Joint Committee on Health díospóireacht -
Wednesday, 24 Apr 2024

Health Services for the Blind and Vision Impaired: Vision Ireland

An Cathaoirleach

Good morning everyone. Apologies have been received from Deputy Shortall and Senators Hoey and Black and for this first session. The minutes of the committee meetings of 16 and 17 April have been circulated to members for consideration. Are they agreed? Agreed.

Today, the joint committee will first meet with Vision Ireland to discuss the health services and supports for persons who are blind or vision impaired. Later, the committee will meet the Irish Lung Fibrosis Association to discuss the health services necessary and available for persons with lung fibrosis.

To commence the committee's consideration of this matter, I am pleased to welcome from Vision Ireland: Mr. Chris White, group executive officer; Mr. Aaron Mullaniff, chief services officer and Ms Eadaoin Keane, chief marketing officer.

Witnesses are reminded of the long-standing parliamentary practice that they should not criticise or make charges against any person or entity by name or in such a way as to make him, her or it identifiable, or otherwise engage in speech that might be regarded as damaging to the good name of the person or entity. Therefore, if their statements are potentially defamatory in relation to an identifiable person or entity, they will be directed to discontinue their remarks. It is imperative that they comply with any such direction.

Members are reminded of the long-standing parliamentary practice to the effect that they should not comment on, criticise or make charges against a person outside the Houses or an official, either by name or in such a way as to make him or her identifiable. I remind members of the constitutional requirement that they must be physically present within the confines of the Leinster House complex in order to participate in public meetings. I will not permit a member to participate where they are not adhering to this constitutional requirement. Therefore, any member who attempts to participate from outside of the precincts will be asked to leave the meeting. In this regard, I ask any member taking part via MS Teams that they confirm they are on the grounds of the Leinster House complex prior to making a contribution.

I now invite Mr. White and Mr. Mullaniff to make their opening remarks on behalf of Vision Ireland.

Mr. Chris White

I am delighted to be here this morning and I thank the committee for the opportunity. As Ireland’s national sight loss agency, Vision Ireland, which is the new name for the National Council for the Blind of Ireland, NCBI, welcomes the opportunity to present to the Joint Committee on Health on the measures we feel are needed to improve health services and supports for people who are blind or vision impaired and specifically on why Ireland critically needs a national vision strategy for the better management of our nation's eye health.

As we navigate the complexities of healthcare - and we are all well aware that it is a complex subject - it is imperative that the committee considers every facet of health and well-being, including often overlooked areas such as eye health and the resulting impact on the quality of life of the 296,000 people with sight loss in Ireland.

Our eyesight is central to how we experience the world, yet vision impairment and blindness remain a significant public health concern, now affecting, as I have just said, 296,601 citizens of the State. Alongside an ageing population, this is an increasing challenge for our healthcare and rehabilitation system and services. Waitlists for ophthalmology outpatient appointments and inpatient procedures continue to remain among the longest in the Irish healthcare system, with heavy reliance on the acute care systems for diagnosis and treatment.

In a country where vision impairment and blindness can profoundly impact an individual's independence, livelihood and quality of life, it is incumbent upon Vision Ireland and the committee to take proactive measures before it is too late. Today, Vision Ireland is stressing the critical need for a national eye health strategy, that is, a comprehensive framework designed to safeguard and promote the eye health of every citizen in this country. We consider that such a strategy is not a luxury but a fundamental necessity for ensuring equitable and timely access to quality eye care and vision rehabilitation, while also preventing avoidable blindness and enhancing the overall health and productivity of our population.

A national vision strategy serves as a roadmap for action, guiding policymakers, healthcare providers and stakeholders in aligning resources, implementing evidence-based interventions and fostering collaboration to tackle the multifaceted challenges of eye health. By investing in prevention, early detection, timely treatment and vision rehabilitation, which is very much in line with Sláintecare, we can mitigate the personal, social, and economic costs associated with vision impairment and blindness.

The time has come for us to prioritise eye health on a national agenda and commit ourselves to the development and implementation of a robust, inclusive, and sustainable national vision strategy in the next programme for Government. By doing so, we not only are safeguarding the sense we all fear losing the most, but also uphold our collective responsibility to promote health and well-being for all.

Mr. Aaron Mullaniff

As chief services officer, I am looking around the committee room and asking myself what the committee really needs to know and is there a topic that have could sufficient influence to galvanise the joint committee, the Department of Health and the HSE around the challenge that Vision Ireland faces every day in delivering life-changing interventions to babies, children, adults, older adults and families who are being increasingly impacted by vision impairment and blindness in the absence of any agreed national vision strategy or blueprint. The theme of my statement is, "Why this committee must care". In particular, what should motivate the committee to support the work of Vision Ireland in the short term, while ensuring that all committee members commit to the critical need for a national vision strategy and commit to put it in their manifestoes across the lifetime of the next Government?

That said, I wish to speak about what it is like to live with vision impairment and blindness in Ireland. I wish to caveat this statement by acknowledging that I am acutely aware that I am not visually impaired or blind. I am not the parent or loved one of someone who is has been impacted by blindness. I say this because I want to speak to those insights and the realities and facts of living with vision impairment and blindness. On one level, I am not seeking to marginalise anyone who has been impacted by vision impairment or blindness any further but I do want to address that upfront.

