This summary and the BSL translation of it are informal, produced for the members of Deaf Education Matters Scotland Facebook site. Anything in blue is a comment to explain the jargon or background, not in the report.
The Audit Report
This is an audit report commissioned by NHS Lothian after an ombudsman report in May 2021. Child A had received very late diagnosis and the parents complained, then appealed when the complaint was rejected.
Lothian covers the authorities Edinburgh, East Lothian, West Lothian and Midlothian.
12 audiologists from the British Academy of Audiology carried out the case file audit. They looked at a sample of all cases from 2009 to 2019 in child audiology. NHS
They didn’t look at all children but tried to focus in on the ones most likely to have received a poor service:
- anyone over this period whose parents had complained (6);
- a sample of those on the list of permanent childhood deafness register. They looked at 100 which was 25% of babies under age 1, and 30% of the children aged 1 – 10 (100/354);
- anyone who was discharged but later diagnosed as permanently deaf (15/15);
- any child who had ABR at birth then discharged (71/ 723);
- Children seen more than 3 times (they looked a more of them depending on how many times they had been seen, so 50% of those seen more than 15 times) (332 /4,106);
- any child seen for behavioural testing, then discharged (377/13,226);
- any child seen twice for testing (ABR and behavioural) then discharged (212/4470).
What is ABR?
Auditory Brainstem Response. An ABR is used to screen your baby’s hearing at birth and is also used to help work out how deaf he/she is, and the type of deafness your baby has, if your baby has a refer outcome from the screen.
The test involves three small sensors being placed on your baby’s head and neck, and a small, soft earpiece or headphone being put in or over your baby’s ear. If your baby has a refer outcome from the screen, then another test (called bone conduction) will also be done. In this test a small bone conduction piece of plastic is placed on the bone behind your baby’s ear. Your baby should be sleeping at the time of the assessment as the ABR measures the response of the brain to sound.
The ABR is used at the screen when the baby is just a day old and it tests large parts of the inner ear to see if the sensory cells are responding to sound. In the follow-up assessment in the audiology clinic, smaller parts of the ear are tested each time which means a more accurate picture of your baby’s hearing can be worked out. The bone conduction test will also let you know if the deafness is permanent.
What is behavioural testing?
The assessment most often used in the audiology clinic with toddlers is called Visual Reinforcement Audiometry. Your child will be around 8 months old and should be able to sit independently and turn their head. The test involves an audiologist/educational audiologist playing with your child and a second audiologist playing sounds through a speaker or insert headphones. When your child responds to the sound, they receive a visual reward – eg they see a clown pop up. There are standard methods of finding out if your child responded to the sound. Lothian NHS were incorrectly recording a range of non-standard child behaviours to find out about hearing thresholds – that is they were trying to find out the softest sound that could be heard.
Method for the file investigation
The audiologists rated each file on a scale 1- 10. Those labelled 1- 4 had several minor issues or one or two major issues. An example of an issue would be discharging a child from ABR without following the NHS rules. The ones labelled 1 – 4 were reviewed by the senior member of the investigation team.
They reviewed 1,033 records. The records from the 2008/9 period were very poor with some missing files.
190 of the children had moderate concerns (score 5 – 6)
155 had major concerns (score 1 – 4)
Here is more information about the 155:
- 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 9 of the children were offered a hearing aid, even though it would likely have helped them.
- 49 children had a delayed identification of deafness 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.
- But we must remember that the files looked at were not all of them.
The ABR tests were recorded incorrectly and did not follow standard procedures. They were not thorough enough at high frequencies. – those which are most often deafer in children. They hardly used bone conduction. There was not any peer review in the department, that is when colleagues would check results.
Behavioural testing of children over 5 (e.g. toy audiometry) was mostly fine, except with poor record keeping. For example, often the middle ear pressures were missing. But for the 0 – 5s, behavioural testing was very poor. There was no clear pathway for glue ear, that is no rules about who to see again or who to fit with hearing aids. Some children were seen a lot. For 99 of these children there should have been follow up but there were no clear rules followed about what to do. They could have been aided or referred to schools – we don’t know whether this happened. For 174 children there was poor quality behavioural testing in this age group. The team showed a lack of understanding that a response with this type of testing is not a threshold. A threshold is the softest sound a child can hear.
Generally because of this mismanagement, 82 deaf children were late diagnosed. They were re-referred later on, it is reported.
When families went to this clinic, the history notes were not available to the audiologist. Everyone seems to have followed their own rules on the decision pathways. They didn’t use standard record keeping. Children with risk factors were often discharged. A risk factor is something like – deafness in the family, children from certain ethnic groups. They didn’t use the red flag system, which is part of the national guidelines. 25 of the children on the register of deaf children with permanent deafness were missing – there were no records.
When they found a child very late, they recorded ‘progressive’ on the records, even when there were many indications of deafness from birth.
Progressive is the term used for children who start as hearing then go deaf.
In some cases, the parents were told that the behavioural testing was more accurate than the ABR, even though there were clear errors in the behavioural testing. So there was a lack of reflection within the team.
7 children were referred late to Crosshouse for a cochlear implant and not allowed to have one because the referral was so late. They had parent and NDCS complaints about this, but they did not reflect on them.
The notes show examples of the audiologists having a dismissive attitude to the child or the parents or other professionals.
The team often relied on parental views about deafness rather than their test evidence. Usually in the direction of not being worried. There is research to show parental views are often inaccurate.
They carried on using visual reinforcement audiometry on children aged 4 – 7 for whom it is no longer relevant. For this age group it is usually possible to use pure tone audiometry with headphones.
