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| Lia Nici - specialist told her she was going blind |
Great Grimsby's Lia Nici has this week made one of her most important parliamentary contributions since she became an MP two years ago. Unknown to most of her constitituents, she has macular disease which has serious implications for her eyesight. In a brave and moving speech to parliamentary colleagues, she described her condition and how she has faced up to the challenges it has brought.
I thank the hon. Member for Strangford (Jim Shannon) for securing the debate (on Eye Health and Macular Disease).
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.
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 - 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.
