“We are laser-focused on our investment in the research”

Here, he speaks about joining the charity at the late stages of the pandemic, Fight for Sight’s responsibility towards its researchers and donors, and how his personal circumstances drive his mission forward.

Could you tell OT how Fight for Sight has been affected by the pandemic? Were research activities affected?

The charity is in good shape coming out of COVID-19, but the personal impact on staff is obviously there. We’ve had to change our way of working quite dramatically.

We made decisions long before I was here to protect our grant spend and to make sure the relationship we have with the scientific community, the researchers and the PhD students we sponsor, was held high. It’s the charitable cause of the organisation. Sacrifices have been made to achieve that. In many ways, the staff have had to pull out all the stops to make sure we’re positioned to do that. So, we’re really proud to have taken that decision for our charitable causes. It’s what we’re here for; we exist to serve that function. We feel we’ve done our best to fulfil that.

There’s been a lot of innovation, particularly in the world of optometry: the immense breakthroughs that are coming through around artificial intelligence and the potential of optical coherence tomography scanning and retinal photography, and how data assists with diagnostics and early identification of disease and patterns of deterioration of eye health. All those things have still gone on.

There’s been a lot of innovation, particularly in the world of optometry

We are proud of what we’ve achieved through lockdown, in keeping our grant programme together. Our grants award panel meets this week (the second week of February), to further consider applications we’ve received. There’s some brilliant work going on that I’m proud for us to be part of.

But we have to look to the future, in how we are going to fulfil our role in making sure the science advances and that we work as part of the community around the preservation and protection of sight and the prevention of eye disease. I think there are some fundamental partnerships emerging, and opportunities to work together. I look to the role that optometry is increasingly playing in the technological environment and the advancement of optical science and the way that fits into diagnostics. The ability to draw patients and disease experience within the community into trials and into the development of science – I think there are exciting things to do there.

The Fight for Sight that I’ll be leading, with my brilliant colleagues and amazing sponsors, will be looking to actively partner with not just disease science, but also the optical sector and government policy, and other colleagues in adjacent sectors – for example the support sector. We've all got a role to play.

If you think about the treatment of COVID -19 and the vaccination science, you can see how, by necessity, that was able to truncate processes and get through testing, for us to understand how safe these treatments are, and for them to get into the hands of the nurses that run the vaccination centres. We should stand back and look at what that teaches us about what’s possible with science and with technology, taking things forward. It’s about saying, “look at what’s been possible in the health economy in the UK, and in the way that we process the development of science into treatment for disease. How do we learn from that to make sure that we are preserving the health of the nation and tackling disease as it occurs?”

Eye health is important for all of us, however much you can see

I really want us to start the conversation. And I think optometrists, along with ophthalmologists, are critical, because they're seeing the community every day. They are often the outreach into communities. I’ve experienced that myself. I’m registered blind, but I still go and get field checks done, and my eye pressure tested. Eye health is important for all of us, however much you can see. That’s all done in optometry settings now, and fits into a working day. If you are, through optometric practice, able to connect with clinical science, that’s a brilliant way of us starting to think about how we understand what’s going on in the eye health of the population and applying that to diagnostics and scientific development.


We have a core mission, and it’s very simple. We have a trusted relationship with sponsors, who contribute to us being able to make these incredible grant investments into the development of science, where we can invest in things that you can’t really make a commercial case for because they’re at such an early stage. We’re able to make those investments. We can back talent where it’s difficult for them to get financial backing to progress their ideas into PhDs. That's the core and heart of what we do. But we're going to be bigger in articulating that message, and open to how we build alliances for change.

Could you say a little bit about what it has been like for you to join Fight for Sight at this stage of the pandemic?

For the past four years, I’ve been at the Royal National Institute for Blind People, on the executive board as a director and leading part of the COVID-19 response. So, throughout COVID-19 itself, I was working on the support side. Never in my career in eye health and sight loss did I expect to be on the phone to Red Cross to talk about how we could organise food supply for people who are visually impaired in the UK.

