People with disabilities need much more support than others in the face of a pandemic as they are a very diverse group. They experience different hardships in accessing information on prevention and risk of infection. Facilities and institutions need to show a humane response in an equitable manner with affirmative action for people with disabilities and this will be more urgent and pressing during and after the pandemic. This is very critical towards achievement of the sustainable development goals and achieving disability inclusive development. This presentation would highlight the approaches towards that end.
Lecturer: Prof. G.V.S. Murthy, Vice President – South, PHFI & Director – IIPH, Hyderabad
GVS Murthy: Welcome to the session. And thanks for joining all of us and sharing our thoughts. So, what I’m actually going to talk about is basically, you know, if you look at how things are panning out and you look at the situation today, we can say that there is nothing which is absolutely 100% right. And there is nothing which is absolutely 100% wrong. And this happens whenever you are faced with a new situation, like we are all facing now because of COVID.
And perhaps, if you look back 100 years or 300 years ago, you would have found that people would have started experimenting with a lot of ideas when they first faced a pandemic or another catastrophe which could be of natural origin. And therefore, we need to learn from each other and try and see what we can do which can improve things compared to what is happening at the moment.
So, just a disclaimer right to the beginning, just reiterating what I just mentioned in a rapidly evolving situation that we see when it comes to COVID, obviously whatever data that we talked about today, is not the same as to what we talked about 20 days ago or may not be the same when we talk about it 20 days from today. There would be changes between the number of cases, the number of deaths, the countries affected, et cetera, et cetera. And I think, the best people to answer, queries related to the epic, the pandemic percent would be the local authorities, who can guide us in relation to the data that is available, the current policies and help us take and a wise call on the way things would pan out.
Just to look at how I would go through this presentation, I’ll try and share some thoughts on the importance of inclusion, especially in relation to health. But when we talk about inclusion, health is only one of the parameters and there are many other domains that we have to keep in mind, and inclusion [inaudible][00:09:58] applies to all of them. I’ll then look at some of the concerns that people with disabilities have faced and try and highlight some specifically in relation to the visual impact. Finally, some thoughts on how the situation could pan out.
And when I say post COVID, there is a dilemma here. What is the post [distorted] [00:03:23] been to? Is it a month from today? Is it six months from today or is it three years from today? I don’t think anybody has that answer. Whether people talk about flattening the curve or being on the downward limb, nobody can say for sure today as to when the post COVID scenario would start turning out. And therefore, many of the thoughts that we share, when we talk about post COVID, I think we need to look at it as something which needs to kick in the minute, the major influx off cases starts reducing. Supposed, COVID could be two weeks from now and it could be equally relevant three years from now.
Like I just mentioned, when they look at disability inclusion, and one of the parameters that we look at is health. We find that the major barrier that people have is access to health care. And then you look at people with disabilities across the globe, and this is from the UN Disability and Development Report of 2018. You find a variation across different parts of the world.
So, if you look at a global average, about 30% of the people report, I’ve been the lack of access to healthcare. You look at Africa, so Cameroon nearly 58 to 60% report they have a barrier in accessing healthcare. And you look at South Africa again on the same continent or Malawi, it is much lower. You look at countries in Asia, about the third of the people with disability talk about facing barriers in accessing healthcare. And South America, the situation is also like what has been described in Asia.
So, these figures tell us that people with disabilities have major barriers in accessing healthcare. And that is when we start, to start thinking about, we need to start thinking about the fact that if you’re talking about universal health coverage, and we’re talking about the all or none. So, if it is universal, it is all, it can’t be anything else. Whether it is in terms of access to services or whether it is in terms of financial protection. And when we look at inclusion, universal health coverage becomes critical in ensuring that inclusion happens.
So, when you look at Inclusive Eye Health, you’re not looking just at the people who are visually impaired. All of you are aware that we are looking at the needs of all those marginalized populations because everybody irrespective of their social status or their geographical location has specific eye care needs. And we know that the poor, the females, the elderly and the geospatially remotely located populations have more barriers. And if you’re looking at inclusive eye health, or inclusive health, we need to look at these groups as a priority group when we are talking about inclusion.
