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

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World Glaucoma Week 2018

Last week (11th-17th March) marked World Glaucoma Week, an international effort aimed at raising awareness of the disease and encouraging everyone, especially those who are most at risk, to get regular eye tests.

Glaucoma is the name given to a group of eye diseases that affect the optic nerve, and it can cause the patient to lose their sight completely if it remains untreated.  It is estimated that glaucoma has claimed the sight of 4.5 million people globally, and that this figure is due to rise to 11.2 million by 2020.

Most people with glaucoma are unlikely to realise they have the disease until it is at its advanced stages.  There is currently no cure for glaucoma and any sight loss that occurs as a result of the condition is irreversible.  However, treatment for the disease does exist, and once the patient has been diagnosed it is possible for them to take action to limit their sight loss.  This is why regular eye checks with an eye-care professional are vital so that the disease is caught in the early stages and treatment can begin as soon as possible.

There are various risk factors that make a person more likely to experience glaucoma, including advanced age, black African or Caribbean ancestry, and a family history of the disease.  This year, World Glaucoma Week was focusing specifically on targeting people who are first-degree relatives (parents, children or siblings) of people with glaucoma to encourage them to get their eyes tested regularly.  First-degree relatives have a ten-fold increase in life-long glaucoma risk, so it is extremely important that those who know they have a close relative with the disease get their eyes checked, and it is also important for people with glaucoma to inform their relatives, where they are comfortable doing so, and to encourage them to have their eyes tested.

World Glaucoma Week has been promoting this issue across the globe, with public talks, radio shows, social media campaigns and much more in countries from Brazil to Nigeria to Indonesia.  Closer to home, Specsavers trained over 2,000 staff about glaucoma in advance of World Glaucoma Week, and the International Glaucoma Association worked with Vision Express to raise awareness of the condition through supporting the Vision Van which toured the UK.  The NHS also produced a free glaucoma guide with information about the condition and tips suggesting how people with glaucoma can manage it.  The guide can be found here: https://www.nrshealthcare.co.uk/wordpress/wp-content/uploads/2017/03/NRS-Glaucoma-Guide-FINAL.pdf.

For more information about glaucoma and to see what else went on during World Glaucoma Week, you can access their website here: https://www.wgweek.net/.

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Image shows an elderly man getting his eyes tested and the words “Green = Go get your eyes tested Glaucoma Save Your Sight!”.

Written by Nicola Stokes

How I’m Preparing to Run The Vitality Big Half Marathon

The journey so far

I am approximately half way through training for the Big Half, with exactly a month to go.  My first run was a test to make sure I could actually run for at least 30 minutes without collapsing in a big heap on the floor, which fortunately did not happen, and I felt invigorated to create a training plan, using resources from The Big Half marathon website and gathering advice and tips from friends who have previously run marathons.

There were a few initial points to tick off, and which I’ve already experienced the benefit of: get a good pair of running shoes, build up distance and time gradually, download a running app to track progress and take rest days in between big runs.  I wrote up my plan with weekly goals of what distance/time I wanted to reach.  Then suddenly the fear set in, and for the first week and a half of that plan I couldn’t bring myself to run.  I procrastinated through other means of building up my overall fitness; a yoga class, swimming and a couple of long cycles.  This definitely wasn’t a bad idea, as it gave me a chance to exercise and stretch other muscles in the body.

The breakthrough

Thankfully, with some encouragement, I managed to part ways with that apprehension and completed my first 5km run, and survived (side note: stretching afterwards is SO important!).  Each time I’ve trained since I’ve enjoyed it.  I realised that years of telling myself that I wasn’t a runner had instilled a belief that it must be an awful experience.  Running is certainly still challenging, and requires a lot of preparation [tip: set aside a good couple of hours for each run, to find that state of mind, warm up and cool down, perhaps take a shower after], and those first twenty minutes, for me personally, are a huge hurdle.  The self-doubt floods in, and I think about going home, or walking to the nearest coffee shop.  No, that can wait, I remind myself.

