Bowel Research UK’s Patient and Public Involvement Manager Sam Alexandra Rose is joined by Eamonn Dunne, the Partnerships and Projects Development Manager for Thomas Pocklington Trust, a national charity supporting blind and partially sighted people. In this episode, they discuss the difficulties that people with visual impairments have when taking a FIT (Faecal Immunochemical Test), which can be essential for the early detection and diagnosis of bowel disease. Eamonn introduces a prototype, named FIT-aid, which could help people with visual impairments take a FIT with ease.
Transcript
Sam
Welcome to Can I Butt In, the Bowel Research UK podcast where we welcome bowel cancer and bowel disease, patients, researchers, healthcare professionals and carers to butt in and share their experiences. We’re picking a topic every episode and getting to the bottom of it. I’m your host, Sam Alexandra rose, I’m the patient and public involvement manager at Bowel Research UK. And as a patient myself, I’m excited to bring more patient and researcher voices into the spotlight.
Hi, everybody. Today we’re talking about FIT tests, an easy and convenient bowel screening method potentially, but much more difficult for those who are visually impaired. I’m joined by Eamonn Dunne from Thomas Pocklington Trust, which is a charity that supports blind and partially sighted people. Hi Eamonn, Welcome to the podcast.
Eamonn Dunne
Hi, Sam, thanks for inviting me.
Sam
Thanks for coming. So, do you want to start by just sort of introducing yourself and telling us a little bit about your role at Thomas Pocklington Trust?
Eamonn Dunne
Yeah, sure. So, yeah, my name’s Eamonn Dunne, and I work for the Thomas Pocklington trust. And I have done for the last six years now, so I’m quite a veteran really for our organisation. So as Sam says, we work to support in very many different ways, blind and partially sighted people and my specific role in it, as partnerships and projects development manager is to look at health equity. So, it’s really good to be here today to talk to you about the FIT test and bowel research, because this is one area that we’ve identified where there is a health inequity, and that’s around the home FIT testing kit. Do you want me to give a bit more detail about that Sam?
Sam
Yeah. So, should we start by explaining to people what a FIT test is? So, it stands for faecal immunochemical test which is, quite hard to say!
Eamonn Dunne
Oh, I’ve got that written in front of me thank you… thank you for saying.
Sam
I’ve got it written down too. So, this looks for blood in the poo, doesn’t it? That people might… you might not be able to see with the human eye.
Eamonn Dunne
That’s right. And as part of the government’s health screening programme and ill health prevention strategy, the FIT tests are sent to people who are registered with the GP used to be when they reach the age of 60, but they’re gradually getting to grips with doing it from people from the age of 50. So, you might not get one, straight away, when you’re 50 you might be 54, but they’re trying to kind of get, obviously with the capacity, to get down to the age of everyone who reaches 50 will get this this test. They’ll get a letter first to introduce the fact that this test kit is coming out, just to prepare people for it and why they’re doing. There are various campaigns through different NHS organisations and perhaps your local GP will have some posters on the wall about it. Or you might find out through other family members or whatever, that, that this is a thing, and you’ll get the letter. Then you’ll get, about a week later you’ll get the test kit in a nice discrete envelope. And It’s not the most pleasant thing to have to do, but the importance of doing it cannot be overstated, because picking up anything in terms of cancer. Early as possible is key to better outcomes, so I would, you know, encourage everybody to, to respond to this as quickly as you can really, cause you only get follow up letters anyway, so you might as well do it sooner than later. So, the kit itself is basically gathering a sample of your poo, which is not pleasant and easy to do, but if you can forget the difficulties with it and the unpleasantness for a while, think about the benefits of doing it. You know it’s not that hard to do, and we’re very lucky in this country that our health service is free at the point of delivery, so there’s no charge for it. There’s even a free post little cardboard envelope to send it back in. So, what you will do, you will take a sample of your poo, which can be done in different ways. You can, you know, without going into too much detail now. You can collect it in the toilet on tissue paper, and you take the… I’ve got one in front of me, actually, but so I can. I can do the actions. So, you take a sample of your poo, a small sample on a stick. Which effectively goes then into a like a test tube type affair, but it’s kind of flat over-looking thing, which clicks closed, and then gets sent back. And it’s as simple as that. You just write your name on the sticker on it and send it back in the prepaid envelope. Job done, and then within a week or so, you’ll get a letter back telling you either, you’re clear there’s no problems to worry about. Or if there’s any follow up needed that will be arranged, as well. So, it’s very quick and efficient and I’ve done this myself, yes, I’m over 50. And so I can testify to how easy it is that’s relying on the fact that I am not visually impaired. Where I visually impaired, or, and/or had dexterity issues, it would not be as easy as that. Because you need to be able to see to do this test. If you’ve got low vision, there’s probably ways around it using the current. Kit, but