It also, like I mentioned earlier, inclusion is not just help but it also looks at stressing on education, livelihoods, other health care issues, not just eye health and then social inclusion and empowerment. Our role may be limited when it comes to the other sectors. But we still have a very positive role to play where we can start telling them that you could access these services at these places. So, we have a role. Though marginal for us, we still have a role in terms of looking at inclusion with the other sectors.
So, you look at inclusion and we look at inclusive eye health, you’re basically looking at the comprehensive eye care service delivery. And here, we’re looking at the entire gamut starting from promotive, going right through preventive, curative, rehabilitative and palliative care too. And we know that palliative care in terms of eye health may play a small role, but it still plays a role. And therefore, when you’re talking about inclusion and people with disabilities their need for palliative care maybe more than the others.
What we also need to look at is to try and look at what I call the Care Dimension of Inclusive Eye Health. And when I look at care dimension, it is the rule of the C is Compassionate, Comprehensive, Continuum of care right through life. A is Affordable, Accessible, Acceptable. The R, which is Responsive, Respectful, Right-Based, and the E which is Equitable, Essential and Effective service delivery. So, the care dimension is very critical when we come to Inclusive Eye Health.
Just a week ago, you have the UN Secretary General releasing the, releasing the report, the UN report. And we very specifically mentioned that we must guarantee the equal rights of people with disabilities to access healthcare and life saving procedures during the pandemic. But like I said, we don’t know when the post pandemic situation starts. And therefore, we should be prepared to act right through the pandemic rather than wait for the pandemic to end.
And the policy brief, as we saw recently, many of you would have seen the policy brief from the UN. Looking at mainstreaming people with disability in the entire response to COVID and this includes all the targeted actions, whether it is an economic package, whether it is a lively hoods action or whether it is health. So, all the targeted actions mainstreaming people with disability the UN plugged it up as one of the most important things to consider.
Ensuring the accessibility of information and this is an issue that we find is something which is a major concern to us during the pandemic. The availability of facilities, services and programs in both the response at the moment and the recovery period after COVID. Some countries have already started embarking on the recovery pathway with some sort of initiated, mostly economic but a bet on the health side.
One thing that the UN policy brief reiterates is that we must have active participation of people with disabilities as well as the organization, the representative organizations in the response and recovery process. And this is something many of us forget. We still have that [indiscernible] [00:11:16] role in our minds and we think that we’re doing good for everybody else without realizing that the participation of people for whom the concerns are much more than what we could visualize is very critical. To see that all this happens, there needs to be accountability mechanisms in place, to ensure that the disability inclusion is actually practiced in the COVID response.
There are certain risk factors for people with disabilities when you look at COVID. And I’ll try and highlight some of these. There could be others also. But we know that there is an increased infection risk for many of the people with disabilities, because they need to have close contact with their caregivers or their personal assistance. So, whether it is a child with cerebral policy or on adult who’s just recovered from stroke or somebody who’s visually impaired from cataract, a lot of them, all those who are hearing in bed would require support of caregivers. And the way people with disabilities draw attention is to try and gain attention by a tactile touch mechanism. And therefore, the risk is more.
The risk is also increased because people with disabilities do not know how to practice hand hygiene because they don’t have accessible formats of information messaging. When I search, there is hardly any information anywhere in the world which looks at the availability of information and accessible formats.
You look at people, like, with who are visually impaired and how do you think that they can actually think about physical distancing. It is something which is very, very tough. The only way that I can actually visualize is holding a cane in your hand and telling people not to come within this diameter, where my cane is moving around. Otherwise, enforcing measures for physical distancing are going to be very difficult. We also realize that many people with disabilities have other com abilities and there is a much higher risk of conditions like, diabetes and hypertension which is much more than the general population. And we all have heard that these conditions increase the risk of severe complications as well as mortality.
A majority of people with a disability are older age people. You know that it is almost 80, 20 mix. 80% are on the elderly side, above 60. And we know that the mortality risks have been higher in relation to people who are aged. So, people who are aged and have a disability, therefore have a much higher risk.