It’s all in the recovery

Last week I met with another friend who is taking part in the Big Half and we made more plans – but this time it wasn’t so much about the training, but for what comes afterwards: the Recovery. A huge meal on the Sunday afternoon post-race, then a sauna trip the next day and some more yoga to stretch out our sore muscles.  It’s also important, however, to build in room for recovery at every stage in preparing for the half marathon, and remember that you can’t expect to do it all in one go!

It was a great turning point to start thinking about what follows the race, and that there is still the rest of life to get on with once it’s over, but for now I am taking it, quite literally, one step at a time.  And with just four weeks left I’ve still got some way to go, and every little bit of support has given me a massive boost.  You can follow more of my training progress on Twitter and donate via my fundraising page here: https://mydonate.bt.com/fundraisers/joannalally1

Thanks for reading and all your support so far!  And if you’re free on Sunday 4 March then please come and join East London Vision to cheer me on along with the other race participants!

You can also watch my interview with Ray from East London Vision.

Written by Joanna Lally

 

Masuma’s Employment Journey in the Sight Loss Sector

“How did you end up working for the sight loss sector?”

This is one of the questions I most often get asked by people, and the one I regularly hear being discussed is whether most blind and partially sighted people end up working for the sight loss sector.

There are around 84,000 registered blind people of working age (18-65 year olds) in the UK, and only 21,000 (1 in 4 compared to 3 in 4 sighted people) of the working age population are in employment.

I feel extremely fortunate to be in the working age figure. My employment journey started with a part-time role as a Braille transcriber at a mainstream college. This job was a great starting point for me in the world of work and being part-time provided me with the opportunity to volunteer and upskill myself at the same time. I initially looked for volunteering roles away from the sight loss sector, not because I had anything against it, but simply due to not having given it any thought.

However, I learnt very quickly that it was rather difficult to find a voluntary role with organisations outside the sector. Also having received feedback from employers that I didn’t have enough experience, I resorted to looking for volunteering opportunities within the sight loss sector and landed myself a number of various roles. To be told by employers that you don’t have enough experience and struggling to even gain a voluntary role outside of the sector was soul destroying, it is a horrible catch-22 situation, which certainly didn’t do my confidence any good. However, the good news is that it seems things have moved on somewhat as I know several people who have volunteered with organisations away from the sight loss sector. Yes, I’m sure it can still be a struggle, but hopefully things are slowly changing.

Not only did the volunteering opportunities allow me to grow and increase my skills, knowledge and experience, it provided a good platform to network. My voluntary role at Waltham Forest Vision (formerly known as Low Vision Forum) resulted in a successful application and interview on a trainee contract. This set my journey into the sight loss sector and I’ve never looked back!

However, to assume every blind or partially sighted person ends up working for the VI sector is completely incorrect. I know just as many vision impaired people who work in the sector as well as don’t.

I would strongly encourage all VI people looking for work to take up volunteering opportunities, to network and build good rapport with people. Some may say I’m one of the lucky ones, and whilst there may be a very small element of truth, it certainly wasn’t all smooth sailing. The struggle of finding employment was real and can definitely be that much harder for vision impaired people. However, despite experiencing knock-backs throughout my employment journey, my proactive self-help approach, positive can-do attitude and, at times, throwing myself into the unknown certainly paid off. I am truly grateful and thankful to the people who have both personally and professionally supported me along the way.

Masuma Ali
Photo of Masuma smiling.

Listen to Masuma talk to the Thomas Pocklington Trust about her life and employment journey in the sight loss sector.

Written by Masuma Ali

 

The Concierge Service for the Visually Impaired at Westfield Stratford City Shopping Centre

As the Technology Officer at ELVis I tend to write about technology for the blog. This month, however, I’ve written about a recent shopping experience.