because of the… effectively, could described as a health inequity, for visually impaired people based on some a lot of discussions with people, with lived experience that the rate of return of the kits amongst blind and partially sighted people, we think, and again we’ve not done any detailed research on response rates because the data is not really available, currently. But we think the rate of return from blind and partially sighted people for the FIT test is relatively low, so you know that means that you’re more likely than if you’re visually impaired, if that’s the case, to go on and develop symptoms, which we obviously don’t want people to do, and again, the problem with symptoms is you might not be able to spot the blood in your stool. So, it’s really important to do the screening when you get the opportunity. So, because of that, we have worked with our partners in RNIB, the Royal National Institute for the Blind, who many, many listeners will know of already and the NHS to work on something called FIT-aid, and this is a kit that is very similar to the existing FIT kits, but it comes with a few modifications that allow people with reduced vision and/or dexterity problems to carry out the test more easily, and I have a prototype in front of me. So, although you can’t see it, you know, I could describe it in detail. It’s different from the current kit, in that it has a flat tray where you can easily click on the stick into the test tube so it’s more easy to kind of… to do it cleanly without messing it up, there’s also, it also comes with a, what’s called a QR code which provides a link to a website or, and/or video and audio content as well. So, the idea is even if you can’t see, you can get verbal instructions on how to carry out the test and return it. And we think that we’ve just about to actually, Sam, to start testing, which I can talk about in a minute if you like.
Sam
Well, that’s… that all sounds really positive. And yeah it’s such an important issue to tackle, because you really don’t want people to be at a disadvantage because they can’t see that they have these bowel cancer symptoms, and you would have thought that actually a FIT test would be quite beneficial for people who are blind or have a… or partially sighted because of course they can’t see if there is like blood, that is, you know, visible to other people. If you’re partially sighted, you can’t see it anyway, so in theory a FIT test should help with that, but it’s no good at all if it’s not useful for people who are blind.
Eamonn Dunne
That’s right. And This is why we need to test it. Because we’ve got the people involved on the team that are looking at it. Some of them are visually impaired, some are completely blind. So, it’s very important that we have lived experience in forming this process, and also there are people with dexterity issues. So, we’ve got to the point we’re ready to test it in the real world, and over the next few months working with NHS local hubs across the country. People are being identified and it’s targeted them, but it sounds a bit sinister, doesn’t it? People be identified who are also at the age of ready for screening, but also that also are registered with a visual impairment, so they will be contacted and asked if they want to participate in. This trial and then they will get the FIT-aid kit with the adaptations and then we’ll test it in the live situation. Really. We’ll see how people find it and we’ll get some really good feedback. So, if we then need to change the kit at all or provide some differences in the communication strategy behind it, we’ll figure out something else because people will have ideas. You know, people with lived experiences come up with some brilliant ideas for fixing things because they’re living their daily lives like that, so you know they’re, they’re very inventive. So, once that trial has been carried out and we’ve got the feedback from it. The plan then is, to make sure that when someone reaches the age that they’re ready to… for a screening kit to be sent to them, their local GP will automatically, because the system will work this way, will be triggered to the fact that they have a visual impairment and then they will be sent the alternative kit instead. So that means that you know the overall mission with this is to get the numbers of. Response rates from the, the asymptomatic and the symptomatic return of the kits because it will be easier for people to do, and will create more awareness around it because what my fear is, that people get the letter which there’s been problems with NHS systems coordinating with each other. So, one of the things, the other things that we’re working on, which I’ll talk about a little bit later on. Is around the Accessible Information Standards. What that means is that people with communication needs other than the standard, you know, 14 font size letter that most people get. We’ll have their information on the NHS, computers and everywhere you go through the NHS or social care that information will be picked up and your communications will be sent in the format that you have chosen, that, that’s not there at the moment. So, you know, when the letter goes out initially telling people about, about the FIT test. It doesn’t pick up that knowledge, so everyone gets the same bog-standard letter. And so that’s something we need to fix as well, because there’s no good getting the letter if you can’t, you can’t see to tell you that if you want another format, please ask for it, cause you know it’s kind of a bit, of a catch 22, but that that’s what’s happening quite a lot across other areas of health as well, but that’s something that we’re as, as a sector, we’re looking at fixing as well.
