Three children from the Lothians – including two siblings – conquered the Edinburgh Marathon Festival’s 2k run in support of the National Deaf Children’s Society.
West Calder siblings Jamie Farquhar, 10, and Cerys Firth, 11, and Wallyford youngster Mila Coult, 9, took on the picturesque course, which followed Queen’s Drive in the shadow of Salisbury Crags, on Saturday 25 May.
Jamie and Cerys smashed their original fundraising target, with £750 raised, while Mila did likewise and has raised over £900 so far for the charity, which supports the UK’s 50,000 deaf children and their families.
All three youngsters chose to run for the National Deaf Children’s Society because they have been affected by deafness in their families. Jamie was born deaf and now wears hearing aids, while Mila became deaf at the age of three and now has cochlear implants. Both families have been receiving ongoing support from the charity.
Jamie and Cerys live in West Calder with their parents Carrie-Ann and Callum and other siblings Emma and Erin, while Mila lives in Wallyford, near Musselburgh, with her mum Regan and stepdad Shaun.
Jamie said:“I chose the National Deaf Children’s Society because I love the activities I do with them and I want to keep that going for other deaf children.
“It felt amazing to finish, it felt great getting the medal. The thought of the medal kept me going. I tripped over a bar near the end, it was funny! I’m just really proud of how much we raised.”
Cerys added: “I ran for the National Deaf Children’s Society because my little brother is deaf. It felt amazing to get to the finish line. We both tripped up at the end! I knew I had to finish because if I didn’t, I’d have let lots of people down. I was doing it for Jamie.”
Commenting on her run, Mila said: “I really liked raising money, the run was really active and encouraged me to keep running and push myself. It was really tiring but I feel proud that I did it.”
Regan, Mila’s mum, added: “I’m so beyond proud of Mila and what she’s accomplished, both in fundraising for a charity so close to our hearts, and by pushing herself to run and have fun.”
Tamsin Bayliss,who supports fundraisers for the National Deaf Children’s Society, said:“I want to say a huge thank you to Jamie, Cerys and Mila for taking on this challenge for us. Conquering the Edinburgh Marathon Festival’s 2k run was a great achievement and we’re very proud of you.
“The National Deaf Children’s Society is dedicated to supporting the UK’s 50,000 deaf children and their families. The efforts of selfless fundraisers like Jamie, Cerys and Mila will help us to keep on doing our vital work, now and into the future.”
The National Deaf Children’s Society is highlighting the support available to parents of deaf children in Wales, as part of Deaf Awareness Week (6-12 May).
With more than 90% of deaf children born to hearing parents with no experience of deafness, many families can be unsure where to go for support or what being deaf means for their child’s future. Parents who are deaf may also not always know where to go to for support when they are told their child is deaf.
The National Deaf Children’s Society asked the parents of deaf children from across the UK to share the emotions they experienced after being told their child is deaf. The charity also asked deaf young people to share their deaf awareness tips, in the hope of helping other families new to deafness.
Gladiators star Fury, real name Jodie Ounsley, shared her top tips to help deaf children and young people smash through the barriers which some regularly face:
The hit show’s first deaf Gladiator said: “For me, the most useful tip has to be honesty. Just by being very open and honest and being vulnerable in those moments where you may be misunderstanding or feeling isolated at times, is huge.
“Not only does it help your confidence, but it raises awareness to the people around you so that they are able to understand and support where they can.”
“Be brave and just go for it, whether it’s a new sport or a challenge that may feel a bit scary, you never know what is around the corner and your deafness certainly shouldn’t to be the reason to hold you back.”
Lorraine, from Motherwell, whose 18-year-old daughter Kara is profoundly deaf, urges parents of deaf children to join a local support group and the National Deaf Children’s Society.
She said: “We didn’t know about support groups or the National Deaf Children’s Society so I wish we’d known more about the support out there and that there’s people you can talk to. This is a big thing when your child is first identified as deaf – especially being able to speak to the parents of other deaf children.”