Most readers will be aware that Stratford, East London is home to one of the largest shopping centres in Europe which is a popular shopping destination for millions of Londoners and tourists. Getting to Westfield Stratford City is very easy. By public transport the nearest train station is Stratford which is also served by a number of local bus routes. Additionally, there is lots of parking if you’re being driven there.

Generally, people with no useful vision for reading or getting around, such as myself, would view a large shopping centre like Westfield with real fear. In my experience, shopping centres are constantly busy with shoppers so it’s difficult to get around. Moreover, the same background music is played all over the shopping centre so there’s little in the way of audio clues as to what is around you.  And I’ve come to realise that navigation equipment that relies on GPS satellites is of limited or no use in large shopping centres.

At Westfield Stratford City, one of the great features available to the public is the Concierge service. This allows a person with little or no sight to go to the Concierge desk and ask for assistance to take them to one of Westfield’s many shops, restaurants and facilities. More than often they will wait with you if you’re only buying one or two items. However, if you’re planning on spending hours shopping or dining at a restaurant, then the Concierge staff will make sure you’re given the phone number for the Concierge desk so you can phone for assistance when you’re ready to leave.

I’ve used this service well over 20 times and I must say it’s extremely helpful as it has saved me from wandering around Westfield and getting lost. Also, even when the shopping centre has been really busy, such as during Christmas, I’ve never waited more than 10 minutes for assistance.

In my opinion, the Concierge service for vision impaired people turns a difficult and stressful situation into a relatively hassle-free shopping trip. I just wish more shopping centres across the country would adopt this similar service.

For more information about their Concierge service for people with visual impairments, please visit: https://uk.westfield.com/stratfordcity/services/all-services/visual-impairment/711

Written by Graham Page

Dementia Awareness training with Redbridge Council

While here at ELVis we obviously focus on the issues surrounding sight loss, it’s worthwhile remembering that people can have complex needs, and sometimes people with a visual impairment can be experiencing other issues as well.

A couple of weeks ago, a few ELVis members of staff went to Redbridge Council to receive training in dementia awareness, to become Dementia Friends.  Dementia and sight loss are more closely related than some people realise. Both conditions tend to be more common in older people; it’s not unlikely that someone could naturally develop both conditions independently of each other, but sight loss can sometimes be a consequence of the dementia itself, or both conditions might originate from the same source, such as a stroke.

Furthermore, a person living with both of these conditions may experience more obstacles than someone with just one of them.  For example, a person with both dementia and sight loss may get disorientated more easily, have an increased risk of falls, or have more difficulty in recognising people.

Therefore, it’s very important to educate ourselves on what dementia is, and what we can do to help those who are living with it, which was exactly what our training covered.

The training began with talking about common ideas and misconceptions about dementia, and we discussed how people with dementia can still communicate effectively, that there is more to a person than their dementia and that it’s possible to live well with the condition.  These were very important messages, as people can often focus solely on the negatives when they or a loved one are diagnosed with dementia. It was encouraging to learn that the future isn’t always as bleak as people might fear.

Another important lesson that we learned from the training was that, while people with dementia may struggle to recall recent ‘factual’ memories, such as where they went at the weekend, they are in general much better at retaining ‘emotional’ memories.  This means that, if someone visits them and they end up having an argument, an hour later they may not remember that they were visited but they’ll still feel upset, whereas if someone visits and they have a great time, although they might not remember the visit later on, they’ll still feel the happiness that the experience brought them.

Learning more about dementia and understanding more about its causes and effects will definitely help us all when interacting with those who are affected in the future, and all of us are proud to be able to call ourselves a Dementia Friend.  Thank you very much to Redbridge Council for providing this training.  If you are interested in learning more, you can go to the Dementia Friends website: https://www.dementiafriends.org.uk/.

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Photo of Ray, Nicola, and Bhavini from ELVis with Mike O’Hanlon, Dementia Friends trainer and Diversity Programme Manager at Redbridge Council.

Written by Nicola Stokes