Gayle Johnson is a Qualified Teacher For Vision Impairment (QTVI) in the Vision Support Service at Dorset Council.

Through her career in education as a Special Needs Coordinator and Senior Leader, and now in her current role as a QTVI, she has developed a special interest and expertise in aniridia, and has 2 primary school age students with aniridia on her caseload.

At our online conference on 27 July 2024, she spoke about her work in the Vision Support Service, including the referral process, how they assess functional vision for students with aniridia, and some of the recommendations they make such as assistive technology and modification of resources.

You can see the video of her talk below, and the transcript is provided beneath.

Transcript

[Tierney] All right, hello everyone. Hopefully you can all hear me. We’re delighted to have you here for 2024’s Aniridia Conference. We’ll pretty much jump in and get started. We’ve got some great talks today, so hopefully there’s something for everyone. And I know I’m certainly looking forward to hearing all the talks.

First up, we’ve got Gayle Johnson. So I’ll hand over to you, Gayle, to introduce yourself and your topic.

[Gayle] Hi everybody. I’ll just start my presentation because it’s got a little intro to me at the start. So thank you to Tony and James for inviting me to the conference today. It’s a privilege to be able to talk about my work to everyone who’s attending.

So a quick summary about me. My name’s Gayle Johnson. I’m a senior qualified teacher for vision impairment and I work in Dorset Council for the Vision Support Services. I’ve currently got about 80 children with vision impairment on my caseload.

I’ve got two primary age children who’ve got diagnosed aniridia. I’m based in the picturesque south coast of England, which is very sunny today. So I cover the regions of Dorset, Bournemouth, Poole and Christchurch.

And then my background is in education, where I’ve enjoyed some time as a special needs coordinator and senior leader. And I developed a special interest in aniridia. So I’m here today because I’m always interested to learn new information about aniridia. So I’m pleased to be joining your conference.

So this is what I’d like to talk about today and the areas I’ll be covering. So the slide’s got a picture on there of a young person making a lovely Christmas tree. That young person has got aniridia, and he’s one of the students I was talking about. His picture will appear throughout the presentation.

So today, I’m covering the referral process and guidelines. So this is how we work and how I work. The assessment and how I assess functional vision of young people, and the importance of specialist support. And that’s where I’m going to give some recommendations about resources and strategies for young people that we’re currently using, especially for those students who have aniridia. There’s time at the end for questions as well, if anything crops up.

So this slide is about who we support. So the question is who do we support? So we support babies, children, young people who are diagnosed with a vision impairment from birth to 25 years old. And some of you might have heard of a thing called an Educational Health Care Plan. So we support children who have or have not got an Educational Health Care Plan. If they haven’t got an Educational Health Care Plan, we support them until they’re 18. If they have got one, we carry on supporting them until they’re 25 years old.

So referrals can be made at any stage. For example, we work with children from diagnosis, which is often within the week of their birth, or even before they’re born, if an eye condition is identified and confirmed through a prenatal scan. Although that is relatively uncommon, it has happened. Usually referrals are made after a baby’s had based had vision checks in hospital.

But just to say that my presentation is representative of what we’re doing in Dorset, it might be slightly different around other parts of the UK. But generally, most sensory services do work in a similar way to us.

So who are we in Dorset? So the slide here has got a picture of some little Lego people, which I thought you might like. So just to give you an idea of our structure. This structure is very similar in other local authorities, councils and boroughs around the country.

So this is the list of who we are. Quite a small team. So we’ve got the Qualified Teachers for Vision Impairment, I’m one of those. We have Qualified Mobility and Habitation Specialists, got two of these currently working in the team. We’ve got a Specialist Technician, so a person who helps us with our modification of resources and technology. We’re also very lucky to have a Specialist Teaching Assistant who comes out to help us teach skills to our young people. And we’re also very lucky to have an excellent Touch Typing Tutor who teaches children how to type without looking at the keys.

