NHS Lothian failed too many deaf children. Now it must ensure the right lessons have been learned – Foysol Choudhury
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People across Edinburgh place their trust in the NHS at all stages of their lives. However, some families in Edinburgh were unfortunately failed by the service they relied on to diagnose deafness in their children.
In 2021, the British Academy of Audiology carried out an audit of NHS Lothian’s paediatric audiology caseload from 2009 to 2018. Of the cases sampled, it found concerns about assessment and care in 88 per cent. That means many children across Lothian were potentially failed by this audiology service and a lack of support. Late-diagnosed deaf children have lost out on years of potential support and guidance because of this.
I have read some difficult accounts of children who were eligible for a cochlear implant, which would have allowed them the ability to hear. However, due to failings in diagnosis, or late diagnosis, some children were devastatingly too old or no longer eligible for this potentially life-changing technology. Some families have been told that their child may not ever be able to speak or will face major language and communication difficulties throughout their lives as a result of the late diagnoses.
Not only have these failings in children’s audiology services meant that deaf children have lost out on years of potential support and guidance, but the children and their families are now having to navigate a world with their diagnosis but without sufficient support, which they deserve.
A one-size approach will not fit all. There must be multi-agency, tailored support available for those affected. By tailored support, I mean taking each child’s case individually and assessing how best to support them and their families. For some, this may be access to British Sign Language lessons and teachers of the deaf to support children and their families. For others, it may be developing different techniques or methods for communication with their families, teachers and friends.
Additional support also needs to be offered to families whose children have learning or communication difficulties. This is how we can continue to support the families whose lives have been permanently altered by NHS Lothian’s paediatric audiology failures.
Also, more work should be done to identify children outwith the audit who may have also been wrongly or belatedly diagnosed. I’m also concerned to learn that there are some cases of identified children who have not responded to communications from NHS Lothian. More should be done to reach out to these families and ensure these children are getting the support they need.
The audiology audit flagged up failures in the service’s identification of children with hearing loss. However, it has also exposed further failures in the multi-agency process which should be in place to support deaf children and their families, whether this be in the home, in school or in speech and language services.
As the Families failed by Lothian Audiology Action Group (FLAAG) has emphasised, support must now be provided across the board to make up for lost time and ensure the affected children can thrive. I hope that the action to be taken is not just a one-off solution, but is instead implemented in future practice to ensure that our children across Edinburgh and the Lothians are given the start in life they deserve.
Foysol Choudhury is a Labour MSP for Lothian