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TRANSCRIPTION CITY TYPING SERVICES httPD://www.transcriptioncity.co.uk [email protected] 0208 816 8584 TITLE: Presentation 8 Mr S El Sherbiny DATE: 21st February 2017 NUMBER OF SPEAKERS: 1 Numbers Speakers TRANSCRIPT STYLE: Intelligent Verbatim FILE DURATION: 32 Minutes 04 Sec TRANSCRIPTIONIST: Marg Searing SPEAKERS SS: Mr S El Sherbiny A1:/A2 etc - Audience members 1 httPD://www.transcriptioncity.co.uk

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TRANSCRIPTION CITY TYPING SERVICEShttPD://[email protected] 816 8584

TITLE: Presentation 8 Mr S El SherbinyDATE: 21st February 2017NUMBER OF SPEAKERS: 1 Numbers SpeakersTRANSCRIPT STYLE: Intelligent VerbatimFILE DURATION: 32 Minutes 04 SecTRANSCRIPTIONIST: Marg Searing

SPEAKERS

SS: Mr S El SherbinyA1:/A2 etc - Audience members

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GP Eye Health Network: Age-related Macular Degeneration, Mr El-Sherbiny

SS: I’ve divided the talk into 60-75 per cent on, I’m in the clinic what should I do with this patient and perhaps 15, 20, 25 per cent of what are we going to do about the challenge of numbers that we’ve got with eye health.

There are lots of ologies that come to your practices or that you’re happy dealing with. Rheumatology, cardiology, endocrinology, gynaecology, paediatrics doesn’t fit in the ologies, but all of you are very confident in dealing with that.

And one of the reasons that I believe that the Royal College of GPs actually, appointed an Eye Health Champion is because eye health is becoming a problem and it’s an ology that doesn’t take very well in to the community.

So, even though GPwSIs as a concept has been around for a long time, there aren’t many ophthalmic GPwSIs. There’s one that I know of in Nuneaton and there’s a primary care practice that has a major project in Oxfordshire, the details of which I might share with you at a later point in time.

So, if I can have the lights down just a fraction please?

Again, you’ve got eight, possibly ten, maybe fifteen at a stretch, minutes to take the history, examine the patient, jot something down and do whatever else. For the rest of the morning, you’ve got your mid-morning sessions and then you’ve got domiciliary visits and then your afternoon/evening clinics.

So, dilating a patient that takes 10 to 15 minutes to dilate and then using a gadget that you don’t use very often. And then make, a decision may be asking too much of already busy people.

But for the sake of referencing, a dilated fundus will look like this and the macular anatomically, is the area that is the imaginary circle that links the vascular arcades, the centre of which is the fovea.

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So, really, when we are talking about macular degeneration we are not talking about all of this, but we’re actually, referring specifically to the centre of the macular which is the fovea. And that at best is 500 microns in diameter and it is what sees all the detail which is why disproportionally, very little affects it to give a lot of symptoms.

Essentially, age-related macular degeneration is an age-related process which is broken down in to very complex sub-processes where genetics plays a part, inflammation plays a part, tissue attrition plays a part, just to name the three salient ones.

From a practical point of view, in terms of therapeutics, it’s divided in to dry and wet. The analogy that I use with my patients is that if you imagine that your eye is a room in a house that’s become very, very old, the wallpaper becoming tatty and the plaster falling off with no damp, is dry macular degeneration. So, the wallpaper is fraying away. And then if it springs a leak and there is a damp patch, that’s your wet macular degeneration.

It’s amazing that with all the information that’s out there, how overwhelmed people can be, in terms of understanding the disease process. So, we still have people think that cataracts are a film that grows on the surface of the eye that you just peel off with a laser process.

So, this is the analogy that I use for dry and wet macular degeneration if you’re thinking of explaining it to your patients.

And these are a couple of examples of dry aging change, where you’ve got proteinaceous deposits within the area there that may be completely asymptomatic from a functional point of view, but have a bearing on therapeutics which I’ll back to. Or, you have perhaps, a slightly more, symptomatic fraying and death of tissue. So, you’ve atrophy revealing the choroidal level underneath the retina.