I want the committee to get a clear understanding of the challenge Vision Ireland faces, particularly the challenge the Government has on its hands, given the increasing prevalence of vision impairment and blindness in this country. On the theme of prevalence and prevention in particular, the committee should know that many people are completely indifferent to vision impairment and blindness and indeed to our solutions. In some ways, Vision Ireland's work will never be done, even after 93 years. This is despite the fact that every day, 18 people in Ireland begin to lose their sight. This is someone's mother, father, son or daughter, friend or neighbour. Vision impairment could affect each and every one of us, yet research shows that many of us are optimistic about the probabilities of chance. This is called optimism bias, and it is why many of us do not safeguard our own health. There are 15 people in this room and at least one in five people will be affected by vision impairment and blindness during their lifetime. Between 50% and 70% of blindness is entirely preventable through early detection and treatment

As my colleague said, sight is the sense people most fear losing, yet, Ireland has a really poor record when it comes to looking after eye health.

Only one in two people report that they get their eyes checked regularly.

The number of people experiencing vision impairment and blindness increased by 439% between census 2016 and census 2022. The committee heard me correctly - an increase of 240,000 people. Ireland has one of the lowest number of eye doctors in Europe. Even Greece has three eye doctors for every 10,000 people. Ireland has not quite got one. According to the Irish Medical Organisation, the recommended number of consultant posts in ophthalmology is 147 but, currently, we only have 41. There are 37,880 people waiting for their first outpatient appointment today, knowing that there is something not quite right with their sight. Some 6,000 of the 37,000 people are waiting over 18 months and as a consequence of a broken healthcare system, those individuals and those children are likely to experience a significant deterioration in their sight where Vision Ireland will ultimately pick up the pieces.

If one receives a letter of appointment today as a public patient seeking cataract surgery, it is likely one's appointment date will be some time in 2027 or 2028. If one has the right level of private health insurance, one can have one's cataract seen in approximately six weeks. Until 2020 the majority of patients in this country went through the diagnosis alone without being offered any support.

The research suggests that on average children with vision impairment or blindness have six fewer friends than their sighted peers. Blindness and vision impaired students make up the smallest cohort of all students with disabilities in higher and further education in Ireland. Those same students are more likely to undertake a degree in arts, humanities or business than the general student population and are half as likely to complete a degree in science, engineering or maths - the so-called skills of the future. Earlier intervention is key and Vision Ireland might be a child, young person, mum or dad's only source of professional help outside of a broken system.

Last year the European Disability Forum described Ireland as leading the "hall of shame" by having the lowest number of people with disabilities in employment in Europe. Some 75% of people with vision impairment and blindness of working age are not working in this country. That is too much untapped potential. Our services supported 44 into employment last year and saved 180 jobs, but that is not our job.

Four out of five adults with vision impairment or blindness are not currently meeting the national physical activity guidelines. One in two teenage girls experiencing vision impairment or blindness is categorised as at cardiovascular risk by the age of 13. Older adults with vision impairment or blindness are ten times more likely to experience depression, isolation and loneliness and three times more likely to experience hip fractures and earlier admission to long-term care.

The HSE will provide Vision Ireland with approximately €23 to support each person who is living with visual impairment or blindness in Ireland in 2024 but it has not significantly increased its grant to Vision Ireland services in almost a decade despite the fact that we are doing more than ever.

The total economic cost of vision impairment and blindness in 2022 was €3.3 billion. People cannot afford to wait any longer for fair and accessible eye care or vision rehabilitation in this country and that the lack of a cohesive strategy will mean further burdens on the Exchequer and the healthcare system unless we take action.

Almost 300,000 people experiencing vision impairment and blindness in Ireland are the State's constituents, and not Vision Ireland’s, nor can we truly represent those 300,000 people here today. Through its services and interventions, Vision Ireland has been trying to do something about every one of these challenges but now we need the committee's help. In the last six minutes I have provided it with 40 reasons this committee should care enough to develop and implement a national vision strategy over the lifetime of the next Government.

An Cathaoirleach

I thank both Mr. White and Mr. Mullaniff for their opening contributions. I call Senator Martin Conway. We will try five minutes each for everyone and perhaps have a second round.

Senator Martin Conway

People probably know my position on this particular issue so I do not need any more than five minutes. I thank Mr. White and Mr. Mullaniff for the powerful opening statements. I am sure there are many more than 40 reasons this committee should care about the nearly 400,000 people in this country who suffer some form of sight loss. The last census proved that our population is ageing. With an ageing population, one of the faculties that deteriorates, unfortunately, is eyesight. Use of computer screens, etc., has an effect. The witnesses might talk to us about the type of eyesight challenges presenting in more recent times.

Two issues worry me. The first is that 80% of sight loss is preventable with early detection. In my case, it was not preventable. I was born with what I have, which is less than 20% eye sight. I have to live with that and I try to do so every day to the best of my ability, but what I am determined to do through my role as a Member of the Oireachtas is to create an environment where preventable blindness is prevented. In terms of a national strategy, how would the witnesses see that building up? How would it be designed to eliminate as best as we possibly can preventable blindness?

The other issue that concerns me greatly is the fact that over 80% of people who are diagnosed with vision impairment, in particular young people, college students and people in their 20s and 30s, are dependent on welfare and are not fully employed in our society. It is certainly way above the European average, which is much more favourable than what it is in Ireland. In terms of a vision strategy, how would the witnesses see it eliminating preventable blindness and in terms of employment, at least getting to, if not ahead of, the European average?

Mr. Chris White

I thank Senator Conway for his long-standing support for this important issue. As we said in our statements, this is a whole-of-government issue. This is not something that is just health. This is something that touches on education, sport, employment and transport and the strategy needs to engage in all those areas. For specifics, I will pass over to Mr. Mullaniff.

Mr. Aaron Mullaniff

I will quickly go through it. Senator Conway talked about the types of sight loss, essentially, what are we seeing coming through the door and what has been happening in the recent past. Age-related macular degeneration is the most common cause of vision impairment in people over the age of 50 in Ireland and it can be picked up through screening and detection.