My experience is in no way special, but I’m coming to Fight for Sight after what I’ve personally experienced as a quite horrific time. I couldn’t go to my daughter’s appointment at Moorfields Eye Hospital when she was told she was going to go blind. I had to listen to her sobbing down the phone, telling me that. I wasn’t at a party, let me put it that way. It’s profound, the way this has impacted all our lives.

In terms of Fight for Sight, I joined at a time where we’ve weathered the storm. I’ve come to an organisation that’s ready for the new, where the opportunity to act in support of the sciences is there, and the opportunity to grow the sector as well as our own organisation. By grow, I mean raise investment and advance the processes that serve the science to address eye disease and preserve sight. Like all teams, I think we’re a bit tired; we haven’t seen each other for a long time. I’ve got a job for my team, in how I articulate what we’re setting out to do, to properly capture a sense of what's possible.

Never in my career in eye health and sight loss did I expect to be on the phone to Red Cross to talk about how we could organise food supply for people who are visually impaired in the UK

We’re not quite out of COVID-19 yet. I think as an organisation, we’re going to stay working flexibly in the long term. The big worry will be how we get teams working together. That’s not just within my organisation; it’s between us and our grant recipients and the partnerships that we work on. But I'm optimistic about it, because we’ve all had to learn how to do that. As things get more comfortable and people feel more relaxed about getting together, I can see the opportunity for us to convene around what we want to get done, and how we’re going to plan things.

As ever in life, I feel fortunate to be here at this time. With my daughter’s diagnosis this year, my own sense of frustration is that the eye research is not further on. I’m conscious that, since I was diagnosed in the 70s, we’ve heard that “within 10 years this” or “five years that” – well, that's 45 years ago now. There’s an obligation on us and our partner organisations to articulate the reality of what’s going to be possible, and make sure our investments are driving forward the science that people with eye disease hunger for.

Having worked in the support sector, I don't think that there are any contradictions between being visually impaired and wanting treatments to advance, and wanting there to be equality for those people, like myself, who have acute sight loss. I think there's a rightful place for research into eye disease. It’s already well recognised in, for example, the cancer or stroke sector or with diabetes or Alzheimer's. There's no contradiction between pushing the science forward, making those investments, driving forward policy, and support and inclusion for people.

There’s an obligation on us and our partner organisations to articulating the reality of what's going to be possible, and make sure our investments are driving forward the science that people with eye disease hunger for

There’s work to be done to get that at the forefront of thinking, not just from the charity side, but from our overall view of optical health and the way the system operates. Fight for Sight will take its rightful place in that. We are laser-focused on our investment in the research. Our job is to fund the science, but also to make sure that we sit appropriately and with a sense of commitment to playing our role in the partner community.

What projects are going to be funded by Fight for Sight this year?

We have 117 live grants, as we speak. There are around 80 that we’re looking at in addition to that. They go through a funding process that’s independently verified. Within that we're currently active in all the key disease areas, particularly around blindness, but also with glaucoma, macular disease, cataracts, and various other things that have a general impact in the population.

The funds that we have available, and the other funds that are available from our sector, add up to about £10 million a year, which, when you think of the prevalence of eye disease and problems of visual acuity in the population, is quite small compared to other condition areas. We have to ask ourselves carefully how we make our investments respond to the key challenges for the advancement of science, as we set our strategy going forward.

We’ve got a huge body of evidence that we've funded, and scientific advancement and talent that we’ve invested in

We expect, in May, to present the findings of our insight work and the development of our new strategy to our board. Our forward strategy will launch in September. Fundamental to that will be how we take the programme that we have available to us and make sure investment is structured so that we get impactful and sustainable activity in the scientific sector. All the things we invest in must draw on talent, making sure that innovation, where it has the potential to save sight, is driven forward by investments we can make that other state or commercial organisations would find difficult.

Part of that is about Fight for Sight not just being a grant funder of good ideas, but also taking a view of its responsibilities and the cumulative effect of its investments over time. With 117 live grants now, you can imagine the hundreds that have gone before that. We’ve got a huge body of evidence that we’ve funded, and scientific advancement and talent that we’ve invested in. If we look forward, as we put our plan together, and then start to make those investments and pursue that strategy, we have to be clear that in three years’ time we know what we're aiming for and the difference we want to make.

