Deaf children across Scotland are still falling through the cracks and missing out on vital support despite two years passing since a damning report laid bare the inadequacies of NHS Scotland’s audiology services, the National Deaf Children’s Society is warning.
Today marks two years to the day that the Independent Review of Audiology Services in Scotland (IRASS), identified “multiple systemic problems” in NHS Scotland’s hearing services for both children and adults.
The most urgent recommendations were around the quality of auditory brainstem response (ABR) testing, carried out to identify deafness in very young children. Issues were identified in the quality of ABR testing at every single health board across Scotland. This is particularly concerning for young children, where delays or inaccuracies in testing can have lifelong impacts.
Other issues flagged by IRASS were audiology services facing barriers with recruiting new staff and addressing long waiting times.
Information obtained by the National Deaf Children’s Society reveals waiting times to be referred to audiology services in Scotland are unacceptably long. In some cases, children who should be seen within 42 days were waiting up to 600 days, posing a serious risk to early identification and intervention.
One mother shared with the National Deaf Children’s Society the “heartbreaking” impact that her son’s unidentified deafness, coupled with a lack of support and intervention, has had on their family.
Melanie Wright suspected her son Dawson was deaf when he was six, despite him having recently had a hearing test, which revealed no deafness. Dawson, from Dunbar, East Lothian, then had to wait three years before his deafness was finally identified, aged nine, despite Melanie’s repeated calls for a follow-up hearing test.
Dawson’s family were told he required grommets surgery but there would be a two-year wait unless they paid to go privately, which was not an option.
Melanie recalled how exhausting it was for Dawson to keep up with conversations at home and his frustration when he couldn’t join in.
At school, Dawson missed key parts of lessons because he could not hear what was said, which made learning harder and knocked his confidence.
Melanie said: “It’s heartbreaking watching your child work twice as hard just to keep up, knowing it didn’t have to be this way.”
Dawson’s deafness also impacted on friendships, and he often felt excluded.
When the Scottish Government committed to accept all the IRASS recommendations in December 2023, it was hoped there would be a root and branch reform of Scotland’s struggling audiology services.
But progress has been painfully slow, and despite the Scottish Government previously pledging to ensure that the voices of those with lived experience are “front and centre” these individuals have since been sidelined, as have deaf charities, despite their direct experience on the frontline.
Melanie continued: “This isn’t about special treatment, it’s about making sure children get the care and support they were promised, when they need it.
“This delay is costing children their education, their confidence, and their future — and no one is taking responsibility.
“I’m exhausted and totally broken by the experience.”
A coalition of charities, spearheaded by the National Deaf Children’s Society, has written an open letter to Scotland’s Minister for Public Health and Women’s Health Jenni Minto MSP, expressing concern at the lack of progress made by the Scottish Government since the publication of IRASS.
The charities warn the Minister that delayed hearing tests and inadequate care means that countless other babies and young children, like Dawson, will have unidentified deafness and lack support during this crucial period of their life. This can “severely impact a child’s ability to acquire language – whether spoken, signed or a combination of both”, the letter reads.
IRASS also found an absence of national leadership, strategic planning and workforce planning at audiology departments across Scotland and that there has been no quality assurance of services in recent years.
In their letter to the Minister the charities express their disappointment that action taken by the Scottish Government since the publication of IRASS is “yet to deliver the transformative change so urgently needed” while other recommendations “remain partially or completely incomplete”.
The charities urge the Minister to “equip audiology services with the resources, workforce, and leadership necessary to deliver the best possible outcomes for deaf children and adults”.
The Minister is warned by the charities that without “more ambitious and decisive action…we fear the current system will continue to fall short”.
The charities urge action in three key areas:
- Evidence of independent safety checks.
- Clear accountability for workforce planning.
- Transparent reporting on waiting times.
“When every moment counts, it is time for action – not words” the letter to the Minster concludes.
IRASS was commissioned after significant failures were uncovered at NHS Lothian involving more than 150 children over nine years. Some children suffered life-changing consequences, including developmental delays in their communication, learning and social skills.
This was because their deafness was identified too late for them to receive cochlear implant surgery, or the communications support they needed.
The open letter to Scotland’s Minister for Public Health and Women’s Health Jenni Minto MSP is signed by: The National Deaf Children’s Society, the Royal National Institute for Deaf People (RNID), the Health and Social Care Alliance Scotland (the ALLIANCE) and the British Acadamy of Audiology (BAA).
