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Chamber and committees

Meeting of the Parliament

Meeting date: Thursday, June 8, 2023


Late-diagnosed Deaf Children (Lothian)

The Deputy Presiding Officer (Annabelle Ewing)

The next item of business is a members’ business debate on motion S6M-08219, in the name of Jeremy Balfour, on ensuring that Lothian late-diagnosed deaf children get the support that they need. The debate will be concluded without any question being put.

I ask those members who wish to speak in the debate to press their request-to-speak buttons. I advise members that there is, for obvious reasons, a lot of interest from members wishing to participate in the debate. We will resume our business in the chamber at 2 pm; there is therefore no time in hand, and members must stick to their allocated speaking time.

Motion debated,

That the Parliament notes the belief that every child affected by the failings identified in the 2021 audit of NHS Lothian’s paediatric audiology service, carried out by the British Academy of Audiology (BAA), must get the support that they need to thrive and to overcome any additional barriers that they face due to the failings identified in the report; understands that the audit did not include children seen later than 2018, which, it considers, means that there were further years until any failings were addressed by an action plan, and that there may be many more children who were not diagnosed in a timely manner; recognises that the key stages for fluent first language development are birth to three years old; understands that the BAA report found that the average age of identification of deafness was 4.5 years for children in the NHS Lothian area, which, it understands, is far longer than comparable figures in the rest of the UK; considers that the failings identified in NHS Lothian’s paediatric audiology service will mean that many of the affected children were diagnosed after this critical period and are therefore likely to experience a significant adverse impact on their language and communications development, potentially leaving such children with more complex needs that may need to be addressed though co-ordinated support from health, education, social work and other agencies; understands that the families of affected children have come together to form Families Failed by Lothian Audiology Action Group (FLAAG); further understands that the parents involved in FLAAG have identified a number of areas where their children are not getting the support that they need; understands that the families involved in FLAAG report that they have experienced a lack of access to BSL tutors, speech and language therapy and appropriately qualified professionals to support their deaf children and help remediate any damage caused by the failures of the audiology service, and notes the calls on all public and voluntary sector bodies that are supporting the late-diagnosed deaf children in the Lothians and beyond to work together to ensure that they always get the support that they need.


Jeremy Balfour (Lothian) (Con)

I thank colleagues on all sides of the chamber for coming along to this members’ business debate and supporting the motion. In this Parliament, there is often a lot of focus on the areas in which we disagree. That may make for a better spectator sport and grab more headlines, but I am encouraged that, over the past months, a group of cross-party MSPs have managed to come together and find a solution to this issue. Our Parliament is at its best when we represent, and work together for the sake of, our constituents.

In 2021, an audit of NHS Lothian’s paediatric audiology service revealed that a great number of children had been missed in the diagnosing of serious hearing problems. That has led to many children under the age of 12 growing up without any support to deal with an auditory disability. I ask members to imagine how difficult that must be for parent and child alike.

Today’s debate is significant. We are talking about real families and real lives. The families that are represented by FLAAG—the families failed by Lothian audiology action group—have been through a real ordeal and have had to fight hard to be heard. I hope that this debate can be a catalyst for change and a prompt for answers.

It is good to see a number of the families in the public gallery, and I am sure that colleagues on all sides of the chamber will join me in welcoming them, because those families deserve answers, and there are so many questions that are still left unanswered.

Looking forward, we have to do better. We must ensure that the support that those families get is better, as it has so far been woefully lacking. Time and again, we hear from them about the massive gaps in the care that has been provided. That includes things such as British Sign Language teachers and speech and language therapists not being provided. That is care, not luxury—it is fundamental to the development of those children, whose care should already be given top priority.

The number of families in the Lothians who are affected by the issue is estimated at around 150, but the truth is that we do not know the true number, as the audit that was carried out by the British Academy of Audiology did not include children who were seen later than 2018. A number of additional cases in the Lothians could have been missed. It must be a priority to identify all those people in short order and ensure that they are provided with the top level of support that they require.

I thank the member for—[Inaudible.]

Could we have Mr Johnson’s microphone switched on, please?

Daniel Johnson

I pay tribute to the contributions that Jeremy Balfour has made. What he has just highlighted is central to the issue. First, there is a question about whether the fact that 800 or so cases took part in the audit makes it comprehensive enough. Secondly, I do not doubt the work that has been undertaken, but a number of triage steps have meant that only 155 cases of serious concern and six additional cases of hearing loss were identified. Does he agree that we need to re-examine both the initial sample and the triage steps to ensure that every affected individual is identified? Ultimately, it is very difficult to reconcile what the health board says with the experiences that we have heard from families.