We want to communicate to people experiencing eye disease where the science is, in a way that’s tangible, but also appropriately describing the possibilities and not giving false hope

It’s a huge scientific area. So, we’ve got a job making sure we get that right, that it is equitable; that the scientific community have bought in to our role. They’re not just recipients of grants, they’re significant stakeholders, and we need to serve that community.

There’s another side of as well. We want to communicate to people experiencing eye disease where the science is, in a way that’s tangible, but also appropriately describing the possibilities and not giving false hope. That's quite a difficult narrative to put together. I know myself: everything that looks like it might tell me that my daughter can be cured, I’ll get excited. I’ll read it, and I’ll want to believe in it. It’s important that we responsibly communicate what's possible with the science, and that we honour the trust. Many of the people who donate to us have people in their families, or are themselves, experiencing eye disease. We have to honour the loyalty they show us. The commitment they make to help us make this work is phenomenal. I personally feel a very deep responsibility to make sure we articulate the science in a way that's meaningful but does not make false promises. If there’s any hope we engender, it needs to be built on the truth.

Was there anything else you wanted to say about the sustainable strategy specifically?

Like all modern charities, we need to make sure that we’re responding to the wider community and its diversity. We’re not trying to build a machine that does anything other than target resources to science that’s going to take us forward. But that affects all sections of the community, and that’s something that I think all sections of the community have an interest in. It’s not always been easy for organisations to respond to that, but for me, it’s a fundamental. Everybody who looks at what we’re doing needs to see something of themselves and their aspirations for their families in us. That’s very important. Sustainability for me is more than whether we can raise more money to invest into the science. It’s also about doing that in a way that’s inclusive to the community that we’re serving and the stakeholders that we have, and it’s meaningfully sustainable in terms of the environment and the way we work.

Sustainability for me is more than whether we can raise more money into the science. It’s also about doing that in a way that's inclusive to the community that we're serving

I very much see the opportunity that comes from flexible work. We’re thinking about how we organise ourselves to minimise our carbon footprint, which might sound a bit odd alongside our mission, but my belief is that if we take our social responsibilities very seriously, we'll produce the best possible outcomes we can in the mission of the charity. That will make us a more sustainable organisation financially as well as environmentally, and also contribute to building a more inclusive and productive place for us all to live.

Do you have strong relationships within the Government?

Everything we do focuses on the mission of our charity, so we’re not pursuing government relationships for the sake of having them. Marsha de Cordova (the Labour MP for Battersea) is an incredible advocate for eye health in general. Having eye disease herself I think really gives power to the way she lands the point.

There’s a lot we can do together to start to raise the profile of issues and opportunities relating to eye health. We’re particularly interested in speeding up the regulation process and making sure that, as we saw in COVID-19, treatments can get to patients as quickly as possible to protect their sight. We have a particular niche in that, but we are keen to work alongside other colleagues. We’re fortunate as a charity that we’ve got good relationships with influential figures in Parliament and Government, so it’s a comfortable thing for us to do. One of the things we’re going to be thinking about in the next few months is how we approach things that need to be raised with the Government around our particular interests, and how we might achieve that efficiently.

How do you get governments and stakeholders to understand the importance of having eye care at the top of the agenda?

The point about sight loss increasing towards 2050 is that other comorbidities also do. It’s not the only major trend. It relates broadly to the ageing population too. The pressures that we're feeling now aren't going to go away without significant intervention.

How do we get eye health up the agenda? We need to start to find a shared narrative and to speak, where we can, with one informed and clearly communicated voice. From experience in the last few years, there’s a degree of segmentation in between the health, clinical and charity sector. But even within those sectors, there are different voices competing to be to be heard. Often that’s understandable and legitimate. I’m not criticising the nature of doing business in this environment. But if we hold in one hand the need for us to build sustainable organisations and in the other the need to impact the nation’s eye health, it cannot be beyond those of us in leadership to find a way of pulling those things together. I think the charity sector has started to make some moves in that space, but it’s going to be slow.