So Vision Support Services are part of a bigger, wider team called Sensory Services in Dorset, and we’ve got a hearing impairment team who also works alongside us. We come under an umbrella called Educational Services. So we’re not part of Health or Social Care, we’re part of Education.

As I said earlier, I’m lucky to work in Bournemouth, Christchurch and Poole. And we work very closely with Bournemouth, Christchurch & Poole and Dorset Council. We’ve got a joint arrangement service with them.

All of our work aligns with the Department for Education and official guidance, and that supports us in the level of support that we provide. All the Qualified Teachers for Vision Impairment, including myself, have completed a mandatory postgraduate qualification, which takes two years. And all of our teachers are also qualified to teach braille, up to unified English braille to grade two, and all our qualified teachers are also mental health first aiders.

And I just thought I’d add that if you’re interested or living in an area that’s not in Dorset or BCP, if you wanted to find out information about your services, I think the RNIB would be one of the better places to access that. If you go on to the RNIB website, there is a helpline number, if you wanted to find out what’s happening in your local area.

So the next slide is about how our referral process works. It is a flowchart, I’ll just read how it flows. So we start off, the very start of a referral process is actually identifying the need. So has the child or young person got an identified and recognised vision impairment? To find out a bit more, we would ask them to seek medical advice to get that confirmed.

And then we move on to completing the Vision Support Service referral form. After that’s completed, we would ask for some medical reports to go with the form. Then that form is submitted. And we look at the form and review it. And then we decide whether it meets our criteria, we will move on to visiting the child or young person.

And after that, the flowchart carries on to us completing Functional Vision Assessments, which I’ll talk about a little bit more in a few slides on. And then we plan our provision and decide how we’re going to support.

So these steps outline the systematic process that we have for identifying and addressing educational needs for babies, children, young people, like I said, up to age 25 with vision impairments, and particularly with aniridia.

So when we get the medical advice, that guides us as to what the needs might be, we gather all that information together. And as I said, we will visit and conduct some Functional Vision Assessments, so that we can understand how that vision impairment is impacting on the young person.

We use something called the NatSIP criteria, which I’ve got a slide for in a moment. So that ensures that we are providing a fair and best practice service. And that guides us with how often we would go and visit the child or young person. If they’re a baby, then I might go visit them every fortnight.

So this slide has a picture of our lovely website. So it’s the Dorset Council website. And on that website, we have our request for our service referral. I think it’s quite good actually. So it’s fairly recently that we’ve gone digital. So we still accept referrals by email, a form that’s filled out. But generally, it’s been really successful and streamlined and sped up our request by having an online referral.

So the picture there has a yellow button which, if it was the working website, you would click on to start your referral. So we take referrals to our service from NHS professionals, from the families / parents themselves, from mainstream / special schools, if there’s concern there, colleges, other settings like preschools, and lots and lots of other agencies as well.

So within Dorset we have Special Needs services, something called Portage, or their Best Start in Life services, they might refer to us. Fostering Services and Social Care might refer to us as well. So there’s lots of people who can access our referral.

The Dorset criteria for support for young people who would have aniridia is that, like I said earlier, they must have a diagnosis of eye condition confirmed and a vision acuity. And I’ll talk about vision acuities and what the numbers mean, if you’re not sure. But if we were testing their vision acuity, their acuity would be around 6/18 on the Snellen chart, and that’s for their distance and their near vision. So that would assess them as having a moderate vision impairment.

So once the referral’s completed, we aim to call or contact the family within 24 hours of receiving the referral. And that’s when we talk about what we can offer and arrange a visit. And normally, that’s a really nice conversation to have with parents and families, they’re normally very, very grateful to hear from us.

I mentioned earlier on NatSIP guidance and guidelines. So this slide has national guidelines we use. It’s called NatSIP, So this enables our service to provide what we call an equitable, so equal access, allocation of our resources. So everyone gets a fair chance to have the services we provide.

