Connect with the Hearing Matters Podcast Team
Email: hearingmatterspodcast@gmail.com
Instagram: @hearing_matters_podcast
Twitter: @hearing_mattas
Facebook: Hearing Matters Podcast
Connect with the Hearing Matters Podcast Team
Email: hearingmatterspodcast@gmail.com
Instagram: @hearing_matters_podcast
Twitter: @hearing_mattas
Facebook: Hearing Matters Podcast
Thank you. Before we kick this episode off, a special thank you to our partners Cycle, built for the entire hearing care practice. Redux faster, drier, smarter, verified. Otoset, the modern ear cleaning device. Faderplugs the world's first custom adjustable earplug. This episode is going to be hosted by none other than Dr Douglas Beck himself. Get ready for expert insights and invaluable discussions coming your way.
Speaker 2:Good morning. This is Dr Douglas Beck. I am an audiologist and you're listening to the Hearing Matters podcast. Today we're speaking with Claire Benton. Claire is a pediatric audiologist and head of audiology and consultant clinical scientist in audiology at Ropewalk House in Nottingham, england. Good morning, claire. How are you?
Speaker 3:Morning. I'm very well, st Doug, nice, to see you again.
Speaker 2:Thank you, nice to see you, nice to work with you. So, claire, I'd like to speak with you about a very important topic. Today. There was a report that you gave the British Academy of Audiology in November of 23. And I was watching that live, I think, and I was kind of shocked at what I heard. So I wonder if you could summarize that report, and then we'll go into a little bit of detail. It had a lot to do with pediatric audiology through the NHS in the United Kingdom, and let me give you a couple of minutes to summarize what you said at the British Academy of Audiology.
Speaker 3:So the background is we started off with a review in one service in Scotland where there had been an incident of a late diagnosed child. This turned into a much bigger review of that service and then all services in Scotland and the profession in Scotland. They had a beautifully, really thorough review of the profession there. And then England is governed slightly differently to Scotland from the NHS point of view looked at the data we'd been collecting from our newborn screen and it suggested that possibly we too in certain centres weren't picking up all the children that we should do from the screen and therefore there was quite a large cohort of children.
Speaker 2:If I can just clarify because we don't have exactly the same dialogue and meanings. So when you say there was initially one child in Scotland through the service that's the NHS service in Scotland and that child was missed, their hearing loss was missed on their screening and that led to a larger investigation in Scotland of how many children roughly so within that one service they found over 100 children where the results hadn't been accurate, potentially with some harm to those children.
Speaker 2:Sure, sure. And then it expanded to England as well to review their protocols and their outcomes. And so when did all of that happen? That first child, the review of Scotland, and then when did it become evaluated in England?
Speaker 3:So the first child the parents went through a complaints process. That was probably back in 2021 now. So 2022 was taken up with the Scottish audiology review not just looking at children's, looking at audiology as a whole and that then, at the end of 22, was when NHS England started to look at their data. So all of last year we've been working across England trying to identify sites where there might be challenges and NHS England working really hard to identify why this is happening and where that problem has come from, and did the discord come from the child's screening results versus later results, or is it just based on a chart review?
Speaker 3:So to begin with it was well. For one case in Scotland it was the whole pathway through. They'd had their screen but then they'd been tested within the department sort of behavioural testing with very different results. They went and got a second opinion and found they had a profound loss that had not been picked up With the review. In England it started at looking at the diagnostic ABR first.
Speaker 2:It started at looking at the diagnostic ABR first, but it looks like the issues are slightly more widespread than purely ABR work within pediatric audiology. Okay, and so this was all evaluated through England in 2022, and then the report came out and you reported it in 23. So when you reported it in November of 23 to the British Academy of Audiology, how many children were involved at that point, how many had been evaluated and how many had been potentially missed with regard to their hearing loss?
