Report finds 'significant failings' in NHS Lothian diagnosis of deaf children
The health board has apologised
Last updated 9th Dec 2021
A report has criticised NHS Lothian for 'serious failings' in its paediatric audiology service, which led to some deaf children being diagnosed too late for crucial treatment - and dozens more having their potential hearing loss mismanaged.
The British Academy of Audiology was asked to audit the department's performance between 2009-18 and published its findings today - including 36 recommendations to improve.
In total, it analysed 1,113 patient records and found 155 children were identified as having significant failures in their treatment.
The health board has apologised for what it has uncovered, including failings in the standard of its hearing tests for young people.
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Dr Tracey Gillies, Medical Director, NHS Lothian said: “We are very sorry and saddened to learn that there are some children whose conditions were not diagnosed correctly, or as early as possible, as a result of testing that was not up to standard.
“Due to these failings, the diagnosis of hearing loss or impairment in six children was missed. Diagnosis of a further six children was significantly delayed with long term consequences for these children. Their long-term development of speech and language will be affected and these children will require specialist support.
“Delayed diagnosis of hearing loss in a further 48 children is also likely to have resulted in some harm, though the longer-term impact of this will depend on the individual circumstances of each child. Some children may require to be retested."
'A real-life nightmare'
Charity bosses and politicians have been responding to the report - with one group calling for a Scotland-wide review of audiology services.
Susan Daniels, Chief Executive at the National Deaf Children’s Society, said: “The horrendous findings in this report represent a real-life nightmare for the families involved. They placed their trust in a service that was supposed to help, only to be completely let down.
"Some will be left with life-changing consequences, while many others across Scotland will now be facing the very real fear that the same thing could happen to them.
“Early identification and the right care are vital in helping deaf children develop language and communication at a crucial age, so this must never be allowed to happen again.
“This means we need urgent action from the Scottish Government, starting with a thorough review of children’s audiology services across the country. Until we have national leadership, better data collection and mandatory standards that services must comply with, thousands more deaf children could be at risk and families won’t be able to rest.
“We’re already in touch with several families affected and we’ve provided them with support and guidance. Anyone else who’s been affected, or feels worried about this issue, can contact our helpline or visit our website."
Scottish Labour MSP for the Lothians Sarah Boyack said: “These findings are a shocking and appalling wake-up call.
“It is devastating to think how much lasting damage has been done as a result of over a decade of failure.
“Escalating the Health Board to stage 3 is the right decision, but it is just the first step.
“The report’s recommendations must be delivered in full as a matter of urgency, and there must be an investigation to establish how things were allowed to go so badly wrong for so long.”
Advice for affected families
NHS Lothian is now offering meetings with the families who've been most severely affected by the failings.
Dr Gillies added: "We have also arranged appointments for those children whom the review recommends should be tested again.
“In addition, measures have been put in place to identify young children currently in the system whose cases may require clinical review. If any concerns are found, the families will be contacted immediately.
“We apologise sincerely to all affected children and their families for these failings and for the worry and distress caused. We would encourage families who may have concerns to contact our helpline for information on 0131 465 5457. Lines will be open on Monday to Friday from 9am to 4pm.
“We have been engaging closely with the National Deaf Children’s Society and would like to thank them for the support they are able to provide families via their own helpline, which can be contacted on 0808 800 8880.”