An Interview with an ECLO

In this week’s ELVis blog post, I share an interview with an ECLO based in East London.

What does ECLO stand for?

ECLO stands for Eye Clinic Liaison Officer.

What does an ECLO do?

That is a really difficult question!  An ECLO works directly with people with low vision, deteriorating vision, sight loss or impending sight loss, and their carers.  The support is both practical and emotional, is for people of all ages and is extended to carers and family members.  They provide timely one to one support and quality information and advice, emotional support and access to other statutory and voluntary services.  ECLOs connect people with the practical and emotional support they need to understand their diagnosis, deal with their sight loss and maintain their independence.  The ECLO has the time to dedicate to people following their appointment, so they can discuss the impact their condition will have on their life.

For example, one of the people I support I met when they were diagnosed with Retinitis Pigmentosa (RP).  This came as a complete shock for them as they had never heard of this condition.  As an ECLO I was able to give them the time, space and support they needed to process this information.  I was able to give them information on RP in layman’s terms, refer to their local sensory team and link them with local charities such as the RNIB, East London Vision and RP Fighting Blindness.  I am still in regular contact with this individual, who is still working in his job with support from Access to Work, has accessed Personal Independence Payments and is receiving counselling to help him process everything.

That is just one example; ECLO’s can support anyone who has sight loss at any point in their journey.  If a patient has a question, then an ECLO will find the answer and put them into contact with the right people.

How long does it take you to train to be an ECLO?

The RNIB in partnership with the Royal College of London provide ECLO training which takes around 3 months to complete. This consists of 4 days training in person learning a range of 18 different modules from eye conditions to emotional support. This is followed by an exam and essay around 3 months later.

How many ECLOs are in each hospital?

Unfortunately, not every hospital with an eye clinic has an ECLO (yet!) and the ones that do generally only has 1.  The RNIB have produced a document with a list of every ECLO and what hospital they are based in.  If anyone would like to find out if their hospital and eye clinic has an ECLO, you can find out via the following link: https://www.rnib.org.uk/sites/default/files/Eclo_role_report.doc

How do you get an ECLO to assist you?

If anyone is interested in getting support from their local ECLO, they can find the details in the link posted above and contact them directly.  Alternatively, next time you’re in the hospital you can ask a member of staff who should be able to introduce you.

Do you like your job?

I love my job!  Every day is completely different, and you get to meet some amazing people along the way.  It can be really challenging but it is one of the most rewarding jobs I have had the pleasure to do.

What is a normal working day like for you?

That is an impossible question to answer, as every day is different whether it is supporting individuals in clinic, chasing Certificates of Visual Impairments or making referrals.

Written by Christine Edmead, ELVis Administration and Information Officer

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Grit, Limestone and Determination

After many months of vigorous and intense training for the Peak District Challenge 50k walk, Saturday 22nd September arrived and with it a 4.30am start!  Everything I had worked for was about to come together in some shape or form.  What it really meant in reality was I had no idea!  But 5am while forcing myself to eat yogurt and Granola wasn’t the time for self-doubt.

With final checks of backpacks and walking boots on, we made our way downstairs.  Having struggled to get a cab the day before, we left it in the capable hands of the reception staff at the Millstone Country Inn, who assured us that there would be a cab to pick us up.  Our cab angel arrived on time much to our relief- I certainly didn’t fancy a 15 minute walk just before I was about to walk 50k!

With registration and the necessities done, I was feeling an array of emotions from nerves to excitement.  With a feeling of butterflies in my stomach, we began the biggest trekking journey of my life at around 7am.  The first 10k of the walk was easy on flat ground along the road, but we were more than aware not to fall into the trap of false security as a difficult 10k at Castleton was approaching.

Castleton was just the beginning of the difficulties that lay ahead for our remaining 40k.  No amount of training would have prepared me for the toughness of the terrain.  We had to tackle from step up and down hill climbs with loose rocks of various sizes, to trekking along narrow paths with stinging nettles on one side and a range of descents on the other.

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 The team “Look Who’s Walking” at the top of Cave Dale during their Bronze Challenge.

The moments I was able to enjoy on the walk included listening to nature and how the sounds and echoes changed in different areas like valleys with rock faces on either side.  We also walked on the sandy heathered expanse of the Peaks, where my team mates even spotted some deer in the distance.

Towards the end of the walk, we had to cross some streams.  I generally love the sound of water, but I was too tired to enjoy anything by that point because all I could think about was to just keep moving.  Every step was a step closer to the finishing point!