Some children were referred to ENT for conductive management when the child had a sensori neural deafness.
Conductive deafness is middle ear problem, for example glue ear. Sensori-neural deafness is an inner ear or auditory nerve issue. The difference can be worked out from careful testing but the team didn’t seem to know about this.
They did not have a Did Not Attend safeguarding procedure. Some families with risk factors and recently diagnosed deafness did not turn up and nobody checked. Hearing aids were generally managed better than the testing side, but some children were under-aided. If hearing aid users did not attend, there was no follow up procedure.
- VRA training
- 2 members of staff to do ABR training including for complex cases
- More training on sharing the news with parents
- Senior level support for ABR and VRA with scientific knowledge to set up new systems
Highly important – next 12 weeks (up to end March 22?)
- Tell the families and everyone
- Lots of staff training
- Follow DNA procedures and understand child protection more
- Go back to all newborn screen refer results and offer them an audiology appointment
- Go to all ABR testing over last 5 years for review.
- Recall those flagged up in the review
- Then use risk factors to recall more.
This is a significant failure of the health board to provide a safe, effective audiology service.
The Governance Report
A second report was carried out by a different team of 2 audiologists. This team did visits and observed practices in the department. They used the national paediatric audiology quality standards as the basis for their review. They interviewed 23 people connected to the department including speech and language therapists, administrators and newborn screeners. This team reached some similar conclusions.
Results of observation report
The audiology team felt they worked in a good workplace where people were listened to. Only one person highlighted improvements were needed in ABR. They have a strong interdisciplinary approach.
The training was an issue – although they had general audiology training, their paediatric training was in-house. There was no higher-level training. There was no journal club or evidence of reading up to date research literature. Not many staff were in the British Society of Audiology or the British Academy of Audiology.
The way VRA testing was conducted was very high risk, according to the assessors who visited. That is, the procedures were not being followed. In play audiometry, the audiologists didn’t know how to condition the child and keep this going. They saw that the child became confused. Their results were therefore not secure. They sometimes stopped or reduced the play just before the stimulus, which was a clear visual clue. There was only one set of toys, that is, it was boring for the child and they were not likely to stay interested.
ABR – Until this report, there was only one person in the department who did this crucial gold standard test. Now they are doing emergency training for a second person. There was a fault on the bone conduction equipment. Bone conduction testing wasn’t being used consistently.
Speech testing – the team were not using the most modern methods. They did not check if the child had the vocabulary before using items in the test.
A speech test is a way of checking what a child can hear and repeat with and without hearing aids.
Pure tone audiometry
This is the test with headphones where the child hears a beep in one ear.
This was mostly fine. There was too much checking round the threshold which isn’t needed. The threshold is the softest sound at different frequencies that the child can hear.
Test selection – this depends on the developmental age of the child. Pure tone audiometry can start from age 2, but only if the child has expected development. A child with additional disabilities may not be suitable for pure tone audiometry.
Over-reliance on parental views. This is not a good idea as parents are often inaccurate.
They were not aiding mildly deaf children – that is not looking at recent research evidence. They were also not considering fitting hearing aids for children with 4kHz ski slope losses.
A ski slope loss, very common in deaf children, is where the lower sounds like /m/ can be heard easily but the higher frequency sounds like /s/ can’t be heard.
This suggests that the team is out of date and not understanding their role.
Ear mould turnaround is 2 weeks. It should be 24 hours, particularly for babies. This suggests systems are poor.
The managers did not update the guidance. This has been recommended for all Scottish paediatric audiology teams in 2007, but not acted on in Lothian.
The structure of the department is flat – there was only one manager and when this person is on leave, decisions are delayed. There was a reduction in the number of lead posts with no substitution. For example, 2 clinical leads were merged to one post. Standards and procedures were not seen as everyone’s job. Too much was focused on the head of department.
There were checks carried out between the Health Boards but these were not rigorous. This should be every 2 years. The self-assessment for some testing skills was 5/5. The standards for peer review were updated in 2016, needing more evidence. The self-assessments were consistently high and sometimes after the visit the results seem to have been moved upwards, which did not match the notes of the team visiting Lothian.
This team also picked up the lack of knowledge about child protection procedures.
In general the audiology team appeared to run well, but this was not actually the case as we have seen. The newborn screening team was not part of this review, but they did not appear to be running well. They didn’t have all the equipment they needed, which could impact their results.
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. NDCS said this information about delayed identification appeared to have gone “unreported and un-noticed.”
The audiology team has some good features, such as they seem to work well together. But there are key problems with ABR and VRA testing of young children. There is a lack of scientific leadership. The team was not following correct procedures for the tests, or updated guidance e.g. bone conduction with ABR. Staff were not skilled enough in doing the tests or in interpreting the results. Many only had clinical practice experience in this department. The audiologists said that the child’s deafness was progressive rather than suspecting their own competence. The health board didn’t monitor complaints – these stayed within the department. The peer review most recently from 2017 had raised issues, not taken up by the board. Staff were not using recent evidence in the procedures and guidelines.
Urgent – improve ABR and VRA training. Spares for screening programme. Toys increased.
High priority – within 12 weeks. Share with colleagues in related disciplines. More training on mild and high frequency deafness. Training on how to select, carry out and make conclusions from test results. Get child protection procedure improved and all staff know what to do. Support the newborn screening team more.
Medium priority – 3 months. Identify internal and external peer reviewers. Involve staff in quality assurance procedures. Improve complaints procedure. Observe good practice in other teams.
The last sentence is strange – the team has the potential to be a centre of good practice!
Summary by Rachel O’Neill. BSL Translation by Lesley McGilp.