Four-year-old girl left with hearing loss for over a year after being left untreated

Exclusive: The family of a four-year-old girl shared their ordeal after being left in limbo on NHS waiting lists

Kara Dilliway was just three years old when she came down with a common ear infection in October 2022.

She recovered quickly, as was expected, but just days after the infection cleared her parents found she was struggling to hear and talk.

“We’d noticed she’d just started to say yes and no to things, that’s when we thought something is going on,” says her mother Sam Dilliway, a 41-year-old community care worker from Basildon, Essex. Doctors said she could have glue ear, a common condition in children – fluid build-up had started to cause problems with her hearing, and would need draining.

Kara Dilliway, 4, has been left with hearing loss for over a year after suffering from glue ear (Samantha Dilliway)

But what should have been a minor ailment has turned into a never-ending ordeal for the family. What was a simple case of glue ear could now leave her with hearing loss for up to two years as she awaits routine treatment.

It comes after data released in January found that over 10 million people have been left on NHS waiting lists for basic ear care services.

When Basildon Hospital referred Kara to private healthcare provider Omnes in December 2022, her mother was told the waiting list would be nine weeks.

Sam and Asa have been left feeling ‘helpless’ over delays in their daughter being treated (Samantha Dilliway)

After speaking to staff at the company the following January, Ms Dilliway says she was told the hospital had been mistaken and the list would be six months.

“I thought at the time that it was fine, because it was still shorter than the year-long wait at the NHS,” she told The Independent. “But when I rang them in June 2023, they told me they had lost the referral.”

After much panic, Basildon Hospital sent proof of their referral to Omnes and Kara was seen for her first appointment with a consultant a couple of days later.

“She was told she had problems with her tonsils and adenoids too,” her mother explained. “They said she would need grommets, and she could have the minor operation just before she started nursery in September.”

However, when Ms Dilliway rang Omnes in August, they again said they had no record of the referral. She reported the company to the Care Quality Commission (CQC) on 25 August 2023, and her husband Asa sent a complaint to their local MP, Stephen Metcalfe.

The CQC was unable to comment on individual cases in response to The Independent, but said, “Where we receive information of concern or evidence that people are at risk, we follow this up directly and we have a range of powers we can use if we find people are not receiving safe care.”

Kara was referred back to the NHS and seen for another appointment in October. Ms Dilliway was told that her daughter did in fact need her ear draining and a hearing test confirmed she was suffering from hearing loss.

However, the matter was further complicated because no hearing test was conducted at her June appointment with Omnes, which meant she would need yet another appointment in three months to confirm the effects of the glue ear on her hearing.

Kara is a sociable girl who has become withdrawn due to untreated hearing loss for glue ear (Samantha Dilliway)

“That is a standard practice in line with NICE guidelines, we have to do two hearing tests to confirm the hearing loss isn’t temporary,” says Dr Anthony Aymat, a consultant ENT and head and neck surgeon at Lewisham and Greenwich NHS Trust.

“However, due to long waiting lists, we’re seeing more children impacted by these common conditions. The NHS backlog is increasing despite the fact we are doing more and more outsourcing and insourcing. Waiting lists keep going up.”

Dr Aymat says that the long-term effects of such conditions being left untreated in children can be severe. While glue ear is unlikely to leave permanent damage, there is always a small risk of permanent hearing loss. However, the developmental effects are far more likely and potentially long-lasting.

Ms Dilliway says the effect on her daughter has been noticeable.

“It’s changed her personality. She’s a really sociable and outgoing kid, but she’s become withdrawn,” she says. “Before, she would openly initiate conversations with people, but now she can’t hear what they’re saying and people don’t persist when we ask them to speak up, so she just looks at them and won’t talk.”

Kara has since been seen by a consultant who has offered a steroid nasal spray. She has been put on the list for grommets and adenoids, with the wait expected to be about a year long, according to Ms Dilliway.

Dr Giles Thorpe, executive chief nursing officer at NHS Mid and South Essex Integrated Care Board, of which Basildon Hospital is a part, said: “Ensuring timely and effective care is critical and we would support a thorough investigation to understand the reported circumstances to help prevent such experiences in the future.

“We would urge the family to come forward and make contact with the Mid and South Essex NHS Hospital Trust Patient Advice and Liaison Service for support, so that any concerns can be looked into.”

A spokesperson for Omnes said: “Omnes Healthcare is committed to providing and supporting provision of timely, effective care for patients.

“As with other healthcare providers nationally, our services are experiencing significantly increased levels of demand. Unfortunately, referral processes have, on occasion, not been as streamlined as they should have been.

“Over recent months, we have been working collaboratively with our partners at Mid and South Essex NHS Foundation Trust to implement improvements, to further enhance levels of service and ensure delivery of timely, effective care for all our patients.”