A “far higher” number of children could be affected by substandard hearing tests than previously thought.
An NHS Lothian audit found significant failures in 155 of 1,113 patients treated between 2009 and 2018, leading to children being identified as deaf years later than they should have.
But several law firms say many other families have been affected.
The British Academy of Audiology (BAA) report also revealed systemic failures within the pediatric audiology department at NHS Lothian which led to babies and children going undiagnosed or experiencing significant delays in diagnosis and treatment.
Rachel O’Neill of the University of Edinburgh, which trains teachers of the deaf in Scotland, told STV News it was an “emergency situation”.
She said: “There could be 23,000 children affected in Edinburgh and Lothians – the health board is trying to hold back the tide as it could become overwhelming.
“NHS Lothian has tried to keep a lid on all of this, we’re talking big numbers here.
“The report was published six months ago, but the board of health has failed to take responsibility. Some families have received a letter, but the children concerned are not receiving the support they need. »
Ms O’Neill also said the audit only looked at the children most likely to have been affected, adding that many more cases were inevitable as the report only covered a nine-year window.
She also said children under the age of ten with permanent deafness would not have been screened, which she said would involve at least 700 children.
A legal action
Prosecutors for Thompsons and PGMBM are both representing parents whose children may have been affected and are taking legal action against NHS Lothian.
A spokesperson for Thompsons Solicitors said: ‘This is one of the most significant medical negligence cases we have dealt with.
“Our specialist legal team represents the families of more than 20 affected children, but we strongly believe that potentially hundreds more children with hearing problems have been rejected by the NHS Lothian audiology service.
“The board of health needs to do a lot more to identify these children and contact their parents.”
Meanwhile, law firm PGMBM said the 1,007 patients analyzed in the audit were just a “sample” of those tested over the nine-year period.
Grace Smith, associate at PGMBM, said: “While the audit highlighted the 155 children who have been significantly affected by the failures of NHS Lothian, it is clear that the true number of families affected is much higher.
“The audit was carried out on a sample of just over 1,000 patients who were treated at NHS Lothian between 2009 and 2018. Over this nine-year period, there have been many more children who walked through the doors of the pediatric audiology department. The number of patient cases for this period was 22,900.
“We know that there are children who were not included in the audit sample who were affected by the deficiencies highlighted in the audit report.”
Grace Smith, Partner at PGMBM
“The audit revealed issues with 88% of the records in the sample. If this same percentage is applied to all patient cases over this period, the number of families affected by the report, delays and errors diagnosis could reach five digits.
“We know that there are children who were not included in the audit sample who were affected by the shortcomings highlighted in the audit report. ”
Significant concerns identified
The British Academy of Audiology (BAA) report identified significant concerns about hearing tests not being carried out to the required professional standards, with consequences for children and their families.
He said failures in standard hearing tests had “adversely impacted the acquisition of spoken language in the early years of many children, affecting a number of these children for life”.
In some cases, the diagnosis of hearing loss or impairment may have been missed or delayed.
Among the failures, it highlighted five children who were unsuitable for cochlear implantation due to delays in identifying hearing loss, as well as two children who were assessed as normal by NHS Lothian but who were then referred for cochlear implantation.
The report identified five more children whose cochlear implantation was delayed due to a delay in identifying hearing loss and 49 children for whom “identification and management of hearing loss were considerably delayed”.
A cochlear implant is a small electronic device that can help a person with hearing loss restore or improve their ability to hear and understand speech.
NHS Lothian apologized earlier this year after the report was published in December 2021.
“We are working on these cases in order of priority and will also continue to work with other patients during their regular appointments.”
Dr Tracey Gillies, Medical Director of NHS Lothian
Dr Tracey Gillies, Medical Director of NHS Lothian, said: “I would like to reiterate our sincere apologies to the families who have been affected by the findings of the independent audit carried out by the British Academy of Audiology (BAA) in 2021 and give them our assurance that lessons have been learned.
“We will review all children where audit and reviews by BAA have raised concerns and share any identified assessments that have not been carried out to the required standard. We are treating these cases on a priority basis and will also continue to work with other patients during their regular appointments.
NHS Lothian also said it encouraged any family whose child has been a patient who have concerns to get in touch. The helpline number is 0131 465 5457 and is available Monday through Friday from 9 a.m. to 4 p.m.
Not included in the audit sample
PGMBM says they represent a parent whose child was not included in the audit sample – but experienced significant and serious delays in diagnosis.
Ms Smith said: ‘One of the families we represent was seen by NHS Lothian Audiology on several occasions from 2019 after their child failed a hearing test at birth.
“Despite repeatedly raising concerns about their child’s hearing, they were repeatedly dismissed and told their child’s hearing was normal.
“However, at almost three years old, a second external opinion diagnosed their child with severe deafness. This significant delay in diagnoses occurred at a key stage in their child’s development.
“There are clearly more people affected than those examined in the audit sample.”
NHS Lothian commissioned a comprehensive external review of the service following criticism in May over the diagnosis and care of a hearing-impaired child.
The review was part of the health board’s response to recommendations made by the Scottish Public Services Ombudsman, who investigated the case.
It consisted of an audit of cases from 2009-2018, an assessment of the clinical governance structures in place, as well as a one-week residential visit by external experts to observe working practices in the service.
Professor Jacqueline Taylor has been appointed chair of a national audiology review panel. She will oversee the review of hearing services provided to children and adults in health boards across Scotland.