Speaker 3:So we're still not at the point where we know a total number. So we also have a charity number. So we also have a charity the National Deaf Children's Society that every year runs an audit of all paediatric services and they ask us to report how many children we have on our books who are deaf. And that number had dropped significantly. So by extrapolating that data, we know the prevalence hasn't changed of children being born with hearing losses. So where are those children? And from their data, which is slightly in it not exact but it's in the realms of about 3 000 children we know should be out there, but departments are not reporting that. They're on their caseload oh my goodness.
Speaker 2:So we don't think we've got to the bottom, to it and, and so this is primarily based on abrs that are being misread. Is that fair to say?
Speaker 3:potentially. Yeah, we think our the the screening part of our screen is very robust. So the automated part, but the diagnostic ABR part is where the issues have been. We don't. It's still unfolding.
Speaker 3:So we knew a big review was carried out on several trusts where we looked at the yield from the newborn screen and they were the outliers as having quite a low yield. So we looked at them. First. That's revealed some children, but then what's happening now across the country is a review of every single service and that's finding more issues, more cases where ABRs are not necessarily following our recommended procedures, but also, once you go and look a little bit deeper, the kind of governance and structure around a paediatric department in some places that hasn't been there either, so the behavioural testing also hasn't been carried out correctly. So for for total number of children we're not there yet through and find a way of kind of risk assessing who we go and look at first and in the meantime, enough lessons have been learned from the initial wave of those first few centres to help us almost spot who we need to go and support next. Really.
Speaker 2:I'm wondering if there is a demographic guideline, in other words, do you have a percentage of children that you anticipate should fail a primary ABR screening due to fluid in their external auditory canal or other reasons, and how many then of those children would get a diagnostic referral? And then how many of those children would have substantial hearing loss?
Speaker 3:So what we measure is total coverage of the newborn screen and then not the middle bit you mentioned of how many get referred, but from the diagnostic part, what, how many are being identified there. So we have to see every child who gets referred within a set time frame and then we measure the yield for all the different screening centers and it should be that one to two per thousand births that we're expecting right and we have, and it's quite a good average is that some places obviously we're very widespread different levels of kind of rural areas in England and very densely populated areas of deprivation, but we don't think that that data influences that prevalence that we're looking at. So it's kind of we've got this positive prediction number and if they fall outside the two standard deviations from that, that's who we looked at first.
Speaker 2:Okay, and are these all ABR screenings or do you also use otoacoustic emission screenings?
Speaker 3:So we do. Yeah, so for well, babies they get an otoacoustic emission screen and if they refer from that they have the automated ABR, and if they refer from that they go on to the diagnostic ABR. But if it's a NICU baby, they have both emissions and the automated ABR and have to get a pass on all of that before they're discharged.
Speaker 2:Okay, and let me ask you about personnel.
Speaker 2:I remember when I used to go to England quite a bit, the AUD was becoming prominent, maybe 15 or 20 years ago, there were a lot of clinically trained audiologists.
Speaker 2:There were a lot of people with AUDs and most of them had earned their AUD in the US distance education, things like that and then I remember I want to say 10 or 12 years ago that went out of fashion and I think it was the NHS who said that they didn't really want to support that financially and I may have that wrong, but I thought there was a big movement 10 or 12 years ago saying something like well, we have enough clinical audiologists. What we're going to do is start training technically oriented people, technicians, and these are people who might take a 12 or an 18 month class and they would be trained in cardiology technology, optometry technology, dentist technology, audiology technology. And I'm wondering does that have any bearing here? Are these people who are perhaps performing the test incorrectly or reading them incorrectly, are they audiologists or are they technicians? And is it more the personnel, the education, or is it more the products that are being used?
Speaker 3:It's not products. Education in England is quite complex these days. We've undergone quite a number of changes over time so we have multiple kind of education routes now. But for the NHS, about the time you mentioned, we moved over to something called modernising scientific careers. We had got a BSc a four-year BSc, so bachelor's degree for audiology. That included quite a large amount of paediatrics. When we moved to modernizing scientific careers, that became a practitioner training program so it dropped to three years, a shorter clinical placement and it mainly focused on adult diagnostics and adult rehab.