Sam
I wonder if that’s an issue with language as well. If somebody received the letter in in English and it, it says in English. ‘If you need this letter in another language’, yeah, it’s probably not very useful.
Eamonn Dunne
No, it’s not. And again, you know the communications across all different need’s needs looking at. And they’ll be… the NHS have been, and they’ll admit this themselves, have been quite… they found it quite difficult to keep up with the needs, you know, things like automatic braille. So, if I say I need my letter in braille, for example, or I need my letter in Urdu, you know, I need to get that letter before the appointment, not after it, because it takes, you know, extra days cause you got to send out somewhere to get that printed, so we want, you know, either NHS organisation to have the capacity to produce those communication assets, or whatever, in this… the format people want, at the same time, as the standard box standard English size 14 font letter, or whatever, and, and again there are some of the digital exclusion issues as well, not assuming everyone’s got smartphone cause they haven’t, you know. So again, it’s making sure that people’s needs are recorded. So, there is a responsibility on the individual or patient, to tell the NHS or the GP what their needs are, and again you know that can be done everything when you go in for your an appointment or to drop a prescription off or whatever, you can speak to the receptionist and update your needs. And I think GPs are going to get better asking people for updated information. And the other problem that that can often happen is just that staff that are not particularly trained well on understanding the variety of different communication needs people have, whether it’s people with a learning disability, who need something an easy read or it’s Braille, or it’s a, you know, a different language altogether, and the people neither comes in. But as AI gets involved and start to be able to make things like that easier, making sure that these things are checked first for making sure they’re correct. But it’s… we should be able to do things more simultaneously than having to wait extra because it isn’t fair that someone has to wait, a longer time to get a letter about an appointment because there may be things they have to do in preparation for that, like fast, or take blood pressure readings or whatever it is that prep, because you know, people, all those people are turning up to appointments having not done the preparation that the letter, which they didn’t, you know, understand or couldn’t read, told them to do, and so it becomes a do not attend event, as the as the NHS call it. So as if the persons just not bothered to turn up, which obviously isn’t the case, and that currently is not monitored. So, we want them to monitor those sorts of administrative misadventures a bit more carefully so we can understand what the problem is.
Sam
So does it… That’s interesting about that ‘did not attend’ is that like a black mark against the person? Does that kind of count against them for future appointments or care or?