And also, it’s a starting and ending point. So we assess is the service required? Yes, carry on. If it’s not, then there’s an exit criteria as well, so we can reduce the amount of support or dismonitor. We provide a means of identifying the level of support required. Like I said earlier, sometimes our support will be every week, sometimes it will be monthly, sometimes it will be twice a year.

So we assess on the need of the child, how often we’ll be supporting. And then it provides us the means of justifying our allocation of support. It’s based on Department for Education legislation, and it’s underpinned by the Special Educational Needs and Disability Code of Practice.

So these are all very meaningful and legal documents and statutory requirements. So it is a statutory requirement for a local authority to provide a sensory service like ours. So we’re affiliated to the NatSIP partnership, which is good. It ensures that we’ve got quality standards and they’re maintained correctly.

So, like I said earlier, if you wanted to know a bit more about your local authority and how they’re working, I would get in touch with the local authority sensory services or contact RNIB.

I mentioned Functional Vision Assessments on that flowchart. So once we’ve visited a child, we will look at how their vision is working for them. So what does it mean by Functional Vision Assessments?

So as a Qualified Teacher for Vision Impairment, one of my roles is to assess and provide advice and recommendations about how vision is working. And that’s called functional vision for children, especially with aniridia. We’ll explain those a little bit more.

So this slide has Functional Vision Assessments explained in the title, with the little picture there of some children, and they’re trying to look through their fingers, I think, three children there.

So typical vision function tests assess what the vision is like, the quality of the vision, the accuracy of the vision, that’s called visual acuity, the contrast sensitivity of the vision, how the colour vision is working, and how the field of vision is working. These are all part of Functional Vision Assessment tests.

So a Functional Vision Assessment, I haven’t mentioned this, but it’s not actually a clinical examination. So I’m not a qualified doctor or an ophthalmologist. That’s why my my testing is only functional, it’s not clinical. And we don’t use eye drops. And we test the young person in a familiar setting, and explain the results in simple terms to the child, so they can understand, the parents and teachers and other services. So yeah, functional vision is different to clinical vision assessments.

When we do the testing, the child wears their glasses if they have prescribed glasses. And it’s helping us to understand how that vision is working in their everyday life. I think we’re really lucky, because we have the opportunity to test children and young people in a familiar environment, which actually helps us to get quite good results.

It can be quite nerve-wracking, anxiety-inducing and upsetting when children go to hospitals, for some not for others. But I think we’re very fortunate when we do the testing at home that the children are feeling happy and comfortable there.

Before the age of 18 months, most of our Functional Vision Assessments if a child had aniridia would be through observations, looking at the eyes, how they’re moving, watching the child, how are they moving, how are they playing, how are they using their hands, all through observation.

We also use something called the Developmental Journal for Vision Impairment, which is a set of booklets. It’s a fantastic resource that we really enjoy using, and it’s widely used across the UK. And it helps parents to track and understand the development of the child and their vision.

So the next slide I’m going to show you explains a bit more in detail about some of the Functional Vision Assessments we do in Dorset. So examples of assessments that we do in Dorset, they are standard assessments. The slide there has got the list. Kay Pictures, iSight app/charts, the Malure Reading Test, the Snellen chart, the Ishihara Colour Test. And as I said, we do lots of observations, particularly of younger children.

Some pictures on the slide. So we’ve got the Snellen eye chart, which is a letter chart, which has a big capital E at the top. And then to the right of that, we have the Ishihara Colour Test, which is like coloured blobs. They have a number which is hidden within the colours, a different colour number, contrasting to the colour surrounding it.

And then below that, to the left, we have the Kay Picture chart, which I’ll talk about in more detail at the moment. And then a picture of somebody holding a pen torch with a monster on top, which is also part of the functional testing, which I’ll explain as well.

So most people are probably most familiar with the Snellen chart, which is the letter chart. It’s a commonly used piece of equipment to test their vision acuity and you’d have it when you go to the opticians or to the ophthalmologist. So it has rows of letters of varying size, and we ask the child to read down the letters if they know the letters.