The other issue which is very dehumanizing, but is a very common thing that we see is that during a crisis, not only people with disabilities but those who are poor female, they get deprioritized because people think that their chances of survival are minimum. And you see what happened in Spain, where they were rushing the ventilators and saying that those who had a higher chance of survival should actually get onto the ventilators. And these are things which can actually, we very negative have a very adverse effect to play when it comes to people with disabilities. Then we also realize that familial pressures when there is a lockdown or immediately after the lockdown when there is an economic necessity, there could be a lot of violence at home. And this is both gender and sexual in nature.
Despite all those high risks, there’s a greater risk of discrimination. How does a blind person actually wash hands or somebody who’s wheelchair bound, how do they reach up to a place where they could wash hands? Talked about the inability to physical distancing, but the other aspects of wash, access to water general sanitation facilities, all these are very difficult. Therefore, their risk of being discriminated is much higher. We also know that they tend to have more severe respiratory illness because one, off their calm abilities and secondly, because of a late recognition of severe infections in them. Because they’re de-prioritize, nobody gives an adequate attention to them, and therefore they are generally recognized when they are in a severe stage.
I’ve already mentioned about the poor availability of COVID information. These are things that we’re saying. When you search across the material that is available in different countries, you hardly find accessible formats being available. If it’s hearing impact, we hardly find anybody using the transparent mask so that lip reading could be something which the hearing impaired could try and pick up. Similarly, there is nothing available for the visually impaired in terms of whether it is magnified print or whether it is braille in terms of getting information. And that could be one thing that you could think of, when you go ahead that to try and get their participation to set up Braille booths in the hospitals where the visually impaired can actually come and try and find out more information, that could be something that you could works.
The effect on the social developmental activities loss of likelihoods education, social support, look at access to transportation. At this time, there is no public transport in most countries. Just imagine how difficult it is for a person with disability to try and access services. I’ve have already looked at the dehumanizing effect, whether it is migrants, whether it is a pandemic, you find that the people with disabilities are at the lowest end of this spectrum in terms off the thought process of people. I would call it a double whammy stigma, because there is a stigma because of disability, and there’s stigma because of COVID. I’ve mention on words when I said that there is tremendous stigma because of COVID, doctors not being allowed to stay at their rented accommodation. People not being allowed to body that near and [distorted] [00:19:05] [00:19:04] after they died because of COVID, that’s all stigma. So, people with disabilities have a double stigma, both because of the disability and the COVID.
The mental health issues, all this play on the mind and the mental health issues are much more magnified or amplified at the moment in people with disability. And this will stay with us for some more time.
So, if I put all that together and try and look at people with disabilities and COVID and their concerns, the practical concerns are related to hygiene. People, once the lockdown is lifted, would rush back to see that they go back into productivity and work. So, escorts people trying to help them would be reduced. They would be scared that if they come to hospitals, hospitals are crowded. Hospitals are thought to be hotspots of infection. And therefore, there would be a mental barrier. There is no accessible information. And the big worry is, once the entire thing starts to returning to near normal scene, what would be the cost of service? And this is something which we have to keep in mind. Things can’t be the same as it was before. There’s a lot of money which has gone into a lot of the activities. And therefore, there could be a change in the pricing mechanisms. We already mentioned about transportation and this is a real problem. Either you reach to them, or you have to find ways of getting them to reach up to you.
Looking at the entire thing, if I were to, specially look at the visually impaired. The news from morning till night or other 24/7 today, nowadays is about COVID. And the anxiety and apprehension that this would cause in the minds of people are visually impaired, because they can hear the news but they can’t see anything, is actually something we have to be ready to facing up to. They depend on their touch. Wherever they go, they need navigation or self-care, touch is such an important mechanism for people who are visually impaired. Whether it is that holding the hand of an escort or a cane to move around, cannot access the messages, they can’t read the messages on COVID. They cannot practice physical distancing and the stress and comorbidities will increase their risk of infection and complications.
