Meeting of the Parliament 08 June 2023
Although I am not a Lothian representative, the issue is incredibly close to my heart. I express my heartfelt gratitude to Jeremy Balfour for bringing this crucial debate to the chamber today.
Ensuring that late-diagnosed deaf children receive the support that they desperately need—not only in Lothian, but across Scotland—is of the utmost importance. As a CODA—child of a deaf adult—I have witnessed the challenges that are faced by people who live with and are affected by deafness. Those experiences have deepened my understanding of the immense significance of the motion that is before us today.
As we have heard, the 2021 audit of NHS Lothian’s paediatric audiology service, which was conducted by the BAA, has exposed serious failings, but we cannot ignore—as colleagues have said—that it does not include children who were seen after 2018. That is deeply concerning, because we know that the crucial stages for fluent first-language development occur in the early years.
Shockingly, the BAA report reveals that the average age of identification of deafness in children within the NHS Lothian area is 4.5 years, which far surpasses the age in other regions in Scotland. By the time of diagnosis, the critical period for language and communication development has often passed, which leads to adverse consequences that might affect children’s entire lives. It is heart-wrenching to think of the missed opportunities and the uphill battles that they will face. Many of those children will require extensive support from health, education, social work and various other agencies to address their complex needs.
Let us also take a moment to acknowledge the families failed by Lothian audiology action group—FLAAG—which is an inspiring collective that is composed of families who are directly affected by the failings. Those families’ tireless efforts shine a light on the challenges that are faced by deaf children and their families. The challenges include their having less access to British Sign Language tutors, and to speech and language therapists and other appropriately qualified professionals. By not providing those essential resources, we deny those children the opportunity to develop their language skills and to remediate any damage that has been caused by failures in the audiology service.
We must recognise that the impact of late diagnosis goes beyond the immediate effects on individual children in terms of the obstacles that they face in education, employment, and social integration. It reverberates throughout families, communities and our society as a whole. Without proper support, their potential will be stifled and their opportunities for personal growth and their ability to contribute to society might be limited.
To address that pressing issue, we must establish robust systems that guarantee timely and accurate diagnoses for all children, regardless of their geographical location or background. We must invest whole-heartedly in early intervention programs that focus on providing the necessary support from the moment when a child’s hearing difficulties are diagnosed. By doing so, we can maximise their potential, thereby allowing them to thrive and to overcome the barriers that they face.
The deaf community offers a committed support network for individuals and families who are affected by hearing loss. Within online communities, local associations and support groups, a sense of belonging and understanding flourishes. Such platforms provide a space for sharing experiences, exchanging information and finding solace in the journeys of others.
Deaf role models and success stories illuminate the path forward, serving as beacons of hope and inspiration. They demonstrate unequivocally that a late diagnosis does not define one’s potential for a fulfilling and successful life—if the support is there.
I hope that the children receive the justice that they deserve but, above all, I want them to know that their potential for a fulfilling future is limitless. Alongside Jeremy Balfour and others, I will continue to work tirelessly and across party lines to ensure that they have every opportunity to thrive.
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