If they are not ready for the letters, then that’s when we use the pictures. So we have something called the Kay Picture test. It’s also used in hospitals for ophthalmologists, for younger children, to assess their near and distance vision. The test consists of six pictures, which is a boot, a star, a house, an apple, a duck, a car, of varying sizes. And they’re used instead of letters, as I said, up to the age… well, it can go up to when they start school, it starts approximately when they’re about 18 months old, they can start to use those pictures.

And part of my role is to help the children to learn the pictures. So I use real objects and games to help the children identify what those pictures are on the test. I’ve got a little tiny welly boot in my kit, which we play and use to help the children to learn the understanding of those Kay Pictures. And it prepares them for their visit to the ophthalmologist, And I’ve had some nice feedback from the families that that’s really helped.

When a child has colour deficiencies, we still say colour blind, we’ll use the Ishihara test, which I mentioned, where the dots are the same colour. And if you’ve got normal typical vision, you will be able to distinguish a number. If you’re having difficulties with your colour perception, you won’t be able to distinguish examples.

We also use a reading test called the Maclure, which is useful for assessing near vision of young children. These are sentences and words, so they’ve got to be able to read that one. And it comes in different print sizes. So it goes from n5, which is really small print, to n48, which is really quite large print. And it really gives us a guidance of the correct size for that child left on site. And that, in turn helps us to modify and make books in large print, exam papers in large print, having text on the screen in the correct font size.

And finally, the monster on top of the pencil, which does look fun, and it is fun. It’s what we use for observing and assessing a younger child, a baby, looking at how maybe they fixate, looking at a visual target. You might have seen them used in hospitals as well, how are they responding, do they blink to the light of the torch? So it’s all part of our Functional Vision Assessment.

So the next slide, what does this mean for children with aniridia? So there’s a photo there of a young person, that’s one of the young people I visit who’s got aniridia. He’s holding his long cane, and he’s smiling away, he’s wearing glasses, and he’s got a little pen, because he’s just done a little tour of his school and found a new classroom, he’s really happy about that. So that was about two weeks ago.

The other picture is a picture of somebody, a cartoon person with their arms outstretched, and they’re saying “I need…”. So every child with an eye condition, including aniridia, is an individual. So supporting… I can’t just say this is how you do it… supporting children with aniridia involves looking at their unique vision and learning, and creating what we call this inclusive environment.

So aniridia, as you’ll know, is a rare genetic condition, so it affects the development of the eyes, and it does lead to reduced vision. So these are the sort of strategies that I would be looking at, and are often required, but they are a generalisation for our students who’ve got aniridia.

So particularly challenging for young people with aniridia is participating in visual-based learning. So art can be challenging, science can be challenging. And then reading / writing can be challenging, especially if you have additional eye conditions, like nystagmus, which is an eye wobble, and if you have photophobia involved in aniridia.

So there is a need for teaching to be adapted with materials and resources. And this helps the children to access their learning. And I always have it in the back of my mind that actually, yes, these children have the same right to high quality teaching as anyone else in their class. And that’s what we’re aiming for the same experiences as closely as possible for those children.

At the heart of everything, I think we’re supporting these young children to feel safe and secure and confident. And I love that picture of that young person smiling away. Because he was feeling great about finding his way around his school because he’s been well prepared, he’s had some good mobility sessions, he’s familiar with his school. And we put that support in, ensuring that they get the right amount of support at the right time.

And we are aiming for them to be as independent as possible by the time they are young adults, and helping them with their independent living skills. So the support works best when young people have the challenges and are challenged, but we also support at the right level as well.

I’m particularly keen on young people finding their own voice. I know I’m doing a lot of talking today, but when I’m working with young people, I really like to ask and listen to what they’re saying, regular discussions about what’s working for them, observing what’s working for them, in their learning, in their life, and hopefully building up their confidence so they can self-advocate and talk to other people about what is working and what isn’t working.

