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DBI World Conference 2019 - Diagnosis of adults with Usher Syndrome

DBI World Conference 2019
Communications stream: Concurrent session 7G
Presenter: Emma Boswell
Topic: Diagnosis of adults with Usher Syndrome

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DBI World Conference 2019 - Diagnosis of adults with Usher Syndrome

  1. 1. DbI Workshop Diagnosis of Adults with Usher Syndrome Emma Boswell Gold Coast, Australia, 2019
  2. 2. Introduction • Structure of this session • Where I work • The US and what we do • Why diagnosis is important • My own Usher syndrome and diagnosis • The work so far…
  3. 3. The Project • Need came from our own crisis point work linked to diagnosis - acceptance and empowerment of Usher community • Find out what Usher community need from a diagnosis • Long term project including questionnaire & research phase in the UK Usher Community • Create on-line diagnostic tool / resource
  4. 4. Discussions Get into groups of 4 or 5, discuss and answer the following: 1. What happens in your country around diagnosis 2. Think about medical, community and Usher perspective on diagnosis 3. Feedback to the group. You have 20 minutes
  5. 5. How much information is right? ‘I was overwhelmed by far too much information…’ ’I knew nothing compared to now!!!’
  6. 6. Best practice in the UK… The best approach to diagnosis in the UK is: 1. Person gets clear diagnosis 2. Given right amount of medical information 3. Referred to specialist medical service 4. Referred to specialist support service
  7. 7. The research results… • Nobody gets everything and some people had parts of best practice. Some had no aspects of best practice
  8. 8. Age profile
  9. 9. Respondents Usher type
  10. 10. Age of diagnosis
  11. 11. Identified diagnosis wants
  12. 12. Initial reactions ©
  13. 13. Secondary reactions ©
  14. 14. What I plan to do next • The Usher diagnosis toolkit is an ongoing piece of work • Create an online resource linked to the Sense webpage for maximum reach • The online resource will be an Usher passport with a checklist of things people need to do relating to statutory, medical and third sector services and assessments. • It will also include print media about aspects of the passport and Usher Syndrome journey
  15. 15. Conclusion • The research phase has helped to identify the needs and provision around diagnosis • People want a better understanding of their diagnosis • Clear needs identified for the future tool • Research methodology will not have suited everyone living with Usher Syndrome • No funding to set up focus groups • Tight timescale
  16. 16. @SenseUsher ©