So, if you think of the wall of the eyes, the three layers of the retina, the choroid and the sclera, that the paler parts appear. Because the retinal pigment epithelium, which as the name says, carries the pigment that is very important for physiological function and normal physiology, wears thin enough to bare the underlying choroid and sclera.

If we take a schematic chunk out of the wall of the eye, this is what it should normally look like at the macular. You’ve got the choroidal

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vessels. You’ve got an intervening layer of pigment. And then you’ve got the retina above it.

And what happens in wet age-related macular degeneration, is a, number of processes that result in the breach of the sanctity of the layers between the very vascular choroid and the otherwise water tight underside of the retina. So, you get this damp layer within the lining of the eye which gives a, number of manifestations that essentially, are either exudates, blood of which there isn’t much in this picture, or, fluid which we see as leakage on dynamic testing. I’ll show you a couple of examples later on.

The thing about this as far as history is concerned is, anything macular will give similar symptoms as far as the patient is concerned. The difficulty is, deciding whether this patient here’s got a macular problem because of diabetic change, a vein occlusion, wet macular degeneration or something less common. Because if it’s affecting the macular, it’ll be the same thing.

So, in principle, dealing with an ophthalmic patient still relies on you taking a history, doing an examination and guiding the patient accordingly, depending on those, with the history really, being the thing that we tend to neglect most.

So, this will fit in with what I’ll have to say at the end of the talk. But essentially, the numbers are very, very frightening for two reasons.

One is, the enormity of the problem became worse, ironically, when treatment became available. So, in 2003, if I had seen a patient with wet macular degeneration I would have been at a point where I was selecting a particular, sub-type where we could offer them laser treatment once every three months and apologising to all of the others, that there is no treatment available.

Now, we have all sub-types being treated with a, number of treatments and coming at, sometimes, monthly visits for up to 7-8 years. So, we’ve got a lot of patients.

On a national scale, this is actually, set to get worse if, as I heard on a mandatory training session about the number of people over the age of 65 being approximately 25% of the UK population by 2034, yesterday.

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So, each of these 450 new patients is likely to visit us between 7 and 12 times a year, for 5 to 7 years after their diagnosis.

So, we started off with a handful of patients, perhaps three to four hundred. We’ve got about, within the period of five years, three to four thousand patients and these are the ones having injections. We’re not even talking about the ones that are having extended monitoring visits. And these are just the age-related macular degeneration patients. It’s not the diabetics and not the vein occlusion patients.

So, this is, why it’s important to see if we can do things outside secondary care because it’s not going to carry on very much as it is.

In … from a conceptual point of a view, what do I do, is how I try to imagine giving this talk. I’m in my surgery. I’m a GP. I’ve got 25 patients to see and I’ve got three hours so see them, or, whatever the situation manages to be. To, me this is the crucial point. So, a history of, it can be very, very vague and becomes a bit more specific.

Blurring of vision, very vague, could be anything. Can be resolved perhaps by seeing the option. The opticians use the slit lamp, they get a little bit more in the way of clinical signs and they’re a bit more in touch with us on a, daily basis, so they can … So, that’s an appropriate thing.

Other phrases to look for are, the words are merging in to each other, or, dropping letters as I look at the words. The buzz word is, the door frame has become kinked, or when I look at the window sill there’s a bend. Distortion, metamorphopsia, is very characteristic of macular problems. Particularly, if it happens within it’s happened two or three days ago, and it hasn’t gone away.

The key thing about all, of the macular patients, whether it’s a retinal detachment, wet macular degeneration, a vascular occlusion, is that it’s painless. Pain is a very strong prompt. And this is why you’ve got people with a tiny bit of grit, or a small corneal abrasion raising all hell because they’re in so much pain because that’s a, pain equals danger, I need help.

A lot of patients with macular problems don’t seek help because they’ll sleep it off. Feeling under the weather. Had a bad day. Because it’s painless. So, distortion is a very strong indication that there’s a macular problem. But, the flip side of that is, they don’t have to go there and

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then. And I’ll come back to that in a second. But just echoing Mr Lett’s WRAG system.

So, macular problems generally, have got a bit of grace period of days. And this is, why we’ve set up the Macular Fast Track service.

