aids.  All accommodation is provided in single rooms, to which the Service Users have their own key, together with a lockable facility in each room.

All Service Users are encouraged to participate in the running of the homes and their views are sought at Service Users meetings, menu planning meetings etc.  Staff are trained to respect Service User wishes and choices and are further trained to understand the specific needs associated with PWS, whilst encouraging socially acceptable behaviour.  Individual’s rights, privacy and dignity are maintained. 

All Service Users are individuals and are not treated as part of a group.  Each Service User has an opportunity to participate in day services which include college placements, workshops (on-site in the grounds of each home), gym sessions, swimming, pottery, trampolining, music and movement, a house day to promote living skills, shopping trips for personal items to assist with raos safety skills and money management and work experience placements, in accordance with their needs, ability and wishes.

The homes arrange for medical care by the local general practitioners and utilise the services of the local CTPLD as necessary and as available.  Further, the home liaises with the Prader Willi Syndrome Association in respect of the special needs and care of those who have PWS.