Macular Week 2018: What is Macular Degeneration?

Let’s start this week’s blog with a short biology lesson.  When light enters your eye and is directed through the lens, it hits the retina at the back of your eye, which then sends signals to the brain where this information is turned into images.  The macular is a specific part of the retina at the back of the eye, only about 5mm across, which is responsible for all of your central vision and colour vision, as well as picking up detail.  This is the area of the eye that we use for tasks such as reading and recognising faces.

Macular disease is currently the biggest cause of sight loss in the developed world, with the most common form of this being Age-Related Macular Degeneration (AMD).  Degeneration of the macular is usually part of the general aging process of the body, in the same way as our hair may become grey.  There are however other causes of macular degeneration such as retinal haemorrhages or congenital impairments.

AMD results in a loss of central vision, and means that what you see when you look straight ahead seems blurry.  It doesn’t affect peripheral vision, so on its own will not cause a total loss of sight.  It can however still significantly affect people’s lives, with those who have AMD finding it difficult to drive, read and write, or distinguish a face against a background.

Macular Week, run 25 June – 1 July by the Macular Society, is an opportunity to raise awareness about and raise money to help find a cure for macular disease.  The focus this year is on how important it is to get regular eye tests.  Whether you’ve got a pre-existing eye condition or not, regular eye tests (at least once every two years) are a vital health check for everybody, as they can often detect the early signs of eye conditions before you notice any effect on your sight.  During Macular Week, you can download a free eye test voucher from the Macular Society’s website, where you can also find out more about how you can get involved with what’s going on during the week: https://www.macularsociety.org/macularweek.

ELVis will be getting involved by attending an event held by the Macular Society in Barking and Dagenham on 3 July.  This will held 10.00-15.00 at the Ripple Centre, Ripple Road, Barking, IG11 7PB, and will be an opportunity for people with any form of sight loss to have a look at a variety of daily living equipment, to learn about other local sight loss services (including ELVis), and to attend a meeting of the local Macular Society, where they will talk about the latest research into macular conditions.  We look forward to seeing some of you there!

If you’re interested to find out what it might be like to have Age-Related Macular Degeneration, ELVis has just produced a video along with Waltham Forest Council which simulates the effects of AMD, as well as other eye conditions.  You can find this on our YouTube channel: https://www.youtube.com/watch?v=YbkSl5OoZh0.

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Photo of Macular Degeneration simulation – a grey spot in the centre surrounded by blurriness.

Written by Nicola Stokes, ELVis Service Development and Delivery Manager

 

 

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Are Establishments, Venues and Places of Interests Accessible for Visually Impaired People?

As part of my role at ELVis as an Activities Coordinator, I liaise with museums, theatres, leisure facilities, exhibition centres, galleries and other places of interests that I organise outings or activities for our vision impaired members.

Many of these venues have a fantastic accessibility procedure.  For example, they may offer audio headsets, a guided tour, a touch tour, an object handling session, a facility where guide dogs can be looked after and so forth.  On the other hand, I have been shocked to discover that well known establishments have little to no accessibility procedures at all.  In these situations, I have worked alongside their access/learning group advisor on how experiences for blind and partially sighted people can be enhanced to enable an enjoyable visit, as a planned outing through ELVis or when they visit by themselves.

In my experience from working with these organisations, I have discovered a lack of awareness- they do not know what access provisions need to be in place to make their services accessible.  Therefore, I’ve initiated discussions around access for disabled customers to be made available.  A recent example of this was a theatre in East London that didn’t have any idea what they could do to increase accessibility for visually impaired people.  I went to have a chat with the theatre manager, and after a few months later, when I took a group of members along to watch a show, we were allocated seats at the front of the stage next to the toilets.  Moreover, the actors came down after the show to meet our members and even let them have a feel of their costumes and props.  The provision of access and support on the day marked an important step forward for the theatre in regards to catering for disabled people, and I am continuing to work with them so they can learn more about how best they can support their blind and partially sighted guests.

If you have visited a venue that wasn’t accessible or have avoided visiting a venue due to lack of accessibility, then why not get in touch with them!  Changes only happen when organisations know there’s a need for change.  The more people the better because more voices can make a difference!

I believe it is important that all venues are made accessible to enable independence, confidence and equal opportunities for people living with sight loss.

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Photo of Bhavini and some of the ELVis service users posing with an actor at a recent ELVis trip to the theatre.

Written by Bhavini Makwana, ELVis Activities Coordinator

 

 

 

Assistance at Train Stations – is it Needed?

This question has recently come up in various conversations with blind and partially sighted people.  With all things vision impaired related, there is no right or wrong answer!