Speaker 2:Sure. And most of that hearing aids and mild to moderate sensory neural loss.
Speaker 3:Yeah, so the pediatric part came out. But alongside that the next kind of bridge for your clinical career would be the scientist training program. So that's your clinical scientist registration. It teaches you all about vestibular, about pediatrics. It's a three-year course where you're in clinic, you're sponsored by a hospital and a master's level. But as you go further up the chain the numbers doing it are smaller. Whereas the bachelor's degree is not funded, the master's degree option is we now have a doctorate level as part of that pathway as well, the highest specialist scientist training, which is a new ish it's been going for about six years now which brings out consultant doctorate level clinical scientists. But again, the number doing that is very much smaller. So the vast majority of the workforce don't get pediatric training and learn it in-house if they get a pediatric post.
Speaker 2:So the training that the people who are running the screenings have is primarily on the job training and whatever background they walk in with.
Speaker 3:Yeah, we do. We have very limited options for training in ABR and electrophysiology. We've just started, or it's about to start next month, a whole new course all about ABR at master's level for just a module with full clinical competencies, which is going to be so helpful. But that's the first time it's happened all right.
Speaker 2:So so the training has changed is is that a direct result of the report you offered to the baa?
Speaker 3:it. I think it has something to do with it. I think the how pediatric audiology is run across england. There's no one model. Some have medics, some don't have medics. Some have clinical scientists, some don't. There's no one model. Some have medics, some don't have medics. Some have clinical scientists, some don't. There's no one agreed way of how your paediatric department should look. In some places it's very small because they have a very small department and they don't have good. They don't even have salary foods in some places out in the community and the investment in some of these services within their trust has just been quite poor and it's really been quite overlooked in the kind of bigger system of hospitals.
Speaker 2:Does this represent perhaps a larger problem across the NHS that you know I suspect there's about 80 or 85 million people in the UK.
Speaker 2:You know, I suspect there's about 80 or 85 million people in the UK and then the NHS is responsible for the health of all of those, except some people who opt out because they can, and it seems that training and education and expertise is very expensive.
Speaker 2:And I understand if the NHS says well, you know, we have to go to different models that are more expedient. But then there's a trade-off that happens right when you have people with lesser knowledge, lesser training, you're going to have more problems along these lines. So is this more of a one-off? It's just pediatric identification through ABR and technicians, or is there a larger problem at the NHS where they're dealing with 80 or 90 million people who the NHS is responsible to take care of and now, because of financial, economic trends and problems, many of the practitioners I would suspect have less training, less education, fewer degrees than the professionals who staffed the NHS 10 or 20 years ago? So my question is is it more of an NHS top-down problem or is this just a one-off and it's just a problem in the pediatric audiology sector.
Speaker 3:I think it's wider than that. The NHS is struggling. The demands on it from the population are growing. People are living longer. Babies have been born earlier and kept alive. People are sicker. We've got problems with waits in our emergency centres. We've got I don't know if it's made it over to America we've got our junior doctors and our consultants striking due to pain conditions. So it's a really, really challenging environment in the nhs as a whole. Following covid as well, when a lot of outpatient departments like audiology closed down and audiologists got redeployed into other areas to help out, we've just not quite recovered from that as well.
Speaker 3:So it's a really stretched time financially yeah.
Speaker 2:I'm getting that. Do you know if this problem extends into vestibular analysis, diagnostics and treatments by audiologists, as well as tinnitus as well as adult audiology, or is it really just at this moment obvious in the pediatric section?