Jeremy Balfour

Absolutely—and I will develop that area slightly in a moment, if that is okay with the member.

It is clear that we are not addressing the issue correctly. With the gaps that have been mentioned and the unknown number of unidentified cases, it has become increasingly clear that carrying on as we have done will not cut it. We are in desperate need of progress, and progress will not come without oversight.

Having had a number of meetings as a cross-party group of MSPs, we feel that NHS Lothian is not capable of organising and providing the much-needed support without some kind of accountability. Therefore, along with a number of my colleagues and the FLAAG families, we are calling on the Scottish Government to do two things.

The first is for the minister to meet the cross-party group of MSPs to discuss what can be done at the Government level to address the situation. I hope that the minister, in her summing-up speech, will agree to that meeting as urgently as possible.

Secondly, we are calling for the minister to commission a third-party audit to review the whole process over the past number of years and monitor whether families are getting the support that they need. The third party would have all the necessary powers to investigate and present their findings to the Parliament and Government after nine months. Based on those findings, we can move forward and ensure that adequate care is being provided. In her rounding-up speech, I hope that the minister will confirm her willingness to work with us in that way. We have to get that right, because the children and families who are represented by FLAAG cannot afford to continue to be failed.

Finally, I come to the issue of trust. Trust takes a long time to build up and can be lost in an instant. There has been a breakdown between the FLAAG families and the institutions that were supposed to look after them. We need to make every effort to assure them that we care, that we are sorry and that we are motivated to right all the wrongs that have occurred in this matter. That will not be achieved passively—it will take focused efforts to make amends and allow the families to regain their trust.

Once again, this is not an abstract or non-important issue. It is serious and life altering, and those families have experienced something that no family in Scotland should have to experience. We owe it to them to make sure that it is fixed, and I hope that today will be another step in that process.

We move to the open part of the debate. I remind members that contributions should last for up to four minutes.


Fiona Hyslop (Linlithgow) (SNP)

I thank Jeremy Balfour for securing the debate. I am also one of the cross-party group of Lothians MSPs who are pursuing the issue. I appreciate that the minister is new in her post, but I hope to reflect on why we have got to where we are and I want to impress on her that the issue is as much for the education authorities as it is for the health authorities.

When the issue first arose, its importance was taken very seriously indeed by the health service and, I recall, the then Cabinet Secretary for Health and Social Care, Humza Yousaf, before he was First Minister. Clearly, I recognise what the national health service did at the time and what the Government did in examining what had come to pass and how we had got to the situation where there were misdiagnoses.

At that time, when we were told as a group of MSPs that the families had been identified and were being supported, we perhaps made some assumptions. We assumed that not only were they being told about what happened in the diagnosis period but the support that they were getting would be specific, additional and on-going. It might be that we should have pursued that more at the time, which I think we can all acknowledge.

I believe that the processes to rectify what happened were internal to NHS Lothian. It wanted to understand what had gone wrong, fix its services for the future and ensure that the lessons that were learned would be shared and procedures checked nationally. I think that that has happened, but we are left with some doubts, because the FLAAG families came to us and said that children of some of the families had not been identified. That begged the question of whether NHS Lothian ever identified all those affected.

In pursuing the matter on a cross-party basis, we have had a number of meetings and we have tried to understand what the issues were. One issue that we think is outstanding is whether all children affected have been identified. We know that 155 children have been identified from the 1,007 patients who were part of the sample. I understand that using a sample will be a common procedure for the NHS when issues are being pursued, but that approach does not necessarily identify everybody. There was a lot of high-profile media coverage at that time, and people might have thought, “Is my child affected?”, but there was an issue around the transfer of information.

Once there was an understanding of the problem, why were education authorities not told specifically about the 155 children? When we met NHS Lothian, we were told that there were confidentiality issues around that. However, I want to pursue that, because when do the internal protocols of confidentiality, in any institution, trump children’s welfare? I pursued that issue when I was in opposition and on the education committee and also when I was the Cabinet Secretary for Education and Lifelong Learning. There was a real need then to make sure that all institutions shared information when a child’s welfare was in question. In this case, along with her education and children and families colleagues, the minister should consider why the education authorities were not given the names of the children affected, or why a letter was not given to each parent so that they could present it to show that their child might have been affected.