Eamonn Dunne
Well, not, I suppose technically it shouldn’t, depending on how often, how many times that happens. Different NHS bodies have different criteria, but it what it makes it look like is if the NHS is all tickety-boo, and it’s the patient’s fault, which masks the real problem. So, I mean, in another government we’re talking about introducing charges for, do not attend GP. If people do it three times, they get charged, that that’s not currently in as far as I know, but obviously that there are human rights issues and things like that to consider with that. But there is a… an incentive for people to, you know, to, to attend their appointments, cause there’s a perception and you know, speak to people. And they think ‘oh I haven’t showed up for an appointment, they won’t give me another one’, but not only that, does that, you know, create that impression, but it also creates a delay in in whatever the treatment is. Which and that delay could actually lead to kind of different health outcomes, worse health outcomes, because particularly with eye health, which I’m involved in, some conditions, if not treated early, can be irreversible or not, not treated at all. So, you know, we stress the urgency of getting things looked at quickly, and if the system is not helping with that. Then that’s something that we can fix.
Sam
Yeah. And again, just so, so important to carry out these, these FIT tests and to follow up with any symptoms. And I imagine it’s quite difficult as well because somebody who’s blind or partially sighted might be… might have things that they ask people to help with, like a close relative or something. But doing a dipstick in, in your poo might not be something that that people are comfortable asking for help with and I guess that can be another barrier as well.
Eamonn Dunne
Absolutely. And people live on their own as well. Haven’t even got the. The potential for that, but I think you know again it’s… one of those taboo subjects, is getting, people are getting better being able to talk about being embarrassed which is, having talked about this quite a lot. It seems silly now, but there are still people who feel you know that there’s a bit of a taboo, especially maybe people who are not used to sharing things like that, you know, people who feel they feel is undignified. But I mean, really, it shouldn’t. It’s just that, you know, it’s just, like, snubbed or something like that. Really, you think of it like that, you know, you wouldn’t be worried about that. So that’s what it is, you know, so that, that’s mostly been broken down. But just that, I know that, you know, when I got my FIT test, I was like, oh, God, I don’t really want to do that. But then I thought about it, and I thought, hang on, you know, this is something that I mean, offered free that could save my life. So why wouldn’t I? And then I thought about how difficult it is for those with limited dexterity and sight loss. I thought, you know, I thought shame on me for even thinking that this is difficult because, it’s not for me, but it could seem impossible for someone who can’t see. So, anything we’re doing around this, the FIT-aid test, anything we can do around, you know, helping family members to talk about this with their parents or partner, you know, cause that conversation it could be the hardest bit is to actually, you know, someone to say I need help with this because, you know, again, I’ve done it with my mother as well actually. So, I’ve got… Talking personal experience in terms of that side of things. I remember and it’s not pleasant, but I think it actually creates a bond in a way because, you know, is not comfortable. But if you get through that and it’s a good outcome, it’s like, you know, you’ve done something, you both didn’t find very easy, but has actually led to health, potentially health and improvement.
Sam
Yeah, no, definitely. And you mentioned dexterity there as well. So, the FIT-aid is, does that help people who have dexterity issues?
Eamonn Dunne
Yeah. I mean, dexterity issues come in all shapes and sizes. It could be, you know, arthritis, or it could be just, you know, an injury. Because you know, if you only got one hand if your hand’s damaged or, you know. There’s all sorts of depletions and all sorts of conditions that can lead to limited dexterity, but the FIT-aid, does help because it provides a kind of a there’s a… I wish I could show it to you on this podcast, but I’ll describe it so it’s a rectangular piece of plastic with a sort of through in the middle. Which is just the right size for the test tube bit that comes with it, so you can rest the test tube in the tray through and click it closed. There’s also a little stand to put it on as well, bit like some of the stands you would have got with the COVID test, that’s built into the tray and the tray has braille instructions on it. Well… braille instructions to show you how to get the other instructions cause we couldn’t fit full braille instructions on it, and also has the QR code with the… It’s a very big large picture about how you click the thing, you must click the test tube closes. So, I think once we’ve had the trial with people with lived experience, we’ll have a lot better idea about how well it works in the field. But we thinking. to get to this point, we’ve done quite a lot of research and user testing from our, you know, kind of pool of people within, our kind of realm now. But I think the real test is when it goes out through the screening hubs across the country and we get people to test it and get them in a variety of people with different eye conditions and different ages, different circumstances, to kind of give us their feedback on it, really.
