Learn more
about macular
issues
Welcome to SmartSupport
Would you like to know more about your condition, the care provided, and useful links you might want to access? The SmartSupport section offers support for individuals living with visual impairment.
The expert's view
-Questions and Answers-
A busy clinic isn’t always the best place to remember all those questions you wanted to ask. So, if there’s something you’ve always wanted to know about your condition, check out this regular section for answers.
‘The expert’s view’ aims to give you the answers you need to help you to better understand and manage your condition. Specialists, including an ophthalmologist (Dr Elizabeth Wilkinson Royal Devon NHS Trust) a nurse and optometrist (Anna Hanford and Duncan Stevens, Yeovil District Hospital) are here to provide information to supplement the care that you receive in your clinic. We regret that our experts cannot give personal medical advice, but they can provide general information on a topic. Information published should not be considered as a substitute for consulting your own doctor or nurse.
Even though it might seem scary, the eye will be anaesthetised so most people will not feel the injection. Some do experience slight pressure or discomfort. You should not see the injection coming. Your consultant will be able to talk you through the process and reassure you about the procedure.
Wet AMD is a treatable eye condition, but a cure still eludes us. The most effective treatment for wet AMD is anti-VEGF injections. Depending on the drug chosen by your eye doctor, you might be able to start a ‘treat and extend’ regimen, where you receive regular anti-VEGF injections until the disease is under control, then gradually extend the time between injections, until you discover the longest possible treatment interval that still keeps the disease safely under control. Some patients need very few injections while others may need them more frequently for a number of years. In some patients the disease may become quiet, so your doctor may decide to stop the injections, but there is always a risk that it will flare up again, so we don’t consider this a cure. After stopping injections, we continue to see our patients at regular intervals for up to about two years to check for disease re-activation. If it remains quiet for a significant period of time, we can decide to stop hospital visits altogether. In such instances, we do advise our patients to attend the eye casualty if they notice any new problems with their sight.
The answer to this depends on your eyes. Everyone is different. Glasses work by focusing an image onto your retina and, if your macula works correctly, this image is then sent to the brain to be processed. If your macula is damaged, however, it may not be able to send the image to the brain.
Certain optometrists and opticians have a special interest in patients with reduced vision. In the UK, the service is often called the Low Vision Clinic. This excellent service can use a range of techniques and aids to maximise your vision and support you. You can request a referral to the Low Vision Clinic through your health care professional.
There are many different jobs in eye care. The medical staff you may have met will depend on your clinic and eye condition. Most clinics will have ophthalmic healthcare assistants in the team. They are trained to test visual acuity and eye pressures. Senior specialist nurses and ophthalmologists will also work alongside the consultants in your clinic.
You may have had scans or photographs of your eye taken. This could have been done by a senior healthcare assistant, ophthalmic nurse, technician, or medical photographer. Depending on your eye condition, you also may have seen an optometrist or orthoptist. Despite similar names the roles are quite different: an optometrist is focused on examining your eye, whereas an orthoptist is concerned with how your eyes are working together and interacting with the brain to create vision.
If you’re ever unsure what role someone has in your case, just ask and they will be happy to answer.
Your ECLO is there to provide individual care and advice about your eye condition, and to talk through any worries you might have. They can also provide up-to-date information on useful services, advise on how to lessen the impact of your eye condition on your life, and even help to prevent avoidable sight loss. Most ECLOs are supported by the RNIB, and they’re trained to a very high standard.
You can find more information about ECLOs on the RNIB website: www.rnib.org.uk/advice/eye-health/who-does-what/eclo.
This is a common concern shared by many patients and their carers. You’re not alone in thinking along these lines! Remember that the majority of clinical staff would be delighted to answer your questions as it gives you a clearer understanding which in turn makes their work more rewarding. Use the GROW model to help you think about which questions to ask.
G is for goal
Before you enter the consulting room, simply ask yourself “What is my goal?”
For example, “By the end of this consultation, I want to be clear on…” and complete this sentence.
R is for reality
Explain how your condition impacts you right now, including how it makes you feel.
For example, “I am frustrated because I cannot see my crossword clearly”. This will help your doctor get an overarching view of your condition and potentially tailor treatment and services.
O is for options
Allow your doctor to explain what the options are for your treatment, including the pros and cons of each one. Make notes and discuss this with your friends and family if possible.
W is for written information
Ask for written information that you can take away with you and read with a friend or relative. This gives you time to prepare meaningful questions to ask when you visit the eye clinic next time.
Remember, knowledge is power!
Many people presume it’s something to do with teary eyes but in fact it’s more to do with something going on at the back of the eyeball. Wet age-related macular degeneration is called 'wet' because abnormal blood vessels at the back of the eye leak and bleed.