Let’s face it, sometimes life can be stressful enough without worrying about how to get to the train station platform, or in my case if I’ll end up on the correct loop of the Central Line on the London Underground.  I don’t particularly have a desire for ending up somewhere I don’t need to be!   At times, the journey to the station itself can be taxing enough and it is reassuring to know that assistance should generally be available once at the underground station if I require it.

Around 13 years ago I certainly wouldn’t have classed myself as an independent traveller, but knowing that assistance would be available most definitely helped build my confidence to venture out.  I’ve recently been asking myself would I have plucked up the courage to travel on the underground had there been no assistance available?  Based on how little confidence I had, the answer is probably not.  However, would I continue to use trains if assistance wasn’t available now?  Absolutely yes!  I can’t imagine giving up the freedom of everything I do, from work to socialising.

I still remember my first experience of not being met off the train at Liverpool Street Station.  I felt so distressed that I just wanted to cry, which wasn’t the most sensible approach, but panic took over and logic went out the window!  With my more experienced head on, I now use other senses such as hearing what direction people are walking, listening for sounds of the ticket barriers beeping or escalators, etc.  Smell is another equally valuable sense as the smell of coffee is generally, but not always, a good sign that you are heading towards the exit, or if you know the station it can help you get your bearings.  Nowadays, if I’m not met off the train then I’ll grumble about it without the feeling of sheer panic taking over and will happily ask a member of the public to point me in the right direction.  There is no denying that things do go wrong and many times I haven’t been met off the train, or had to wait ages for assistance.  However, I am most definitely grateful that the service exists.

The countering view by some people is that many other countries do not offer the service we receive here in the UK and blind and partially sighted people manage, so why couldn’t we cope?  Just because people get by, does it mean they wouldn’t want the service?

I believe it is better to have a service than not have one at all, as it gives people the choice to use it or not.

It would be great to hear other people’s thoughts on whether they think staff assistance is needed at train stations?  Please leave a comment and share your own personal experiences and stories of how you started to use trains.

Photo of Masuma using her cane stepping of a London Underground train.
Photo of Masuma with her white cane stepping off a London Underground tube train.

Written by Masuma Ali, ELVis CEO

How to Avoid Being the Victim of Fraud

Recently, a group of vision impaired people living in Redbridge received an informative talk from the local Metropolitan Police team.  The police officers spoke about some of the scams currently operating in the UK that target all people regardless of age, background and income levels.

Here are 10 Golden Rules to remember to help you beat the scammers and protect yourself from fraud.

  1. Be suspicious of all ‘Too good to be true’ offers and deals. There are no guaranteed get-rich-quick schemes.
  2. Do not agree to offers or deals immediately. Insist on time to obtain independent/legal advice before making a decision.
  3. Do not hand over money or sign anything until you’ve checked the credentials of the company or individual.
  4. Never send money to anyone you do not know or trust, whether in the UK or abroad, or use methods of payment that you are not comfortable with.
  5. Never give banking or personal details to anyone you do not know or trust. This information is valuable so make sure to protect it.
  6. Always log on to a website directly rather than clicking on links provided in an email.
  7. Do not rely solely on glowing testimonials: find solid independent evidence of a company’s success.
  8. Always get independent/legal advice if an offer involves money, time or commitment.
  9. If you spot a scam or have been scammed, report it and get help. Contact ActionFraud on 0300 123 2040 or online at actionfraud.police.uk.  Contact the Police if the suspect is known or still in the area.
  10. Do not be embarrassed to report a scam. Because the scammers are cunning and clever there is no shame in being deceived. By reporting you will make it more difficult for them to deceive others.

In addition, important information by the RNIB regarding cash machine crime prevention; firstly, only use a cash machine if you feel comfortable with your surroundings.  Secondly, make sure that you’re happy with the machine itself, which you can do by feeling where your cash will be dispensed to check if it is free from any obstructions.  Remember, if in doubt, use a machine inside a bank branch or retailer as it is less likely to have been tampered with.

Thank you to the Redbridge Metropolitan Police for giving a talk to our members on how to keep safe and scams to be aware of.

Written by Ray Calamaan, ELVis Communications Coordinator

Why I Like Volunteering for East London Vision Charity

Some of us reach our ambitions, others don’t and some people have no idea which path to take but are looking for fulfilment.  As I wandered along my path looking at various side tracks I knew I wanted something that satisfied my need, as well as being of benefit to others.

I had worked in various professions, but I hadn’t found the one thing that set my soul on fire.  Then a miracle happened which gave me hope, I stumbled across an organisation called East London Vision looking for volunteers.  No matter how young or old you were you could help someone.  Skilled, unskilled you were offered training and there were a wide variety of causes to choose from.

