Prader Willi Syndrome

I began my career in the care industry in 1994, when I joined a company running residential care homes in Hastings, East Sussex. Working with adults with profound multiple disabilities and starting as a basic grade support worker, was promoted to senior support worker.

My nephew, Vincent, had Prader Willi Syndrome and I was involved in Vincent’s care for many years. Vincent lived with me and my family between the ages of 17 and 18. Vincent went into residential care and died at the age of 20. It was apparent to me that Vincent’s death was the result of a general lack of understanding about PWS and the absence of provisions which specialised in care for adults with the syndrome. I was elected onto the board of trustees of the Prader Willi Syndrome Association UK where I served for 3 years. I assisted the Welfare Officer in her work with the families and people with PWS. I approached my then line manager in 1997, and discussed the possibility of setting up a specialist provision for adults with PWS in the East Sussex area. I spent time researching to obtain the opinion of care managers and relative of people with the syndrome. Together we looked at various possibilities and finally managed to get three people to finance and set up the first home in Robertsbridge in East Sussex. I have worked for New Directions since it opened this first home in September 1998 providing specialist residential care for 7 adults with PWS. My initial post with the company was that of deputy manager, in this post I assisted with assessments for potential new residents, set up menus and day time programmes suitable for residents, helped to recruit the staff team, liaised with the Prader Willi Syndrome Association, care managers from Local Authorities, parents and people with PWS. The then manager of Bishops Croft (Dave Davies) and I then persuaded the company to open a second home in April 2000. At this time I was promoted by the company to Development Manager, with responsibility for the training of new staff in the understanding of the syndrome, facilitating discussions with service users on improvements to the service and dealing with problems that may be faced by service users and the staff team. This continued when Bishops Lodge was opened in 2004.

As part of the senior management team, with management meetings held once every month, we are all able to look at new ideas, ways to move forward to benefit the service users and further development of New Directions, particularly with the opening of Bishops Way in early Summer 2008, and the development of a semi independent apartment at Bishops Croft.