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James

James O'Brien

Year of Award: 2017 Award State: Victoria Health And Medicine > Diseases, Disorders And Syndromes
The Sir William Kilpatrick Churchill Fellowship to research new content and electronic delivery of training for Prader-Willi Syndrome for city, regional and remote communities - USA
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In 2017, I was awarded the Sir William Kilpatrick Churchill Fellowship to research new content and electronic delivery of training in PWS for city, regional and remote communities. 

This Churchill Report, titled Reaching Across Australia, contains 30 recommendations for the Board of Prader-Willi Syndrome Australia (PWSA) to guide future design and delivery of person, family and community education, training and support services. 


Short-term recommendations:

Education, training and family support 

  • Introduce an 8-step training process for PWSA
  • Develop 6 pathways for PWSA education, training and family support
  • Source international program content
  • Establish a peer to peer family mentoring program
  • Expand existing phone counselling program to cover all Australia
  • Develop programs and procedures that encourage a ‘voice’ and subsequent improved personal choice and control for people with PWS
  • Implement digital online delivery of PWSA services, including:

- Establishing Australia’s first Project ECHO telementoring program for people with PWS to connect a ‘hub’ of experts, that demonopolises knowledge to ‘spokes’ of support workers/families/practitioners, who pass their knowledge to benefit people with PWS, thereby addressing ‘thin’ markets and alleviating isolation for people with PWS in regional, rural and remote communities

  • Enable person, family and organisation advocacy and capacity building

Implementation (See full report for further implementation strategies)

  • Funding to enable a 4-day per-week, part-time position at PWSA to oversee resource preparation and education and training program implementation, in line with recommendations contained in this report. Estimated cost 24 months $250k
  • Funding to establish Australia’s first Project ECHO, Zoom based, telementoring program. Estimated cost to establish and operate for 1st yeas $200k

Mid to Long-term Recommendations

Right to life - increased average life expectancy

  • Pursue newborn bloodspot screening for PWS for all new births in Australia, thereby enabling early and accurate diagnosis, with subsequent timely targeted intervention and support
  • Secure Government subsidised growth hormone for adults
  • Expand health education resource to encourage informed, accessible, affordable and timely healthcare
  • Expand specialist clinics or enable virtual tele-clinics
  • Develop holistic best-practice support/care guidelines and training
  • Support ongoing research

Right to liberty - improved personal choice and control in line with the United Nations Convention on the Rights of Persons with Disabilities

  • Foster improved community integration, work opportunities and choice
  • Expand capacity through local, national and international collaborations
  • Support individuals in accessing Australia’s emerging National Disability Insurance Scheme (NDIS), to secure funding to purchase ‘reasonable and necessary’ support to live an ‘ordinary life’
  • Nurture informed support provision by adopting and disseminating ‘world best practice’ support guidelines

Keywords: Prader-Willi Syndrome, telehealth, telementoring, obesity, genetic subtypes, National Disability Insurance Scheme, tele-clinics, hyperphagia, restrictive practices, mortality

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