So, if you look at the modes of transmission and you’ll put a visually impaired person in perspective, they are exposed to the droplets because they need to sit together with their carriers, with others at home, speak to them and they don’t know how far they are. I talked about the touch tactile sensation which is so critical. So, there is a direct contact, and the fomites. Then they go into the kitchen. They have to put their hands on the surface. They go into the toilet, they’re going to touch the switchboards, et cetera. When they go in, they are touching the tapes which have been touched by the others. So, all the forms of transmission are high risk for people who are visually impaired. And that is what we should start thinking about, how do we reduce this risk of transmission for people who are visually impaired.
Hospitals, and this is where we would need to concentrate our energies on. We’ve seen that globally, where the outpatient consultations. And I’m talking about outpatient consultations. These have basically been emergency consultations. They have reduced to about 25% of what they were. And this is not just in India. India, it is about 90% reduction, with globally 75% reduction.
Surgical volumes, and these again are basically emergency surgeries. This is not just eye care but general surgeries, a depth by more than 75%. And the fear and apprehension that hospitals are where you pick up the infection is very, very fertile in people’s minds. You also have to consider the providers. Providers have mental health issues because of the long lockdown, under the stress and of the stress under which they’re providing services. And therefore, their communication with general people as well as people with disabilities is also on the edge. And these are all realities. These are not hypothetical. These are things that we see nowadays.
Just to look at how an impact COVID has had. I’d look at what was recently published which is the NHS data from UK. And you look at the 10 year data from 2011 to 2019, you’ll find that there is a 29% drop in attendances in March 20, in March 2020 compared to March 2019. And I hear that this is even steeper when you look at April data. In terms of emergency admissions, there has been a 23% drop. So, very significant drop, even in the UK, where you have a national health system.
Imagine the situation in a country, in a low and middle income scenario. It’s not that people are dying just because of COVID. Here, you’ll see the yellow bar which is COVID. But if you look at deaths, compared deaths of March 2020 to a five year average right across, people are still dying from Dementia and Alzheimer’s, Disabling. People are dying from cerebrovascular diseases, strokes, disabling. You find that people are dying in almost the same proportion as before, but they’re not coming to hospital. So they must, they have to be dying somewhere which means that many of them are dying at home because either hospital are turning them away because of the COVID load or because they’re scared to come to hospitals. And this is something which is very, very worrying.
So, the post scenario, what are the likely problems that we may face with? One is the support system that breakdown. We’ve already seen that as of now, it’s been 70 days for most of the countries but still information or accessible formats is a rarity. People would want to rush back to work for economic gains. And therefore, the visually impaired would have a difficulty in coming to the hospitals, even if they’re required to do so. And they were, even if they’re required to do so within the families, the priority that they would get would be followed at.
And the community, talked about the fear perception. And the fact that, if somebody goes to hospital, it is likely that when they come back, the stigma that is there because of COVID, the local communities may say, oh, you’ve been to hospital. Don’t come back into the village. Quarantine yourself for 14 days. Now these are possibilities which we must consider when we look at the post COVID scenario.
Financial implications to individuals and families, there are going to be reduced expandable incomes right across. And how this money is going to be juggled across to meet the needs for health which as it is much lower priority. And if that happens, then catastrophe health expenditures will start increasing, which means that the entire philosophy of universal health coverage is going to take ahead.
Implication of eye hospitals and I know that Tulsi (phonetics) would have talked extensively yesterday. But I’m just speaking on some issues. There could be a likelihood of reduced funding because a lot of money is going into COVID. And once you have a hospital set up, when people come to the hospital, enforcing physical distancing when they are in the hospital, is again an issue. There could be ways and means of providing inclusive messaging. And I think we need to look at this as an opportunity to create a more inclusive health system for people with disabilities. They’re trying to set these up now. We need to look at some engineering changes, reorganizational spaces and trying to look at providing people with disabilities and opportunity of a seamless visit to the hospital. We also need to be well aware of the fact that you may need to have some part time personal like psychologists and physicians who may need to be with you in the eye hospitals also. And they would be implications for you.
Well, some potential approaches maybe we look at the older days of the mobile services. Not in terms of surgery, but maybe some way of reaching out to people with disability closer to their residences and trying to use the strength of the vision centers to provide these services. And this could be post-surgery follow up, refraction, et cetera, so that they do not need to come back to hospital repeatedly.