We need to resolve the issue of what happens now. I ask the minister to please take this seriously. We are coming to her on a cross-party basis—we want to get help for those children and make sure that we can identify those who are in need. I ask her to please listen to us.

I take the opportunity to remind all members who wish to speak in the debate that they need to press their request-to-speak button.


Oliver Mundell (Dumfriesshire) (Con)

I am not a Lothians MSP, but I followed the issue during my time on the Education, Children and Young People Committee and on other occasions that have popped up. It was very interesting to listen to Fiona Hyslop’s contribution, and I must not forget Jeremy Balfour, whom I congratulate on securing the debate. His contribution was also excellent.

With this issue, there is a disconnect for people. I cannot believe that we are here in 2023—some time after the issue came to light—and that families are still facing difficulties in getting the services to work together and deliver for their young people. It speaks to broader pressures that exist in the system that, even when we know that families have been failed, we still cannot get it right for them. That should concern members across the chamber.

I know that the minister is new in post, but I am sure that she will want to help people to move forward, because that is what people want to do. The members who have spoken so far are right—in order to understand the importance of doing that, we have to recognise the grave injustice that has taken place.

For me, the issue is put into clear terms by the stark disparity between average identification time in the Lothians and in other parts of the country, which was highlighted at the time of the report by the National Deaf Children’s Society. People elsewhere in the United Kingdom are identified within 109 days on average, but in the Lothians, the average is 4.5 years. Even if it is a small group of families who wait a very long time for identification, something has gone very badly wrong if there is that difference.

The sad truth is that professional standards were not followed and there were poor management protocols. I think that that level of carelessness is unacceptable and cannot be tolerated. I am not confident that everything in audiology is working well now. I think that we see, across the country and not just in the Lothians, audiology services under huge pressure. One of my big concerns is that, because there are no audiology services in the community for adults—obviously, children should be being seen by the NHS—there are a huge number of people on the audiology lists, taking up space in our hospitals for routine things around hearing aids and removing ear wax, while those who need audiology services and that specialist support are waiting far too long. We know that even when families and young people get that diagnosis, they are not getting the support.

It is hard being deaf or hard of hearing in Scotland today. We have not got it right. For all the technological improvements, which I have seen through constituents and with a member of staff whom I had in this Parliament, things are just not there for them. Speech and language waiting lists are far too long. There are problems with getting British Sign Language interpreters and accessing basic services. When people phone up Government or council services, they are told that no one is there who can speak to them, or, if they have capacity, someone else has to speak to them. People have these problems every single day.

The families that are here in the gallery today have been failed. I cannot believe that we are not able to get it right for them, let alone all the other people who have seen their potential diminished. I would just ask the minister to take the calls from across the Parliament very seriously and to do what the Scottish Government can to get things right.


Jackie Baillie (Dumbarton) (Lab)

I begin by thanking Jeremy Balfour for securing the debate and for the content of his speech.

The failings that were identified in the 2021 audit of NHS Lothian’s paediatric audiology service are shocking and have potentially serious consequences. We might never have known about the scale of the problem were it not for the determination of parents and the National Deaf Children’s Society, who fought tirelessly for answers.

Children were prevented from gaining early access to hearing technology and were not supported to learn BSL when they needed it. The effect of that on the children could well be profound. There is no doubt that they have been failed.

Let us also not forget that the audit of the service did not include children who were born after 2018, so there might be many more children who have not yet been diagnosed.

Yet, the parents of the children who were diagnosed are still having to campaign for the support that they need because of the original failings of NHS Lothian. FLAAG has outlined areas where support is needed, including access to BSL tutors, speech and language therapy, and remediation for the children who have been affected.

Since 2011, there has been a 40 per cent decline in the number of qualified teachers of the deaf across Scotland, with falls also being reported in the number of specialist speech and language therapists and communication support workers. Currently, there is no dedicated in-school resource provision for deaf children in the Lothians and Borders area, as there is, for example, at the St Roch’s schools in Glasgow. Without access to such resources, deaf children with complex needs are still being failed.

In response to a question that I raised last year on the audiology scandal, Humza Yousaf stated that, of the 125 families who had been identified and offered a retest, only 39 children had actually had it done. That was in May, so can the minister give me an assurance that, a year on, every child who needs one has been given a retest and that all children born after 2018 have been properly diagnosed? Every child whose hearing impairment was missed deserves co-ordinated long-term support from health, education and social work services.