The last 5k was the hardest as I felt I had nothing more to give, but I couldn’t give up as I’d come too far to do that.  I’ve never known 2k to last so long that it felt like 4k!  When my teammate, Ian, said that he could see Memorial Hall, which was at the finishing point, I couldn’t believe it.  When we turned right and through the gates emotions took over and there were no words.  With the final check point scanned and our time logged, the walk was completed.  In that very moment we had made history being the first blind and sighted group to tackle and complete the Peak District Challenge.

Seeing family and friends at the end was honestly the best feeling in the world, and I am so grateful to my family for making the journey and coming along for the weekend.

I won’t be putting on my walking boots anytime soon, however I certainly don’t want to lose the level of fitness I have gained.  I will be considering running as an option, which is something I’ve haven’t done properly before, therefore it is a great outcome from the walk as it has pushed me to do something else new! 😊

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Bhavini and Masuma, both smiling, wearing their purple Peak District Challenge shirts that says ‘Grit, Limestone and Determination’. They are standing in front of a window looking into the ELVis office.

You can still sponsor the Look Who’s Walking Team at our Just Giving page to help raise funds for the Bendrigg Trust.

Thank you for reading!

Written by Masuma Ali, ELVis CEO

Me and My Guide Dog’s Journey, so far!

Me and my guide dog’s journey began around 5 years ago, which you can read all about by clicking here.

Last month, I had a potential guide dog match stay at home with me for one night and this included practicing walking together.  My Guide Dog Mobility Instructor and I both felt that it went very well.  As a result, I started my training at the end of August, and I am currently training with my first guide dog.

It has been amazing to learn different commands on how my guide dog can safely guide me, how I can spend him, which means taking him to the toilet, and how to pick up the mess.  Also, what his feeding patterns are like and how to understand his actions and behaviour.  Moreover, I learned different techniques of navigating steps, train stations, narrow spaces, busy and cluttered pavements, taking him on a free run and so much more!

I am sure you will get to meet my guide dog soon.  In the meanwhile, here are some tips I can share with you about guide dogs: firstly, you should always ask if you can say hello or stroke them.  A guide dog could be working and therefore a distraction could, potentially, put both the owner and the guide dog at harm.  Secondly, always be mindful with food around guide dogs.  They are trained not to scavenge, but they cannot be at fault if temptation arises.  Grapes and chocolate are definitely a no-no as these can be poisonous for them.  Lastly, if you’re playing with a guide dog, try not to get them too excited as they like to play back, and it will be difficult for the owner to calm them down.  Also, if a guide dog is settled and calm, then it is best to wait until they are active again before interacting.

With my guide dog, I have managed to walk to my train station, get onto the platform, get onto the train, out the other end and walk to my office.  This is something I haven’t done since December 2016 after losing a bit more sight.  I am now also able to walk to my bus stop and get the bus and go to my local shopping centre, confidently.  I also learnt the route to my hairdressers, doctors and chemist.  It feels so fantastic to just go somewhere when I want and not when others can take me!

Of course, I still have a lot to learn whilst on my guide dog training.  However, just 3 weeks in, I feel my guide dog has made a huge change; independence wise and helping me to be out in the fresh air as opposed to being cooped up in taxis.

Adapting to waking up early and making sure I have all his belongings that I may need when out and about, as well as factoring him into my life, has been an easy adjustment to make.  My family simply adore him, and when he is not working the harness comes off.  We love playing with him, watching him play with his toys and taking him out on his free runs.

You can follow updates on my guide dog progress by following my Facebook page: https://www.facebook.com/visualeyeswithbhavini

Bhavini smiling with her guide dog.

Written by Bhavini Makwana, ELVis Activities Coordinator

My Training for the Peak District Challenge

I have given up my social life over the last 8 months training for the Peak District 50k Challenge taking place this September.  I and my Look Who’s Walking team members are hoping to be the very first blind and sighted group to undertake such an exhaustive challenge and to complete it in the allocated 12 hour time frame. The Look Who’s Walking team consists of Bhavini, Saul, Ian and myself.

I would consider myself reasonably active with a good base level of fitness due to my joy of seeking out adventurous activities, as well as regularly taking part in tennis and other sporting events.  I started the year by doing short walks of 5k three or four times a week, and over the months I have increased the distance I walk.

Most recently, I completed my longest walk of 24 miles. My fitness levels were certainly stretched!  With the final 3 miles being a struggle, the idea of jumping on the train at Cockfosters was extremely inviting.  However, I persevered and hit the 24 miles.  It isn’t every day that I’ll be able to say I’ve done 57,000 steps!

