Usher Syndrome diagnosis survey

Introduction

The Sense Usher Service provides information, advice, assessments and training. Through our work we meet many people with Usher and their families, either when they are initially diagnosed or further along the way.

People find out about their Usher syndrome in different ways – it may be that they found out directly from their parents or doctors. For some, they may have suspected they had Usher through school friends or an internet search.

People will have different responses to finding out they have Usher and some may have more access to information about their condition than others.

Here at the Usher Service we would like to do some research into how to make it better for those who are yet to be diagnosed by creating a diagnosis tool kit for professionals, and we need your help.

So, what would we like you to do?

We have created a survey that can be completed below. For people who would prefer to answer in BSL please contact usher@sense.org.uk.

You will not have to give your name and all responses will be anonymised.

Once we have collected the information we will use it to give a talk at DbI Deafblind Conference in August 2019. We will write an academic paper on the information gathered and later in the year, we will set up a working group to develop a toolkit to help professionals deliver the diagnosis in the best way possible.

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* 1. Where do you live?

England

Wales

Northern Ireland

Scotland

Somewhere else:

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* 2. How old are you?

16-24

25-34

35-44

45-59

60+

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* 3. What type of Usher do you have?

Do not know

Type 1

Type 2

Type 3

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* 4. Who told you that you have Usher? Please tick all that apply.

Parent

Family member

Eye specialist

Social Services

Cochlear implant assessment

I do not remember when I found out

I was told little bits about my Usher over a period of time

I found out for myself – if you would like to, please tell us how below

Other, please tell us who if you would like to:

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* 5. Do you remember how old you were when you found out?

Yes

Yes – if you would like to please tell us how old you were:

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* 6. The following questions allow you to write as much, or little, as you would like.

Do you remember an occasion when a professional talked to you about Usher for the first time?

Using the two boxes below please describe as much as want about that experience. The first box is for you to describe what happened, the second box is for to describe how you felt about the appointment.

Please describe what happened. E.g. who was the appointment with? What was the appointment like? What did they say? What information did you receive? What else happened?

Please describe how the appointment made you feel. E.g. you may have felt one way at the start of the appointment and a different way by the end of it.

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* 7. Thinking about this appointment, what can you remember that was perhaps more positive, and what was maybe not so positive, about the experience?

Positive:

Not so positive:

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* 8. At the end of the appointment what did you think you had learnt and understood about Usher? Was there anything you did not understand, that you know now?

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* 9. Is there anything that you wish you:

Had been told:

Had NOT been told:

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* 10. We are thinking about producing a new toolkit to help professionals and people with Usher when they are newly diagnosed. What do you think should be in it?