Recent reports have highlighted the ongoing work NHS England is leading to understand issues in the quality of care some children and families have received from local hearing services. In this blog, Professor Sir Stephen Powis, NHS England’s National Medical Director, and Professor Dame Sue Hill, the NHS Chief Scientific Officer, set out what has happened and what is being done to support those local services to find and treat children with hearing impairment they might have missed, and to improve for the future.

Children with permanent hearing impairment can suffer with their speech and language development, causing distress for them and their parents and potential problems in later life. In many cases, we can treat this by intervening early – including through cochlear implants, hearing aids, and speech and language therapy – which can largely reverse the effects on speech and language.

For these treatments to be effective it is vital children receive a diagnosis and support early, which is the aim of the Newborn Hearing Screening Programme, which tests around 99% of the over half a million children born every year in England within their first three months. If the screening test suggests it is needed, an appointment should be made for the baby to attend an audiology clinic to see a specialist for more tests and – where needed – a treatment plan to be made.

Understanding concerns about services

In 2021, concerns emerged about paediatric audiology – or children’s hearing – services in one area of Scotland (Lothian), centring around whether newborn hearing test results were being properly followed up. A review confirmed these concerns, and a further independent review into other services in Scotland (announced in January 2022 and published in August 2023) concluded that the issues were more widespread.

Seeing these reports, we wanted to know whether there was a similar problem in English services, so we reviewed the hearing data over a 5 year period starting in 2018 for every baby born in England. This identified four local hospital trusts where far fewer babies were diagnosed with hearing impairment than we would expect following the newborn hearing screening. Looking into the reasons for this with these trusts gave us a reason to believe that it might be a wider issue.

To deal with this, in April 2023 we established the Paediatric Hearing Services Improvement (PHSI) programme, to find out what was happening across the country and support local areas to ensure they had the quality of services children need. This programme brought together service providers, NHS regions, clinical experts, professional bodies, and patient organisations, to discuss and agree the priorities for next steps.

In August 2023 we asked local NHS organisations to test their  services against a set of national recommendations for immediate action, alongside work – including producing resources and training sessions – to drive improvement based on what we already knew. This showed potential problems across the country, so we reviewed all 140 NHS paediatric services in England.

What we’re doing to ensure children who were missed get the support they need

The most important part of this work is to treat the children who need help, including those who may have been missed, and ensure our services are better in the future.

Over the past year, we have concentrated on two main areas of work. Firstly, finding the best way to review, recall and reassess affected babies and children, so we can give them the diagnosis and treatment they need. At the same time, working with local NHS bodies to improve services and the skills of our audiology staff, so that families can have more confidence in services in the future.

We have made a lot of progress. By August of this year, we finished our review of all 140 paediatric audiology services. We found 90 require more detailed focus and support from clinical experts to find out which babies and children need to be recalled for reassessment. This means the children most in need will be seen first.

Local NHS organisations, integrated care boards (ICBs), will lead this work, some of which has already begun, and NHS England is funding a group of specially trained senior scientists to oversee and input to the reviews.

Guidance has also been developed for local services to help them ensure reassessments are carried out as quickly and safely as possible, and families are kept informed.

We will host a series of webinars for ICB leads and regional colleagues in October to provide information, guidance and support on the next stage of this process. Workshops aimed at NHS audiologists about good scientific practice will continue throughout the rest of this year, building on the workshops held last year.

We want to ensure all these reassessments are completed by March 2025, so children are either discharged or provided with a treatment plan by September 2025.

Improving these services for the future

We remain committed to ensuring every child receives the highest standard of paediatric audiology care. While the review, recall and reassessment of babies and children is a critical immediate step, long-term reforms are essential to building a sustainable, high-quality paediatric audiology service across the country.

Through the Paediatric Hearing Services Improvement Programme, we have made substantial progress in addressing the gaps in care that place children at risk. Our programme focuses on:

1. Having enough staff with the right skills: One of the biggest challenges is the shortage of highly trained audiology professionals. In the short term, we have offered professionals training and education sessions to enhance professional standards and practices. Our longer-term ambition is to ensure these services have the right capacity and capability including further developing those staff already in post.
2. Setting the right standards: Our goal is to increase the number of services accredited by the UK Accreditation Service (UKAS). This will ensure services comply with agreed standards, and provide evidence of that to the Care Quality Commission (CQC), who are responsible for inspecting health services. We are also developing a national External Quality Assessment (EQA) scheme to ensure greater consistency across services in how the tests we use to tell whether babies can hear properly – such as Auditory Brainstem Response (ABR) traces – are interpreted.
3. Having the right number and size of services: Ensuring all children have access to high-quality and safe care regardless of where they live is our main priority. We know from other kinds of service that if a local service is too small, they struggle when staff leave or go off sick, and in some cases don’t see enough cases to be able to maintain skills. In some cases, we have solved this problem by combining two or more smaller services into one bigger one, meaning they have a bigger workforce and steadier stream of cases to look at – leading to greater stability and quality of care. So we are considering whether this option would be right for these services, but no decisions have been made yet nationally, and any major changes in services in a particular area would need to be decided locally after discussions with staff and patients.

As part of the NHS Standard Contract, as of April 2024 we have also recommended that every ICB agrees a Service Development and Improvement Programme with the trusts in their areas which provide children’s hearing services.

What to do if you’re worried your child is affected

We understand how worrying it must be for some parents to learn about the difficulties within these services, and we want to apologise on behalf of the NHS for them.

We won’t know which or how many children are affected in total until all the reviews have been completed, but we are committed to continuing to work with patient groups and other experts to support local services as they do this work, including providing clear information to families who might be, or are, affected.

As part of this, families of children identified as needing reassessment will be contacted by their local NHS to arrange this. Until then, anybody with concerns about their child’s hearing, whether they have previously been seen by the NHS audiology service or not, should consult their GP as they normally would.

We also understand the potential impact this may have on those waiting for audiology services as staff work through the reassessments they need to do, and we are working to ensure that any potential delays are minimised.

As we continue to drive improvements, our goal is to provide every child with the best possible start in life through safe, high-quality, and consistent audiological care.

For further information, please contact the National Paediatric Hearing Services Improvement Programme england.csohearingprogramme@nhs.net.