I understand that the Scottish Government still has not published the national review of audiology that it commissioned, which was due in January this year. Perhaps I have got that wrong. Can the minister perhaps advise Parliament on that and, in doing so, tell us why there is a hold up?

With every day of further delay, more children suffer. By failing, first, to identify those children’s deafness, and then not providing the support that they need, there is a risk that they will be failed over again. That cannot be allowed to happen. Urgency is the very least that we can offer those children and their families—action now, not later.

I very much agree and associate myself with Fiona Hyslop’s comments, because a cross-party approach has been taken. This is too important to play about with. We need to ensure that there are no more scandals like this in Lothian—or, indeed, anywhere else—ever again.

Once again, I thank Jeremy Balfour for his contribution and I hope that the minister will respond positively to the debate.


Karen Adam (Banffshire and Buchan Coast) (SNP)

Although I am not a Lothian representative, the issue is incredibly close to my heart. I express my heartfelt gratitude to Jeremy Balfour for bringing this crucial debate to the chamber today.

Ensuring that late-diagnosed deaf children receive the support that they desperately need—not only in Lothian, but across Scotland—is of the utmost importance. As a CODA—child of a deaf adult—I have witnessed the challenges that are faced by people who live with and are affected by deafness. Those experiences have deepened my understanding of the immense significance of the motion that is before us today.

As we have heard, the 2021 audit of NHS Lothian’s paediatric audiology service, which was conducted by the BAA, has exposed serious failings, but we cannot ignore—as colleagues have said—that it does not include children who were seen after 2018. That is deeply concerning, because we know that the crucial stages for fluent first-language development occur in the early years.

Shockingly, the BAA report reveals that the average age of identification of deafness in children within the NHS Lothian area is 4.5 years, which far surpasses the age in other regions in Scotland. By the time of diagnosis, the critical period for language and communication development has often passed, which leads to adverse consequences that might affect children’s entire lives. It is heart-wrenching to think of the missed opportunities and the uphill battles that they will face. Many of those children will require extensive support from health, education, social work and various other agencies to address their complex needs.

Let us also take a moment to acknowledge the families failed by Lothian audiology action group—FLAAG—which is an inspiring collective that is composed of families who are directly affected by the failings. Those families’ tireless efforts shine a light on the challenges that are faced by deaf children and their families. The challenges include their having less access to British Sign Language tutors, and to speech and language therapists and other appropriately qualified professionals. By not providing those essential resources, we deny those children the opportunity to develop their language skills and to remediate any damage that has been caused by failures in the audiology service.

We must recognise that the impact of late diagnosis goes beyond the immediate effects on individual children in terms of the obstacles that they face in education, employment, and social integration. It reverberates throughout families, communities and our society as a whole. Without proper support, their potential will be stifled and their opportunities for personal growth and their ability to contribute to society might be limited.

To address that pressing issue, we must establish robust systems that guarantee timely and accurate diagnoses for all children, regardless of their geographical location or background. We must invest whole-heartedly in early intervention programs that focus on providing the necessary support from the moment when a child’s hearing difficulties are diagnosed. By doing so, we can maximise their potential, thereby allowing them to thrive and to overcome the barriers that they face.

The deaf community offers a committed support network for individuals and families who are affected by hearing loss. Within online communities, local associations and support groups, a sense of belonging and understanding flourishes. Such platforms provide a space for sharing experiences, exchanging information and finding solace in the journeys of others.

Deaf role models and success stories illuminate the path forward, serving as beacons of hope and inspiration. They demonstrate unequivocally that a late diagnosis does not define one’s potential for a fulfilling and successful life—if the support is there.

I hope that the children receive the justice that they deserve but, above all, I want them to know that their potential for a fulfilling future is limitless. Alongside Jeremy Balfour and others, I will continue to work tirelessly and across party lines to ensure that they have every opportunity to thrive.


Sandesh Gulhane (Glasgow) (Con)

I declare a personal interest, in that I am a practising NHS doctor.

Today, sadly, we are discussing widespread failings by one of Scotland’s largest health boards—failings that have severely impacted on families and their vulnerable children. Some of those families are in the public gallery: welcome—the debate is for you.

It is often said that trust is important and that if it is lost it is very hard to regain. In the wake of a scandalous catalogue of failures, there is little confidence in NHS Lothian’s paediatric audiology service—or even in the Scottish Government’s supervision of that service.

