The National Deaf Children’s Society has backed calls in the Scottish Parliament for more support for deaf children affected by the NHS Lothian audiology scandal.
A motion proposed by Jeremy Balfour, Conservative MSP for Lothians, on the current lack of support, has received cross party backing and will be debated in Parliament tomorrow (Thursday 8th June).
The debate follows a roundtable which Mr Balfour organised with families whose children were affected by the scandal earlier in the year.
The motion highlights that the failure of NHS Lothian to identify children’s deafness early will mean some children permanently miss out on opportunities to develop language and communication.
An independent report published in 2021, found that NHS Lothian was identifying children’s deafness when they were on average 4.5 years old, while the average age of identification as deaf in England was three months. The report was commissioned after the National Deaf Children’s Society raised concerns about the quality of children’s audiology at NHS Lothian.
Mark Ballard, Head of Policy for Scotland for the National Deaf Children’s Society, welcomed the debate saying: “It’s vital that NHS Lothian and local authorities work together to ensure every child affected by the failings of NHS Lothian’s paediatric audiology service get the support that they need to thrive.
“We must not fail these children twice – first by failing to identify their deafness and then by failing to give them the support they need, especially as their needs may be more complex due to late identification.”
The National Deaf Children’s Society is calling for a specialist resource provision to be set up within a school in Lothian and the Borders, similar to those in Glasgow, Falkirk and Dundee.
The charity wants NHS Lothian and local authorities to work together on an individual plan for support for every deaf child involved.
The National Deaf Children’s Society also calls for the recruitment of additional specialist staff to address the more complex language and communications needs of children whose deafness was missed in the early years, who may struggle to catch up with their hearing classmates.
Professor Jacqueline Taylor has been appointed as the chair of a National Audiology Review Group.
The former NHS Clinical Director and Associate Medical Director will oversee the review of hearing services provided to both children and adults in Health Boards across Scotland.
It comes after a report published in December 2021 outlined a series of errors in the treatment provided to children by Paediatric Audiology in NHS Lothian. The group will provide recommendations for a national plan for the service.
Health Secretary, Humza Yousaf said: “I would like to thank Professor Taylor for agreeing to take on this important role which will help shape the future of audiology services in Scotland moving forward.
“Professor Taylor is one of the most respected medical figures in Scotland and I know that she will provide the necessary leadership and oversight for this vital work.
“I am determined that our hearing services are fit for purpose in Scotland following the unacceptable failures in NHS Lothian which came to light last year and this group will help identify any wider issues and areas for improvement.”
Professor Taylor said: “I look forward to working with this group over the coming months. “We expect to engage with the widest range of professionals and stakeholders in this area, identifying any gaps in provision but also learning from good practice.
“NHS Scotland provides some of the best healthcare treatment in the world, but where issues emerge it is important to understand what went wrong and how this can be rectified.”
The remit of the review, its full membership and timetable for reporting is now being finalised with the Chair.
The National Deaf Children’s Society has responded to the Scottish Government’s announcement that Professor Jacqueline Taylor has been appointed as the chair of a National Audiology Review Group.
Mark Ballard, Head of Policy for Scotland at the National Deaf Children’s Society, said:“We welcome the appointment of Professor Taylor and it’s a clear signal that the Scottish Government is treating this issue with the gravity it requires.
“The total number of families affected by NHS Lothian’s failures is still unknown. Among those that were, there are deaf children who have been left dealing with life-changing consequences.
“We need this review to not only right a serious injustice, but also to make sure that this isn’t happening in other areas across Scotland.
“It is a crucial step towards making sure that no family ever has to go through this again.”
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.”
