Purple Tuesday and the value it brings

Tuesday 13 November saw the launch of Purple Tuesday, which encourages retailers to be inclusive and accessible to the 14 million disabled people in the UK.

Whilst it is a great initiative it needs to insure retailers embed the needs of disabled people at the forefront of their thoughts every day of the year. Oddly enough disabled people shop throughout the year just like everybody else! With this in mind everyday should be a Purple Tuesday for disabled consumers, so here’s to trusting this is the start.

There are already some great positive initiatives out there, which I’d like to highlight in this blog as they can at times be overshadowed by negative experiences. I myself being a vision impaired consumer have had many a misfortune of being on the receiving end of not so helpful customer service, or navigating an inaccessible website making me want to throw my mobile/laptop out the window. On the flipside I have had the welcome break of being treated with respect and dignity enticing me to part with my hard earnt money.

The first of which I would like to mention is the concierge service at Stratford Westfield. They have two concierge desks where you can request assistance. The idea is that a member of the concierge team will assist you to the retailer you desire to visit and get the attention of staff at the store to aid you once there. At this point the concierge staff will leave, but not before instructing the retail staff member on what to do once the customer has finished and should they require further support. The concierge staff are there to support customers visiting Stratford Westfield to various shops and restaurants, but not to help in reading menus, search for gifts, as this is the responsibility of the business in question. The team can be reached on 020 82217377.

The second of which I would like to mention is the personal shopper service at Lakeside in Thurrock. You need to book this service in advance on 01708 684351. The idea here is that a member of the personal shopping team will find out what it is you are looking for and you can then either choose to go with the personal shopper to a number of retailers, or you can decide to wait while the staff go around and brings a handful of items to you. This service is free to use.

With the lead up to Christmas we will be arranging for a trip to Stratford Westfield where blind and partially sighted people will have the opportunity to try the concierge service with the view that they can use it independently in the future. This event is to take place on Tuesday 27 November, time to be confirmed.
If you would like to attend, please call Bhavini Makwana on 07976 448824, or email bhavini@eastlondonvision.org.uk

We would love to hear your positive shopping experiences.
#PurpleTuesday #PositiveStories

Written by
Masuma Ali, ELVis CEO


My journey working with blind and partially sighted people

Firstly, I would like to thank the ELVis team for asking me to write this blog – it is a real privilege so here goes!

I wanted to use the blog to reflect on my own experiences working and supporting blind and partially-sighted people throughout my working life that extends way before my involvement of working with London Vision.

I started working in the health and social care field in 1990 as a change of career – my first role was as a care assistant in a large residential home for older people in Westminster. Unsurprisingly, some of the residents were registered blind but there seemed to be no additional support for this and the care that was provided was by willing staff who did not have the specific training with regards guiding people and being aware what was available by way of aids and adaptations. As a staff team, we did our best to provide support and being new to the sector I didn’t even think of suggesting that we contact the RNIB or other sight-loss specialist provider for support.

Throughout the 1990s and in the early 2000s, I worked within the home care and sheltered housing sectors. Again, I worked with blind and partially sighted people and the acknowledgement of their sight condition was somewhat better as aids and adaptations had been provided in the home by the local authorities’ occupational therapy teams. Some people had a designated visitor from what was known as The Metropolitan Society for the Blind for reading post and completing forms – today this service is known as BlindAid and I know that many people still value the support of this service.

The first occasion I had involvement with a member of a local authority sensory team was when I was managing a large sheltered housing scheme in Hammersmith. There was a couple living at the scheme who were both registered blind and for the first time I was privy to being involved with the types of practical support that was needed and voiced by the couple themselves to the local authority. However, the support that was provided was purely within the home – there did not seem to be opportunities available that extended to the local community.

Somehow, this all seems a long time ago. I have been most fortunate to have worked with Thomas Pocklington Trust and London Vision for the past six years and thus enhance my knowledge and experience of working with blind and partially-sighted people. In recent months, I have been working with the ELVis Team and I would just like to express what a wonderful team they are and how welcoming they have been to me.

In conclusion, what have I learnt thus far on this journey? The first thing is to say I will never know it all – working with people is an honour and a privilege and one can never be complacent as new scenarios and situations will surely arise – this is what makes life enriching, challenging and enjoyable. Secondly, when I think of my younger self in the 1990s I wish I could have contacted a group like the ELVis Team for guidance and support with regards best practice in working with people with sight-loss as well as the availability of social groups and expert advice regarding assistive technology – I did not have the awareness of such a group back then but it is so reassuring groups like ELVis exist to support blind and partially-sighted people and also give expert advice to health and social care professionals, friends and family members.

Written by Paul Vassilliou, Development Manager, Central West London & North London Vision


ELVis 5th Birthday Celebration

Last month, ELVis members and colleagues came together to celebrate the 5th anniversary of ELVis.

It was my task to organise the 5th birthday party and I wanted to ensure that our members would have an enjoyable time coming together.  Being a 5th celebration, I took that literally – as if it was a 5- year-old’s birthday party – with entertainment such as Pass the Parcel (with forfeits), Pin the mic on Elvis Priestly and a quiz with prizes to be won.  Fish and Chips only seemed right (as it was a Friday), and we had a delicious, mouth-watering cake, with snacks to keep everyone happy.

It was wonderful to see our members from all over East London, some who have developed the confidence to travel to our office using public transport independently or connecting with other members to travel together.

As the celebrations continued, members talked amongst themselves sharing recent events they had attended and useful information that they picked up at meetings.  Impressively, all the members willingly took part in the forfeits in the games, such as singing Elvis Priestley songs, dancing to the Macarena, doing impressions of celebrities and acting out scenes from TV and film.

