What happened at NHS Lothian must never be repeated

Written by: Susan Daniels OBE, Chief Executive, National Deaf Children's Society

Published: 22/12/2021

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Susan Daniels, Chief Executive of the National Deaf Children’s Society responds to an audiology report published by NHS Lothian.

On Thursday 9th December an explosive report by the British Academy of Audiology was published by NHS Lothian. Its findings have rocked children’s audiology in Scotland to its core and the ramifications will likely be felt for years to come. For some of the families directly affected, they could last a lifetime.

The report itself uncovered serious, repeated failures by NHS Lothian’s children’s audiology department. At the very minimum, 887 children were affected, at least 100 of whom were deaf. As a direct result of these failures, we don’t even know the true extent of how many were affected, or even how many were deaf. We likely never will.

What we do know is that many children were woefully mismanaged or incorrectly discharged. Deaf children were identified late, wrongly deprived of hearing technology or not supported to learn sign language. Some deaf children will be left to deal with consequences that will last for the rest of their lives.

In NHS Lothian however, the audiology service has been badly failing. The average age of children being identified as deaf in Lothian is 1,653 days. For perspective, in England it’s 109.

Tragically, this is the tip of the iceberg. The report only looks at the period 2009-2018. It only examines a sample of 1,007 cases out of nearly 23,000 referred. There could have been thousands more mistakes during this period.

The results should shock everyone involved to their core and urgent action is needed. On a local level, this will involve NHS Lothian implementing the recommendations of the report. It will need to review its caseload to make sure these mistakes are not repeated, as well as announcing a clear plan on how to catch up and deliver for those in its care. The National Deaf Children’s Society (NDCS) is working with NHS Lothian to support families and will continue to do so.

The Scottish Government is now stepping in and this is vital because there’s serious work to do. It must urgently review audiology across the country and ratchet up accountability. Data must be shared between services, including that crucial average age of identification, with those falling short investigated. We must get national standards that services must conform to, with consequences for those who don’t. We need to see a national leader appointed to oversee audiology and it must be someone with clinical experience. Without one, this could be a widespread, national problem.

We have met with the Cabinet Secretary for Health and Social Care to explain why all of these changes are so badly needed, and he has responded very positively on the need to improve children paediatric audiology services across Scotland.

We will be campaigning to ensure deaf children and their families can all expect the best level of care and what happened at NHS Lothian is never repeated.

This blog is an edited version of an article that appeared in The Herald on Thursday 16th December 2021: https://www.heraldscotland.com/politics/19786236.deaf-children-betrayed-repeated-failings-nhs-lothian/ (this link will take you away from our website)

NDCS’s media statement and a previous blog on NHS Lothian, published on the Thursday 9th December, can be found here: https://www.ndcs.org.uk/about-us/news-and-media/latest-news/horrendous-children-s-audiology-failings-at-nhs-lothian/ (this link will take you away from our website)

For more information on NDCS, visit their website: https://www.ndcs.org.uk/blog/what-s-happening-with-nhs-lothian/ (this link will take you away from our website)

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