If you think of the retina as a carpet of specialised cells, the bit you use most – the macula – wears out quickest, just like a rug you walk on. This is dry AMD. Blood vessels can then 'pop' through this threadbare bit and, when they do, their exposed nature makes them prone to wear and tear. The damage causes leakage and this activity converts the condition to wet AMD.
Diabetes mellitus is a medical condition characterised by a raised blood glucose level, which changes the circulating red blood cells and the lining of the blood vessels. Blood vessels in the retina actively try to maintain an optimal environment by providing nutrients and removing waste products. However, if the blood vessels are damaged by high blood sugar, it can alter them so they no longer operate efficiently, allowing fluid and blood contents to escape into the eye.
The macula is a very delicate structure at the back of the eye where the visual image is normally focused. When its multiple layers are disrupted with fluid and blood contents, the vision can become blurred.
If the earlier stages – such as diabetic retinopathy – are detected, then steps can be taken to slow or prevent progression, so attending routine eye screening appointments is vital. Treatment includes a combination of good blood sugar control and good blood pressure control, sometimes in conjunction with laser therapy and/or drug injections into the eye.
‘Occlusion’ is a medical term for blockage: in this case, of a vessel that takes blood away from the eye. When a central vein becomes blocked, a sudden painless reduction in vision can occur.
Blockages are caused by a narrowing of the blood vessels in the retina. The increased pressure that results can cause retinal haemorrhages and macular oedema, which can lead to a sudden but significant reduction in visual acuity. Retinal vein occlusion can also lead to new blood vessels growing in the eye, referred to as neovascularisation, which can raise pressure further, leading to a further reduction in vision and – on rare occasions – a painful eye.
Several different treatment approaches are available, including drug and laser treatments, although they don’t always return the eye back to normal. It's also important to work with your GP to control risk factors such as hypertension (high blood pressure) and diabetes mellitus.
Useful resources
Visual Acuity Tool
To help those close to you understand the potential of vision loss and the degree of change you may experience, try our Visual Acuity Tool here.
Patient support groups
There are lots of UK-based organisations that offer help and support to patients living with macular conditions and the people caring for them. Two of the largest and best known are listed below.
Macular Society
Helpline: 0300 3030 111
Email: help@macularsociety.org
Website: https://www.macularsociety.org
RNIB (Royal National Institute of Blind People)
Helpline: 0303 123 9999
Email: helpline@rnib.org.uk
Website: https://www.rnib.org.uk
PP-PF-OPHT-GB-1077 | July 2024
HELPFUL TIPS
Expert answers to your most pressing macular health questions around treatment considerations, clinic visits and terminology.
Once considered the sole domain of primary school children, the art of ‘colouring in’ has seen something of a resurgence in recent years. A plethora of books specifically tailored for adults have been filling our shelves, full of intricate monochrome designs ready to be hued and tinted by a more discerning hand. And it’s not hard to see why they’ve become so popular.
With long-established benefits to mental health, the books offer a relaxing pastime that can reduce stress and relieve anxiety. There’s something about the quiet concentration required to fill an empty panel with the colour of your choice that lends itself to an almost meditative state, in which you can forget about your worries for a brief spell.
Then there’s the often-overlooked joy of creative expression, which even those who don’t believe they have a creative bone in their body can benefit from. When you’re colouring in, the hardest part has been done for you – leaving you to express yourself without effort or judgement. All you need are the proper tools. A variety of high-quality coloured pencils are a pre-requisite. For even more impressive and expressive results, try watercolour pencils so you can blend and mix your chromatic choices.
We’ve created a design for you to bring to life. So, whether you’re curious to try or you’ve always thought the notion of colouring-in for adults to be a bit silly, we hope you’ll give it a go!
Napping can take on many forms across the world. For instance, Scandinavians have ‘Al fresco’ naps where children sleep in sub-zero temperatures. In contrast, countries like Vietnam, Nigeria and Spain regularly have siestas to help beat the midday heat.
One thing is clear – if done well, napping can have a whole host of benefits e.g. improved cardiovascular health and mood. So, how do you have the ultimate nap?
Find your chronotype: Chronotype is when your body naturally prefers to sleep. If you’re a ‘lark’ and wake up as early as 6am, your best nap time falls around 1–1:30pm. If you’re an ‘owl’ and tend to fall asleep after midnight, doze off around 2:30–3pm.
Time it right: Research on pilots shows that a 26 mins ‘NASA nap’ enhanced performance by 34%, while a Harvard study showed 45 mins can improve learning and memory. For older adults, anywhere between 20 mins and 1 hour is optimum for cognitive function (but don’t overdo it!).
Set the mood: It takes 50% longer to fall asleep sitting upright than lying down, so make sure you’re in a dark quiet space, comfortably lying down as you enjoy that afternoon snooze.
To learn more, read Take a Nap! Change your life by Dr Sara C. Mednick.