Lorraine also recommends all parents of deaf children learn British Sign Language. She said: “We were advised by professionals not to learn sign language as it would stop Kara from talking. But in hindsight I wish we’d learned BSL as it would have boosted Kara’s deaf identity.”
When asked what the most helpful piece of advice was after finding out Kara is deaf, Lorraine replied: “To join the National Deaf Children’s Society for more information and the community.
“We went on a weekend for newly identified deaf children and it was fantastic because of all the information we found out and the support that NDCS provided us with. Kara was a young deaf campaigner for the NDCS and she’s now making deaf awareness videos for the BBC.”
Lorraine’s top tip during Deaf Awareness Week is to make sure a deaf person can see you when you’re talking to them. She said: “Make sure you keep your hands away from your mouth and don’t shout through walls. It’s vital deaf people can read your lips, to see what’s being said.”
Victoria, a parent from Aberdeen concedes she knew “nothing” about deafness when she was first told that her son Lewis is deaf.
She said: “That is the scariest part and I panicked. I felt ignorant about deafness, and I wish I had known more.
“But don’t panic as there’s so much support out there and a whole community who will help you with any questions, situations and they provide fantastic help and guidance.
“Speak to as many parents about their experiences and engage with the National Deaf Children’s Society.”
Victoria admitted she cannot remember anything useful from the first four weeks after she was told Lewis is deaf, as she was still coming to terms with what this would mean for her son.
“Then I went to Aberdeen School for Deaf Coffee morning, I cried as they were so kind and lovely. there were people signing and this is when I realised this would be our new journey.
“There were older children who showed that their deafness wasn’t holding them back, it was at this point I knew it would all be ok.”
Lewis is now aged five, attends a mainstream school and he has worn bilateral cochlear implants since he was 15 months old.
Mark Ballard, Head of Policy and Influencing for Scotland with the National Deaf Children’s Society, said: “Many parents tell us they knew very little, or nothing at all, about deafness before they had a deaf child. So, it’s hardly surprising that these parents find themselves feeling confused, unprepared and worried about what the future might hold for their children.
“The National Deaf Children’s Society is here to help you give your deaf child the very best start in life. With the right support, there’s absolutely no reason why they shouldn’t grow up confident, happy and fulfilled.”
This May we celebrate Deaf Awareness Week (6-12 May).
Did you know that nine out of ten deaf children are born to hearing parents? A great many parents tell us they knew very little or even nothing at all about deafness before they had a deaf child.
So it’s hardly surprising that many such parents find themselves feeling confused, unprepared and worried about what the future might hold.
The National Deaf Children’s Society is here to help you give your deaf child the very best start in life. With the right support, there’s absolutely no reason why they shouldn’t grow up confident, happy and fulfilled.
We’re here for you. We can provide support for all of you who are new to the journey, through our extensive resources – from our Helpline, 0808 800 8880, and our wealth of expertise, right through to the friendship and reassurance of our fantastic community.
The Scottish Government has responded to the report and recommendations of the Independent Review of audiology in Scotland, established following the NHS Lothian audiology scandal.
In response to a parliamentary question from Evelyn Tweed, MSP, the Scottish Government has committed to accept all of the recommendations of the review in principle, and to now establish a National Implementation Group to examine how best to implement the recommendations.
The Scottish Government response also stated that “this Implementation Group will be formed with partners from the third sector, as well as the health service, which will allow us to ensure the voices of those with lived experience are front and centre as changes are made.”
The National Deaf Children’s Society has welcomed the Scottish Government’s commitment to accept all of the recommendations, and looks forward to working with Government to ensure the recommendations are swiftly and effectively delivered.
Mark Ballard, Head of Policy and Influencing for Scotland at the National Deaf Children’s Society, said: “Deaf children and their families will welcome the publication of the Scottish Government response to the Independent Review of Audiology. The review identified multiple, systemic problems within audiology services in NHS Scotland.