The second most common condition that is now presenting that has come out of nowhere is glaucoma. Glaucoma accounts for 20% of all outpatient appointments. Essentially, the damage to the optic nerve that connects to the brain becomes an issue, but could be monitored by checking the pressure behind the eyes. Similar to AMD, it is also something that can be picked up through screening and detection and on a level, entirely preventable.

It is followed by cerebral vision impairment or neurological vision impairment where there is no eye disease per se but perhaps the brain is not firing in a way that it should and sending messages back from the optic nerve.

Diabetic retinopathy is also on the increase. We have 300,000 people with diabetes in Ireland and approximately 10% of those people will go on to form diabetic retinopathy or a rapid form of blindness or vision impairment. Next is cataracts and RP.

To speak to the consequences of not having vision strategy from our perspective, new referrals to the organisation are consistently on the increase. Between 2020 and 2023, our referrals increased by 70%. Avoidable blindness is what you would be seeking to target at the first opportunity. There are major inequities that will persist. Going back to the 37,00 people who are waiting, 49% are waiting over six months, 28% are waiting over a year and 16% are waiting over 18 months.

That is me waking up in the morning knowing there is something not right with my sight.

Senator Martin Conway

I am very conscious of time. I have a final question. On international best practice, can Mr. Mullaniff say whether there is an international template we should emulate? Is there any country where there is a situation where preventable sight loss is prevented?

Mr. Aaron Mullaniff

It is a little like the Covid approach. Every country is taking a completely different approach. Canadians are currently working a Bill for a national vision strategy through their Government. The global leaders on this are Australia, Singapore, the United Kingdom and Canada. Australia has major screening programmes across age-related macular degeneration, AMD, and diabetic retinopathy. Singapore has the most advanced eye healthcare system in the world. The UK is using guidelines for detection, treatment and time to treatment, which are being consistently managed in the form of quality standards. As I said, the Canadians have universal healthcare and specific screening programmes that are targeting those who are at socioeconomic risk and indigenous populations.

Deputy David Cullinane

I welcome all our witnesses. Their main call seems to be for a national vision strategy. They set out the reasons for that, including guiding policymakers and setting out a coherent plan. Representatives from the Irish Cancer Society who were before the committee a number of weeks ago talked about the national cancer strategy. While having a national strategy is very important, their concern was that it was not properly funded. Whatever strategies are put in place, there has to be funding behind them. Otherwise we will have a strategy that is just words on paper, as they said.

On the need for a national vision strategy, will the witnesses take us through what they see as the core components of that, including why it is important and what added value it would bring? I say that in the context of the remarks they made about Vision Ireland's funding, which has not significantly increased as regards the core grant for the past ten years or more. What is the need for the strategy? What will it do? What is its importance from Vision Ireland's perspective? How do the witnesses see the funding for Vision Ireland being part of the rolling out of a new national strategy?

Mr. Chris White

I do not disagree with the Irish Cancer Society approach, but having a strategic embedded approach for vision rehabilitation in a vision strategy has to be our starting point. We do not want to be the organisation that just calls for more money forever without having a purpose. Vision Ireland is a major player in looking for a vision strategy, but it is not the only player. We have colleagues in other organisations and a very strong partnership approach with the HSE. Unless we have a unified vision for how we will deal with the issues around vision impairment and sight loss, we cannot work out how much that will cost and how it will be funded. Our starting point is to encourage the adoption and development of a national vision rehabilitation strategy. That is taking one step back and looking at the bigger picture. I will ask my colleague, Mr. Mullaniff, to talk about the detail of that.

Mr. Aaron Mullaniff

The vision for better and improved eye care in this country is set out in the HSE's plan for ophthalmology published in 2017, which was the same year as the primary eye care services review. Essentially, the finding from that review was that 70% of activity taking place in acute hospitals should not be there and should be in the community. That has been followed up by Sláintecare, which has funded a number of waitlist initiatives. Vision Ireland is willing to act as the conduit, vehicle or glue to bring the acute primary community together. We are finding we are reverse engineering our services. Putting our services back into an acute setting or trying to put our services into a primary care setting is actually making things worse. We have to unlearn what we are currently doing.

The key thing that would be different within the strategy is the focus we would particularly place on prevention. As I said, prevention is the best medicine. There is a fear in this country where people do not want to get their eyes checked. They put that screening to the back of their minds when, on a very basic level, they can all get free eye checks every two years if they are paying PRSI. We would look to go out on significant campaigns, including screening campaigns, to go back to the question asked by Senator Conway, where we would look at those most common conditions that are rapidly on the increase, especially glaucoma. Some 50% of people who have glaucoma do not realise they have it. It is the most rapid form of blindness-----

Deputy David Cullinane

I will add one point because we are tight on time. A national strategy is very important and I support Vision Ireland's call for it. Mr. Mullaniff talked about moving some of the services, or maybe putting more of a priority on community care as opposed to having a higher dependence on acute care, which is one of the tenets of Sláintecare that makes perfect sense. We are told the logic of the regional health areas, RHAs, that are being established is to align services, bring an end to silos, have an integrated system and a single budget, and put more emphasis on and bias towards community care. While having a national strategy is very important to give coherence, engagement by Vision Ireland with the new executive regional officers in those RHAs will be important. As that is being rolled out, precisely what we want to do is shift the focus away from acute services, where it is not necessary, into the community where it may be more important, not just for prevention but treatment. I offer that up by way of advice.

As I will not be back in again, I wish the organisation well. I thank its representatives for their presentation.