Whether you’ve recently been diagnosed with a macular condition or your condition has progressed, this period can be akin to the grieving process. This journey is different for everyone, but the tips below may help a little along the way:
Feelings of denial or disbelief are normal and common. To help reframe your thinking, one counsellor suggests asking yourself “what is denial doing for me in a positive sense?”. If you’re really struggling, seek further help from organisations like the Macular Society or RNIB.
Preparing and learning can help you feel more focused and in control. Start having adaptive strategies in place, for example, using assistive devices, seeking advice from medical specialists or joining support groups. Involve your loved ones during this learning phase, as it makes the transition period more manageable.
Develop good coping skills and techniques once you’ve adjusted. A starting point is to acknowledge what you can do and what others can help you with. A macular condition doesn't mean losing your independence or sense of self.
You’re not alone and a problem shared is a problem halved. If you need more support, contact the Macular Society on 0300 3030 111 (Monday–Friday 9am–5pm) or RNIB on 0303 123 999 (Monday–Friday 8am–8pm & Saturday 9am–1pm).
Now that you know about the benefits of celebrating, here are ways you can spark that celebratory spirit:
Create or get a gratitude journal to capture life’s little blessings. Gratitude journals act as a guide for our emotions, so by noting down your daily joys, you’ll no doubt find more ways to celebrate the everyday.
Music can be a great mood booster, so why not browse record shops for new gems or tap into pure nostalgia with your favourite songs.
Sometimes, seeing acts of kindness is all you need to feel celebratory. Which is why The Happy Newspaper can brighten anyone’s day with sweet stories of human connection.
As we’re approaching cosier nights in, spice up your evening with autumnal drinks and cocktails. Beware, you might not want to share…
Make time for you, as we all need to the chance to recharge. Do something that makes you happy, from getting a haircut, to going out for dinner or simply getting an extra pastry at the cafe.
Find your next inspiration for celebrations below:
https://bit.ly/the-happy-newspaper
https://bit.ly/bbcgoodfood-autumn-drinks-recipe
The benefits of regular contact with friends and loved ones are well documented. During the pandemic, seeing them has been more challenging. Thankfully, digital communication tools such as smartphones, tablet computers and social media can help fill the void. Whilst text messages and phone calls have their place, modern digital tools offer a much richer communication experience.
One such tool is WhatsApp. This application (software) is used by 2 billion people worldwide and it enables you to connect with individuals or groups of people in several different ways. You can message them. You can voice call them. You can even video call them – permitting you to see the person you’re talking to.
What’s more, WhatsApp is ideal for video calling with your family or a group of friends because you can have up to 8 people in a call at the same time. As well as sharing your latest news, it also lets you share your photos and videos.
WhatsApp uses your mobile phone number but won’t use up your data or minutes allowance, provided you’re connected to the internet.
For more information on WhatsApp, visit:
bit.ly/ageuk-whatsapp or bit.ly/agespace-whatsapp-guide
Experts say that the key to starting a rewarding routine is to build on something positive you currently do. The activity doesn’t have to be special – it’s been shown that regular attention to the activity itself can provide a sense of stability and well-being.
Sustaining routines depends largely on learning and remembering patterns. Below are some ways to jog your memory about that jog in the park or to remind you to do those mind exercises.
Digital memory aids
Set alarms on your smartphone to remind you of routines starting at specific times of day
Set calendar reminders on your smartphone for routines that happen at no specific time of day
Create lists or reminders on your computer or tablet that you can print out
Analogue memory aids
Write reminders in diaries, on calendars and on whiteboards
Place handwritten Post-it Notes strategically around the house
Create a mnemonic, such as this one for remembering the order of compass points: Never Eat Soggy Wheat
Ask relatives or friends to both remind and encourage you
For more on mastering your memory, visit:
www.magneticmemorymethod.com/how-to-remember-things/
It may sound a bit of a stretch, but your wellbeing this winter could be affected by the cleanliness of your windows. Grime on your glazing can block significant amounts of stimulating sunshine. Therefore, cleaning your panes inside and out every few months will maximise the light flooding through, allowing you to reap the benefits. If you live close to a busy road or in a windy area, you may need to clean them more frequently.
Keeping your panes unobstructed by ornaments, hard and soft furnishings etcetera, will also ensure those beneficial beams enter unimpeded. So, keep your windows clean and clear for the sake of mind, body and the spectacular spectrum waiting to infuse your home.
Top tips for tip-top window cleaning
Clean windows on a cloudy day so they don’t dry too quickly and become streaky
Work from the top of the window down to avoid undoing your good work as you clean
After cleaning, polish windows with scrunched-up newspaper to make them gleam
Applying rain repellents to glazing helps keep it cleaner
for longer
For more tips on cleaning windows, visit:
www.saga.co.uk/magazine/home-garden/homes-interiors/
how-to-guides/how-to-clean-windows