As I have a disability that worries me, which is my failing eyesight, I was scared about how I would cope, but I feared even more the thought of becoming useless.  So I decided to apply as a volunteer without hesitation because I wanted to learn about life with no vision and to enhance my skills.  I had stereotyped visually impaired people as lifeless like vegetables, unable to do anything or move around, and wondered if I might get bored helping them.  I remember my first invitation to an event which was an awards evening.  I thought it was going to be a very formal affair and boring, but surprisingly it wasn’t! I saw blind and visually impaired people in a different perspective.  There was entertainment and to my amazement people were dancing and having fun.  They were enjoying life with a little bit of support.

Being new to volunteering with other vision impaired people, the users were more than understanding.  Sometimes I would make a mistake, but they were very supportive of me, and it made me feel valuable to them.  The best thing about helping other VI people is they’re all different and know how they want to be supported.  I had discovered so much about the users and have enjoyed many activities from coffee mornings, outings and even sport!

There are no barriers to becoming a volunteer as you’re given the skills to fulfil the role that’s needed.  The age range varies, but we all enjoy getting together, and the advantage is the older people teach the younger ones and the younger ones teach the older ones.

Before volunteering, I was feeling like my social life was to an end, but with the encouragement of the people I met, users and staff, to become more active in activities, I am feeling the benefits of belonging to ELVis.  I have been given a new lease of life which I love and I have learnt so much.

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Photo of Christine standing in front of a palm tree in Hackney.

Written by Christine Maker, Volunteer for East London Vision

What It’s Like to Be a Support Worker in the Sight Loss Sector

Previous to my current role at East London Vision, I was a support worker to a vision impaired person, and at first I was not sure what a support worker was.  After a general chat about my role with my client I had a better understanding of what my responsibilities were.

Let me tell you this- being asupport worker is a role that comes with ahigh level of responsibility.  This officially means the person being supported must be at the centre of everything at all times when on the job!

A support worker’s day is driven by the person they are supporting.  I found that no two days were ever the same, which was great!  I had to remember that I was there to support the person and enable them to do their job and not take over it!  I supported them with tasks like preparing reports, giving presentations, reading the post and completing forms.  I would also help provide emotional support to patients at the eye clinic.  However, members of staff would think they had a new team member and would try to delegate work to me!  But I and the person I was supporting would quickly remind staff that I was not working for them.

In addition, I met people who would speak to me rather than the person I was supporting.  This was upsetting for both myself and the person I was supporting, but we soon learned how to resolve this.  If a person spoke to me, then I would not respond, which quickly led to the person realizing who they should have been addressing in the first place!

Most of my happiest years were working as a support worker because I truly loved my job.  I learned a great deal from the person I supported because they made me look at things from a different angle.

Over the years I formed a close friendship with this person.  We learned to trust each other because we worked closely together almost every day, and we’ve even shared many laughs.   I’m happy to say we’re friends for life!

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Christine serving tea to Graham at the ELVis office

Written by Christine Edmead, ELVis Information and Administration Officer

Managing Your Food Allergy when You’re Vision Impaired

As a partially sighted individual with food allergies, managing my allergies has been challenging.  For example, when I’m eating at a restaurant, the menu isn’t always written in large print, or when I go food shopping, it’s often difficult to read the ingredients on food packaging.  Because of this, I’ve learned to take a proactive approach towards managing my allergies so I’m able to eat safely at home or when I’m dining out.

I hope you will learn something from my advice to help you better manage your food allergies.  Even if you don’t have a food allergy, you may know someone who has one so you can pass on the advice to them.

Firstly, get to know your allergy medication.  If you have little or no sight make sure you have a feel of what your medication looks like.  If you carry an Epipen then it’s vital that you’re trained how to use it.  You can book an appointment with your allergy clinic at your local hospital via a GP referral to get training.  Moreover, if you carry different medication, you can add labels on them to tell them apart easily.  A list of different types of labels (i.e. audio, tactile) sold by the RNIB can be found by clicking on this link: https://bit.ly/1Z7pOsy.  Also, remember to have your medication next to you at the table when you’re dining out so it’s at arm’s reach if you ever need it.

Secondly, use assistive technology.  There are many smartphone Apps such as the Seeing AI app which can read back to you if you point the phone’s camera at text.   If you aren’t tech savvy or own a smartphone, don’t be shy to ask someone to help you read the menu or food label.  If you have some sight always carry around a hand-held magnifier.  At home, use large print labels on food containers, or you can use different numbers of rubber bands to identify different tinned products.

Thirdly, this one may seem obvious- tell people about your allergies.  When I dine out, I always notify the server or restaurant manager of my peanut and tree nut allergy so they can check if they’re able to provide me a nut-free meal.  Furthermore, talking openly about your allergies raises awareness as you’ll be surprised that not everyone knows that having a food allergy can be fatal.

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Image of foods likely to cause allergies includes shellfish, nuts, dairy, alcohol and fresh fruits.

Written by Ray Calamaan, ELVis Communications Coordinator