Let us consider what the health board and the relevant Government minister have said. On 11 May, I asked eight formal questions of Jenni Minto, the Minister for Public Health and Women’s Health, in order to ascertain specific data on a range of unknowns, including the number of children who had been diagnosed with serious hearing difficulties over the previous five years and the number who had been identified as potentially having been impacted by late diagnoses.

The minister replied on 25 May with specifics. As at 16 May, 725 children were on NHS Lothian’s permanent childhood hearing impairment register—92 more than at the time of the 2021 British Academy of Audiology audit. The BAA had reviewed the auditory brain stem responses of all births back to 2017, and its second report will be made public in July 2023.

The minister confirmed that 147 children have been identified for clinical review, that 26 children had a missed diagnosis and that 31 had been recalled.

I also received a letter from the minister this week, stressing that NHS Lothian had made significant progress against all the suggested actions in the BAA report, and that governance and culture had improved. Paediatric audiology now has an additional senior expert—although, from the report that I got, we do not know what or who that is—and, each month, the Scottish Government will receive a progress report against the established action plan. An independent review of audiology across Scotland will report with recommendations in the summer.

On Tuesday this week, I had the opportunity in the Health, Social Care and Sport Committee to question Calum Campbell, who is the chief executive of NHS Lothian. To his credit, Mr Campbell offered a sincere apology. He said that the review was a wake-up call in Lothian and that his health board has followed every recommendation that was made by the independent chair, Jacqueline Taylor. His service has tried to contact every family, and has asked people to come forward if they think that they have been missed. NHS Lothian has increased its resources in speech and language and he feels that there is now no lack of access to British Sign Language tutors for those who want that.

If we accept without question those responses, it appears that NHS Lothian and the Government are getting to grips with the crisis. However, are families, here and elsewhere around Scotland, reassured by the words of those who are in the dock? We hear that children still face delays in accessing treatment or language support, and that families on low incomes or who have language barriers are being missed.

No family that is impacted by failure should be left behind. We must ensure that those failures are not happening elsewhere in Scotland, to help to restore confidence and trust. A good start would be for the minister to meet the deafness cross-party group of MSPs for further discussions on issues in their constituencies.

In addition, will the minister commit to making public the monthly progress report that NHS Lothian will send to the Scottish Government? I ask because transparency—sunlight—is the best disinfectant.


Carol Mochan (South Scotland) (Lab)

I thank Jeremy Balfour for bringing this important debate to the chamber, and I also thank everyone across all parties. It seems that we all agree that we need to work together to make changes here.

As we know, the paediatric audiology service at NHS Lothian has failed a great many children and their families. As well as increasing awareness of the impact of those failures on the children and their continuing struggle to get the support that they need, I hope that this debate, along with the meetings with parents and service managers, might help to reassure families. MSPs are identifying the steps that we can take to support the affected families and draw the attention of authorities, which I think continue to lack the urgency that is required to fix this problem.

We have had the privilege of meeting some parents here in Parliament and, as other members have said, the families failed by Lothian audiology action group is truly an inspiration to us all and a model for such campaigns in the future. When we encounter such determined campaigns, we cannot fail to be impressed and listen, and I think that the group has caused us to jump to take action. We wish that more had been done at the time to help parents to approach and get some action from the authorities that were tasked with the protection of patients and their families. Fiona Hyslop’s contribution was excellent in recognising that that is the case.

During the period of this scandal, the audiology department provided care to more than 22,000 children. An audit of some of the children identified moderate or significant concerns about the way in which they had been treated in almost 34 per cent of cases. However, as we have heard, that audit did not include any children who were seen after 2018, so we can be fairly certain that there are a great many more. We must consider that when thinking about the way forward.

The parents feel that there has been no acceptance that the original review was a sample, which is a crucial point. Given that it was a sample, there are children out there who might not have been identified. We must consider that possibility.

From other cases, we know that, if treatment opportunities are missed during a child’s key development stage, it can cause difficulties that can rarely be corrected later in life. Karen Adam’s contribution helped us to understand that we must support the children as they are developing. It is astounding that no account was taken of the fact that those children had missed an essential part of their development.

Although a lot of the political focus has rightly been on NHS Lothian, we must also seriously consider the help and assistance that the families need right now, because that is what will make a difference to the children we are talking about. Families report that a number of those children still require access to BSL tutors. That is a fact; parents are reporting that to us.