How do we get eye health up the agenda? We need to start to find a shared narrative and to speak, where we can, with one informed and clearly communicated voice

Look at the work of the National Outpatient Transformation Programme, and the considerations they’re having to make on the backlogs in eye health and how you remodel pathways. I think the charity side has got to pull its weight. I believe our organisation will be sustainable and have its impact through research if we are transparent, open in our partnerships, and looking for opportunities to serve the wider improvement and understanding of eye health, and the wider focus on that from the Government, to take it up the agenda.

I think that’s the way forward. We do it together. Whilst that might sound naive, I haven’t seen any other description of how we might do that that seems deliverable. To get there, we’re going to have to perhaps make some compromises and find new ways of operating. I won’t have a huge policy function chasing government ministers, but I do have an agenda that's based on advancing the science. There must be a way of us working together to build influence.


We’ve been through COVID-19, and we’ve learned a lot about resilience and flexibility, and how to keep businesses going. It’s a shuddering thought that businesses – optometrists in practices on the High Street – were under those kinds of pressures, and still serving their customers and patients. How do we put that to good effect? My view is that we take a deep breath and step forward into new approaches that are perhaps going to be tough to realise, but the rewards will be substantial.

All I want to see is that the science advances, that people that are impacted by eye disease have a prospect of that being addressed and treated, that in the wider population people take their eye health seriously, and that diseases that can be stopped early are caught.

It’s not just about the meetings we might have or the partnerships we might form. It’s also about consistency in the way we plan as organisations, and understand what we’re setting out to achieve. I think that we could do with reaching for an approach that’s perhaps a little bit more formalised and properly networked, with different bits together. I don’t have an answer as to how to do that. But I know I’m here, willing and able, should we get the opportunity to work that way.

How has being directly affected by retinitis pigmentosa and having eye disease in your family affected your career and your vision for the future of fighting sight loss?

My outlook on it has changed personally since my daughter was diagnosed. Every generation in my family has gone, and is going, blind. Moorfields Eye Hospital has our family tree back to the 1850s in Bethnal Green. I’m very lucky that I’ve got a lot of family and friends who have gone blind and always worked, but that didn’t make it easier when I lost my eyesight. In fact, I thought I knew everything about it until it happened. And then it was big.

I have felt, in my career, very passionate about equalities in general, and challenging discrimination. The sense that the science and the narrative around it needs to advance has been there all my life. What is exciting for me now, having spent 10 years on the support and policy side of the sector, is moving into being able to address what, for me, is at the root of it.
 
What I’m seeing in our grant investments and in the science has such huge potential, but the pace is limited by factors often outside the science. That’s something that, in this role, I can have an impact on. But the one thing I know fundamentally is I can’t do that on my own. Being blind, I’m going to feel certain aspects more acutely. I might also have an ear for the tone of language that is inclusive for people who are visually impaired. But at the end of the day, I’m here for my track record of growing major programmes, moving them to a modern setting, contextualising them, and delivering income. It’s a bonus that I can’t see. There’s a professional job to do here. I’ve got a very diverse team: diverse in talent, background, and outlook, that’s going to help us to deliver that.

You have been brought into drive Fight for Sight to the next stage of its development. How do you see that unfolding?

The first thing we need to do is make sure we can guarantee our grant programme. It’s critical that we do that, and build and enrich our relationship with the sponsors and the brilliant community that supports us. We need to consolidate that and make sure that all of us have buy-in, and we’re honouring the commitments people make when they make the donations. That’s the fundamental first point.

The second point is to look at what more we can do within our existing resources to advance the science and to build that community to help us make this whole project work. The third way is the role we play nationally and within our sector to shape the things that are going to create an environment for the sciences going forward. We're in the business of preserving sight through that route.

But over and above that, we have responsibilities for how we’ll lead appropriately and by consent in the sector, start to look at opportunities for partnership, and do more to look at the opportunities for the industry and with the Government. It’s in my hands to do that for our organisation.

The Fight for Sight chair and trustees are absolutely committed to this organisation, properly fulfilling its potential as a national body. I don’t see us as being in competition with other charities. I see us as being in alliance and partnership, and that’s the way we’ll build going forward.