Mr. Chris White

I thank the Deputy. I will respond a little to his point. We are very keen to work with the HSE. We have a good relationship with it. Ironically, the way we are funded means we currently have nine separate contracts with nine individual community healthcare organisations, CHOs. We have requested on numerous occasions that organisations like Vision Ireland move to one single HSE contract. Unfortunately, even with the RHAs being developed, we will still have six individual contracts that will be individually monitored and administered by the six individual RHAs. There is potential for a further 21 contracts within the individual health areas in each individual RHA.

When there are large organisations, such as Vision Ireland, which are delivering the vast majority of vision rehabilitation services on behalf of the HSE, it is difficult from an administration, funding and organisational perspective to be really attuned to the various needs of the HSE and the needs of people with sight loss.

An Cathaoirleach

The current system does not make sense.

Deputy Neasa Hourigan

I welcome the witnesses. I will ask all my questions and then hand over to them, if that is okay, for the sake of time.

One of the things we welcome, which is indicative of the change from NCBI to Vision Ireland, is that it is engaging with so many people who are in the process of possibly experiencing vision loss. That affects a huge proportion of the population who might not think of themselves as visually impaired or blind and in a particular box. I imagine that in the past decade the number of people Vision Ireland has reached out to and engaged with is very different in that it has significantly increased, but it is doing so with the same budget.

I will go back to the matter of the ophthalmology model of eye care outlined in the 2017 report. My understanding was that was meant to run from 2017 to 2019, for the most part, and there was a piece of money beside that of €23 million. I would like to understand, from Vision Ireland's perspective, what happened in the intervening Covid years. What kind of impact did that have on the model of care? We have had a new clinical lead since December 2023. Has there been any interaction between Vision Ireland and the clinical lead on possibly creating a national strategy? What is the engagement? We are always pushing the HSE to listen to patient advocates and NGOs.

I am interested in understanding a little more. All the red flags went off when Mr. White said Vision Ireland will have six contracts, and possibly 21 more, with individual RHAs and health areas.

I am interested in knowing what administrative burden this places on Vision Ireland as a relatively small organisation with a tight budget, all of which it wants to put on the front line. The HSE could streamline that system. What kind of pressure does this situation put on the organisation?

What are the witnesses' views on integrated eye care teams and whether they are taking a regional approach that is fair and not a postcode lottery, which is what is seen in many services? Those are probably enough questions for the two and a half minutes remaining.

Mr. Chris White

I will take some of them and Mr. Mullaniff will jump in to cover any gaps I have laid. I thank the Deputy for her questions. They were good ones and I know she has lived experience of this issue. Her insight is important.

Our engagement with the HSE is multifaceted, deep but also shallow, and something we value. It is a collaboration we are always seeking. It works in many different ways. It is not ideal or perfect. The reorganisation of the HSE into regional health areas has been a missed opportunity, in that there is an opportunity to engage with certain large-scale section 39 agencies on a national level rather than being fed into six or 21 individual relationships.

The burden of governance and administration in running all of these service arrangements is significant and understated by the HSE. We are not funded effectively in how we engage with the HSE. The Deputy is entirely correct, in that our focus has been to put as much money as possible into our front-line services. We do that to the extent that Vision Ireland subsidises the HSE to the tune of 30% of the cost. Through our ability to generate our own funds, we are effectively subsidising the State to the tune of approximately €3 million every year. The sustainability of that is coming to a rapid end because of increasing needs in terms of the WRC pay settlement, pensions auto-enrolment and a range of other governance issues in whose respect we cannot continue subsidising the State.

For the other details, I will pass over to Mr. Mullaniff.

Mr. Aaron Mullaniff

I am conscious of the time. Regarding the rebrand, the consistent feedback to us as the National Council for the Blind of Ireland had to do with the stigma associated with the word “blind” and what went on in the national council. By shifting to the title “Vision Ireland”, we have tried to bake in a much more accessible organisation and target those who are at risk of vision impairment and those who have recognised vision impairments but do not like the stigma or the stereotype of coming forward. Believe it or not, that people are now coming through our door tells us that rebranding was the right move. We are seeing a significant number of people with hidden disabilities, including sensory impairments, for example, intellectual disabilities. So far, so good with the rebranding and the feedback has been positive, but I understand people’s concerns about charities investing in rebranding and the dilemma of what should go towards the front line and what should go towards trying to be a much more accessible organisation. There is always a trade-off.

In 2021 and 2022 in particular, Covid drove the waiting list to approximately 49,000 people. Currently, there are approximately 50 on the specialist ophthalmology waiting list. The surgeries are at the very top, but some of the initiatives – the enhanced community care programme and the roll-out of the primary eye care teams or, as they are now called, the integrated eye care teams – have had an impact. The likes of the hub-and-spoke models that have been set up at Citywest have done a good job, with a particular focus on children. That low-end work is being taken away from consultant ophthalmologists, who are professionals working at the top of their grade. It is great to see. The north east region integrated eye care system, NERIECS, which appeared before the committee previously, is another wonderful initiative that has been eliminating waiting lists by taking control of the governance via a virtual accountable care organisation, VACO, through which it brings the governance of six CHOs, ourselves as the rehab provider, the Ireland East Hospital Group, the Mater hospital and the eye and ear hospital together. It is having terrific results. We need more of that to be mapped out with a view to the opportunities that exist with the regional health areas.

Regarding the clinical lead issue, there has not been a large amount. It is on our shoulders to take that up. We have been developing the relationship with the Irish College of Ophthalmologists, and that has been going well so far.

Deputy Neasa Hourigan

I thank the witnesses.