How many of you have a Snellen chart or access to one in your surgeries? Okay, that’s actually, more than I expected. The other option is, if you’ve got a copy of the Oxford handbook, there’s a reduced version in that. And then we all have something, you know, that has a digital version of everything medical, usually, whether it’s an [laughing] ECG machine or a temperature or, something that does something.

I was talking to a patient who’s partner or spouse, had a device that measured here HBA1C through some kind, of Bluetooth band that was very, very expensive. And I’m sure it was. But it saved here having to have her finger pricked three times a day.

So, there are gadget … sorry, apps that will offer you both that as well as the blue light, the fluorescent if you can’t find your ophthalmoscope cos you last used it about three months ago, and the batter wasn’t working anyway. [laughing]. So, does that sound familiar?

A1: No.

[laughing]

SS: Okay. The rest of this is hospital based stuff. But I’ll come back to this in, particular. Cos I’m sure you’ll have come across the word, optical coherence, or ocular coherence tomography, or optical coherence tomography, or OCT. And that has really, revolutionised how we deal with retinal work. And the reason this is an important bit of kit is because it’s … there’s no reason why it can’t be based in the primary healthcare setting. Indeed, a lot of optometrists actually, are buying it. The reason not more of them are being it is because it is expensive. But we’ll come back to that.

But that has been a cornerstone in enhancing what we’ve got to offer and that has just attracted more work. So, you’ve got this increase in therapeutics, improved diagnostics and therefore, not surprisingly, perhaps, a lot more patients.

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So, this is just to show you, you can have this Snellen chart. Any, idea what this might be used for?

[unclear audience 00:11:49]

SS: It literally says, it’s actually called: ‘the illiterate e-chart’. So, if you’ve somebody who is illiterate or non-English speaking, you can use this and ask them to point to the letters or you can give them letter E and they will orientate it as you point down the chart.But for those of you who haven’t got access to a Snellen chart and are unlikely to get one and don’t want the app, you’ve got another readily available tool for objectivising the visual measure. And that’s a near visual chart. So, they will hold it at 40 to 30/40 to 50 centimetres and they’ll cover one eye. And then you’ve got some objective measure which is better than nothing.

In terms of just benchmarking how they were when you’ve referred them or when you’ve seen them or if you’re following them up. Just an objective measure. Bearing in mind that this is not quality of vision. This is just one way of measuring vision.

Some of you may have come across this. The Amsier Grid is something that was devised using the physiology of the retina and essentially, it should be a black sheet with a white grid. What people use more commonly, and perhaps erroneously, is the recording chart. But this is a way of trying to, somehow, quantify distortion.

So, if somebody comes in says, that the door frame has become kinked, well how do you measure that? You can’t. This is the next best thing.

The problem that some people, including myself, have with this is that it’s associated with a high false positive rate. So, if you ask the person to cover the eye, hold this at reading distance, you don’t have to stick to 40 or 5, just a comfortable reading distance. And then you ask them to look at the spot and to describe to you whether anything is missing or if the grid distorted in anyway. Optometrists rely on this, perhaps, a bit too much. But it’s another readily available, quick tool, you might have easily in your consulting rooms.

Now, when we move on to the hospital setting, it used to be the case that a lot of people, in fact, most people, would have fluorescein angiography. So, in principle, it’s angiography. You use a dye, you inject it in to a vein. It travels in to the circulation and we just take our

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photographs of how it flows within the retinal circulation predominantly with the choroidal circulation underneath.

So, this is just an example of leakage where there is an active neovascular member that’s growing from underneath the retina.

This is an example of optical coherence tomography and essentially, what the machine does with light, is what ultrasound does with sound. So, somebody in the late 80s, early 90s had the idea and was, able to demonstrate that you can bounce light off a reflective surface and catch light. The reason it wasn’t possible before, it was the difference of speed between sound and light. But when it did become possible, having been initially pooh-poohed that it was a useless thing, there’s no eye clinic, certainly not in the western hemisphere anyway, without one if you’re looking at the retina.

Not only that, it’s got applications in dermatology, gastro, cardiology. And as far as the eye is concerned it’s expanded so much, you can take an image of the whole of the eye. And there are prototype devices that are being tried now, to actually, add other things.

