Prader Willi Syndrome (PWS)

Community Programmes

Prader Willi Syndrome Support

Introduction

Lemongrove House opened in October 2019 and is designed and developed to provide residential supports for people with Prader Willi Syndrome. It is located in Enniscorthy, Co. Wexford.

This supported living service is an exciting innovation and is the result of an extensive period of review by Resilience who:

  • Travelled to Germany, Denmark and the UK to visit and study in-depth, experienced EU PWS specialist providers. This was done with families and members of Prader Willi Syndrome Association of Ireland (PWSAI)
  • Had learning workshops with PWSA UK
  • Attended the IPWSO world conference
  • Researched global best practice
  • Consulted deeply with people with PWS and their families

…………………..and built all of this learning into the creation of this specialist service. 

This residential service is in keeping with Resilience Social Care’s ethos of providing people with the kind of progressive support that optimizes their experience of life and encourages each individual to reach their potential. This includes providing day supports in line with New Directions, underpinned by person centered planning to enable each person to achieve their maximum potential and have a good life. 

Specialist Features of our PWS Service

These features include:

  • Environment – designed to support specific needs of people with PWS. Environmental controls around kitchens / pantries to provide food security.
  • Individual bedrooms / apartments with en-suite facilities. There are also general areas such as sitting rooms, activities room and a gym.
  • Person Centred Services with tailor made support plans and person centred planning to enable people with PWS to receive consistent support and achieve their goals and wishes and reach their potential.
  • Support teams who are trained specifically in PWS and can recognise and support service users emotionally, physically, cognitively, behaviourally and socially.
  • Service is led by an experienced Clinical Nurse Manager (RNID). This is to ensure a balance between the holistic social care approach with management of the complex physical / medical requirements of each individual.
  • Dietician who can assess and provide advice on calorie-controlled meals and weight management programme.
  • Positive Behaviour Support model led by experienced Behaviour Support Team, who provide advice, training, support and mentoring the support teams in particular around assessment and understanding the function of behaviour and development of Behaviour Support Plans.
  • Multidisciplinary team to provide supports and guidance with mobility issues, sensory integration, exercise programmes, activities of daily living programmes, environmental assessments etc.
  • Mental Health and Well Being such as psychological supports, counselling, health and wellness with structured programmes for fitness and leisure.

The Future

Resilience has plans to roll out the Prader Willi service nationally, growing it to become a country-wide centre of excellence for supporting people with PWS in Ireland. 

If you would like to learn more about Resilience’s specialist service for supporting people with PWS, please contact info@resilience.ie or call 065 6722875. 

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We’ve come a long way in understanding the condition, and our approach is testament to this. Recognising the unique needs of people with PWS, our new specialist division has been designed in line with best practice guidelines. ‘Laura Keane, MD Resilience’