“We have called for the Scottish Government to grasp this opportunity for transformative change to make sure audiology is safe and fit for purpose. Parents will be relieved that the Scottish Government has committed to accept all of the review’s recommendations in principle – although we all recognise there is much work to be done to deliver on them.
“The independent review raised significant concerns about how well the results of the specialist tests carried out on children where hearing loss is suspected were being assessed. Issues with the assessment of the results of these tests, known as Auditory Brainstem Response (ABR) tests, were identified in every Scottish health board area. So, we’re delighted the Scottish Government has committed to act on the various recommendations made in the review to improve ABR testing.
“However, these concerns were flagged to the Scottish government eight months ago, so it is absolutely vital that we act at pace to deliver these recommendations.
“One of the key findings in the report was that there has been a long term lack of investment and prioritisation of audiology services in Scotland. In order to achieve the shared ambition of making sure audiology services are safe and fit for purpose, appropriate funding will need to be found as part of implementation.
“It is therefore great that the Scottish Government has committed to ensuring that the voices of those with lived experience are front and centre of the new National Implementation Group.
“While we welcome this commitment to implement the recommendations of the review, the we look to the Scottish Government to provide more detail and expand on their current commitments, so that deaf children and their families can be sure that will be no repeat of the NHS Lothian scandal.
“We’ll continue to campaign tirelessly until we’re satisfied plans are in place to ensure hearing services across the country are fully staffed and operating at a consistent quality, with monitoring and data collection in place – all of which are crucial if we’re to fix a broken system.
“We know deaf children can achieve anything that hearing children can when they get the right support, but for this to happen their deafness must be identified at the earliest opportunity. This is why it is vitally important that children always receive high-quality and effective testing and long-term support.”
Edinburgh boy Alasdair MacDonald, 10, achieved his ambition of climbing 100 Munros before his 11th birthday for the National Deaf Children’s Society.
He scaled the final two, the twin peaks of Mayar and Driesh in the Cairngorms, on Saturday 23 September, accompanied by around 20 friends and family, meaning he’s climbed 50 Munros this year alone.
He set himself the challenge out of love for his little sister Heather, 8, who was born deaf, and to raise funds for the charity, who supported Heather and the family.
Ally’s family marked the occasion with a celebration on the summit of Driesh, followed by a party at their home to say thank you for all the support they’d received.
He’s smashed his target of £500, with £1,530 raised so far for the National Deaf Children’s Society, which supports the UK’s 50,000 deaf children.
Ally lives with Heather and their parents Sara and Ranald in Edinburgh.
Ally said:“It was an amazing feeling to complete the challenge and to get to the top of my 100th Munro. We had a lovely day on Saturday and I was very happy that so many of my friends could join me on the final walk.
“I never thought we’d raise as much money as we have for the National Deaf Children’s Society and I’d like to say a huge thank you to everyone who came and supported me.”
Sara, Ally’s mum, added:“We were so proud when Alasdair completed his 100th Munro on Saturday at Glen Clova with 20 of his friends and family. We were really lucky and the sun was shining as we set off.
“All the kids and adults were fantastic supporters throughout the day and it was a really emotional end to the challenge.
“When we got back home we treated everyone to pizza and drinks, to say thanks for the overwhelming support they gave Ally.”
Melissa Jones,who supports fundraisers for the National Deaf Children’s Society, said:“I want to say a huge thank you to Ally for taking on this brilliant challenge for us. 100 Munros, with the final 50 this year alone, and all before your 11th birthday, is a truly towering achievement. We’re so proud of you.
“The National Deaf Children’s Society is dedicated to supporting the UK’s 50,000 deaf children and their families. The efforts of fantastic fundraisers like Ally will help us to keep on doing our vital work, now and into the future.”
