Health

Families of deaf children were betrayed by NHS Lothian, says Susan Daniels



On Thursday, December 9, 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. The horror stories are as heart-breaking as they are shocking and the effects are difficult to comprehend, let alone calculate. Simply put, some deaf children will be left to deal with consequences that will last for the rest of their lives.

READ MORE: NHS Lothian ‘catalogue of errors’ will have lasting impact on patients

In ordinary circumstances, when a child is suspected to be deaf, they are referred to their local audiology service to confirm it. Around half of deaf children are born deaf, so this often happens when they fail the newborn hearing screening test shortly after they arrive into the world. The other half become deaf later in childhood and it may be noticed by a parent, teacher or GP. Perhaps they aren’t talking, pick up language slowly or don’t appear to be paying attention in class.

Whatever the reason, audiology is a crucial step at what can be a very difficult time. If deafness is confirmed, the audiology service can help parents decide on the best way forward and give the child the support they need. Given children pick up the key building blocks for language and communication during their early years, the earlier a child is identified as deaf, the earlier they can start receiving this support.

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.

Among those identified in the report are 12 children who were eligible for cochlear implants, vital technology that allows profoundly deaf children to hear sound for the first time. All of them were identified late. Some were identified so late that they could no longer receive cochlear implants, meaning potentially life-changing technology has been permanently kept from them.

There are other major problems. Some were given the wrong hearing aids, others had them delayed. There are deaf children who were never even offered hearing aids. Others were identified as deaf far later than they should have been.

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. There could be many more outside it too.

Finding out your child can be deaf is hard enough on its own. This was a real-life nightmare, where families placed their trust in a service that was meant to help them, only to be completely let down. Thousands more across Scotland will read this news and be living with the very real fear that the same thing could happen to them.

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 aren’t 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 is working with NHS Lothian to support families and will continue to do so.

Yet there is also a broader question – could there be more families out there, elsewhere in Scotland, completely unaware that their child has been misdiagnosed or deprived of vital hearing technology? The answer is emphatically yes.

This is why local action won’t be enough. Deafness isn’t a learning disability, so there’s no reason why they should achieve less than hearing children. Yet less than a third make it to university. One in ten leave school with no qualifications at all.

To have the same chance to succeed, they need early access to language and communication, whether that’s through speech, sign language or both. They need to be supported immediately and given any hearing technology that might benefit them. To do this, they first have to be identified as deaf, something NHS Lothian has been comprehensively failing to do.

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 will campaign hard for these changes and we have met with the Cabinet Secretary for Health and Social Care Humza Yousaf to explain why they’re so badly needed. We won’t stop until deaf children and their families can all expect the best level of care.

There will be many discussions, debates and disagreements about the best way to achieve this. There will also be promises, pledges and plans to make things better. We’ll be there every step of the way, bringing ideas from experts, deaf children and their families on how to move forward.

We know that there will be conflicting opinions. We’re prepared for that.

But there is at least one thing we can all agree on; this must never, ever be allowed to happen again.

Susan Daniels, chief executive of the National Deaf Children’s Society





Source link

Previous ArticleNext Article

Leave a Reply

Your email address will not be published. Required fields are marked *