The Government’s manifesto contained a commitment to additional funds for local authorities for free BSL tuition for deaf children from the age of five. It is important that we get some feedback on that. I spoke to a family member who explained to me that it is very expensive to get BSL tuition, because it is not just about training the individual who needs to use BSL; it is about the whole family unit. If we want children to develop and have the same excitement in learning as other children, we must have wider access to free BSL training.

I will stop there. I thank everybody for their contributions to the debate.


Ash Regan (Edinburgh Eastern) (SNP)

I commend Jeremy Balfour for bringing such a serious issue to the chamber for debate. A number of excellent contributions have been made so far.

We are discussing failures in paediatric audiology at NHS Lothian. As we know, the review identified 155 children who were seriously affected. However, as other members have said, because of the timeframe, the review might not have picked up everyone who was affected. I raise that as an urgent point and ask the minister to look into it further to see whether anyone has been missed.

The root causes that were identified as contributing to the failures were listed as a lack of scientific leadership; a lack of knowledge, reflection and inquiry; and a lack of robust quality assurance processes. That led to assessments being carried out incorrectly. It is very disappointing that, at this stage, departments are being run in that way. If the minister is not able to advise on that today, I ask her to write to me and others on what progress has been made to deliver on the many recommendations that the review made. Many of those recommendations were extremely urgent.

This week, I took the opportunity to speak to two families in my constituency who were affected. I spoke to Stephanie, mother to Rory, who is 11. Despite repeated testing when Rory was a baby and a young toddler, unfortunately, he was not diagnosed as profoundly deaf until he was four. He went on to be fitted with a hearing aid and, later, cochlear implants. Stephanie told me that that represents five years of missed communications. Rory will start high school in the not-too-distant future, and his mother is very concerned that the developmental delay that was created by that level of misdiagnosis will not be closed by the time that he goes to high school. That will put him at a disadvantage without significant additional support, which he is, unfortunately, not receiving.

The second family I spoke to have quite a similar story. Their daughter was tested repeatedly as a baby and young toddler. When she was three years old, the family was told that she could hear perfectly well, which, of course, was incorrect. Her case was eventually picked up in the audit, and she was finally diagnosed as being deaf from birth. She is now four and a half and has been fitted with a hearing aid. However, disappointingly, at the family’s most recent audiology appointment, the clinical staff seemed to have no notes and seemed unaware of or unable to understand the diagnosis. Unfortunately, that does not fill that family—and perhaps others—with confidence that the culture that led to the failures in the first place has been addressed and improved on.

Misdiagnosis and mismanagement have caused both of those children and their families unnecessary suffering. The issues in NHS Lothian must be addressed, and those who have been affected need support. Fiona Hyslop put it very well when she said that that support needs to be specific, additional and on-going. I suggest that it should perhaps take the form of a full, individualised support plan for each child and their family; Carol Mochan made an excellent point in that regard. Such support is essential and, to be frank, it is the least that can be done to support the children and families who have been affected.

I hope that the minister will take on board the points that have been raised and that she will work with the cross-party group of MSPs to make the progress that is sorely needed.

The Deputy Presiding Officer

Due to the number of members who wish to speak in the debate, I am minded to accept a motion without notice, under rule 8.14.3 of standing orders, to extend the debate by up to 30 minutes. I invite Jeremy Balfour to move the motion.

Motion moved,

That, under Rule 8.14.3, the debate be extended by up to 30 minutes.—[Jeremy Balfour]

Motion agreed to.


Foysol Choudhury (Lothian) (Lab)

Families in Lothian placed their trust in a service that was there to assist and help them. Instead, they were failed by that service.

I have read some difficult accounts of children who were eligible for a cochlear implant—a technology that allows deaf children to hear for the very first time—but who, due to a late diagnosis, were too old or no longer eligible for that potentially life-altering technology. Some of those children were also diagnosed incorrectly. That was rectified so late that families have now been told that their child might never be able to speak. Other children will face major language and communication difficulties throughout their lives as a result of a late diagnosis. I do not need to express how difficult that must be for all of the families involved.

The failings of NHS Lothian between 2009 and 2018 mean that late-diagnosed deaf children have lost out on years of potential support and guidance. Sufficient tailored support must now be put in place to help those families.

The audit that identified the failings ended in 2018. As my colleague Jeremy Balfour said, many wrongly diagnosed or late-diagnosed children might still to be identified, and we must ensure that they are offered support. There will also be cases of children who were not included in the audit or who have not responded to the communication. Those children might still be without support, and sufficient measures need to be put in place to ensure that support is offered to every child who is affected by the issue.