Okay, next slide. It has the title “Access to learning and learning to access”. It says recommendations and advice for parents/carers, schools, preschools, supporting children with aniridia. There’s some speech bubbles and I’ve written “seating position in class, font size, writing slope, access audit of the school, verbalising instructions and modified printed resources”.

So those speech bubbles are the sorts of advice that I give regularly to schools and settings generally, and sometimes the parents about what works when supporting a young person who has aniridia.

Sometimes the recommendations are straightforward. They could be recommending touch typing, which we would provide tuition for, they could be asking the teacher “Can you use your blinds in the window to reduce the glare please?” Seems obvious to us, but sometimes it has to be recommended. And this is what we’re aiming for.

So the title “access to learning, learning to access” is actually not mine. I borrowed that. That was produced by someone called Mike McLindon and Graeme Douglas. And it’s based on the idea that over time, we will shift from support being provided directly to the young person for the access to learning, which they need when they’re younger, to them developing their skills for themselves to become independent advocates for themselves. And it doesn’t happen overnight.

So this support can happen, VI specialists like myself are going to help those children and their families on their educational journey. And we’re promoting structured environments for learning, where they can learn to access, gradually leading to the young person themselves, like I said, being independent and accessing the learning.

And it happens. I’ve got some nice examples of young people who I’ve been supporting for a while, going on to secondary school from primary school, they’re self-advocates, they can talk about what their needs are, what their eye condition is, what works for them with their modification of their resources and their technology. But it is a journey to become an independent learner and it can be a long one. So that’s why I think our service is really good at being there for those young people until they leave education.

This slide says “Assistive Technology”. There’s a photo at the top of a child in a wheelchair, he’s on the top left using an iPad that’s attached to a green stand, it’s nice and easy to move. Next to that, to the right, is a tablet on a raised stand with the distance camera. These are all pieces of assistive technology, which I’ll talk about a bit more. In the lower left corner is a picture of… it says Google on it, but it’s actually a braille note taker with a touchscreen and a refreshable braille display. And to the right of that is a child using a laptop computer with a screen reader.

So assistive technology, it’s really advanced actually, in so many ways, I think in the last five to 10 years. And the feedback we get from students with vision impairment is that they like their technology, and they find it helps them access their learning.

I think, if you have seen the photos, or if you come across this sort of technology, I think you’ll appreciate it’s less intrusive now, particularly in the classroom setting when you compare the size of an iPad, a standard iPad Pro, to an old technology, we see something called a CCTV magnifier, which is the size of a PC. So having something that you can have in class, that isn’t as obvious, is very appealing to our young people and helps them to feel that they are fitting into class.

So there’s many ways that we can support children with aniridia with their access to learning. The young person who I’m showing in the picture, he uses the iPad Pro. And he also uses Humanware Connect 12, which was that tablet stand for the distance camera.

Sometimes it can be simple and the young person just requires a larger monitor to change the display of fonts and icons. But there’s a lot of built in assistive technology now in our devices, like an iPad, where you can change your font size yourself and have the colour scheme change to suit your needs.

Other young people will require more specific technology. So we loan out all of these pieces of technology at the moment, and we’re always reviewing them and seeing what’s coming out next and what is becoming more dated.

The braille note takers are the choice for young people who are learning braille or writing braille in their own work. So we do loan out those devices, and they have options for refreshable braille, which means the braille pops up and disappears at the bottom of the device, so they can read along with what they’re inputting. They haven’t actually got the keys there, but they will be inputting at the top of that screen.

And audio books. Assistive technology can be through smart speakers at home. So lots of our young people listen to their books at home through their smart speakers, using their voice controls. So as I said, technology is always advancing, it seems to be going in a good direction for our young people with visual impairments.

