An extensive expert review has found failings in the standard of hearing tests carried out for children in NHS Lothian’s Paediatric Audiology service.
The review, conducted independently by the British Academy of Audiology (BAA), identifies significant concerns about hearing tests that were not carried out to the required professional standard, with consequences for children and their families. In some cases, diagnosis of hearing loss or impairment may have been missed or delayed.
Early identification of hearing loss or impairment from birth is important because the earlier it is picked up, the more successfully it can be treated with hearing aids or cochlear implants and the better the outcomes for the child.
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.”
Ms Gillies continued “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.
“We have already written to the most severely-affected families individually to offer support and a face-to-face meeting to discuss their child’s condition. 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.”
NHS Lothian commissioned the full, external review of the service following criticism in May about the diagnosis and care of a child with hearing difficulties. The review is part of the Health Board’s response to the recommendations made by the Scottish Public Services Ombudsman who investigated that case.
Other actions already taken include the appointment of an additional senior expert to provide support in Paediatric Audiology, a comprehensive training programme for service staff and support from NHS Ayrshire and Arran and NHS Greater Glasgow and Clyde with testing in the interim.
The review consisted of an audit of cases from 2009 -2018, an appraisal of the clinical governance structures in place as well as a week’s residential visit by external experts to observe working practices in the service.
NHS Lothian Chief Executive, Calum Campbell said: “The thoroughness of the review reflects our determination to improve the service and outcomes for the children in our care.
“We note that the report was positive about some aspects of the care of the audiology team who are committed to working hard to improve the quality of testing provided by the service.
“A number of improvements have already been made and a detailed action plan has been developed to implement all the recommendations of the BAA in full.
“We continue to work closely with the BAA and would like to thank them for their diligence and support in conducting the review.
“I apologise to the affected families and give them my assurance that lessons have been learned and that the recommendations from the review are being implemented in full.”
The National Deaf Children’s Society has called for a sweeping review of children’s audiology services in Scotland after almost a decade of failures by NHS Lothian.
At least 887 children are known to have been affected during the nine-year period, 155 significantly, but the actual number could potentially include thousands more and the problems have continued.
The charity has spoken out after a new report, published yesterday, uncovered repeated mistakes by NHS Lothian’s audiology service, with at least 100 deaf children among those affected.
The report reveals cases of deaf children being wrongly deprived of crucial technology, incorrectly discharged or identified years later than they should have been. Some have been left with life-changing consequences as a result.
In response, the charity has today written to the Cabinet Secretary for Health and Social Care, Humza Yousaf MSP. The letter calls for an assurance that such catastrophic errors will never happen again and asks for urgent Government action to improve audiology services across the country.
The failures were revealed in a new audit report, carried out by the British Academy of Audiology to examine NHS Lothian’s children’s audiology caseload of 22,900 from 2009-2018.
It sampled 1,007 cases and found there were concerns about assessment and care in 887 of them (88%). Of those, 155 had “significant concerns”.
The specific findings of the report include:
- The average age of children identified as deaf under NHS Lothian was 1,653 days (4.53 years old), compared to 109 days in England. The report says this appeared to have gone “unreported and un-noticed.”
- 12 children were eligible for cochlear implantation, but this was significantly delayed, to the extent where some missed out on getting them altogether.
- There was no evidence that nine of the children were offered a hearing aid, even though it would likely have helped them.
- 49 children had a delayed identification of hearing loss or the fitting of their hearing aid was delayed.
- 30 were not offered the right hearing aids.
- The remainder of the 155 were wrongly discharged or mismanaged.
As a result, the National Deaf Children’s Society is calling for a review of children’s audiology services across Scotland. It wants to see the Scottish Government introduce national leadership for services, robust data collection and a mandatory program setting out clear standards for care.
Without urgent action, the charity says there’s a real danger that many more deaf children risk not getting the quality of care they need.
Locally, it wants NHS Lothian to commit to following the recommendations made by the report, review its past caseload to avoid repeating the same mistakes and announce a clear plan on how it will catch up and deliver for deaf children and their families.
The charity is also strongly advising all affected families to seek independent specialist legal advice. It is already offering support to families affected and says that anyone who is worried about the report should contact its helpline.
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 at www.ndcs.org.uk.”
Lothian MSP, Miles Briggs said: ““These findings by the British Academy of Audiology are extremely concerning and families in NHS Lothian have been totally failed.
“It is crucial that all 36 recommendations for the paediatric audiology service are implemented as soon as possible.
“The average age for diagnosing hearing loss in NHS Lothian is far too late and measures must be put into place to ensure that children with hearing loss are diagnosed much sooner.
“I have written to the Health Secretary to request a meeting about why it takes four and half years in NHS Lothian for a child to be diagnosed with hearing loss, compared to 109 days in England.”
Copies of the report are available:
NHS Lothian Helpline: 0131 465 5457 Mondays to Fridays 9.00am to 4.00pm.
National Deaf Children’s Society Helpline: 0800 800 8880 Mondays to Fridays 9.00am – 5.00pm
For information and services provided by the National Deaf Children Society, please visit their website https://www.ndcs.org.uk/our-services/
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