A one-size approach will not fit all. There must be multi-agency tailored support available for those affected. Tailored support means looking at each child’s case individually and assessing how best to support them and their families.

Access to British Sign Language lessons and training should be readily available to the children and families who are affected, but consideration must also be given to cases in which BSL is not the best solution. Some of the children come from families whose first language is not English. What support will be offered to those children who might struggle to communicate with family using BSL? Children with additional support needs might also struggle to learn or communicate using BSL. Additional means of support must be offered to families whose children have learning or communication difficulties. That is how we can continue to support the families whose lives have been permanently altered by NHS Lothian’s paediatric audiology failures.

I thank Jeremy Balfour for bringing this important issue to the chamber.

I call Ben Macpherson, who will be the last speaker before the minister responds.


Ben Macpherson (Edinburgh Northern and Leith) (SNP)

I commend Jeremy Balfour for bringing this important debate to the chamber. Although the motion focuses primarily on NHS Lothian audiology services, I want to highlight the important interconnected issue of language and communication development and access to British Sign Language education, which has been brought to my attention by two constituents who are in the gallery today—Benedict and Angelika. They have given me permission to talk about their family situation in Parliament.

Benedict and Angelika’s two-year-old son Thomas is deaf. He is a wonderful child who shows great creativity and resilience. Understandably, Benedict and Angelika want Thomas’s educational prospects and those of other deaf children to be appropriate, available and delivered as well as possible. His parents have expressed to me that Thomas shows little progress in verbal language but that he is progressing incredibly well and quickly with one of our key national languages—British Sign Language.

As they think ahead to when he grows up, his parents are aware that there are deaf schools in Falkirk, Hamilton and Aberdeen but that, in Edinburgh, there are no deaf schools—primary or secondary—or school units that teach BSL as their principal language. All of that makes being a pupil learning in that national language very difficult in our capital city. Understandably, Benedict and Angelika believe that deaf schools are incredibly important for deaf children, as the curriculum helps them understand deafness and tailors learning to children’s specific needs. The education is simply reformatted.

Through my constituents, positive discussions have already taken place with the City of Edinburgh Council, which we are grateful for. Along with my team, I am committed to working with them and others to help create a school environment in our capital city that guarantees Thomas and other children like him a solid future and an equal education opportunity.

I am keen to see learning potential in deaf children achieved, regardless of their local authority area, and to see improvement in consistency across council areas. For example, provision in some areas includes weekly BSL instruction and communication support workers who are qualified to at least BSL level 3, but Benedict and Angelika have informed me that, in Lothian, because children learn 80 per cent of language through incidental listening to adults, the 30 minutes of BSL that Thomas currently receives a week during time in school is not a reasonable comparison to what his hearing counterparts receive. He does not currently receive the same curriculum as his peers, as he does not hear announcements, story time or other important things that are part of the school experience.

I appreciate that the Scottish Government leads with an inclusive ethos. That is highly commendable and something that we all believe in, but we must build on that to make it a reality for all deaf children in Scotland. I appreciate that the Government remains committed to supporting all children and young people, and we have a role in ensuring that that happens in terms of lived experience.

Although work is happening here in Lothian—and I am sure that the minister will elaborate on the initiatives that the Government is undertaking—there are service gaps. My constituents have already given me and others so much insight and carried out constructive engagement on how we can improve matters on behalf of their families and others in the deaf community, and I urge the Government and the council to focus on how we improve the services that are available to Thomas and others.

I call the minister, Jenni Minto, to respond on behalf of the Scottish Government.


The Minister for Public Health and Women’s Health (Jenni Minto)

I start by acknowledging the importance of the topic and thanking Jeremy Balfour for his motion. I also thank colleagues from across the chamber for their considered contributions. A number of points have been raised, to which I would be happy to respond in writing after the debate, as I believe that the subject requires considered responses to all of them. I am also happy to meet the cross-party group of MSPs, whom I commend for their work.

I welcome the families to the public gallery. I am sorry that it is in the current circumstances, but I thank them very much for the important work that they are doing to raise the issue with Government, their MSPs and NHS Lothian.

At the outset, I make it clear that the Scottish Government is committed to ensuring that all our children, young people and, of course, their families get the support that they need at the right time, as has been made clear through our getting it right for every child approach. Earlier today, I was at a session with officials talking about children in education and how officials can work better together, and I will take back to my officials some of the learning from this debate.