Deputy Gino Kenny

My first question is one I have been trying to ask, and this is probably a good place to ask it. How much of an effect does people looking at screens have on eyesight? We are on our phones, computers and so forth for a good part of the day. Is it affecting people’s eyesight, particularly children’s?

Mr. Chris White

I will defer to Mr. Mullaniff, our chief services officer.

Mr. Aaron Mullaniff

It is a good question. What we are seeing in the data coming through is that refractive error is probably the largest form of vision impairment in this country. People are spending eight to ten hours per day on computers or their mobile phones. Their eyes – I am not an ophthalmologist or other kind of eye specialist, but I can answer this question – become shorter and tighter and their ocular muscles tend to contract after looking at a screen for a considerable period, which brings a level of myopia. We have what we call the 20-20-20 rule, whereby people should give their eyes a break every 20 minutes by looking 20 ft away for at least 20 seconds. Refractive error will not present as an eye disease and will not be chronic in nature, but we are seeing more and more of it. It is at the mild end, but people are also self-prescribing. They are going out and buying basic glasses in the form of easy readers in their local shops – I will not name any shops – for €2. That is actually compounding the issue of refractive error.

Deputy Gino Kenny

Is there any way of mitigating us constantly looking at screens? We all have to look at screens because of our jobs and so forth.

Mr. Aaron Mullaniff

Vision Ireland has committed to an initiative that will focus entirely on awareness and education. Next month, we will put a vision van on the road, similar to BreastCheck. That vision van will visit 150 towns and villages around Ireland. Free of charge, it will provide a level of screening using a fundus camera and will check the back of people’s retinas. We will also be raising awareness around the dangers of self-prescribing and educating people on how they can look after their eyes by eating well, not smoking and taking regular eye tests.

Mr. Chris White

To back up Mr. Mullaniff’s comments, we see this as the entry point for the vision strategy. There needs to be some level of public awareness campaign around the dangers and impact of screen overuse. From our perspective, bringing ideas like the 20-20-20 rule or suggestion into the broader public health agenda is a cornerstone of a vision strategy.

Deputy Gino Kenny

My final question is on the correlation with diabetes. Mr. Mullaniff stated that 10% of people with diabetes would develop vision impairments. Diabetes is on the increase and many people do not know that there is a correlation between diabetes and eyesight. Until my aunt lost her eyesight a number of years ago due to diabetes, I would never have thought that there was a correlation. What is the scientific reason for that correlation? Diabetes is prevalent in society.

Mr. Aaron Mullaniff

There is no national registry for diabetes, just as there is no national registry for blindness. That is a problem in itself.

A number of factors can have an impact, such as poor diet and obesity, and we are seeing more and more of that. High blood sugar levels are responsible for damaging the retina, which creates a bleed or a haemorrhage behind the eye and, thus, can lead to diabetic retinopathy. The figure we are working off was provided by Diabetes Ireland. It is about 300,000 people or so. We know, based on our own statistics, that at about 10% of those people will come through the doors of Vision Ireland and that is quite a sad reality.

I acknowledge the work being done by Professor David Keegan, who has been the lead for diabetic retina screening. That screening programme is focusing specifically on those people who have diabetes and has been very successful. It is probably one of the better areas where we have been much more proactive as a State.

Deputy Bernard J. Durkan

I welcome the witnesses and thank them for the information. In respect of a strategy, what one measure that is likely to arise from a vision strategy would have the greatest impact in the shortest time?

Mr. Aaron Mullaniff

It is the vision surveillance aspect and programmes targeted at those conditions that are robbing people of their sight.

Deputy Bernard J. Durkan

What would vision surveillance entail?

Mr. Aaron Mullaniff

That is a question for eye doctors and eye specialists, but, looking at similar programmes, it would potentially involve a check or screen every 12 or 24 months. That detail needs to be worked out and we are here today to advocate for that.

Deputy Bernard J. Durkan

The committee has discussed the issue of cataracts and their removal over the past 12 months in particular. As Mr. Mullaniff said, patients are on waiting lists, which can be very long, and that can be very challenging for people who live alone and depend entirely on motorised transport and so on. Has Vision Ireland had occasion to engage with the HSE to ask it to change its strategy whereby if a patient is forced to go for private treatment while on a waiting list, unless he or she has been approved by the HSE, he or she would make no contribution to the cost? Has any such discussion taken place?

Mr. Aaron Mullaniff

No discussions have taken place per se but, from our perspective, it is wholly unacceptable that patients are forced to board a bus and travel to the North to have that procedure take place, and we as an organisation tend to pick the pieces in that regard. That is not sustainable as an organisation, and it is something about which we will seek to speak to the HSE as part of a national eye care strategy.

Deputy Bernard J. Durkan

I agree entirely in regard to the unacceptability of that practice. It is not necessary. We have the expertise here, in both the public and private sector, and the question is how quickly we can access it. The strategy should entail regulations as to how and how quickly patients can access the treatment in such cases and there should be no question marks about the payment. How often does Vision Ireland engage with the HSE on this issue, or does it engage? Does the HSE invite it to engage or vice versa?

Mr. Chris White

I will start on that. It is a good question. How the HSE engages with organisations such as ours is very much on an ad hoc basis. There is no national dialogue; rather, there is organisational dialogue. Because the HSE is acute, primary care and community based, we perpetually engage with various parts of it. We had a very good meeting with Bernard Gloster in the past four weeks and he is very much on board with understanding the needs of the 300,000 people with sight loss. With Mr. Gloster at the helm, we have a strong advocate for change and for delivering things differently. How that percolates down through a byzantine administration is a challenge. Finding the right person to talk about the key issue at the right time and in the right way is a lottery, which goes back to Deputy Hourigan's point about different services for different eircodes.