There are over 3,300 deaf children in Scotland, with around 200 in Edinburgh.
Those wishing to make a donation can still do so by visiting:
Recommendations to improve audiology services have been made to the Scottish Government, Health Boards and third sector partners.
An Independent Review of Audiology Services in Scotland sets out 55 recommendations for improving governance and structure, education and leadership.
Professor Jacqueline Taylor MBE conducted the review for Ministers following failures identified in audiology treatment for children.
Public Health Minister Jenni Minto said: “I would like to thank Professor Taylor and her team this thorough report that sets out clear options for improving audiology care across the country.
“We must recognise that many families were badly let down by these services in the past and this report’s recommendations will help ensure that is not allowed to happen again.
“The report is clear in its call for better leadership, structure and governance at all levels. Some of the recommendations are in areas where we are already taking action, such as increased funding for staff training.
“What is abundantly clear in their findings is that good audiology care can be life changing, and patients recognise and value the expertise and compassion of staff. We will fully consider the findings and set out the next steps to Parliament in the coming months.”
Professor Taylor said: “The wide-ranging recommendations in this report provide the foundation for improvements which will ensure high-quality, joined-up, patient-centred services.
“Audiology staff are working incredibly hard, often in challenging circumstances and during the course of the Review process we have seen many examples of good practice.
“We have also identified a range of issues which need to be resolved. I am extremely grateful to the patients, parents, audiology staff and stakeholders who helped to shape this Review. We have listened carefully, and I believe that by working together, we have a real opportunity to develop excellent services across Scotland.
“The Review Report is not an end in itself: it is the first step in a process of change which will require time, resources and national leadership to deliver. We hope that the Scottish Government will respond positively to the recommendations and will ensure that the words in this report, are turned into actions.”
Following the publication of the final report and recommendations of the Independent Review of Audiology Services in Scotland, Mark Ballard, Head of Policy and Influencing for Scotland at the National Deaf Children’s Society, said: “This report paints a deeply concerning picture of the state of audiology in Scotland.
“Parents who rely on audiology services for their children will be shocked to learn there has been 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.”
The most urgent recommendations in the review are around the quality of auditory brainstem response (ABR) testing, which is carried out to identify deafness in very young children.
Mr Ballard said: “It is alarming that issues were identified in the quality of ABR testing at every single health board across Scotland.
“We know deaf children can achieve anything that hearing children can when they get the right support, but for this to happen their deafness must be identified at the earliest opportunity. This is why it is vitally important that children always receive high quality and effective testing and long-term support.
“Parents need reassurance that issues with the quality of services will be swiftly addressed. This report was commissioned after significant failures were uncovered at NHS Lothian involving more than 150 children over nine years. Some of those children experienced life-changing consequences, because their deafness was identified too late for them to get the surgery or communication support they needed. There must be no more similar failures.”
The report also found there is a lack of consistent data collection, meaning it is difficult to monitor quality and compare how health boards in Scotland are performing. This makes it impossible to know if other deaf children are being failed in the same way as those in Lothian.
Mr Ballard continued: “Parents told the review about the difference a good audiologist can make and it is clear from this report we need to make sure they always have the resources, training and leadership required to deliver effective support.
“It is now crystal clear to the Scottish Government and NHS health boards what they must do to make sure every child gets the testing and support they need,” Mr Ballard added.
Did your readers know that deaf children often fall behind in their development, because they’re not getting the right support in their early years? It’s an especially critical time for deaf children, because of the impact their deafness can have on language development, communication and social skills.
Without good communication skills learned early on, a deaf child could face lifelong challenges. For instance, when they start school they may come up against many barriers, like struggling to understand instructions in the classroom and conversations with their peers, all leading to feelings of isolation and a sense of ‘missing out’.
To make matters worse, Teachers of the Deaf, who provide specialist support and make such a difference to a deaf child’s life, are in decline in Scotland. Their numbers have fallen by 40% in a decade – twice that of other parts of the UK. It’s a scandal.
