1. www.sense.org.ukwww.sense.org.uk
DbI Workshop
Diagnosis of Adults
with Usher Syndrome
Emma Boswell
Gold Coast, Australia, 2019

2. www.sense.org.ukwww.sense.org.uk
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. www.sense.org.ukwww.sense.org.uk
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. www.sense.org.ukwww.sense.org.uk
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. www.sense.org.ukwww.sense.org.uk
How much information is right?
‘I was overwhelmed by far
too much information…’
’I knew nothing compared to
now!!!’

6. www.sense.org.ukwww.sense.org.uk
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. www.sense.org.ukwww.sense.org.uk
The research results…
• Nobody gets everything and some people had
parts of best practice. Some had no aspects of
best practice

8. www.sense.org.ukwww.sense.org.uk
Age profile

9. www.sense.org.ukwww.sense.org.uk
Respondents Usher type

10. www.sense.org.ukwww.sense.org.uk
Age of diagnosis

11. www.sense.org.ukwww.sense.org.uk
Identified diagnosis wants

12. www.sense.org.ukwww.sense.org.uk
Initial reactions
©

13. www.sense.org.ukwww.sense.org.uk
Secondary reactions
©

14. www.sense.org.ukwww.sense.org.uk
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. www.sense.org.ukwww.sense.org.uk
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. www.sense.org.ukwww.sense.org.uk
usher@sense.org.uk
@SenseUsher
©