This slide says “Braille”, I have mentioned braille already. So learning braille is like learning another language. Children learn braille code, learning braille from a young age… I’m reading off the slide here… has important benefits of children with vision impairment and it can help with literacy. And Braille is a much better way for a young person to understand punctuation, grammar and spelling than learning by audio.

I’m often asked if braille is still relevant in 2024. And yes, it is. Tactile learning of braille is assessed according to need. So if a young person is educationally blind and not able to access 48 font size, which is that larger font size I mentioned, then we will introduce braille and that will be considered for that learning media.

We’ve also trialled recently a new braille device called the Annie, which is the first time I’ve known an interactive device that is actually quite fun for learning braille, because it has been all paper-based and not using a lot of technologies. So we’re introducing that in Dorset. And I think braille has moved into the 21st century. And we’ve had some lovely things come along like Lego braille bricks, which have helped our young people access braille and make it more fun.

Okay, this slide says “Curriculum framework for children and young people with vision impairment”. There’s guidance on 11 curriculum areas. So this was released in and launched in March 2022, and it’s a national framework. So if you were doing a search on the internet for a curriculum to help young people in the UK with vision impairment or aniridia, it would come up with this guidance document.

So it’s been produced in collaboration with the RNIB charity. And it’s developed to support young people with vision impairment. So they get this equitable education, which I mentioned before, so equal access for them. And the framework presents outcomes, which are in 11 teaching areas. I won’t list them all off. But if you’re happy to find out from the RNIB website, there’s a document there for families or professionals if you’d like to find out more about it.

It’s still relatively new in the VI education world. And we are using it, but it’s still in development. So we’re starting to talk about those 11 curriculum areas in our work. And we’re looking at how we can do that and embed that in our service.

The image on the page there is the front cover of the curriculum framework for VI. So it’s got the title “Curriculum framework for young people with VI” and a picture of someone sitting at a table, with an adult and a child using an iPad.

So the next slide says “Support Systems”, and it’s got a photograph of a teenage girl in the foreground. And she has a speech bubble saying “Sometimes I can’t see my friends and I get left out.” She doesn’t look very happy. There’s three teenage girls in the background as well, who are blurred away but they’re there and they’re whispering into each other’s ears.

So this is the part where I’d like to talk about setting up support systems for young people, particularly with aniridia. So an illustration of this point of a support system would be the people around that young person. So the teachers, the parents, the friends, the school staff, how are we working together to create this supportive environment, and myself included and my team.

So yeah, highlighting the significance of those partnerships. These children are not on their own, there are lots of other people around who can support. And the way we do this is my service offers training for teachers and staff, specifically if they have a child with aniridia, so they can understand what the eye condition is and how to support those young people with vision impairment.

We also offer workshops on using that assistive technology that I’ve been talking about. So creating accessible modified materials. So if there is a need for modified large print, we offer training for staff at school, the teachers or teaching assistants, to produce those resources.

And what I really enjoy as part of my job – I do love my job – is peer training, where we provide awareness training for the classmates of that person who have aniridia. It’s been really successful, in many cases, to foster an inclusive culture for those young people.

So we start very young, sometimes I might go into reception class and talk about what it’s like to have an eye condition, and the sorts of things that you might be finding helpful to use. And if they’re using braille, to explain what it is to the rest of the class. it also takes away a lot of the stigma and the questions that young people get asked about their eyes.

We show them pictures of what someone’s eyes with aniridia might look like, whether they have Nystagmus, if they’ve got the wobble on their eyes, then that is involuntary. We answer a lot of questions that young people might have in those peer awareness training sessions.

We promote buddy systems to encourage peer support as well. So that person doesn’t feel alone at play times. And they are generally very successful. But as I said, it is really this whole support system of all of us working together and providing in person.

The next slide says “Social Opportunities”. And there’s a photo on the left hand side that says “VI Cricket Day” underneath, with one person bowling a ball, which is bigger than a cricket ball, more football size, and a person, actually a person with aniridia there, standing ready to bat with a cricket bat, and someone behind is waiting for the ball as a fielder.