One thing that we could like — we could try and do is to, and sort of empowered the communities, try and get volunteers in the community. It becomes a community empowerment as well as a community of awareness initiative where you could train them and provide them the opportunity of assisting and escorting the people who require their support. We may also need to look at a higher level of integration of services. Even if it is vertical integration of services trying to look at, you know, coming to the hospital just once for that, arthritis problem, diabetes, depression or looking at integrating at the geriatric care services whenever they need to come to an eye hospital.
So, you would need to look at doing much more in terms of providing the service spectrum and not just limit yourselves with just the eye case spectrum. And only then, perhaps, you would be able to reach out to a larger number. The apprehension which has been created by COVID, it can happen again. 2009 and 10, we had H1N1 and similar outbreaks are possible in the future. And therefore, the apprehension would be there and all of us would have a role to try and labels those apprehensions.
Perhaps, one of the things that we need to look at in terms of data at the moment, data is very scarce. What we need to have systems and templates, which would allow us to look at disaggregated data, people with disabilities, gendered disaggregation, to try and look at pinpointing who needs what, disaggregated data is very critical. And like I said before, creating a pool of trained volunteers to council support people with disabilities. When you come from your own social background, it’s much easier because of the peer support that you can get. And trying to get them on board, either at the hospital or the outreach, facilities may actually be very, very beneficial.
Technology is going to be the mainstay for us. So, video-consultations I think, I here to state, it’s not just a teleconsultation. You need to see that people with disabilities are able to communicate with somebody at the other end. And therefore, video-consultation is very helpful that avoids crowding at the hospitals and therefore, reduces the risk of infection. There could be a second way of coming up towards the end of the year or early next year, so the risk of infection still stays alive. One thing that we must do when we’re looking at inclusion is that these video-consultation sessions would have sign language interpreters or clear diction when it comes to the visually impaired.
A dedicated help line 24/7 because the anxiety doesn’t come at 12 noon, it could be at 3:00 A.M., so, it has to be a 24/7. You could look at some other mechanism like you have your courier deliveries like Amazon, so do they need to come back for collecting their supply of steroids or glaucoma medications. Or can you try and courier it to them so that the contact with the hospital reduces? And if they have to be seen in the hospital, I think, we’d need a much more practical schedule of an appointment system as far as possible where you could link up your vision center, your volunteer core to the people in the hospitals. And digital media is very effective for inclusive eye and seeing messaging.
The other group which can play a major role is disabled people’s organizations. And partnering with the DPOs can make them take responsibility, the communities’ eye health including people with disabilities. And they can facilitate screening camps, vision assessment. You need — they need to be trained, but they can do a fantastic job. We tried this approach in Andhra Pradesh three years ago, for a small pilot covering 21 villages within a period of a year. And people with disabilities from BPOs, they actually felt very empowered and valued in the societies. And that reduce stigma and also got the others to participate in the services that were being provided.
So, some sort of a reverse integration, I think we need to look at the existing BPOs or other community based organizations to support our services. Ayushman Bharat, there is this debate of should cataract be in or it should be out. There is a lot of debate that some states have not adopted it. As of now, Ayushman Bharat still includes a lot of eye procedures including cataract. And if you’re able to development an advocacy package saying that we would use this for people with disabilities, females, et cetera. Then, because it’s a Prime Minister’s flagship program, it’s highly and likely not to be listened to. But otherwise, we’d have to look at other subsidization mechanisms. We don’t know what happens with the grant in AIDS from NPCB.
It’s too early to say right now, difficult to predict when Professor Praveen Russell talks about it maybe he can give us a better in sight. But the mantra would be ensuring availability at affordable costs, whether it is s1elf-help groups or some sort of community insurance packages for people with disabilities and the other marginalized for eye procedures whether it is some sort of a discounted direct payment or philanthropic effort, you would need to look at all these options or increase the cost, taxing products like contact lenses, refractive surgery to meet the needs of people with disabilities and the others in the community.