Personally, one of the biggest challenges has been finding people to guide me as part of my training during the evenings for a couple of hours and longer walks on a weekend to ensure I am well placed to complete the challenge. It highlights how an activity that is taken for granted by most people can instantly become inaccessible for blind and partially sighted people.  I am extremely grateful to my family and friends who have walked with me and supported my training efforts over the past 8 months, and are continuing to do so leading up to the event.  If it wasn’t for their support, I wouldn’t have built up the stamina to undertake such a challenge.

It has also encouraged me to step outside of my comfort zone and seek walking opportunities elsewhere. This has led to me attending a Meetup walking group, which for me was a huge deal to pluck up the confidence to not only be guided by someone I didn’t know, but to also walk with people I hadn’t met before. However, they were all super lovely and I’d happily walk with them again in the future even after my challenge. I believe mainstream activities such as walking should be inclusive, and I want to remove the need for vision people to only attend VI events.

Moreover, as part of my training, I’ve started making my own energy snack bars to eat during my walks. My speciality is a date-based bar.  They have become my pick-me-up when the energy levels are dipping.  After our 12 mile training day in June in the Peaks with terrain of various degrees of difficulty and the energy quickly disappearing, I can see myself chomping through several of my homemade creations on the big day.

For anyone wishing to sponsor my Peak District walk with the Look Who’s Walking Team, you can do so on our JustGiving page, or if you fancy walking with myself and Bhavini for the final few weeks, please contact us via the Look Who’s Walking website at https://www.lookwhoswalking.org/.

Hopefully my next update will be on the success of the challenge and how we all got on.  See you soon!

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The Look Who’s Walking Team high up in the Peak District during a practice run of the challenge.

Written by Masuma Ali, ELVis CEO

Ray’s Tips for Travelling When You’re Visually Impaired

Summer is finally here and if you’re thinking of going on holiday, or preparing to, then make sure to read my blog post to the end.

We all love going on holiday.  However, unexpected issues can arise that can test your patience and you’ll soon feel like you wish you’d never left your house. Here are my top 5 tips that can help you have a smooth and trouble-free holiday.

Tip 1: Research a reliable travel provider/transport operator

Do your research about travel providers catering to visually impaired people.  Seable organises accessible holidays for solos, couples, families, group of friends and charities.  You can visit their website at http://seable.co.uk.  There is also TravelEyes who offer the opportunity to travel with other VI people and sighted guides.  You can visit their website  at https://www.traveleyes-international.com/.  Moreover, the TripAdvisor website is a great resource for reviews about travel providers, destinations and places of interests.  Also, make sure to read your travel operator’s disability policy (usually found on their website) to check if they can accommodate your needs.

Tip 2: Make arrangements with your accommodation and transport

Be sure to make arrangements in advanced with your hotel and transport provider, especially if you’re traveling with a guide dog.  Specific guidelines for travelling with a guide dog can be found here: https://bit.ly/2m5oXvz.  You’ll also need to check your destination’s policy on guide dogs to ensure you are both not denied entry upon arriving at your accommodation.  Alternatively, if you’re travelling alone, contact your travel provider and let them know you will need assistance checking in and boarding.  This will save you time when you arrive at your point of departure.

Tip 3: Ask for help!

Don’t feel embarrassed to ask for assistance; whether it’s in your hotel, restaurant, airport or train station.  More often people are willing to help than not.  If you’re lost, then more the reason to ask for directions.

Tip 4:  Use tactile labels on your luggage

Trust me when I say using raised stick-on labels will make life so much easier when you’re trying to identify your luggage, or if you have some sight, tie a coloured ribbon around your luggage.  If you’re a braille reader, invest in some braille labels with your name and hotel address on it.

Tip 5: Research attractions and venues that are accessible to disabled people

Lots of attractions around the world offer free entry for vision impaired people, for example, the Louvre Museum in Paris, France.  However, if you’re planning on going holiday closer to home, check out this list of top accessible attractions: https://bit.ly/2L3ZvBv.

Lastly, if you’re worried about travelling solo, here are some extra travel bits you should know!

  • Use a backpack instead of a suitcase. This will allow you to travel hands-free, and, if needed, use a cane or guide dog.
  • Carry spare change – not all places accept card payment.
  • Label your medication so it can be identified easily.
  • If you don’t use a cane or guide dog, then carry a medical letter from your GP or doctor containing details of your impairment and assistance you’ll need.
  • If you’re a white cane user, always pack a spare one in case your main one breaks or goes missing.