The next picture is a photo of a day we ran, called the “My Bank Money Workshop Day”. And those are two siblings who have aniridia, who attended and learned about managing money, and how money works.

So in Dorset, as a team, we’re trying really, really hard to increase the opportunities for our young people to meet up and join in exciting events. So these events are just run for the children and young people that we visit. So far this year, we’ve hosted VI Cricket, VI Chess, the My Bank Money Workshop Day for primary children, we’ve had a Blind In Business event, preparation for adulthood, those who are looking at starting work.

And we’re really proud to have started an online low vision meeting for young people, which they’ve named themselves the Dorset Eyes Group. So they meet every month, and they talk about their agenda. So they talk about what they would find helpful. Sometimes it’s computer games and accessible games.

Often it’s about things that they’ve found tricky in their own lives. We’ve had some good feedback. Someone was finding it very hard walking on the pavement with overhanging branches, and we found a way to contact the local council and get those cut back. And it actually worked. So that was all through their meeting.

We’ve got more plans in the pipeline to do these events. They’re so important for young people who don’t necessarily know another person in their community who has a vision impairment – sometimes they do, but sometimes they don’t – to meet up. We’re planning to do a VI Football day in association with football associations, STEM Science day, maybe a Robot Wars day we’ve got penciled in, and also looking at a Creative Arts day.

Coming towards the end now. So this slide has a picture. In the background there’s some mountains and a lake, and someone’s looking through a lens, looking at the mountains. And it says “Focusing on what matters”.

So in closing, just to emphasise, there’s a lot to think about when supporting a young person or baby with a vision impairment and aniridia. But what we do is we really focus on what is important, which is putting the child first, and making hopefully them the centre of all the decisions, so they’re able to speak. But when they are able to speak, that self-advocacy, asking them to contribute, is very, very important.

I think I’ve come to the end now. So thank you for listening. And I’m happy to answer any questions anyone might have.

[Tierney] Thank you so much Gayle, that was really, really interesting, such a great talk. If anyone does have any questions, please do pop them in the chat.

But to get us started, I have one, which is with regards to parents and carers and things like that, how do you recommend they get started and find the information that they need to find the support that you guys provide? I think a lot of people don’t really know where to start.

[Gayle] Good question. So it really starts with that diagnosis. So if they have the diagnosis, I would be speaking to the ophthalmologist, because they can make the referral to us. Or, as I said, it’s slightly different in different areas.

So if you weren’t getting anything back from the ophthalmologist, I would contact the RNIB helpline, and they will guide you about your local authority area, or borough in London, wherever you might be living and how it will work. There will be a sensory service like mine somewhere nearby. Sometimes it’s run by charities. But yeah, more than often, it will be run by the local authority, like the council.

[Tierney] Great. Do we have any other questions for Gayle at the moment?

[Lady] Hello.

[Gayle] Hello.

[Lady] How many children do you have in your area that have aniridia in particular?

[Gayle] That’s a good question. So I have two on my caseload at the moment. I know there’s another two on somebody else’s caseload. I don’t think there’s more than that. I think there’s four in our area. So as I said, it is rare.

Because I also found out how many active cases we’ve got, because I thought someone might ask the question. So we’ve got 369 active cases, so to have four out of that many. It’s very low, isn’t it? Very low incident.

[Lady] How did you get interested in the aniridia ones?

[Gayle] They’re lovely children, and a lovely family. Yes, they are. It’s an unusual condition. And it’s rare. And I like the challenge of finding ways to support the young people and in their success, helping them to have success. So yeah, I think that’s what got me interested. And yeah, very, very, very supportive family as well, with the two young people that I’ve met. So yeah, just very interesting cases. Yeah.

[Lady] Okay.

[Gayle] Thank you.

[Lady] Thank you.

[Tierney] Great, thank you so much, Gayle.

[Gayle] Thank you.

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Thank you to Glen for the video editing and write-up.