I recognise the seriousness of the failings around NHS Lothian’s paediatric audiology services, as outlined in the British Academy of Audiology 2021 report. Put simply, as others have said, the report showed unacceptable levels of failure, as a result of which a number of children and young people and their families have endured lasting impacts on their lives. I have no doubt that those affected by the situation in NHS Lothian are anxious and rightly angry about what has happened. As Jeremy Balfour has said, these are real issues impacting on real families.

In December 2021, NHS Lothian was escalated to stage 3 of the board performance escalation framework for audiology performance and service delivery, which demonstrates how seriously the Scottish Government took the situation. That step was taken to ensure that the necessary improvements were made to the service, with a formal recovery plan being developed by the board in partnership with Government. I am pleased that work has been taken forward by NHS Lothian and that progress has been made, but I am aware of some of the points that have been made and would like to explore them further. I also encourage families who think that their child might have been affected by the situation or who have concerns about their child with regard to audiology to contact NHS Lothian’s helpline on 0808 800 8880.

The Scottish Government is clear that families across Scotland should have assurances that their children are getting the best possible audiology support. That is why we introduced the national independent review of audiology services in January last year, which will report on its findings soon. Indeed, Jackie Baillie referred to that in her speech.

Although it is important to reflect on previous failings and the subsequent work that has been done to make improvements, that does nothing to help children and families who have already been affected. That is why it is vital that our public services are joined up and that children get the support that they need. A number of my colleagues referred to the importance of health services working with education services to focus efforts on supporting the cross-portfolio work that Fiona Hyslop talked about and to avoid the disconnect that Oliver Mundell described.

Our see hear strategy, which is jointly endorsed by the Convention of Scottish Local Authorities, provides a strategic framework for action to meet the needs of people with sensory loss, against a background of increasing demand, requirements for greater efficiency and effectiveness and health and social care integration. A refreshed strategy will be published in 2025, and in early discussions, stakeholders have identified the need to include more on early years, children, young people and transitions to adult services. We will listen to the voices of those with lived experience, as Karen Adam eloquently put it, to progress that work properly. The Scottish Government’s sensory loss and social care advisory group will support and advise officials on the strategy, as will a group of Scottish Government policy officials who have an interest in sensory loss.

I will reflect on Karen Adam’s point about peer groups and support from third sector partners, which are a vital element. Since 2016, the children, young people and families early intervention and adult learning and empowering communities fund has provided just over £100 million in funding to 115 organisations to deliver support that tackles inequalities, addresses child and family poverty, improves learning and builds skills. Some of that funding has gone to the National Deaf Children’s Society, which receives £102,900 annually to support a range of activities.

On public service provision, access to specific support for education and learning is critical—Ben Macpherson and Ash Regan referred to that. It has been helpful to hear their constituents’ experiences; I thank the members for sharing those experiences and their constituents for allowing them to be shared. As Jeremy Balfour has said, the Parliament works well when we collaborate with honesty and with experience from our constituencies. We are committed to supporting the delivery of high-quality early learning and childcare services in language-rich environments that provide children with opportunities to play, learn and interact socially.

A number of members have referred to British Sign Language. In supporting the provision of sign language, we aim to make Scotland the best place in the world for people who sign to live, work, visit and learn. We are developing our British Sign Language national plan for 2023 to 2029, which is due to be published in October. As part of that, we have identified key priorities, which include support for deaf children and their families and better support for the BSL workforce. An implementation governance group will oversee the plan to ensure that we deliver our commitments in a way that addresses the current needs of BSL signers across Scotland and identifies any new needs that arise over the plan’s lifetime.

I will briefly reflect on the point that late diagnosis might have an impact not only on learning but on mental health. The Scottish Government is committed to improving access to community mental health and wellbeing support. Through our investment in community mental health services, we are providing local authorities with £15 million per annum to fund community-based mental health support for children, young people and their families.

I again thank Jeremy Balfour for bringing the debate to the chamber, and I thank my colleagues for what have been, as I have said, thoughtful and thought-provoking contributions. I reaffirm the Scottish Government’s commitment to ensuring that all our children and young people have access to the right support when they need it. I am not sure that “look forward” is the correct phrase to use here, but I will ensure that we meet the cross-party group of MSPs as soon as possible.

13:50 Meeting suspended.  

14:00 On resuming—