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Photo of Bhavini on holiday in Paris, France.

Written by Ray Calamaan, ELVis Communications Coordinator

Hassan appreciates the importance of East London Vision’s collaboration with Made in Hackney

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Hello readers

I know you’ve had the pleasure of reading some wonderful blog entries on the topic of corporate partnerships and how vital they are to East London Vision.

I am delighted to report that we continue to establish and strengthen our partnerships with other local charities and organisations. I earnestly believe it would be of benefit to build partnerships with local schools, mosques, churches and other religious establishments in East London as well. This will allow us to best represent the views of people living with sight loss and fingers crossed enable us to find and aid other Vision Impaired people. As you may have read in previous entries from me, I intend on visiting schools and building relationships with community leaders in order to reach younger Vision Impaired people. This will also allow us to fund raise and in return we would then offer Vision Impairment Awareness training to year 4, 5 and 6 pupils. I’m thrilled to report that Marion Richardson and Redlands Schools respectively have agreed to fund raise for East London Vision and we are grateful for their cooperation and support. I’m sure I’ll have a further update for you in my next entry, so watch this space!

Talking of Partnerships, over the last 2 months or so we have worked closely with Made in Hackney who deliver fun, supportive, often life changing courses in local food growing, cooking and composting. They work with local charities, community organisations, housing associations and support groups to ensure their wonderful courses are offered to people most in need, such as low income families, children in care, teen carers, young people excluded from school, parents,  children and people suffering from diet related health problems.

Whilst their classes are mainly focused on tackling food poverty, they understand that cooking is incredibly therapeutic and has a real impact on mental health and self-confidence.

Our members have completed a 6 week course, in which they were taught how to make healthy food from scratch. Whether it was making baked beans or mayonnaise as a team we were quick to learn that it was cheaper and healthier to make your own food rather than purchasing over sweetened or extremely salty foods from the market.

The Made in Hackney team including the lovely volunteers were exceptional, considering they had no previous experience of working with vision impaired people

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The sessions were invaluable to the members. One of our Hackney members admitted: “Loved it! Would have never done this, I haven’t cooked in 8 years until now!”

Another member added:

“Having lost my sight, I never thought I’d be able to cook, let alone use a knife independently.”

Taking the general consensus into account, I’m confident the members would like to do this course again in the New Year and I’m sure the phenomenal Made in Hackney team would welcome us back with open arms and long may this flourishing partnership continue.

You can also find out more about Made in Hackney by visiting their website at: http://www.madeinhackney.org

So before I take my leave, I’d like to share the following quote with you:

The only way to keep your health is to eat what you don’t want, drink what you don’t like, and do what you’d rather not.

Mark Twain

CEO of ELVis discusses the topic of employment for Vision Impaired People

Hello to all our wonderful readers

First of all, a warm welcome to our new platform.

2 recent events have made me think that employment for blind and partially sighted people should be the topic of the Blog this week.

The first of these was that I have just been involved in the recruitment of a new member of staff for ELVis. We received 52 applications, and although about 40 of them were discarded immediately because the applicant hadn’t submitted the required information, or clearly hadn’t properly read the job description, it does show that, whatever the Government statistics, there are still plenty of people out there looking for a job. Or, does it indicate, with my more cynical hat on, that job hunters have to prove that they have applied for a certain number of jobs to maintain support or benefits and, with the ease of applying online these days, this is relatively simple to do, even if the applications aren’t appropriate.

Of more relevance though was the second event, which was the output from an employment session run by a colleague of mine at a recent RP (Retinitis Pigmentosa) fighting blindness weekend. Just a few or the work related problems raised were:

  • Where do I get information about training and re-skilling?
  • Feeling hopeless during interviews when trying to convince employers that you are just as capable as the next person.
  • Government schemes to get people into work are often not accessible to people with a disability.
  • I don’t know how my employer will react when I tell them about my deteriorating sight.
  • There is little information to support employers
  • One bad experience can put off employers from then taking on another person with a disability.
  • Access to work support is getting more and more difficult to obtain and the support is often of poor quality.

This is only a flavour of the discussion, which also included looking at solutions. But it does show that with 70% of Vision Impaired people of working age not in employment (and that’s the best estimate), that there is an undoubted need for the sight loss sector to provide collaborative advice and support. I am absolutely not promoting positive discrimination, but assistance with obtaining and maintaining a job will clearly help reduce the startling statistic of blind and partially sighted people who are currently unemployed.

I am sure we will return to this topic in a future Blog!