Here at the National Deaf Children’s Society, we’re determined to do something about it. That’s why we’ve just launched our new five-year plan, Every Moment Counts, which calls for more support, more quickly, for deaf children during those vital early years. We won’t rest until every deaf child receives the right support as early as possible.
For more information about Every Moment counts, visit:
The National Deaf Children’s Society supports the UK’s 50,000 deaf children and young people. For anyone needing advice, support or information about deafness, please call our free Helpline on 0808 800 8880 or visit our website, www.ndcs.org.uk
Debbie Talbot,
Chief Strategy Officer, the National Deaf Children’s Society
The National Deaf Children’s Society has backed calls in the Scottish Parliament for more support for deaf children affected by the NHS Lothian audiology scandal.
A motion proposed by Jeremy Balfour, Conservative MSP for Lothians, on the current lack of support, has received cross party backing and will be debated in Parliament tomorrow (Thursday 8th June).
The debate follows a roundtable which Mr Balfour organised with families whose children were affected by the scandal earlier in the year.
The motion highlights that the failure of NHS Lothian to identify children’s deafness early will mean some children permanently miss out on opportunities to develop language and communication.
An independent report published in 2021, found that NHS Lothian was identifying children’s deafness when they were on average 4.5 years old, while the average age of identification as deaf in England was three months. The report was commissioned after the National Deaf Children’s Society raised concerns about the quality of children’s audiology at NHS Lothian.
Mark Ballard, Head of Policy for Scotland for the National Deaf Children’s Society, welcomed the debate saying: “It’s vital that NHS Lothian and local authorities work together to ensure every child affected by the failings of NHS Lothian’s paediatric audiology service get the support that they need to thrive.
“We must not fail these children twice – first by failing to identify their deafness and then by failing to give them the support they need, especially as their needs may be more complex due to late identification.”
The National Deaf Children’s Society is calling for a specialist resource provision to be set up within a school in Lothian and the Borders, similar to those in Glasgow, Falkirk and Dundee.
The charity wants NHS Lothian and local authorities to work together on an individual plan for support for every deaf child involved.
The National Deaf Children’s Society also calls for the recruitment of additional specialist staff to address the more complex language and communications needs of children whose deafness was missed in the early years, who may struggle to catch up with their hearing classmates.
The National Deaf Children’s Society has launched a new five-year strategy, Every Moment Counts, which aims to ensure all deaf children across Scotland receive the support they need during their early years (0-5), or as soon as their deafness is identified.
The charity is shifting the focus of its campaigning to early years as it strongly believes that families need first class support during this crucial period, so they feel empowered to make informed decisions and champion their deaf child.
For all children the early years is a crucial time, but the National Deaf Children’s Society says this is even more so for deaf children, given the impact deafness can have on language development, communication, and social skills.
Missed opportunities to spot deafness and provide the support deaf children need can lead to lifelong impacts, according to the charity.
It says a deaf child without good language and communication development in the early years, be it spoken, sign, or a mixture of both, can experience ongoing challenges. They may struggle to listen and follow instructions in the classroom, or miss conversations with their peers, leading to feelings of isolation and a sense of ‘missing out’.
Kirsten Abioye’s son was not diagnosed as deaf until he was almost three due to failures at their local heath board’s paediatric audiology service.
Kirsten said: “Our experience of early years was really hard. The audiology department was unhelpful and dismissed me as an anxious mum. We experienced delays and a general lack of communication which left us in a difficult position. We knew something was going on with our son but did not know how to support him. His diagnosis brought overwhelming relief.”
Teachers of the Deaf can help bridge this gap, by providing specialist support to deaf children of all ages once their deafness is identified. They play a vital role in deaf children’s lives, particularly during the critical early years – helping to reduce their chances of them falling behind developmentally, socially and educationally.