Sam
What feedback has there been so far? What have people been saying?
Eamonn Dunne
I think generally speaking, there’s some kind of a… an impact from just discussing it really, because, I think again if you. If you could discuss this with people and, you know, you then start to talk about the importance of it. I think that’s half the battle sometimes, it’s like once you get that out in the open and you go through the sort of stages of it. People are more willing to do it anyway. And if you can provide them with a way that is easier than the standard kit… there’s generally been good feedback from people, you know, we did a feedback from people in Northumberland recently. Well, we didn’t do it. Our local sight loss charity called; Vision Northumberland did it, and there was some really good ideas on things like, you know, people who can see or have dexterity issues to change the colour of the actual stick itself. So, showing that where you know you need to get the poo up to this line. So, a more contrasting colour so that was just one idea that someone you know with lived experience came out with, it was actually quite a good idea. So, the response has been quite good, but I think we need to get, a true response or a more effective response. We need to know that several 100 people to test it across the country in different circumstances, so we can kind of look at the look at the results we get from that and just make sure that this is as good as it can be really. Is there any other improvements we can make to the kit itself or how we, or how, it is communicated to patients, you know, how this is going to happen, and just making sure that we pick on any of their pick up any of their adjustment needs. The added value of this, as well, gives people a chance to give information on what the needs they might have that they haven’t already done, so they’ll raise the awareness of the importance of making that, the NHS fully aware of having need that they have. Because you can’t blame the NHS for not responding to people’s needs if they don’t know about those needs. So… it picks up things at the moment that are currently logged on their system. But there are, maybe there are things which don’t fall under NHS code or have happened since you’ve last updated your requirements that have changed for you. Your sight might have deteriorated, your mobility might have deteriorated, so you might not be able to get out to appointments as easily, so the NHS needs to know these things. So, I would always advise people any opportunity that I have, to make sure your healthcare providers or be it GP’s or hospital if you’re currently under a hospital treatment plan, then just tell the reception person or the administrators that you discuss with, make sure they know about all your adjustment needs, you know, and that’s mental, physical, everything that you that would make your experience of healthcare or more pleasant or less unpleasant.
Sam
Yeah, that’s really good advice. So outside of the FIT test then is there any other aspect of bowel screening or that the general kind of bowel health pathway, are there, are there any other issues that are difficult for people who are blind or partially sighted? I’m thinking about like maybe procedures like colonoscopies and things or sort of General Hospital stays and that sort of stuff. What other issues are there?
Eamonn Dunne
I think the main issues, going back to the Accessibility Information Standards which is the NHS’s own standard to communicate with people in the way that they have specified, getting that right is like a foundation, and that that that will then help everything that flows from that. So, in order to get people, you know, they need to get to the hospital on or… cause, oftentimes hospitals change their layout, so someone with visual impairments might get used to a route. Once they’ve learned the route, provided it doesn’t change, there’s no obstacles in the way, they can independently, you know, quite easily follow that route and get to where they need to go. The problem is when that route changes or something changes the… maybe the clinic that they attend, or you know if they’re going to particular place within the hospital. It’s important to know that. Before you arrive. So, you know, either that could be through audio recordings to describe people roughly where their clinic is in relation to the hospital entrance. And there are all sorts of gizmos and apps now you can get that can help you get to where you need to be. If you’re tech savvy and you have a smartphone. So, there are route finders and that that kind of thing. Google Maps actually is quite good to get me to the building, but once you’re in the building, you know the internal map is not that good yet. And so even if you have got a smartphone, you might not be able to get to your clinic. So, having trained staff at the forefront of the hospital… administrator, porters, anybody who’s likely to… even cleaners actually, because they come into contact with people quite a lot. And to get to train those staff in how to interact with the visually impaired person, how to talk to someone because that’s when people feel a bit awkward, when they don’t know how to offer help. So, there’s basic things about, you know, using your voice and don’t use your gestures cause people can’t see necessarily, they might be able to see a bit, but don’t assume they can. And you know, turn to direct people with vocal instructions rather than visual ones. So, and the kind of general awareness about how to guide someone who’s visually impaired, because oftentimes you know someone might need to go into the bowels of the hospital as they were to access the care they need and, you know, even if you’ve got sight, it’s really hard to find this place sometimes to go. Through directs down green… The green wing, you know, 30 yards and then turn right, go up the stairs, you know that kind of thing?