Speaker 3:I think possibly we've just not looked anywhere else because this was an emergency. I think the possibly quality is variable. It's very dependent on who you see and their knowledge and the setup they have. We don't really have quality standards that everyone has subscribed to. That's changing, that's evolving quite rapidly now across the UK. But not all departments are accredited. We only have one option, something called the UCAS. The United Kingdom Accreditation Service can accredit audiology departments, but the funding and the support to get departments through that isn't there and it's a lot. We're accredited. It's a lot of work to maintain that. So we don't have mandatory quality assurance. We don't even have mandatory registration for all at the moment either registration for all at the moment either.
Speaker 2:So it seems that even the practitioners who are getting on-job training may not be registered anywhere. They're just day-to-day employees.
Speaker 3:Yeah, I mean most we've from our regions. Why live and work in the Midlands? We completed our review of paediatric audiology and for the most part people are registered. It's just not mandated so it's entirely possible that someone lets it drop or doesn't do it. For the most part, people do.
Speaker 3:OK they definitely do in the private sector because, again, it's a slightly different regulation there. But I think it's, on the whole, measuring your quality and assuring yourself of the quality of your service is not something that was ever really routinely in training and people are pushed to see their appointments. They don't get given the time to do the auditing and stuff because it just hasn't been valued until now.
Speaker 2:Yeah, and now it should be underscored that these systems existed many years ago. They were perhaps dismantled a bit due to finances and other real concerns, but there's always a trade-off right when we do screenings versus comprehensive audiometric evaluations. When we try to spend the least amount of time we can to save money, we get sometimes in a situation like this. Now, those children who are missed, let's suppose and I know you don't have a final number, but it seems to me, you know, if this was the US where this happened, that there'd be an awful lot of lawsuits that would be initiated by the families saying you know, we trusted you to screen and diagnose and treat our children and that didn't happen. And particularly when you have a child who's now three, four, five, six years out, they have very substantial speech and language and psychological, emotional, cognitive delays. And I wonder is that a factor in the UK? Do people immediately go to the barristers and say somebody's got to help me with my kid?
Speaker 3:I don't think they do it immediately, but it's most definitely trending and it's happening in some of the areas where the investigation is a bit more advanced. You do have solicitors proactively going out and saying, has your child been harmed due to a missed hearing loss? And they're recruiting. So I think it's far more of a thing over here than it ever used to be.
Speaker 2:Yeah, and so ultimately that costs an awful lot more than just doing a comprehensive audiometric evaluation.
Speaker 2:But when you're talking about damage to children and damage to human beings because of missed diagnostic opportunities, because systems weren't in place, because the staff, the personnel who were in place are not necessarily trained or licensed, that's a very real concern.
Speaker 2:So in the US we have that as well, when people trust and sign up and see a professional, licensed healthcare professional who then misses a diagnosis and the child receives delayed diagnostics and delayed treatment. That's a major issue because in children we have a window of opportunity that we need to diagnose and treat very, very rapidly with regards to hearing loss and listening disorders, where that child is very likely to have problems throughout their entire life with regards to hearing loss and listening disorders, or that child is very likely to have problems throughout their entire life with regard to speech and language development, psychology, emotional well-being, cognitive issues, other developmental milestones that would be perhaps delayed because they didn't have the language or the speech, the vocabulary, the understandings that children of the same age are expected to have. So what you're seeing now is the attorneys are getting involved to get relief for the families, and that's got to be incredibly expensive.
Speaker 3:Yeah, I mean we've had articles in our main national newspapers about this. It's been on daytime television, so it's in the public domain now that this issue is happening and I think people over here now are far more aware of the litigation aspect and it helps focus the minds of the managers within those hospital trusts that actually audiology does matter. It can have a significant impact. We're not going to kill anybody, but we can do harm if things aren't overseen properly and I think that's been a bit of a wake-up call for some non-audiologists managing these services.
Speaker 2:Yeah, it's quite amazing. All right so, claire, I don't want to end on a total down note, but it does seem like there are opportunities for improvement and enhancement, and I'd like you to perhaps review some of those with us, because I know that in the actual report, you had, I think, 55 recommendations of things that needed to be addressed. Can you tell us maybe the top five or the top 10 things that you anticipate would make a big difference, and where those are with regard to implementation?
