Eye Health and Macular Disease

Caroline Nokes Excerpts

Tuesday 11th January 2022 Westminster Hall

[Caroline Nokes (in the Chair)]

Before we begin, I remind hon. Members that they are expected to wear face coverings when they are not speaking in the debate. This is in line with current Government guidance and that of the House of Commons Commission. I also remind you all that you should have a covid lateral flow test before coming on to the parliamentary estate, and give one another plenty of room when entering and leaving the Chamber. I call Jim Shannon to move the motion.

[Jim Shannon (Strangford) (DUP)]

I beg to move,

That this House has considered the matter of eye health and macular disease.

Thank you, Ms Nokes. This is a very important issue. I suppose all issues are important, but this one is very important, as I shall illustrate in my speech. I place on the record my thanks to the Backbench Business Committee, as always, for agreeing to schedule this debate, and to the Macular Society, which is working with Fight for Sight and Roche pharmaceuticals in the Eyes Have It campaign group—we say “The Ayes have it” in the House many times, and the eyes have it literally this time—for its support in securing the debate.

I thank all the hon. Members who are here for taking the time to discuss this important issue. I have spoken to some of them, and they will all bring their individual comments and contributions to the debate. I am very pleased, as always, to see the shadow Minister, the hon. Member for Denton and Reddish (Andrew Gwynne), in his place, and it is a particular pleasure for me and for all of us to see the Under-Secretary of State for Health and Social Care, the hon. Member for Lewes (Maria Caulfield) in her place. We look forward to her response as well.

As someone who had glasses from a young age—eight years old—and who has had diabetes for the last 15 years, I can say that eye health is a matter of great personal import, as well as a constituency issue that affects a huge swathe of my constituents. Every day, 250 people start to lose their sight. At least half of all sight loss is avoidable. That is the key issue in this debate, because if sight loss is avoidable, the question is what steps we take to ensure that people do not lose their sight. With that in mind, I look forward very much to the Minister’s response.

More than 2 million people have sight loss, and 350,000 people are registered blind or partially sighted. Age-related macular degeneration is the leading cause of blindness in adults, leading to 50% of blindness. The hon. Member for Great Grimsby (Lia Nici), when we spoke last night, told me that she herself has this. Therefore the contribution from the hon. Lady, out of everyone in the House, will be particularly poignant and relevant to the debate.

I was shocked to learn that more people in the UK are living with macular disease than with dementia. We hear lots of stories—I am not saying we should not, by the way—about dementia, but just to give an idea of the magnitude of the subject of this debate and its importance, there are more people with macular disease than there are with dementia. Macular disease is a particular risk for the nearly 4 million people in the UK who, like me, are living with diabetes. I have long been instructed that poor control of blood sugar and insulin levels can damage the blood vessels of the eye, causing fluid retention in a condition called diabetic macular oedema. About one in every 14 people with diabetes develops DMO, which will result in a noticeable loss of vision.

Why should this topic be flagged as urgent for every Member of the House? Well, the issue is not just the physical health problems but the financial costs. The cost of eye conditions to the UK economy has been estimated at £25.2 billion per year, and without action, that is forecast to rise to £33.5 billion per year by 2050, so there is clearly a financial equation to this issue. It is about prevention and about reducing the costs for the health service as well. But cost is not the only important factor. The fact is that it is an awful thing to lose one’s sight and—for many people—one’s independence. Members across the House will know—perhaps through their own experiences or those of a loved one, or perhaps through the stories shared by their constituents, which we see in our constituency offices each and every day—the impact that sight loss can have. Loss of vision can have an impact on quality of life by undermining patients’ ability to live and work independently. For example, I recently met a member of the Macular Society, Bryan, who was diagnosed with age-related macular degeneration in 2012 and told me that something as simple as catching a bus can become very challenging.

Sight loss can also have a profound impact on emotional wellbeing. Sight is considered by many people to be the most important sense. Patients with macular disease, who are at risk of losing their sight, report feelings of isolation, shock, anger, anxiety and hopelessness. Those feelings may grow as individual sight deteriorates, with patients increasingly cut off from the world as they had previously experienced it. Losing one’s eyesight makes one particularly lonely; those who lose their eyesight do not know what is happening around them. I often think that, of all the senses that one could lose, eyesight is—with no disrespect to those who have lost other senses—the most important.

At the same time, macular disease can put pressure on the family members, friends or neighbours who act as carers for people with macular disease. This means that, although macular disease is more common among older people, its effects can be felt across the working-age population as well. Such feelings are understandable.

Without treatment, sight loss can be rapid. For example, wet age-related macular degeneration—wet AMD, where blood or fluid from abnormal blood vessels leaks into the macula, causing scarring—can cause significant sight loss within a matter of weeks. That is why this is so urgent. It is vital that patients are diagnosed and treated as quickly as possible. Can the Minister tell us what has been done to achieve the early diagnosis of AMD? It is so important that sight loss is addressed urgently. Other hon. Members in the debate will reiterate what I am saying shortly.