Deputy Bernard J. Durkan

Has any effort been made to establish a regular dialogue on these issues with the appropriate authorities?

My final question relates to preventative lifestyles and the checks that can be done most quickly to confront the issues and address them.

Mr. Chris White

I will defer to Mr. Mullaniff.

Mr. Aaron Mullaniff

On the question about the HSE, when the clinical care programme was being put together in 2017, the NCBI had no meaningful consultation or engagement on the programme. That is being straight about it. As for the primary eye care services review, which happened in parallel, we had minimal engagement on that. The issue we have as an organisation is that we are not considered from a vision rehabilitation perspective. After someone acquires a vision impairment, which could be catastrophic or gradual in nature, that individual will be referred to us, but Vision Ireland is not even considered in the clinical care pathway. If 90% of patients can benefit from vision rehabilitation but there is no clinical pathway to show what “good” looks like, that is of major concern to me as chief services officer and it is not sustainable for us as an organisation. We are not here to confront but to work with the HSE, the Department of Health and, in particular, this committee. That is why the blueprint and strategy is really important to eliminate - that is the key word – the avoidable blindness that is happening day in, day out.

On the question about lifestyle, that information is not, from a campaigns perspective, something we encounter day to day. People are not really aware of the need to know their family history or even to wear sunglasses and the risk that comes from damaging UV rays. One provider carried out about 1 million tests in 2022 and we are trying to gather data ourselves on what proportion of the population are not even having their eyes checked, and we are currently looking for that information. Again, smoking is a huge factor that people need to be mindful of, as is eating well. There are a range of measures that citizens of this State need to take on themselves.

Deputy John Lahart

The questions I wanted to ask have been asked, by and large. I had one about macular degeneration, the increase in that and the state of play in that regard. What were Vision Ireland's annual running costs last year and what is its principal source of income? How many staff does it have and how reliant is it proportionately on public goodwill funding and State funding?

Mr. Chris White

The cost of the service delivery is just under €11 million, while the State funding is just over €7 million. The goodwill gap, as the Deputy suggested, which is us raising our own funds, is about 32%, so we are effectively 68% funded by the State. Our subsidy to the State, therefore, is 32% of the cost of delivering the service.

Deputy John Lahart

How many employees are there?

Mr. Chris White

In total, we have 400 staff, but about 200 of those are in our retail arm.

We have the largest number of charity shops in Ireland. About 170 staff are delivering vision rehabilitation services around the country.

Deputy John Lahart

I did not realise that Vision Ireland was the biggest charity-----

Mr. Chris White

The biggest single.

Mr. Aaron Mullaniff

Regardless of how many more people come through the doors of Vision Ireland, Vision Ireland does not receive any increase in its core grant. With money not following the service user, that piece is unsustainable. We have a cradle-to-grave approach. We have early years teams, school-going age teams, working employment teams, job readiness teams, job retention teams, adult teams and older adult teams. They are maxed out with their caseloads. We will probably see 3,000 new people for the first time in addition to the 20,000 people on our books whom we are also supporting. That is not sustainable. Vision Ireland needs to look at that and engage further on it. Today presents a great opportunity to flag that. We value the question the Deputy is asking.

Deputy John Lahart

Where do we stand with macular degeneration? Ten or 15 years ago we did not hear of that.

Mr. Aaron Mullaniff

Age-related macular degeneration, AMD, is the most common condition in people over 50. Every third referral coming through the doors of Vision Ireland relates to AMD. There are two kinds, the dry kind and the wet kind. A proportion of the dry kind can gradually become wet in nature and can also lead to a pretty rapid and significant form of blindness which requires regular anti-VEGF injections. We know that a significant proportion of people on the waiting list at the moment are experiencing symptoms of AMD. There is no doubt that a level of avoidable blindness is happening. This is a condition that can be detected with better screening, but, unfortunately, to the best of my knowledge that is not happening at the moment.

Deputy John Lahart

What is the age profile of people with AMD?

Mr. Aaron Mullaniff

Those with AMD are more likely to be female. The average age at time of referral is 68 with 2.2 chronic conditions in addition to the vision impairment. The particular risk with AMD is the loss of central vision. We have terrific teams which are really good at supporting people to centrically view by using peripheral vision. There is also a risk of falls and hip fractures.

Mr. Chris White

Regarding demographics, while it is the largest group we see, with the population ageing, that group will only get bigger. We will see, not quite a tsunami, but an ever-increasing demand from people with AMD coming through our doors as our population ages. The preventable blindness point is also interesting. Ten or 12 years ago there was no real treatment for AMD. While unfortunately it involves an injection into the eye, it is now possible to stabilise and retain the vision a person has with an eye injection, but it requires detection. The earlier the detection and the earlier the treatment, the greater the sense of vision a person with AMD will retain.

Senator Seán Kyne

I welcome the representatives of Vision Ireland. This question has been touched upon. Is there a correlation between gender, different age cohorts, level of education attained, level of affluence and uptake of the free eye test under the treatment benefit scheme? Is that information available? I suspect it is easier to get a breakdown by gender and age. Does Vision Ireland have access to that information?

Mr. Aaron Mullaniff

We do not have access to it and it is something we are looking for. Owing to GDPR restrictions, we will not get the level of detail on the profiles of those customers who are accessing those screening tests on the high street. It would be very helpful from a business intelligence perspective because it would support us and allow us to pre-empt and predict services in advance as opposed to the status quo right now which is consistently reacting to what is coming through the door in the absence of any plan or blueprint.