Sam
Yeah…
So sometimes people, especially people who maybe got frailty issues as well, maybe they’re not necessarily on their feet. Will need to be guided so, having someone in the hospital, you know, front… front of house team, who knows how to guide and is available when the person needs it, because you know the ward will be alerted to that, because the patients record has that on it, so they’ll know there’s a need there. Then that can be pre planned and so the person can get to where they need to be because see the problem with, especially with people who’ve got heart conditions and high blood pressure, trying to find your way around the hospital just increases your stress, so it doesn’t help if you’re there for, you know, for cardiovascular or whatever to be more stressed. If you’ve got visual impairments as well, and that that’s the principle that we try and adopt at Thomas Pocklington, is if people are… they have sight conditions, but they’re also very much not just about their sight. They’ve got all the health conditions and other aspirations and needs. So how do we help those, the people and the service providers, whether it’s health, leisure, shopping, you know, all, all of those, the places that people go where they want to be as independent as they can. We need to make sure that the. Staff and the layout of those places is appropriate as well, so there’s not things in the way for people to trip on, like there’s awful yellow little triangle signs they put up and there was a wet floor kind of thing. I mean I Know why they do it, but because obviously impaired people no end of problems, you know.
Sam
Yeah, I can imagine. I’m just thinking about the scooters that are all over the roads these days as well or lying on pavements and things.
Eamonn Dunne
We’ve got a campaign for that one as well on our website, but yeah… makes streets accessible.
Sam
Oh, do you?
Eamonn Dunne
Yeah, there’s an awful lot of things that that people sometimes only willingly put in the way of people, literally, they make it very hard for them to navigate around, you know, so we might do all the training, all the… everything else. But if there’s a scooter in the way and you trip over it and break your, you know, bones whatever. Then that’s not an outcome that we want. So, we work with those providers with our, with our colleagues to make the world a bit safer, and more accessible really.
Sam
So yeah, really important work. And just thinking about hospitals as well, thinking about like the hospital stay, I guess is equally important for communicating with people and I when we talked last before recording, we were we were talking about somebody staying in a hospital and they might hear somebody nearby but not be able to see them and they might think ‘oh Is that is that a doctor? Have they come to tell me something? Have they come to do something to me’ and it’s maybe it’s just a cleaner or something… But, but you don’t know and then that’s just must be massively increased anxiety because you can’t tell what’s happening.
Eamonn Dunne
It certainly does, and it can result in a, you know, a poor health outcome because it could be so simple as not being able to, read the menu for the lunch, and maybe if they’ve got a dietary need. They’d rather not eat anything than eat the wrong thing because they could have serious side effects, and that’s where the information stamp again comes in. Because if the ward manager or the person responsible for that patient’s care is made aware that that person’s got particular needs for their, you know, they’ve got no sight, they’ve got some sight, they need information in a particular font size or whatever. Then they can then set that care plan up for that person on the board so that all staff, will have some kind of awareness as well. So, from the cleaner, the person looking after the lunches, the healthcare assistants, the nurses, the doctors, the myriad people that are porters that come in contact with the patient in the hospital, one interesting very simple solution that… in Liverpool That the eye clinic liaison officer came up with, who’s someone who helps people connect with services in the community if they’ve got an eye problem. She came with this idea that when someone was flagged as having a visual impairment, was admitted to one of the wards. The other wards in the hospital she would be alerted and she would go up and just have a quick chat with her with her care manager and make sure that the charts that, that person when they were… things that you write on which are becoming increasingly rare cause, you know, notepads and things like that. iPads and things like that being used more, but any kind of… any kind of person that would come into contact with that person who has a visual impairment, would be alerted to that fact. Either physically with a sticker or some other way so that you know everybody from the cleaner onwards, would know to kind of talk to that person and say hello I’m the cleaning person, and my name such and such, and I’m just doing this so that, you know, firstly if you’re an isolated ward in your own that, like you say, when someone just opens the door and comes in and goes ‘hello!’ You know, is it a, you know, is it a cleaner? Is it a, you know, ophthalmologist? Is it a… you don’t know who it is, so announcing yourself. Very simple principle like that, you know, are the key to really opening that communication and not and putting that patient less… More or less at ease, I suppose you could say, and just understanding the visual clues don’t work so think about how you would adopt, adapt rather, your practise to take account of that fact.
