The dust has settled over the late 2021 British Academy of Audiology Report about NHS Lothian Paediatric Audiology failings. NHS action plans have turned their action points from red to green. But what has really been happening to the children and their families? Here we comment on the publications which have emerged so far about the scandal and the implications. All the publications can be found in this blog.
British Sign Language is crucial for late diagnosed deaf children
Two of the late diagnosed deaf children’s families have had their cases heard by an additional support for learning tribunal so far. Both these children had Co-ordinated Support Plans, a plan which previous to 2021 was very rarely awarded to deaf children. To get a CSP the child needs to have the active involvement of more than two agencies, for example education and speech and language therapy. Only 0.4% of children with additional support needs in Scotland receive a CSP (Scottish Government, 2024); these plans give strong statutory rights to deaf children and their family. They specify levels of provision in a way that the usual child’s plan or local authority individual education plan can’t do.
The first tribunal related to one of the late diagnosed Lothian and Scottish Borders children was made before the BAA report was published, in October 2021 (FTS/HEC/AR/21/0106). The child was diagnosed at age 7 and aged 11 at the time of the tribunal. The child needed a BSL tutor, but the local authority had not provided one. The tribunal instructed them to find a BSL tutor which they managed to do for a few months. The authority later recruited a part time BSL tutor.
The second deaf child’s tribunal was in February 2024 (FTS/HEC/23/0162). He was diagnosed at 5 and a half and has an additional disability. He was 9 years old at the time of the tribunal. The council had refused a placing request for a place in a special school which had staff who could use fluent BSL. The tribunal overturned their decision so the child is now at the special school.
These authorities were not able to offer a BSL learning environment to support deaf children who were late diagnosed. Although the official policy across Scotland and the UK is that parents can make a choice about their preferred languages combination, in practice these authorities were not ready (NDCS, 2024). However, the tribunal decisions made a difference to local authority hiring practices. National Deaf Children’s Society has provided legal support in both cases, with Iain Nisbet from Cairn Legal representing them. Further tribunals are likely to follow.
Kirsten Obioye’s son was 3 when diagnosed. She wrote an article for the British Medical Journal in the series ‘What is your patient thinking’. She was distressed at how much hostility she met from health service staff against the family’s decisions to use both British Sign Language and spoken English with their son. The family decided on a cochlear implant. When her son woke up from the operation the nursing staff could not understand his signing when he was asking for his mother.
A small-scale Master’s study explored the views of parents in some detail (Allan, 2024). Tania Allan interviewed five parents with late diagnosed deaf children affected by the NHS Lothian audiology crisis. They lived in three of the affected five local authorities (East Lothian, West Lothian, Midlothian, Edinburgh, Scottish Borders). There were differences between the authorities in the way that services for deaf children and speech therapy services had been provided. Parents didn’t have any rights to free tuition in BSL. They were also not happy with the quality of support from audiology and speech therapy after the diagnoses. Some had turned to private providers of both BSL and speech therapy, while other families could not afford to do so.
NHS responses
The Taylor Review published in 2023 was wide-ranging and systematic, covering both child and adult audiology services across Scotland. The report explains the reason for the review, the systematic failings in NHS Lothian Paediatric Audiology services. The remit was very tight: it looked at the audiology services across Scotland but did not extend to speech and language services or to education services needed by the late diagnosed children. It was more to improve the systems in audiology than to take care of the casualties caused by the poor level of child audiology services. Four factors were identified for causing the very poor levels of audiology service they found all over Scotland: inadequate workforce planning, poor quality assurance, not enough staff training and no national oversight for the work. They sampled some health boards and found not enough knowledge of key procedures for testing deaf children’s hearing across Scotland. This was a partial survey.
The Scottish Government has recently (April, 2025) responded to this report, having accepted the recommendations in 2023. This latest report shows the action plans have turned green so they are satisfied that audiology services are now much improved across Scotland. Light green is recorded as ‘transitioned’ which in other action plans would be orange to show that a start has been made.
After this report, the NHS in England conducted a similar exercise. They found that 64% of England and Wales paediatric audiology services had weaknesses about the way they dealt with children after newborn screening. The NHS in England want to have answers to these issues by March 2025 but they have not been as open as the Scottish Government in publishing their report. However, it seems they have managed to collect more data.
Wales has published their review of child audiology services in 2024. So far there does not seem to have been a similar check taking place in Northern Ireland.
So what has changed?
Responses from the NHS so far have been focused on getting audiology services improved and systems working properly. There has not yet been a coordinated approach examining what training speech and language therapists (SLTs) need to work with late diagnosed deaf children (deafness is only one of 17 SLT specialisms, as the head of the Scotland’s Royal College of SLT reminds us), or how education services for deaf children can receive more accurate and earlier information about late diagnosed deaf children. The FLAAG group is still finding parents are joining because their children have been late diagnosed in the five Lothian local authority areas. Demand for BSL classes especially in family homes is soaring across the UK. But still there is no provision, no workforce planning and no qualifications for the deaf BSL tutors and role models that could be working with early years teams. The ‘informed choice’ policy sails on, as it always has, not providing any actual alternatives to just use speech.