Senator Seán Kyne

Would the Department of Social Protection have some of that information?

Mr. Aaron Mullaniff

We will take that away with us and if we can get that information, we will share that with the committee in due course.

Senator Seán Kyne

Dry eyes is something we hear about. I have dry eyes and take eye drops regularly. I am told it relates to screen time and houses that are insufficiently ventilated. Can that cause more severe issues down the line? Might it be a precursor to certain vision issues?

Mr. Aaron Mullaniff

Not that I have seen yet. However, it is still too early to know because people are spending increasingly longer in rooms or workplaces. I do not think that employers are aware of the conditions that they could create or adjust to support people. They could ensure that rooms are adequately lit and that the screens are appropriate. Dry eyes is a chronic condition. Given the numbers coming through Vision Ireland's doors, we would seek to refer that back into the community rather than supporting through our services.

Senator Seán Kyne

Is there any evidence, even anecdotal evidence, that people who work outdoors have fewer issues with their eyes?

Mr. Chris White

That is a really good question. The three questions the Senator has asked all highlight the lack of research available. Mr. Mullaniff and his team are doing comprehensive research on children being excluded from PE in school in conjunction with Dublin City University. It seeks to analyse the impact of schools saying that children with vision impairment cannot participate in PE on other morbidities and cardiovascular function. That is one study. A whole range of studies need to be done to inform the public health agenda which will then feed into the State's direction and concern about how people should mind their eyes. There is very little or no Government information about minding good eye health. We see these questions coming forward on the relationship to refractive error, dry eyes or other issues. The question about working outside is really interesting. As there has been no real research on that, we are not in a position to comment apart from saying that there is inadequate research in Ireland on causes of sight loss.

An Cathaoirleach

I have a couple of questions. I should put on the record that I am one of those on the waiting list. I went in to upgrade my glasses and a problem was identified. I was told there was nothing to worry about. It is all right for him; he is not the one on the waiting list. I suppose that is one way for many people to pick up that information.

There was an interesting point about one company having access to 1 million possible cases and how that would be really important societally for anyone doing research on it. Perhaps the HSE or Vision Ireland could engage directly with that company. There might be something there.

Picking up on something that was said earlier, why are there so few eye doctors in Ireland? Are we not training enough of them? Is there availability for training? Why is Ireland so bad? I imagine Mr. Mullaniff will probably link it to the strategy. It seems strange that we have so few.

Mr. Aaron Mullaniff

It is difficult to answer. We have looked at Eurostat for our information as to how Ireland is faring across Europe.

The IMO’s recommendation is 147 and our finding was 41. In saying that, one could look at other European counterparts and may find that the Danes, for instance, have an extremely low number of eye doctors but the majority of eye care is delivered in the community. They are engaging optometrists, orthoptists and ophthalmic technicians at the top of their profession. Because it is working there, they do not require a significant number of eye doctors. Therefore, a nuanced answer is required. There has been some recruitment within the community that has been quite successful of late. Grangegorman is an example where we have community-based ophthalmologists. I cannot answer whether those roles are less attractive. In light of the moratorium also being in place, that compounds the issue as well.

An Cathaoirleach

Is it the case that a person who is poor is more likely to have bad eyesight than a person who is wealthy? We see that with other conditions and other diseases.

Mr. Aaron Mullaniff

I can only answer that question anecdotally based on what comes through to Vision Ireland. We tend to see more people from a lower socioeconomic background come through the door, but that goes back to the fact that if a person has private health insurance and has an eye condition, or wakes up that morning with an eye condition, that person can be seen - giving the examples of cataracts, AMD or glaucoma - within a matter of weeks while we know one in three patients is waiting up to 18 months. I wish to point out that I am not aware of any other specialism that has that opportunity to avoid the condition becoming worse. We talk about 70% of blindness being entirely preventable and we need to keep that at the back of our head as well.

An Cathaoirleach

The worrying thing about the long waiting lists, particularly in the case of something urgent, is we know that the longer one leaves the condition, the more likely that it cannot be reversed. Mr. Mullaniff spoke about macular degeneration and how if a person gets the injections, it stops there. It does not go back and that is the big worry. As a committee we accept the idea that a strategy is needed. We had people in regarding hearing loss in a couple weeks ago and again the issue was there is no strategy. I just do not understand. Does Mr. Mullaniff understand why there is no strategy in relation to a response to this issue? Is there a reason?

Mr. Aaron Mullaniff

I am dumbfounded by the fact that there still is no strategy. Looking through the records, a national vision strategy was sounded out back in 2002 when this country signed up to WHO guidance on removing preventable blindness. We are now in 2024 and we have a situation where good initiatives are happening but they are all happening in isolation. We have two plans in the HSE model of eye care – the primary care service review and Sláintecare. However, the key takeaway here is that everybody talks about the “what” but nobody gets into the detail of how they will address it. I suppose this is why we are here today and coming here at some risk to do that. We want to put on the record that we are seeking to work with everybody and all stakeholders in this space.

An Cathaoirleach

I am conscious that I am hogging the meeting but I have one last question that we did not touch on and that is emergency situations. I will give an example with a kango hammer. A bit of metal into went into my eye and I nearly lost the eye. Straightaway, at that time, you would go to the accident and emergency department or the eye and ear hospital. You cannot do that now. You have to have a doctor’s note. There are major problems there. What does a person do in that situation with a workplace injury? Do you just call an ambulance?