Sam
All of these accessibility issues are kind of everybody’s, they should be, everybody’s problem really, shouldn’t they? Because I mean, no matter who you are, you don’t know when you might come into contact with somebody who has different needs to you and, you know, people might think, well, I’ve I’m not… I’m not blind. I’m not in a wheelchair. I’m not autistic or whatever it might be, you know, accessibility needs don’t apply to me, but actually particularly thinking about health and as people get older, like, you don’t really know what’s going to happen to you in in the future. You know, it could very well be your personal problems. I, you know, I think it is something like for ourselves and for other people that we should all be, we should be aware of.
Eamonn Dunne
Yeah. And I think whether it’s, you know, your mother, your father, your aunt, your uncle, your grandma, you know, someone in your family you know, or yourself, sooner or later, you know, will probably develop some kind of eye problem, if you live long enough you certainly will, because, you know, there are conditions like cataracts or glaucoma, and macular degeneration, which largely affect older people. In fact, 80% of people that we are, you know, we kind of categorised as having sight loss are over 65. So, you know it’s going to happen if you live long enough, but it’s good to be prepared for that. And also, for your family, because I know at the moment my mother is visually impaired and her sight is recently deteriorated and I’ve been the one in the family that’s kind of, you know, figured out what we’re going to do about that because she lives in a different city to the rest of us. So how do we arrange that care, you know, and even until it’s too late until it happens, put you on the back foot a little bit and you know you got to then rush to get services in place. So just to have an eye for. You know as to be aware of how you would deal with that with your family member did start to lose their sight. And we do a lot of resources on our on our website. One is called what do we see? which using augmented reality. where it’s basically putting a camera on someone’s head, but it sort of shows somewhat travelling around their daily environments. You know the on a bus and shop in the office and it does. It shows about 6 conditions, common conditions. What is like to see when you’ve got that condition? through, you know, clever wizardry. But it’s and it’s changed over time. How that could deteriorate as well. So, if you’ve got macular degeneration, which is a common condition for older people, it’s even called age-related macular degeneration. Then, you know, it can start off not too bad and you can see, you know, just a little bit, you lose some of your vision, but if it gets worse and progresses, then it can get quite, you know, quite a lot worse. So, it’s good to see how it might progress for someone, it’s only an approximation, so not everyone’s going to have. The same experience, but it does show family members and friends children maybe if their parents are visually impaired, what it’s like for them with that limited vision, how they actually see so they can then be more attuned to, you know, how to manage that, to manage the household or whatever, to take account of the fact that people have either got maybe no central vision, or no peripheral vision, so that they can’t see side to side so that you need to not put things in the way because they won’t necessarily see it, and could trip and fall, so those videos are really good. We do want for common children’s conditions as well, which has been really popular with parents and teachers and others other workers in schools so that they can sort of have some kind of indication of what that child is actually having problems with in terms of seeing and what adjustments that they can make to help that child, involving the classmates as well, because they can take part, you know, they’re more tuned, to be more empathetic with the person because they’ll have some idea of that… because everyone’s bit shocked when first when they put these, we’ve got these specs which are glasses that you put on which, show, simulate various conditions and you try and walk around. And it’s quite a shock, actually, when you’ve never done that before and it and it really does bring home to you how limiting having reduced vision is and how completely different your life is from that, but it’s a really kind of humbling experience, actually.
