I learned about the Families Failed by Lothian Audiology Action Group (FLAAG) from our brilliant Teacher of the Deaf, she knew we were feeling overwhelmed and she knew about people coming together to form a group. I’m so glad she did!
We have had a couple of social events, one with children and one with adults. Both were brilliant, and a great source of support for us. There is a bit of a gap in the social activities locally for deaf children so having the chance for our children to find a peer group has been brilliant, and led to a weekly group being set up as a peer support/BSL learning/coffee and chats in Midlothian. It is in the early stages and is funding dependent so we are working on how we can keep it going and develop it more!
We’ve also been involved in campaigning for better support for our children. We haven’t found all the families affected by the Lothian Audiology failures so we are keen to do that, and to push for access to BSL and speech therapists who specialise in working with deaf children, and for joined up services to support making up for all the time our children lost due to late diagnosis.
Building a network of peers for our son has been the best benefit of being part of FLAAG, finding a place for him to be confident in himself and be part of a group. We found a BSL tutor through FLAAG, a Deaf BSL user herself and she has been teaching our family (as well as being a mentor and support), which has been a game changer. The support for me personally has also been brilliant, other families who understand what we’ve been through, can share information with and just socialise with and the professionals who really care about our children and have the skills and experience to offer support. I never thought I’d be a campaigner, but through FLAAG I am not fighting for support alone. Having a group of us pushing for deaf children, in particular the deaf children who were let down by audiology, is great because we can achieve more together. We spoke in the Scottish Parliament last week, telling our stories and what our children need now to MSPs.
A lot of new parents to the group are looking to see if others have shared experiences. There is so much overlap in our stories, and the Facebook group has been a great place for people to connect with others in similar positions, and to share information. Before joining the group, we didn’t know what to expect from speech therapy or about the different educational support plans, for example, and through information sharing we learned what our child needed and were able to push for that.
I think health and education need to work together to support FLAAG families, there currently isn’t any joined up support and this leaves families confused and overwhelmed with the different professionals involved. Our children need proper assessments, independent ones, to find out what support and how often would actually support the children. We need access to specialist speech therapists, and to BSL. Not being able to communicate with your child feels awful, and there isn’t readily available BSL support that is financially and practically accessible to families.
I do think it is really important to review the audiology services, as the Taylor Review is doing just now, but I think an accurate review would have been to have families and individuals who use or have used the service much more involved. Also, I think that audiology has not made attempts for remedial action because they have the excuse of this review, and I think action to support the children who were failed should have been a vital part of the follow up to the initial audit. Language acquisition is time sensitive, and action is needed alongside the report.
I hope that we continue to find families who have been affected. I think there will be a lot of families struggling through this alone, and we all want to be a support network to each family affected. We plan to continue with our campaigning and I hope we are successful in getting better support! Finally, I hope we can develop the peer support group and that our children keep growing in their friendships through this.