Usher Syndrome Focus Group

usher syndrome coloured red and black


We’re inviting adults with Usher syndrome or families of children and young people with Usher Syndrome to share their views on Usher Syndrome in childhood for the new See Hear Strategy! Please join us to ensure that the next Scottish Government/COSLA strategy for visual impairment, deafness and deafblindness reflects what matters to your family and children living with Usher Syndrome of the future.

The focus group will be on Tuesday 21st November at 12pm via Zoom.  

Sign up by emailing deadline to sign up is Friday 10th November.

The information gathered at the focus group will be anonymised before sending to the Scottish Government. You can find out more about how we will protect your data by viewing the Privacy Notice which can be sent by email through contacting

Isabella Goldie, Deafblind Scotland CEO will be leading the focus group.

Many thanks for considering joining this important discussion.

Best Wishes

On behalf of Isabella Goldie

Background Information

See Hear Strategy Lived Experience

Adults with Usher Syndrome and families of children and young people with Usher Syndrome discussion

Background Information for Participants


The See Hear Strategy is the Scottish Government and COSLA strategy which shows their commitment to supporting children and adults who have visual impairment, deafness, and deafblindness to access the support and social care they need. The strategy was published in 2014 as a long term approach, and after 10 years, a new version is being written.

The Scottish Government’s Sensory Loss in Social Care Advisory group has agreed that the next See Hear strategy will focus on “Living a Good Life with Sensory Loss Challenges”. This means it will contain actions which will improve the lives of people with visual impairment, deafness and deafblindness after those challenges have been identified.

The Scottish Government has spoken to people with visual impairment, deafness and deafblindness and the staff who take action on the See Hear strategy in each local authority. These discussions have shaped the questions we are going to ask you in this focus group as parents or carers or children and young people who have visual impairment, deafness or deafblindness/adults interested in discussing issues relating to children and young people with deafblindness.

About the focus group

Deafblind Scotland will run an online focus group on Tuesday 21st November 2023, 12.00 – 13.30. A zoom invite will be sent nearer the time. We would be delighted if you could attend this group which will focus on childhood but in your case looking retrospectively at your own childhood and what would help the next generation of children with Usher Syndrome.

This focus group is entirely voluntary. If you choose to participate, you will be asked to confirm you have read the privacy statement and that you agree to take part. You have the right to withdraw your consent at any time without giving a reason.

You will be also asked if you would like to complete an optional and anonymous ‘About you’ or an “About my child/young person” form.

The discussion will be led by Deafblind Scotland. Focus group questions relate to what has worked well, what is not working so well, what needs to improve and who or what organisation should act to make these things better.

The focus group will be audio recorded with a notetaker in attendance. An anonymised written transcript will be prepared by our organisation and sent to the Scottish Government for analysis. Recordings of discussions, the written transcript and any other notes will be deleted once the final draft of the report is approved and no later than January 2024.

To enable the focus group to work well, we ask you to follow these ground rules:

  • Please communicate one at a time (so that people can follow and for the audio recorder and note taker)
  • Please allow time for each other to communicate
  • Please respect each other’s views and different opinions
  • Please share your views as openly and honestly as you feel able

All views and opinions expressed during the focus group are welcome and will be confidential and anonymised in the final report. We ask that participants please respect this, and do not repeat discussion, opinions or experiences outside of the focus group.

The anonymised transcript from this focus group will be combined with the transcripts from the other focus groups, and written up into a report by the Scottish Government for use in writing the See Hear strategy.

When the Scottish Government write the report of these focus groups, they may use anonymised quotes, and may change non-material details to avoid identifying you. This is accepted practice in focus group research and will protect you from being identified.

Thank you for your participation.

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