So, the person would look down the device and you would measure their visual acuity, pressure, take a scan of the whole eye and much, much more. So, coming to a practice near you soon, will be one of these [laughing], I appreciate. And there’s actually, a portable version for paediatrics now as well. It’s an amazing piece of kit. And all it does is it optically takes a chunk and gives you a histological equivalent slide of the retina, all it’s layers.

Now we’ve got machines that can decipher the choroid and its correlation to all sorts of things. And one of the areas of interest that I hope to be publishing soon, is its use in systemic disease. So, diagnosing or monitoring the treatment for MS for example. Early signs of Parkinson’s and dementia. The retina is a bit of the brain. Anyway, I’ll just wet, your appetite for that.

Now what do I do with this patient? So, this patient is actually, sitting in front of me, they are complaining of distortion, what do I do with them. So, I’ve put prevention cos, you know, of this primary care audience, prevention. [laughing]. But I’ll come back to it. I thought you’d like that. [laughing]

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So, treatment starts with, how do I, from a primary care setting, I’ve decided this is a macular problem, how am I going to refer them. So, again, dovetailing with Mr Lett’s talk. When, Lucentis first became available, Ranibizumab, one of the problems was how quickly the patients would get in to the system, the hospital system. And Novartis at the time, devised a Fast Track Referral form.

Now at the end of the talk, and I’m happy for the talk to be distributed to any of you who want it, I’ve put some references of pdfs and some things that may be of relevance to you at the very end.

The optometrist will complete filling in this form and they will fax it through and this is one of the things that we want to get rid of. We want it to be emailed through. But there’s no reason, why you can’t have these forms as well. Because instead of sending the patient to casualty, I think we have got, I think the last audit we did of our Macular Fast Track Referral service, between 90 and 95 per cent were offered an appointment within the first two to three weeks.

The same with the Retinal Vein Occlusion service. So, it’s well worth knowing this. And this is actually, on the Royal College of Ophthalmologists website as a pdf and the reference is at the end of the talk.

The macular is relatively forgiving in that treatment started within the first four, perhaps six weeks, can still offer the same gains or stabilisation as if it were started today. Very few people, actually are referred and get the treatment on the same day. Those who do get treatment from the point that they’re seen, within two weeks of referral, usually receive it within two to four weeks and they still achieve the same gains compared to the pivotal studies that looked at this.

From that point onwards, really, is really, what we end up doing. Again, no reason why an injection room can’t be set up. I’m sure you’ve got minor ops rooms in many of your practices. And it’s not actually, a new thing. There have been practices in primary care settings where injections are actually, carried out.

The problem is setting it up and running it. And compared to optometric practices, GP practices actually, comply with all the NHS governance requirements. The problem with optometric practices is, they might comply to some degree with some of them which is why things haven’t moved on, certainly not in the West Midlands anyway.

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The mainstay of treatment unfortunately involves intravitreal injection. So, you inject something in to the eye repeatedly. There’s a lot of work that’s actually, going in to trying to reduce the number of injections but I’ll come back to that in a little while.

It’s difficult to say at the beginning how many injections any one particular, patient would need and over how long. So, the thing that makes me laugh, every time I see it, but it’s a template, so it’s not actually something that you consciously do for every patient that you refer to the eye clinic. It’s this business of, can you please refer the patient back to primary care after two visits. No, because there is nowhere to refer them, unfortunately.

Any idea, what the new to follow ratio for glaucoma, diabetes or diabetic retinopathy or macular degeneration is? Have a guess. One to what? Pick a number, any number. They do. Okay. So, this is published actually, as part of a study, that was carried out by the Royal College of Ophthalmologists in 2010. So, the figures are, actually, probably the same, if not worse. Glaucoma, one to twenty something. Wet macular degeneration, assuming everyone is treated, 1 to 32.

So, huge area now. You are likely to see a lot of AMD patients, age-related macular, with depression. You are likely to see a lot of younger macular degeneration patients, late 50s, early 60s still wanting to be able to drive and what have you. But this actually, scuppers a lot of what they’re able to do.

