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TITLE: Presentation 4 Elizabeth Wick
DATE: 19th February 2017
NUMBER OF SPEAKERS: 1 Numbers Speakers
TRANSCRIPT STYLE: Intelligent Verbatim
FILE DURATION: 21 Minutes 18 Sec
TRANSCRIPTIONIST: Marg Searing
SPEAKERS
EW: Elizabeth Wick
Audience
GP Eye Health Network: The Patient Perspective and top tips for GPs, Elizabeth Wick
EW: Well thank you everybody. And thank you particularly to the RNIB for inviting me to talk here today. I feel very privileged to come and talk to a group of hard working GPs. I do know how hard you work. My former life is as a Practice Manager in a GP surgery. I worked there for almost 17 years. So, I know how hard you work and that you give up your days to come on study days like this and the impact it does have when you go back to the surgery.
So, as I say, I am very grateful to be able to talk to you as a captive audience and talk to you particularly as a patient and especially as a visually impaired patient.
My name is Liz and when I was 26, I had an accident in my left eye which completely knocked out all of my central vision. I just see very peripherally in my left eye. I have a very ragged scar. And at that point, there was really, no treatment available to me. Then when I was 40 I was told that I had AMD. Who knows what AMD is?
[unclear audience members’ respond 00:01:12]
EW: Good. Who knows what the classic signs are of AMD?
[unclear audience members’ respond 00:01:19]
EW: And what is it before it gets to that?
[unclear audience members’ respond 00:01:25]
EW: Exactly. So, what your patients may come to you with is, I can’t see a straight line anymore, it’s got a wiggle in it. So, noticed this wiggle in my straight lines. And rather than coming to my GP, I actually, went first of all to my opticians. So, I bypassed the surgery at that point. And my option was really on the ball and got me sent up straightaway to the eye casualty. I come from Sheffield and there’s a superb eye casualty and ophthalmic clinic there and I was seen in the clinic.
At the point, I just had the wiggly lines. And basically, they just said, we will monitor you, go away and we will keep an eye on you.
Two weeks later, I was sat at home alone, about half past ten in the evening and something massive and extraordinary happened to my right eye of which I had no understanding of what had happened other than my vision had completely and utterly become distorted. I was so, so, frightened.
That then began my journey in secondary care through investigations and treatment and I had at that point, it was something called photodynamic laser therapy treatment. And then later, on about five years later, I then had to have the eye injections which have been touched upon earlier on this morning. They aren’t pleasant, I have, to say.
If any of your patients do come to you and they are anxious before the onset of their treatment, please try and support them as best as you can. It’s a very frightening and upsetting experience to have to go through. There are lots of support agencies available to you to pass them on to. The RNIB, the Macular Society, they have great support. And they can literally, tell your patients what to expect if you don’t know that yourselves.
Anyway, getting back. So, my first encounter with my GP after about a month, because as I say, two weeks had elapsed from my wiggly eye to the massive haemorrhage that I subsequently had. And I couldn’t see. I couldn’t work. I was a Practice Manager in my surgery and I couldn’t see anything, I couldn’t work. I had to go and get a sick note for work.
The sick note said, going blind. Two words that devastated me. Absolutely, traumatised me. Was I going blind? Nobody had said that to me. Nobody. I was absolutely horrified. I can’t tell you the damage that that did to me. It was horrible. So, please, be conscious and careful of the words and the language that you use with your patients. I do still find that really quiet upsetting to just relive that particular moment.
My GP wrote on that because of a lack of education I suppose really and just not knowing. It made me very anxious and it made me want to try and carry on but I was very, very worried and concerned about what my life and my outcome would be.
You all work in a GP surgery and I’m sure you have your list of patients who are asthmatic, your list of patients who are diabetic. You have registers for your learning disability patients. Do you have a register of patients with a sensory impairment? No.
I would urge you to know your patients. I don’t know whether you come from large practice or small practice. But even so, that really shouldn’t matter too much. Know your patients. There will be certainly within an older age population a huge number, probably surprising number of patients who will have either diagnosed macular degeneration or undiagnosed.
So, ask, ask your patients. Do it opportunistically. You’ve just gone through your flu season where you’ve had all your elderly patients in. Do your nurses know something about that patient that you perhaps don’t know? Do your reception staff know that somebody always comes and they’ve always got somebody and they’re always sort of conscious of corners. Little things that might give tell-tale signs that somebody can’t quite see properly. Know your patients. Read code them.
When I was a manager we had a read code: bitten by a tiger. There was one. [laughing]. One bitten by a tiger. How many could there be read coded: visually impaired, that you’re not knowing about.
So, central vision loss is frightening and it can lead to depression and the quality of life that we all have can suffer. Barriers and difficulties to performing everyday tasks suddenly appear and they have to be thought about and ways worked around in order to overcome them.
Hopefully, this is my opportunity to give you some tips as to how those barriers can be overcome in your GP setting. So, as I’ve said, know your patients. Read code them, create some sort of a register. Know who your patients are. Get your staff to be aware. I’m sure the reception staff are the all-seeing allknowing within your surgeries. They probably know a lot more about the patients than perhaps you might do.
Thinking about your waiting room and the layout of your waiting room. How accessible is that for your patients? Do you have an area where you’ve got toys? Is it just kept to one side or by the end of the morning’s surgery has it all over spilled and is strewn around the floor? What is your chairing like? What are the seating arrangements like? Are you in rows like this? Is it just all dotted around? These things are troublesome to a visually impaired person. We don’t see quite as easily as you do. If somebody’s bag has been left on the floor, you know chances are we may not see that.