But before I end, I’ll beseech you again. Unless you involve people with disabilities in the entire planning process, it’s a mantra nothing about us without us. And you would be doing a lot of disservice. If you do not include people with disabilities in the planning process, even if it’s COVID, there are other mechanisms that could be online Zoom sessions, focus group discussions or semi structured interviews but take their perceptions in planning the post COVID inclusive eye care scenario. Thank you./
Female Speaker: Can we use virtual reality based methods to support low vision aids at moment movement?
GVS Murthy: Absolutely. Like I said at the beginning, there is no absolutely right and no absolutely wrong answer when you have a new situation. Definitely, if there is a way in which it could be done using virtual reality, then nothing which stops it.
Female Speaker: So, you highlighted a lot of these challenges, you know for PWDs, because they’ve to touch and – and touch is a very important factor for them. So, what precautions can – can compete PWD [indiscernible] [00:37:33] and the caretakers adapt to stay safe from COVID-19?
GVS Murthy: It’s the same as the rest of us, the same procedures. Your hand hygiene, your physical distancing, when you cough, sneeze into your napkins or into the forearms, it’s just the same. The problem is the message is not getting across because at the moment, there is no accessible information messaging happening for people with disabilities. And that is where we would need to spend time on. You don’t need to get a new message. You need to look at how you customize that message to the needs of people with disabilities.
Female Speaker: Also, do you think any smartphone app still help in social distancing in for the blind?
GVS Murthy: So, when you talk about social apps, smartphone apps, yes, that gives the message that definitely helps. But you will also need to look at how can the smartphone mark out the diameter of 1 to 1.5 meters around the person so that physical distancing can be practiced? So, messaging, yes, smartphones will be very effective. But if you’re able to bring in, you know, some sort of navigational tools where if you’re hitting against the wall or against a chair or something, you could have a beep or something going up in a customized smartphone. Now, those are technology innovations which I’m sure a lot of technology geeks would be able to help with, definitely required.
Female Speaker: Any specific advice when, you know, rendering low vision care services with all the new norms that have come in?
GVS Murthy: Yes. So, whether it is low vision devices or whether it is even doing Retinoscopy, the risks are the same. And therefore, the optometry associations, the ophthalmic societies, the professional bodies have come out with guidelines. And I think that is the only way, having said that, we should also keep in mind that we need to stagger some of the services. So, those which are urgent cannot wait, we then need to look at protecting ourselves completely as well as the person who is receiving the service and try and provide the service. But certain procedures which can be postponed by a couple of weeks, by a couple of months, so that can be prioritized lower down compared to an emergency. So, you would need to do an assessment first and then see whether the fitting of the devices is urgent or can wait. I know that but the younger children was, with no school going, this would be a necessity. But then, you also know that school are close to the end of July, so maybe this is the window in which we could look at what could be the norms which could be relaxed in terms of providing services whether it is for spectacle services, optical services, off and low vision aids.
Female Speaker: Mr. Prashant has made an observation saying that, can we have like sensors can be attached to CCTV cameras which beeps when social distancing is not made, especially can be effective in blind schools?
GVS Murthy: Yes, so I completely agree with that, by that. That’s a fantastic thing. But I would just urge all of us not to use the term Social Distancing, but rather the most, more inanimate physical distancing. Because social distancing has many other connotations and we’ll look at people with disabilities as it is, we are discriminating and social distancing would be discriminating even further. Yes, something like the sensors, and I know a couple of my colleagues here in Hyderabad were trying this variable navigation devices which had sensors which could then help them to know — the sensors would tell them and they come to a block.
But the thing is that the sensor won’t be able to pick out whether it is a chair or a person who is coming in contact, so we can’t definitely device something as technology should come out with things like that. I am not a technology person, so I can’t answer what I’m definitely enthused by that sort of a response.
Female Speaker: Thank you, sir. Just another technology that has come up, is [inaudible] [00:42:55] and compatible for blind people or [inaudible] [00:43:01]?
GVS Murthy: So, at the moment it is, you know, you have to read out, somebody has to read out the question and type it in. But at the moment, it’s not an inclusive application, unless something has happened in the last three or four days which I’m not aware of with the original application which was released is not an inclusive allocation. And somebody will have to assist you with those questions and your responses can then be type in.