The role of the Eye Clinic Liaison Officer, has mushroomed in terms of guiding these people as to what they’re entitled to, how they can carry on working, where they can get access to stuff to keep them independent.

I usually tell patients who feel that being registered partially sighted, significant visual impairment. Which they sometimes take as a way of saying you’re going to go blind and therefore resist it to just carry a white stick when they’re crossing the road. I’ve had a reasonable number of patients to say that this is a problem, who have crossed the road and nearly ended up being killed because at 30, 20 to 30 miles an hour, you look at somebody and they look normal. But you have no idea about their visual problem.

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So, the knock-on effects of age-related macular degeneration is a big unseen. Depression, loss of income, independence, all sorts of things that are unrelated to the eye seemingly. But it’s actually, visual loss related.

So, what do we treat them with? Well, I’m sure you’ll have heard about this, exorbitant cost, this exorbitant cost. This is what it started off with. In two thousand, so the late 90s, early noughties, photodynamic therapy was very sort of science fiction. You inject a drug, it primes the eye, you blast it with laser for 43 seconds … 83 seconds rather and you get a result. But this was only for the subtyping of the wet macular degeneration and it didn’t work very well other than to stabilise the condition.

And when this came along, somebody realised that anti-vascular endothelial growth factors may work the same. The issue that we have is that, this is off label use of a cancer drug for which we have two licensed products. Both of which have, this certainly halved in price when this came along.

The problem is, we have no alternative to repeat injections and I’m unaware of any CCG yet, that has managed to use Avastin and that’s a sort of separate discussion. Because it is much cheaper. The problem is it wasn’t designed for this. It needs special compounding and it’s got a shorter shelf life. But that’s perhaps a discussion for a different time.

You may have heard a bit of a blip about radiotherapy in the eye. This continues to be an area of interest. There was an attempt to try and introduce this as an additional treatment modality to reduce the number of injections but that didn’t last very long. Surgery has a limited role, but it does have a role, very limited though.

So, in terms of prevention, what is it that you can do to add to what you say to the patients because they have a lot in common with the vast, majority of the patients that you see as I’ll go through in a minute. So, if you tell someone to stop smoking because they might have a heart attack or a stroke, that might have an impact. But if you tell them you might have a heart attack or a stroke or you might go blind, the going blind has potentially, either an additional impact or a bigger impact. Of all the senses people, would rather lose something else but not lose vision. So, that could be a communication tool that you can consider using.

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A lot of epidemiological studies found a relationship between all, of these and macular degeneration. Admittedly this is not modifiable other than to say that compliment factor is very strongly related to the inflammatory aspect of macular degeneration. So, watch that space.

There have been several publications that found a weak link between being on statins and the … and macular health. But not enough to suggest that you put people on statins to prevent macular degeneration.

This is related, strongly associated with wet macular degeneration. So, avoiding this or controlling it is a good thing. And in terms of the most striking modifiable risk factor is smoking. The strongest association yet to be found of modifiable risk factors with wet macular degeneration. And it was actually used in cigarette packing as one of the things that was designed as a public health message to try and dissuade people.

Now, there’s a lot of debate about homeopathy, etc. etc. Two very large studies. The age-related, eye disease study AREDs 1 and AREDs 2 did find that for a subtype of changes with dry change, either dietary supplements or a diet very rich in dark green vegetables, kales, spinach, sprouts, that kind of thing reduces the risk of wet macular degeneration. Obesity as you might imagine, and exercise have the predictable relationship.

One thing that did actually, come to mind is whether eyes can now be fitted in the Framingham Equation. But that’s … I’m not a public health person. So, it just occurred to me that there’s so much in common that it may be something that can be used as well.

In areas … so this may not apply to … very much to the UK. But if you have occasional patient who travels a lot to very sunny climates, yes, there is a, in Australia for instance, part of their staple advice is to wear sunglasses outdoors. Having cataract surgery exposes the retina to rays of light that the natural lens would actually block. So, you’re more at risk of wet macular degeneration if you have cataract surgery. But that’s assuming you actually, spend a lot of time in bright daylight. So, in some cases the environment, perhaps in the UK, climate is protective in that respect.