Speaker 3:So across both Scotland and England there's been a massive push to train people on ABRs, to support those staff to regain their skills. To be really clear on the criteria of what they're looking for, Both in Scotland and in England now the NHS bodies are looking at workforce, how we look at our education as a whole. People are far more aware of quality and audit, so there's lots of learning and support about how do you assure yourself of your quality, how do you do it? What does a good document look like and guidance look like? How do you do a good audit? Our education pathways are being looked at to see how we can do it. There's training days being put on. There's a lot of focus and a lot of very top level focus about how we can improve things sustainably, really, rather than just a quick let's throw on a training day to help everyone out.
Speaker 3:Now, how do we make sure this doesn't happen again, and that is over here a very long process to get the funding and the people aligned, but it definitely is happening across the UK now. Baa have put together this amazing tool of an entry into quality assurance for a department, so you can literally go on and self-check your department of a checklist and every time you say no, we don't have that, we don't have an equipment register, we don't have an audit plan. It opens up a wealth of support templates, testimonials from people, connections. So that community of practice approach is what's really growing across the UK to support audiologists, to upskill, to know what they're doing, so they're accountable and can give that assurance. So a huge amount of work has happened over 2023 coming up to now, and it's just starting to bear fruit of being able to see where we're going with this, of how those improvements are going to be made.
Speaker 2:You know, it seems to me that this is very important, that this happened, because obviously, bringing shedding light on the situation and coming up with the 55 recommendations and engaging in fixing these problems Very, very important. I wonder if you've heard from other countries, in particular US, Canada, New Zealand, Australia, the EU. Have you heard from other Western nations problems along these lines?
Speaker 3:We had Barbara Timmer at conference this year, so where I gave the talk and she came up and said that they're having some similar issues in Australia, because I mean, there's lots of lessons to be learned for everyone who's a practitioner trying to make sure, and I think that was clear. I've interviewed a lot of staff from these centres. Not one of them intended to do wrong or didn't bother with their training. It's a system wide thing and a lot of audiologists are really struggling with what's going on at the moment and possibly their part in it. So we're also putting in a big wellbeing support for the workforce as well, because we don't want to lose workforce when we're short already because they're finding it too challenging.
Speaker 2:So clearly. None of this was intentional. There's not a particular person to blame. This wasn't done with malice, but there are some system-wide problems that need to be solved.
Speaker 3:Yeah, I think that's what it really did show. It is much bigger than an individual anywhere.
Speaker 2:So, claire, before I let you go, I want to salute your bravery and your tenacity because you know a lot of people would not have had the nerve to do what you did, to really acquire, with your teams, this information and to bring a report of such bad news to the British Academy of Audiology and, you know truly, to the NHS. Claire, I want to thank you for your time and for your tenacity. A lot of people would not have been able to do the reporting you did, to have investigated this so thoroughly and to really dig deep into the multiple layers of problems. What's the status quo?
Speaker 3:I think we're still in the discovery phase for a lot of it. I do have to point out there is a huge, huge number of people and experts that have been part of the review. I merely stood up and told people about it, but a huge amount of work's going on. It's going to take years, I think, to properly recover from this, to get everyone where they should be. The well-being of audiologists has been really rocked, so the support needed for people in practice still is ongoing, but it's definitely on the up now. Solutions are happening, the right people are meeting about it, so I feel more optimistic than possibly did in November about it all.
Speaker 2:Well, listen, this is an amazing story and I'm again so proud of you for pushing this forward and trying to get a good evaluation as to what the situation is and what the resolution is. Claire, I want to thank you for your time. This has been brilliant and truly insightful. I think it's so important that you're involved with this and leading the way, and, of course, there's an entire team. You're involved with this and leading the way, and, of course, there's an entire team of experts working with you to make sure that this is resolved correctly.