But a report published by the Consortium for Research into Deaf Education (CRIDE), shows Teachers of the Deaf numbers across Scotland have fallen by 40% in a decade and almost half (45%) are due to retire in the next 10 years. The fall in numbers is twice that of other parts of the UK.
This means thousands of deaf children across Scotland are not getting the support they need in school. Deaf young people in Scotland are already twice as likely as their hearing classmates to leave school with no qualifications and half as likely to go on to university.
Against this backdrop it comes as no surprise that some parents of deaf children in Scotland are concerned that their deaf child does not have enough support from health and education services. Having access to information and advice is crucial in helping families make tricky decisions about how their child will communicate, which technology they’ll use and what type of school they’ll attend.
Kirsten describes her family’s Teacher of the Deaf as an “advocate, support system, teacher, encourager, source of information – all in one woman!”
She said: “Her support has been a lifeline, and she works closely with our son’s nursery who also provide excellent support.”
But even with a great Teacher of the Deaf and nursery, Kirsten’s family still struggled, as the specialist support their family urgently required was simply not available to them.
Kirsten continued: “It was a very isolating, stressful time because we just wanted to be able to support our child. I contacted the National Deaf Children’s Society and had a chat with a member of staff, who was really understanding. She listened and understood my panic that we had missed the opportunity for language learning and were really behind.
“She helped me fill in an application for a family learning course, funded and run by the charity, which kick started our British Sign Language (BSL) learning. She’s been with us through various different parts of life since, most recently our difficulty finding accessible swimming lessons.”
The National Deaf Children’s Society warns that unless action is taken urgently things will only get worse. It is calling on local authorities across Scotland to commit to returning qualified Teacher of the Deaf numbers to 2011 levels over the next decade.
At their annual congress in May, The Scottish Secondary Teachers Association (SSTA), Scotland’s second largest teaching union, unanimously agreed a motion backing the charity’s call on the Scottish Government to address the dramatic drop in the number of qualified Teachers of the Deaf, as “matter of urgency”.
The charity also calls on the Scottish Government to develop and deliver a Scotland-wide workforce strategy for Teachers of the Deaf, and to ensure they are properly paid for the extra responsibilities they take on, in recognition that their specialist expertise is valued.
Mark Ballard, Head of Policy and Influencing for Scotland with the National Deaf Children’s Society, said: “Deaf children are just as capable as their peers when they have right support in place, ideally from the very beginning. But many families in Scotland are struggling to access this support.
“It means that deaf children just aren’t being given the opportunity to thrive in those crucial formative years. Once they fall behind, it can be incredibly hard to catch up and this can have a lasting impact that affects them throughout their lives.
“Every moment counts, from the time a child’s deafness is identified, to their first day at school and beyond. We owe it to deaf children to give them the best start in life.”
For more information about Every Moment counts, visit:
The first week in May is Deaf Awareness Week, when we celebrate Deaf culture and raise awareness about what we can do to make society more deaf-friendly.
Did your readers know that a GCSE in British Sign Language (BSL) is being developed, so young people can learn it in school? Here at the National Deaf Children’s Society we’re working hard to make that happen as soon as possible – we expect students to be able to study it from 2025.
BSL is a fantastic language and great fun to learn, but there are many other ways you can become more deaf-aware too. Here are just a few really simple deaf awareness tips that anyone can do anywhere right now (there are more on our website):
1. Speak clearly and naturally, it makes lip-reading much easier
2. Don’t cover your mouth or turn away and make sure your face is fully visible, and avoid eating or chewing. All these things can make understanding very difficult
3. Be visual. Try pointing, using gesture, writing things down or typing on your phone – there are even apps now
4. Never give up and say “It doesn’t matter” – because it does!
The National Deaf Children’s Society supports the UK’s 50,000 deaf children and young people. For anyone needing advice, support or information about deafness, please call our free Helpline on 0808 800 8880 or visit our website, www.ndcs.org.uk