The other thing, is if you’ve got a patient with macular degeneration there is evidence to suggest that their quality of vision may improve with cataract surgery. Especially, you know, the denser the cataract the more the quality improvement.

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Being female carries a higher risk of wet macular degeneration. Being white, ethnically, Northern European carries an additional risk. The reason for which was theorised at different levels. But you will have Asian patients. It’s very, very uncommon in Afro-Caribbeans and Africans. Very uncommon.

The same relationship with a lot of chronic diseases exists between macular degeneration, educational status and social class.

Future trends. What we are dealing with, is the tip of the iceberg. Because the vast, majority of macular degeneration patients actually suffer with dry macular … so there is no treatment for dry yet. And the treatment that is coming up that’s going through phase 2 trials, is unfortunately, injections. Sorry.

People have looked at delivering the drug through devices that actually allow the drug to act in such a way that you give less injections. No breakthroughs yet.

There’s a very interesting device that uses a concept called iontophoresis, just using an electric current, you put what looks like a contact lens and it attaches with a wire to a handheld device. And you put the drops of the anti-VEGF on that contact lens for five minutes and that’s it. And the idea is that people can have this either at home or in a primary care setting. Again, that’s being trialled at, the moment.

Diagnostics can certainly be placed in primary care settings. Portable devices exist and people have looked at using devices at people’s homes but that is very difficult and very expensive to manage.

Rehabilitation I touched on by way of the Eye Clinic Liaison Officers.

New ways of working which I will finish on, is to do with, 2016 really, being a crunch point for some reason, where a lot of eye units, universally have reported we just don’t know when to see these patients. And the typical story is, you have a batch of patients who can’t be fitted in because there are no slots and they basically go blind.

So, this hit the news with our then President, Prof McEwan was invited to talk about this on the BBC in March of last year.

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In June, a meeting was held to try and look at ways of solving this at local level. And all of this is available on The Royal College website and I’ve put the references as I said, at the end for your perusal.

And MPs were invited to take part in the same exercise in November of the same year.

Essentially, the driving thing, going back to what I was talking about epidemiology at the beginning, is that 1 in 10 of your patients will have an eye problem because 10% of the 100 million outpatients in England a year, 2015 data, is an eye patient. That’s a lot.

[laughing]

SS: And we have to think of a way to manage these patients better than we are at, the moment, at least in terms of capacity.

The discussions that have been had, certainly at West Midlands level, and each of you outside from the West Midlands may have had a similar experience. It goes along a circular route. Why can’t they been seen by the opticians? Because they need a lot of capital investment and training. Okay, fine. But they also need to be information governance compliant with all of the NHS requirements.

But who is responsible for the decision that the optician makes? And the opticians will usually say, well that’s actually the consultant in charge. And the consultant say, well I have, you know and so on. And then the payment ends up being the same as being seen in hospital and the whole thing falls flat.

And I think the advent of vanguards may be an excellent opportunity to do this because you’ll have economies of scale that could be realised at this level.

I tried to make contact with one of our local vanguards but I think they were so consumed with setting the whole thing up, I haven’t heard back from them.

So, what have we done at secondary care level, is we’ve looked at monitoring patients where they come in, have the OCT scan and instead of booking 15 patients in a clinic for example, for one doctor to see you’d book 30 of them. And then somebody would review the scan and give that a patient a result of whether they need an injection or a follow up.

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Similar, to glaucoma and we’re trying to manage with this. But again, that reaches a threshold where you can’t see anymore.

The use of optometrists and other allied health professionals in the hospital setting. So, the secondary sector is actually, directly, rightly, responsible for managing the care. Very few GPs with specialist interests in ophthalmology, not surprisingly, and you know, just the straw poll demonstrates that.

And then there are any number of local solutions, if you look for them at local level. And I’m sure there are schemes elsewhere that we don’t know about that are trying to manage this. But, I think this would be an excellent opportunity to move things forward.

So, I hope I have given you something useful to take away with you so that if you are faced with a patient with suspected macular problem or macular degeneration you know what to do with them. And I hope I’ve touched enough on the rest of the stuff to make it of relevance for your attendance today.

And thank you very much for your attention. The references are there if you see it. You can …

[applause]

END OF TRANSCRIPT

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