So, think about the seating that you have and the layout. Think about the lighting. The lighting is particularly important in your surgery both inside and outside. This time of year, it’s dark. The nights are fortunately pulling out a little bit. But end of November, December, when it’s dark at three, quarter past three in the afternoon and it doesn’t get light till maybe gone nine o’clock in the morning. If patients are fortunate to have somebody who will bring them in a car, is your car park well lit? Is it strewn with potholes? Once you get into the surgery, again is the lighting good?
Part of my role is also, I’m a CQC Specialist Advisor and I have gone around lots and lots of different practices. Some of them have mood lighting to calm the patients. That’s great, but I can’t see a thing. It’s too dark. Think about the lighting it’s incredibly important to us as a visually impaired person. We need good light.
Think about the flooring that you have. Again, I know your practices and your premises may be very different from each other. Some might be in a brand spanking new purpose built building, others may be in a converted house. Think about the flooring that you have. Is it old worn and tattered and everybody knows that there’s a bit of a tear there, so you all steer clear of it or it’s been you know, masked down. If there are lumps in it. Are there any stairs going up? Maybe even one or two stairs, you know, from different levels. Is it well lit? What is the carpet like?
How about your walls and your decorating, your decorations that you have? Walking from the waiting room, down to the consulting rooms, how … what sort of signage have you got? Is it clearly signed, oh, yes, it’s your name on the door. Can I see your name? Maybe not. Do you have it in Braille? Possibly. Think about also having colour blocks. You know it’s far easier for me to see a red square on a door or a purple triangle or a blue circle. So, your receptionist will say, go down to the blue circle door and that is far, far easier for me to see than go to Mr … Dr Smith’s room.
These are all things that are really, quite practical things for you to consider. As I say, the lighting for me is particularly, important.
How do your patients check in at your surgery? Is it one of these touch screens? Do they all have to do that? Do you have a manned reception desk anymore? Some practices don’t. Some practices I’ve been in, they don’t have anybody on their reception desk. What do your visually impaired patients do then?
So, always be prepared to make exceptions. We’re not all the same, think about that, you know. I may not have either the confidence or the visual ability to actually, see to do one of those screens. So, have your reception team clued up as well to the fact that I may be coming along and I need help.
How are your patients called from the waiting room? Do you use a JX board? Can your patients see that JX board? Do you make any exceptions? Should you have to make exceptions for me? Should I be an exception? Do you come and call your patients from your room? Do you stand at your room?
These are all questions that I want you to have in your head to go back with and think about. These are all important things to me as I’m making the journey from the reception area down to your consulting room so that I can get to you safely.
When I go down your corridor, is the door frame, re the door frames distinguishable from the actual walls? Can I see that I am approaching a door? Simple, simple things that make a huge difference to us with a visual impairment.
When I’m sat in the waiting room, can I see the same amount of information that a patient without a visual impairment can see? Do I have to ask for it in a larger font size? Is it readily available for me? Do I have to ask for the practice leaflet in a large size? Why isn’t it there on the side waiting for me just to pick up? Why do I have to feel that I am the exception?
I hope some of you may have a patient participation group. They come in different names, different guises. The basis of which is that you have a group of patients and periodically you hopefully, all talk together and you might consider changes and you may consider making amendments to policies, protocols and even physical changes to your premises. Is there anybody on your group with a sensory impairment? Do you know anybody in your practice with a sensory impairment? These are things to think about and consider.
Your appointment systems. Whoa! The bane of every GP practice that’s not, it’s a big, big area, isn’t it? Getting the right amount of appointments at the right time for everybody. It’s not easy. But as I touched upon earlier on, as a visually impaired person, my hours of working and visiting and going out in this particular, time of year are far more restricted, constricted. So, if I were to ring up and say, can I have an appointment and you say, oh, yes, there’s one at twenty past five in the evening, that would pose real problems for me. I would need somebody to come with me which isn’t always, you know, I’m not always able to do that. I’d have to get on and off public transport in the dark which isn’t great. So, you simply saying to me, come at twenty past five really isn’t a great … a great slot for me.
So, again, think about that. These are the kind of barriers that we have, to face. Going out in the dark, alone is frightening. Not knowing where your foot is going is frightening.
I have fallen several times. And not just in the dark. And falling certainly as an older person, isn’t great. I fell in June and I broke my ankle and it wasn’t good. So, as I say, falling is a real, worry for people with visual impairments.
If you need to contact me, how do you go about doing it? Well hopefully, you might consider phoning me. You might consider emailing me, or texting me. But if you have, to send out a letter to me how might you do that? Would you consider asking your secretaries, your admin team to type it in a larger font size? Would you consider putting that letter on a piece of yellow paper for me rather than white paper because I see better black on yellow rather than black on white. Little things that make a huge difference. Increasing the font size two or three times makes all the difference. Why should I have to give that piece of paper to somebody else to read? I’m not stupid, I can read a letter, I just need it to be in a slightly bigger font.
So, consider these things next time you’re doing any kind of recalls or you’re needing people to come in. That’s to what I said again, read code your patients. Ask them, would you be offended if I sent you a letter in a larger font size Mrs Smith? I know that you’re visually impaired, would it help if I did it on a yellow piece of paper with the font size a bit bigger? I am sure you would have a positive reply to that.