Mr. Aaron Mullaniff

We might encounter that situation once a week, where a guy goes to work, possibly the same age as myself, is working on a construction site, married with two children, and does not plan on being blinded on that day. In the context of the eye and ear hospital, which sees the most patients and has a significant accident and emergency function, you would be triaged and be seen because it is an emergency. With support coming from the acute hospitals division, we have been in a position to imbed an eye clinic liaison officer in there. This is an interesting finding. Until two years ago, it was taking three and a half years from point of diagnosis to referral through to Vision Ireland services. We have that down to three weeks right now because we have embedded our services. To add to the individual case the Cathaoirleach pointed out, we have a dedicated team - the employment team - who would work with that individual and his employer; support his family; provide counselling and emotional support; provide mobility training to support him to get back up on his feet and get safely from A to B; and provide him with independent living skills and all the adaptions that he would need in his life to remain independent and participating in the workforce.

Senator Martin Conway

It has certainly been an interesting engagement. We should flag with the HSE the committee’s interest in seeing a national strategy for the elimination of preventable blindness. The funding should be put in place and a working group should be established to put such a strategy in place. In addition, we should get a dedicated timeframe as to when we can see this happen. HSE officials will come in with regard to Sláintecare in a couple of weeks’ time. Perhaps we could flag with them that we want some feedback and engagement on this issue.

On the eye clinic liaison officer posts - ECLOs, as they are called – I have seen that evolve over the past number of years. It started as a pilot and then evolved into, I think, 4.7 ECLOs now throughout the country. I believe the latest one has been appointed in Waterford. What is the difference between hospital groups that do and do not have an ECLO in place and the level of people who suffer sight loss ending up in a situation where they can live independent lives? How important is it to see an ECLO in all hospital groups? I ask the witnesses to talk to us about that. I was in London recently and I visited the Royal National Institute of Blind People, RNIB. Their ECLO programme is so advanced that there are even ECLOs within community and primary healthcare settings. I would like to hear feedback on how successful it has been with regard to value for money and on the gaps where there is not one in place.

Mr. Aaron Mullaniff

I will take that.

An Cathaoirleach

I am conscious of time.

Mr. Aaron Mullaniff

I can succinctly answer, if that is okay. The ECLO programme currently has six eye clinic liaison officers based at CHI Temple Street, Crumlin, the Mater hospital, Cork University Hospital, the eye and ear hospital and University Hospital Waterford. Those areas were targeted because they had the biggest waiting lists. The ECLO programme has to date supported 4,000 patients and families at the point of diagnosis. Going back to an earlier stat, individuals who are fortunate to meet an eye clinic liaison officer are the ones being actively supported in the community. That stat is about 90%. For the individuals who are unfortunate and do not encounter an ECLO - for example in the west, such as in Galway, Sligo and Limerick - my understanding is there is a risk to those patients that they may be left wondering because the referral that would normally happen as part of the care programme they have in place is not taking place. It has been the best value for money initiative that Vision Ireland, in partnership with the acute hospitals division, has partnered on and invested in over the past three or four years.

Senator Martin Conway

What is the timeframe for all areas having an ECLO?

Mr. Aaron Mullaniff

The end of 2026. We would like to see an eye clinic liaison officer in every major eye clinic in Ireland.

Senator Martin Conway

What is the profile of an ECLO? What qualification are they expected to have?

Mr. Aaron Mullaniff

Great question. All our eye clinic liaison officers are allied health professionals. The majority of them are specialist ophthalmology nurses or have other clinical backgrounds.

Senator Martin Conway

Is it possible to bring that deadline forward to the end of 2025?

Mr. Aaron Mullaniff

That is something the committee could support Vision Ireland on. We would be more than happy to meet halfway on that.

Senator Martin Conway

Great.

Deputy Bernard J. Durkan

The committee should also write to the Minister for Health to bring to his attention the discussions that took place here, the need to co-ordinate efforts to tackle the problem referred to and also waiting lists. The waiting list is a real bugbear. People should not be on a waiting list. Their condition could get worse and become irreversible in the meantime. Given that we have the expertise readily available in both the public and private sectors, why not access it?

Deputy Neasa Hourigan

I view this as the beginning and that we will get a strategy. I second Deputy Durkan's proposals on the next actions for the committee. In that context, it strikes me there are issues that I would like to put on the record. There are always cohorts that remain excluded from the eye-test scheme. People either have to have a medical card, fall under the treatment benefit scheme or hold a health amendment Act card. I would expect some sort of strategy to plug those holes in the system because, anecdotally, in my area where there is lots of deprivation, the clinical outcomes for people tend to be lower and preventable illnesses loom large.

Does Vision Ireland expect any strategy to include the supporting sectors, for example, the areas of diabetes and genetics, and the Irish Heart Foundation, which looks at eating and smoking?

Mr. Chris White

Yes. We see this as a whole-of-society approach that would include areas such as dementia-----

Deputy Neasa Hourigan

That is a good one.

Mr. Chris White

-----and nursing care. There is a very good Danish study which shows that 30% of residents in nursing homes have undiagnosed sight loss. That impacts on slips and trips which cost the health service even more money that could be mitigated against. The idea is that health promotion and other associated illnesses and diseases all need to come under one package that actually delivers. It starts with healthcare and health promotion and goes through to prevention, treatment and outcomes. They all need to be brought through that strategy approach to deliver better outcomes.

Deputy Neasa Hourigan

I thank Mr. White.

An Cathaoirleach

I thank the witnesses for their contributions. The committee will definitely follow up on some of the issues they have raised, particularly around the strategy. As members have outlined, we will bring in representatives of the HSE as part of our discussions on Sláintecare. That will inform many of our members and I am sure questions will be asked about the issues raised here. I thank the witnesses for their time.

Sitting suspended at 10.53 a.m. and resumed at 11.02 a.m.