To ask the Scottish Government how many press releases were issued by NHS Lothian that were intended to inform families about the measures that had been put in place to encourage and support families to seek a retest if they had concerns about a child’s hearing, as a result of the failings in NHS Lothian paediatric audiology care identified by the British Academy of Audiology, between (a) December 2021 and February 2022, (b) March and May 2022, (c) June and August 2022 and (d) September and October 2022.
The National Audiology Review Group continues its independent review of services having most recently convened on 25 October. It will shortly be meeting with the Review’s Chair for an update on their progress and their developing recommendations.
The review is pursuing four workstreams encompassing the lived experience, governance, quality assurance and education and will fully report in the new year.
Following the publication of the review findings in December 2021, NHS Lothian has had extensive interactions with a range of professionals who work with children and young people to highlight the key findings in the report and this has included Speech and Language Therapists, Health Visitors, General Practice, Ear Nose and Throat clinicians, Community Paediatricians and teaching staff, with further communication to the Director of Education.
This has involved individual meetings with professionals as well as the development of a staff briefing document, which was widely circulated across key networks. As part of this process, those working with children who had any concerns about a child's hearing were encouraged to contact the Audiology department directly or to refer the child through the normal referral route (e.g. Health Visitor, Speech and Language, the GP, etc.).
Information has been widely disseminated through professional staff groups working directly with children and their families, with clear mechanisms for children to be referred to the Audiology department where there are concerns about their hearing. A telephone helpline was established on 9 December 2021 and this continues to be in operation to make it easy for families to make direct contact with NHS Lothian about any audiology concerns. NHS Lothian also works closely with the National Deaf Children Society to support families.
As of July 2022, 202 families have been directly contacted by NHS Lothian and offered a retest. This work is based on the timeline associated with the Scottish Public Services Ombudsman (SPSO) investigation and the sample size of the British Academy of Audiology (BAA) review, which covers the period 2009-2018. The number of children that have now had that retest is 47, with a further 31 with an appointment date. The number of children who were retested were found after retesting to have a (new) hearing impairment is 10. Families that have not responded to the initial letter have been sent a follow up letter highlighting the importance to make contact with the service.
The Ombudsman asked for an external audit across 2009-2018 and NHS Lothian commissioned BAA to design and conduct the audit. Nearly 23000 children had been seen in this timeframe. They proposed and audited children in 7 cohorts, which were stratified for those children who were higher risk.
Cohort 1 - Any complaints made to NHS Lothian or anonymous complaints to BAA
Cohort 2 - Any child on permanent childhood hearing impairment (PCHI) register at NHS Lothian
Cohort 3 - Any child who had been seen by the paediatric audiology service at NHS Lothian and discharged but went on the be later diagnosed with permanent hearing loss
Cohort 4 - Any child seen for ABR testing at birth and following result discharged from the service
Cohort 5 - Any child seen three or more times by the service
Cohort 6 - Any child seen for behavioural testing once by the service with no further appointments
Cohort 7 - Any child seen twice by the service then discharged with no further appointments
Of the 1,007 that were able to be reviewed (for various reasons including failed to attend, 113 children could not be reviewed) there were 120 where there were no concerns reported; 542 were reported as having minor concerns; 190 moderate concerns, and 155 with reported significant concerns. BAA defined significant concerns as those where there may have been an impact on the child’s clinical outcome. In all other audited cases, (852 cases) no impact on clinical outcome was considered likely by BAA.
The method and cohorts for the review were set by BAA, not NHS Lothian, and were designed to look particularly at cases where the child had been discharged but then was referred back in or subsequently identified with a hearing loss. At NHS Lothian's request, BAA then undertook to look at more cases from younger children or more recent years, and all children entered onto the register of permanent childhood hearing impairment.
Of the 155 cases, all have been considered by NHS Lothian and action taken. The cases have been prioritised to manage the most urgent within two main groups, those with the possibility of their current active clinical care needing to be changed (92 cases) and those where there was a clinical governance failing (63) but where the treatment was believed to be correct now. The allocation of cases into these categories were shared and agreed with the BAA and the appropriate follow up action has been undertaken by the Health Board.
- Of the 92 cases – 44 were in categories of glue ear, tinnitus and hyperacusis or without follow up and these have been clinically reviewed rather than subject to automatic recall for clinical appointments.
- Of the remaining 48 cases, 36 have attended for review
- 16 children with hearing loss have been identified through the review process
For those 63 children in whom the management by the BAA team was now felt to be correct but in whom a serious concern in the pathway to that management was identified, contact has been made with families and meetings have been offered.
With regards to any review being made public, the first set of reports from the BAA were published and are publicly available on the NHS Lothian website and also the British Academy of Audiology (BAA) website. The further review by the BAA on ABR testing over the last 5 years is not yet complete. The information is currently being reviewed to ensure that the content is accurate and that information provided to patients and families is correct. Once this work is complete, it is expected that a summary report will be discussed at NHS public Lothian’s Board meeting, the papers and minutes of which are published on NHS Lothian’s website. With regards to press releases, the Scottish Government does not hold that information, it would need to be obtained directly from NHS Lothian.