--- Later in debate ---

[Lia Nici (Great Grimsby) (Con)]

I thank the hon. Member for Strangford (Jim Shannon) for securing the debate. As he alluded to earlier, I have macular disease, and I want to speak about what macular disease is and its effects.

When I was diagnosed 20 years ago, my eye specialist told me that I was going blind. Anybody who does not really understand about going blind might think that one day the lights will switch off, but that is not actually the case. The macula is a particular part of the retina that deals with detail. Over time, it becomes very difficult for people to see in the centre of their vision; there is difficulty reading, recognising faces and writing. It poses a number of challenges, but there is life after a macular disease diagnosis. Hon. Members will notice that I am using my iPad—technology performs a huge service to people with issues such as mine.

I would like to talk about some of the causes. We have talked about diabetes and age-related macular degeneration, but it also happens to younger people. It happened to me when I was young, as secondary to high myopia. Councillor Daniel Westcott, a colleague and constituent of mine, was diagnosed at the age of 17 with Stargardt disease, which is a loss in the macular area of the eye. Despite it ending his career as a plasterer—he could no longer see enough detail—he trained as a teacher and is now working as both a personal trainer and a councillor. Those people who experience the shock and concern of being diagnosed can certainly still have a very positive life that contributes to society.

I want to talk about the importance of going to the optician. We have talked about ophthalmology, but as the hon. Member for Strangford said, it is going to the optician regularly that spots these serious issues. With the retina in particular, speed is of the utmost importance. I went to my optician because when I was reading I noticed that the lines on the page of my book had a dip in them. I went to the optician not thinking anything of it, but it was actually the start of the back of my eye bleeding and causing a bubble. Imagine looking through a window through a raindrop—that is the effect that starts to happen. If anybody hears of someone having that kind of issue, they must go to their optician, who will give them an urgent referral to the hospital. If they cannot get to the optician, they should go to accident and emergency straight away and explain; they will then get straight in to the eye specialist. My constituency is Great Grimsby—that is where I live—and Diana, Princess of Wales Hospital has a fantastic ophthalmology team. Mr Kotta, Mrs Bagga and the whole team are fantastic; the nurse specialists really are specialists, and they are fantastic at care and treatment.

It is incredibly important that we support technology companies being able to continue helping with this. In my case, 20 years ago there was no treatment for my eye condition. However, when it went into my second eye, there had thankfully been a lot of development in technology. I had 11 injections directly into my right eye in order to save my sight. Companies such as Regeneron and Novartis have produced medicines that go directly into the eye. If they had not been available, I would now be registered blind. The effects of those 11 injections meant that my eyes improved five lines on the acuity test. That is quite amazing, and it allowed me to continue to drive. I obviously still have some issues, and colleagues will know that they have to prod me because I do not always recognise them—especially on a dark night. Stem cell research is the real pinnacle, and will hopefully mean that people’s eyes will work better for them in the future.

I want to highlight computer technology, and in particular Apple computers. Twenty years ago Apple had the foresight to ensure that accessibility was built into their operating systems. If it was not for Apple’s technology and foresight, I could not have continued in my previous job of teaching, video production and camera operating. When a camera operator is told that they are no longer going to be able to see, that can be a little bit of a problem. Computer technology allowed me to continue to be able to do what I do, and Members can see that I am working with large text today. It is absolutely vital, and I say to other producers of computer operating systems and programming systems that they should really think about simple things to allow people to zoom in and to magnify. All those things are now on the market and they really do make a difference to people’s independence.

If someone does not lose all of their sight, it is very difficult for people to understand. They do not walk into things, and their peripheral vision is fine. It is the detail that is the problem. For a lot of people, that affects their independence. They can no longer read a telephone bill or look at something on the internet. If they love reading, they can no longer do that either. Writing is also affected because they cannot see what they are doing. There is much hilarity in our household when people say that I should become a professional prescription writer because they cannot read anything that I write any more.

Most important, for me, is the role of employers. When I was first diagnosed, my public sector employer—whom I will not embarrass by naming—was appalling. They were not supportive; in fact, they went into panic mode. I would like to say to employers that when somebody comes to you to say that they are having eye problems, do not go into panic mode, because they can continue to be a positive, important part of the team. It just means that they will need slightly different ways of working. I continued to run a television station, keeping a close eye on my editors and camera operators, who always used to say that I may have eye problems, but I could still see their mistakes.

The Royal National Institute of Blind People in particular was fantastic. Its staff will come and do a free assessment in the workplace and offer advice to the employer. I also thank the people at ACAS because when my employer was being downright dirty, they were fantastic in advising me in what I was able to do. Rather than people with eye or macular disease having issues and becoming vulnerable, they can actually become a positive and important part of the team—even more so than before their eye problems. I send this message out to employers: embrace the team member who has these issues, because they will continue to be a fantastic part of the workplace.

[Caroline Nokes (in the Chair)]

I thank the Member for that contribution. We now come to the Front-Bench spokespeople.