Female Speaker: So, how do we address the equity in eye care, in terms of human resources and service deliveries and especially, in the developing countries like Nepal and India?
GVS Murthy: Yes. When we look at equity, are you talking about more on the finance situation, or in terms of social developmental equity? So, one is that you have to reach out and provide services, irrespective of whether they are staying in a rural area, are women, are elderly or are people with disability. So, that is one aspect of equity that we need to consider. The second is services being affordable, somebody picking up the cost or the individual paying for it. Now, the entire work with organizations like Orbis Sightsavers, Mission for Vision, CBM have been doing, have been based on the premise of ensuring equity. So, a lot of examples are. How successful they are in a particular situation may be different, but there are these templates which are existing and which can actually be used to look at your own models.
I remember one of the pieces of work, done by Sightsavers from Bhopal where they have looked at inclusion and equity as the two mainstays of services and their project area were there. So, there are plenty of examples and there’s been work from Indonesia which has also shown that equity is something which can definitely be provided. It all depends upon the challenges that maybe you, maybe you are faced with in a particular location, you have to find contextual answers to those sort of challenges. But if the premise is that I have to ensure equity, then there are adequate models.
Female Speaker: Sir, as you, you know you, you mentioned quite a lot in your presentations. Technology and telemedicine is, is essential to the next phase within our health systems. What do we, like currently, what is the kind of coverage we have in terms of technology for PWDs or in terms of telemedicine implementing?
GVS Murthy: So, at the moment if you look at telemedicine consultation, I have divide that into two phases. One is before COVID, and the other is after COVID. So, if you look at before COVID, maybe it was less than 1% of the population. And I’m talking about general health service and not talking specifically eye care. It may have increased to about 5% and in that tally consultation, I’m also including using the helplines. So, we run a diabetes helpline from the Institute Hyderabad. And we see that on an average, we used to get three calls a day before the COVID and nowadays, it has gone up to 15 to 16 calls a day.
So, there is more traction because off the lack of information to people and secondly, because hospitals are all closed, consultants are not available in many places. And therefore, people are looking at the teleconsultation portals. But teleconsultation portal to be really effective. And I’m talking not just people with disabilities but in terms of general population, the element off trust comes from a video consultation. You are able to see the person on the other hand, was actually guiding you, listening to you. And it almost becomes like a virtual consultation chamber when you have somebody sitting on the other side listening to you and answering your questions. And then prescribing when somebody within that set up where you’re consulting can take down the prescription and get the medication. And that enhances the trust value. And I think video consultation I would rate it above the teleconsultation process.
The other thing that we have to keep in mind is that with these smartphones that we have today, you actually do not require much bond with, when you consent an image across using WhatsApp. So, there are these social media applications which can also do the same thing as a video consultation. But you could have a much more interactive dialogue, to and flow happening even with social media applications.
So, it is, the future will need to invest in that. If you’re able to train some community volunteers to assists these people in the villages to come together to a location where you have a video consultation session, you could be running a routine outpatient clinic with somebody’s part in that. And maybe that would be the way that we need to go.
I’m a strong believer in the thing that there is nothing called charity, everything comes with the cost. And therefore if you’re providing something new, somebody has to bear the cost of that. If it is people who can afford to pay for it, you must charge them but organizations need to look at supporting the cost of village initiatives to try and have video consultation chambers.
Female Speaker: So, with the lockdown now, a lot of hospitals have like they have the staff who can be engaged elsewhere. So, somebody’s asked, Mr. Gohar has, how can they engage the staff of the hospitals to make enabling environment in the community for a more enabling that’s in future?
GVS Murthy: I think the first and foremost thing would be to get the hospital staff believe that they are not the ones who are at special risk. I know more than 200,000 frontline health workers have got infected, about 200 of health personnel have died. But that should not be the worries. First get rid of that worry. I find, you know, we open up our institute from Monday. And I find that at least 20% of my staff, they have this apprehension or anxiety that if they get out of the house, the Coronavirus is waiting to attack them, just like a mosquito waiting to or a honeybee waiting to attack them.
