What’s happening with NHS Lothian?

You may have seen NHS Lothian in the news this week in relation to failings in its paediatric audiology service. At least 887 children were affected, of whom at least 100 were deaf. The real number for both could be thousands more.

It’s understandably caused some widespread concern and uncertainty, so this blog aims to explain what some of those concerns are, who might be affected and where families of deaf children can go for help.

What exactly happened?

The British Academy of Audiology (BAA) carried out an audit of NHS Lothian’s paediatric audiology caseload from 2009-2018. This included 22,900 children, of which the BAA sampled 1,007 records. The results were far from good.

The full findings were revealed in a report published on Thursday 9 December 2021. Of those the BAA examined, just 120 raised no concerns at all. For 155 of them, the concerns were “significant.” Specifically, it found:

• 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.

What effect has this had on those children?

This will obviously differ from child to child, based on their needs and exact experience. Children are referred to audiology at NHS Lothian in order to identify if there’s a hearing loss. As NHS Lothian have made repeated mistakes, we don’t know how many actually were deaf. It’s at least 100.

In the sample, 88% of children referred were let down by the service.

For those that were deaf, some were identified later than they should have been. Others have been given the wrong hearing technology, or the fitting of it has been delayed, or they have been deprived of the technology altogether.

Overall, NHS Lothian’s failures are likely to have impacted these deaf children’s access to sound and communication, whether through spoken or sign language. For some of them, there will be life-changing consequences.

What is the National Deaf Children’s Society going to do about this?

We were horrified by the findings of this report and we have said so in the media in no uncertain terms. We have also contacted the Cabinet Secretary for Health and Social Care, Humza Yousaf MSP, seeking immediate reassurances that this is never allowed to happen again, in Lothian and across Scotland.

In addition, we’re lobbying the Scottish Government to introduce a new, national clinical leadership for the newborn hearing screening programme and paediatric audiology. We also want to see robust data collection for every service in the country to identify these kinds of failures, as well as a mandatory quality assurance program, meaning services must conform to nationally recognised standards, with consequences if they don’t.

Locally, NHS Lothian have given us their commitment that they will follow the recommendations made in the report and review their past caseload to avoid repeating the same mistakes. We will monitor their progress on this and seek a clear, detailed action plan on how they will catch up and deliver for deaf children and their families.

What happens now?

NHS Lothian has accepted full responsibility and will apologise to and compensate those families affected. It has also set up a helpline and has agreed to work together with the National Deaf Children’s Society to support those affected.

NHS Lothian helpline number: 0131 465 5457. It is open Mondays to Fridays 9.00am to 5.00pm, except public holidays.

NHS Lothian will recall families identified by the audit and they should be writing to them.

My child was on NHS Lothian’s caseload during this time – what should I do?

We would advise anyone in this position to contact our Helpline.

NHS Lothian should be writing to the families with the most urgent concerns. If you haven’t heard from NHS Lothian but are still concerned, please contact us. Our Helpline can refer you to an Advice and Guidance Officer in Scotland, who will contact you to discuss your situation and advise on your options. They can signpost to other organisations and advise on what support is available to you locally.

I have a deaf child in Scotland, but outside of Lothian. Could this have happened to my child?

Without knowing the specifics of your child’s experience, we aren’t able to say if anyone else is affected. If you’re concerned about the service your child has received, have any questions or are seeking reassurance, we’d advise you to contact our Helpline for support.

Can I take legal action?

Families may be able to pursue clinical negligence claims. They should seek independent specialist legal advice, whichever medical negligence specialist firm that comes from, or at the very least make a fully informed choice about seeking such advice. Unfortunately, we’re unable to advise on any potential clinical negligence claims, but anyone considering this course of action can contact our Helpline for some guidance.

How do I contact you for support?

Our Helpline is available in a range of different ways between 9am and 5pm, Monday to Friday. It is free of charge.