Once the entertainment finished, ELVis CEO, Masuma Ali, gave a fantastic speech which highlighted ELVis’s achievements over the years and thanked all our members.  It was humbling to receive comments from our members: “I joined ELVis early this year and it has been a life saver – I don’t feel isolated and it has given me the confidence in being more active supporting my local group.” said Tolga from Hackney.  Glen from Newham shared that since moving to London, “It has helped me connect with others and enhance my social life, and I have enjoyed coming out on ELVis outings.”  Esther from Dagenham said, “I am so glad I came today.  I came all by myself by train and had a lovely time with everyone.  ELVis have supported me so much.”

As the Activities Coordinator for ELVis, I am so proud to witness our achievements and successes, and how our members have gone from strength to strength developing in personality, skills set and confidence.  Overall, it was an enjoyable and entertaining afternoon. Thank you to my colleagues and volunteers for assisting on the day.

As some of you may know (or may not), ELVis will soon become London Vision East and you may see our new name popping up here and there over the next few months.

I look forward to working with London Vision East and developing our services and continue to support those affected with sight loss, those just diagnosed, and those who need to access support a little later on in their life.

Photo of Bhavini, Masuma and Cathy from London Vision cutting the ELVis birthday cake.

Written by Bhavini Makwana. ELVis Activities Coordinator

Thank You ELVis

Dear friends,

Sadly, this is the last time I’ll be writing for East London Vision.  In my final blog I will be reflecting on my journey and time here at ELVis.

Working for ELVis has been a life-changing experience.  I remember my first day working at the office, I was feeling nervous because I was unsure if I’d get along with the team and whether my disability would have an impact on ability to work.  But as I settled in during the weeks which followed, my nerves disappeared as I was made to feel very welcome, and I was able to focus on getting to grips with the responsibilities of my new job role.  I admit it wasn’t easy to begin with, but with the support and guidance from my colleagues I was able to develop the confidence and self-belief to do my job well.

I feel blessed to have worked with a supportive team, and I’ve shared many great memories with them, as a team and individually.  I’ve really enjoyed our team outings, including taking part in an escape room challenge at Christmas.  I had a lot of fun!  Also, cheering on our marathon runners together during the London Marathon and Big Half marathon were great team-bonding experiences.

Moreover, getting to know the service users has been a highlight of my time with ELVis. There are many of ELVis members I’ve had the pleasure of meeting and spending time with.  One of my memorable moments was participating in kayaking sessions with a group of service users in Tower Hamlets.  Everyone, including myself, enjoyed getting to know one another and have fun getting very wet!

I feel rewarded knowing that the work I’ve done at ELVis – promoting our achievements and services for vision impaired people – has helped the charity flourish in the VI community.  ELVis’s social media accounts have grown in following and there is constant engagement from people, not only locally but internationally as well!  I am extremely proud of this.  Also, seeing more service users turning up to our events, and having spoken to some of them, I’ve learned that our members have become more outgoing and confident because of increased participation, which is fantastic!  Additionally, I am more aware of different sight conditions and the challenges vision impaired people face daily.  With this increased knowledge, I can move onto my new job role at London Vision knowing that I’ll be able to do my job well from the get-go!

Lastly, I’d like to say that I truly enjoyed the time I’ve spent working alongside the ELVis team and very much appreciate and value the support I’ve been given along the way.  A MASSIVE thank you to you all!

The ELVis team having a meal out at Needoo Grill in Whitechapel to celebrate Ray’s new job role at London Vision.

Written by Ray Calamaan

Android One – A Real Break Through

If you are in the market for an accessible mainstream smartphone, you have 2 choices available.  You can choose an Apple iPhone or an Android phone.  There are arguments about which is the most accessible.  Apple offers a very good out-of-the-box experience, with phones that are regularly updated that have a long-life cycle i.e. the time between the release of the product and the time when it no longer receives updates.   Apple also has a network of shops offering apple products as well as technical support and advice/training.

Android is much more customisable, but until now you really had to choose a Google phone such as the Pixel if you wanted regular updates.

Android phones are available from as little as £50. But as well as considering the processor and the amount of RAM and other specifications, it is also necessary to find out what version of Android is installed and then make an educated guess as to whether the phone is likely to get updates.  Many phone manufacturers choose to put their own software on phones and change the way they look.

As a result of all these variables, buying an Android phone can be really very difficult, and it can be hard to get good independent advice about what you should buy.

In order to give more choice and to introduce some stability, Google has recently introduced a program called Android One.  Phones that meet the Android One standard run plain Android, otherwise known as stock Android with the minimum of other software installed. They should get updates for at least 2 years.

Currently, in the UK, the Android One phones are generally made by Nokia, but Motorola is due to release an Android One phone by Christmas.  There is more information about Android One available at https://www.android.com/one/

Note that not all these phones are available in the UK.

These phones include the Talkback screen reader and the ability to magnify the contents of the screen using magnification gestures.  There is not as much out there in the way of tutorials on Android as there is for the iPhone, but if you are interested in trying Android and you are prepared to learn and experiment yourself, there has never been a better time to do this.  Producing phones with guaranteed updates should help give piece of mind for anyone who wants to try Android for a reasonable price.

A phone such as the Nokia 5.1 can be bought for under £200 which is well worth considering for those on a budget.  The cheapest current model of iPhone costs more than twice this price.

Here’s a link to the John Lewis website selling the Nokia 5.1 for £189: https://bit.ly/2CPmsb8

Photo of Nokia smartphones.

Written by Graham Page, ELVis Assistive Technology Adviser

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

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.

 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! 😊

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