Now, so first get that fear out, provide them with adequate moral support courage, physical support, so that they feel that when they go into the community, they are in their mask, they have the support. Then they would be well prepared and will be able to tackle the problem that comes up.
Now in terms of what they can do, at the moment there is a lot happening where their support would be required. The most important at the moment, is if you’re using village volunteers or village workers or frontline staff like the ASHAs, they need the skill. They don’t know anything about the eyes whatever, you know, theoretically we may think that they know everything, they are very poorly armed.
So, trying to provide the skills to them, training them, using virtual platforms and going and supporting them out there, is something which can start gradually, initially, virtually. With maybe 34 weeks down the line, they could start having small group discussions to try and build up their skills. We need to get them to get these village personnel like ASHAs to start listing out who are the people who are more at risk, who need more support, the widowed, the people with disabilities. At the moment we don’t have an active listing of them. So, if you’re trying to get that organized, then we at least know who are these people who need our services immediately. And that would be something that they can do, immediately put them in to a database and have an active. This is a time to go digital, a great opportunity to try and develop digital records for people in the catchment areas. And then you could provide services to them.
But there is a higher need of integration horizontally, different services have to come together. And if they could go and talk to the others, get them to come to a common understanding or common location where all services can be provided, a basket off services can be provided like geriatric care that would be another thing that staff can do.
So, staff has plenty to do. They can innovate, like some of you have been talking about innovations. They can go out, spread the message, give inclusive messages, talk to people with disabilities, identify who are the people who are there and train them. So, there is no end to the possibilities in which hospital stuff can actually be utilized in the current situation.
Female Speaker: So, what major steps can we take to tackle the sight threatening diseases? Like acute glaucoma, including lensing, glaucoma and many more sight threatening diseases during lockdowns.
GVS Murthy: Yeah, so like I mentioned, we need to prioritize and stagger those who have emergency needs have to be taken care off. And as far as I know now, almost all the eye hospitals in Hyderabad are functioning on the emergency services, nothing has stopped in terms of emergency care. What is not currently available is routine, standalone eye clinics. I have seen some optical shops also opened today in Hyderabad. They can claim that we are doing something urgently required. But emergency departments are not closed down. And when somebody has any danger segment of any sight threatening condition, they should be supported, they should be told that there is no fear of you getting infected if you come. You will have an even worse prognosis if you do not come when you have an urgent procedure.
We need to build that confidence in people to access services. At the moment, that is lacking. And maybe organizations like Orbis and Sightsavers can actually start sending out these messages in millions in social media or a newspaper, saying that eye hospitals are safe, our procedures are safe. And therefore, if you have any of these danger signals, please come without any delay. Those things can’t wait, they need services immediate.
Female Speaker: A high level of advocacy is required for disability wise disaggregated data to be maintained. And during COVID, government has space about the challenges finding these data and [inaudible] [00:55:49]. So, what advocacy plans do you suggest?
GVS Murthy: Right. I think this is very critical. To be very frank, the governments have not trusted most off the NGOs. I’m not talking just about Eye NGOs or International NGOs. They have not trusted local NGOs also. So, there is very little information which is percolating out from most governments. There is something like shutting the doors when it comes to information sharing. And then when they ask for information, when they themselves are not sharing information, it becomes very difficult. So, the opportunity now is the advocacy package should use this and say that there was a problem in getting information on people who needed help most during the COVID pandemic.
And to prevent this from happening, these would be the steps that we suggest of which disaggregated data and ways of collecting that data can be built in. I know that the disability commissioner in Telangana, I’m sure many other states would have done it. Actually have a helpline where they have been following up with the DPOs to look at people who are registered with them to provide assistance in terms of food, support including the provision of medicines et cetera. But that is something which can only be done if you know who those people are. So, the gap here is not knowing the people that would be the big gap which needs to be highlighted in the advocacy package.
And I’m sure that if it has gone at this time like they say strike when the iron is hot, this is the time to do it. Waiting six months to actually share that is of no use, people will have forgotten, they would have their own priorities on mine and would not give us, they would not be the same traction and not give us the same sort of time. So, this is the time that people have to get together and get these messages from for us.