Sam
Have you or has anybody had a look at a FIT test with that sort of using that Kind of?
Eamonn Dunne
We, we’ve tried that out and it’s impossible. And then, You know, people with vision impairments are generally very, very resilient and very used to having to find ways around, because as human beings, you know very were very adaptable. You know, there is a serious emotional impact of sight loss, which I can’t state, and people need to be offered support with that because, you know, the impact of losing your sight is profound. In fact, every aspect of your life… driving is one ,biggie, but just being able to kind of, you know, do your hobbies like knitting or line dancing even, so mum does… you know, those things can be life changing for people and the and the clinicians who work in eye health might not be aware of those, how important some of those things are to your life. So, you know, you don’t necessarily need to know all the ins and out of your medical condition. You know, you might want to do that. That’s great, but it’s what impact it has on your life that really matters not the thing itself. So yeah, as long as I can still do this, this and this, and I can have these tools to help me get around and you know, I’ve got this support with that and learning how to use a weight cane, for example. You know that those sorts of things are. Essential for people to adapt to life with reduced vision. But a lot of people aren’t able to or don’t have access those services, so they become isolated and they’re liable to become very depressed, which is understandable. And then you know, it’s harder to recover from a position like that. So, we’re really keen to, to reach out to people where we can and, you know, refer them to local support where it exists and make sure they take advantage of that.
Sam
Yeah, I think that’s yeah. Sounds like really important work that you that you’re doing and the whole topic of accessibility and everybody’s individual needs is just so huge. I think we could talk about it all day, but yeah, just to swing back to, to FIT test for me, one thing that’s stood out for me while we started talking was. But yeah, it’s not the most pleasant thing to do, but as you kind of alluded to that there’s far more worse things to do. I mean, I’ve had bowel cancer. I’ve had my bowel removed, you know, even going for a colonoscopy, having a bowel removed, having a stoma, having the stoma then reversed. Potentially some things that could be avoided if cancer is caught early. So, yeah, extremely important topic and yeah there’s. A lot worse and more unpleasant things that you can do than FIT test.
Eamonn Dunne
And if we can help, you know, even one person who wasn’t going to do the FIT test because he couldn’t do it or didn’t want to do it. And you know, one early detection of cancer cells has picked up then that’s enough really because that’s one person who’s had been hopefully been spared. You know, what could be a whole lot of worse outcome, so I think that that’s a motivation to keep banging this drum, certainly.
Sam
Brilliant, and so just one final question for you to kind of end on then. So, what one takeaway would you like people to know about bowel screening and visually impairment? kind of to leave people with.
Eamonn Dunne
Yeah, I guess it’s like, don’t feel overwhelmed when you get asked to do it and if. And reach out and ask for help, there are… speak to GP obviously is one way, but there are there are lots of… and as this kit gets more publicity when it’s properly launched, then there will be a better way for you to get help. Some people will still struggle, with it and you know and I guess. The screening process is, is continually looking for ways to do this better or more easily for people because prevention is always better than cure, and for the NHS it’s a lot cheaper as well. I have to say so, that’s a motivation. Don’t be, don’t feel overwhelmed by it. Don’t think you can’t participate. You have a right under the Human Rights Act and the Equality Act to have the same care and healthcare as everybody else. And so, if you are struggling because of something that and you can’t do it then, that’s not fair. So, you know, advocate for yourself, really encourage people to do that, you should, you have the right to have a test. And if you find it more difficult because of circumstances beyond your control, that’s not your fault. So, you should be helped.
Sam
Great. Eamonn Thank you so much for coming to talk to me today. It’s been really interesting discussion. Thank you.
Eamonn Dunne
Thanks Sam, it’s been good. Yeah. Thanks. Bye.
Sam Alexandra Rose
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