Outlook Issue 34

Content

Intro

News

Find out what’s going on at RNIB in this issue’s round-up. Plus how you can win tickets to a great new musical about the life of Louis Braille.

Your Will Your Way

It’s easier than ever to get your affairs in order. Take the hassle out of writing or updating your Will with our great new Will writing services.

It’s an ECLOs’ Life

We spent a day with two of our Eye Clinic Liaison Officers, finding out what they do and the difference they make to people with sight loss.

Keep on Running

With the London Marathon just around the corner we catch up with some of Team RNIB’s inspirational runners and hear their story.

Welcome to your latestcopy of Outlook.

It’s great to be back with a brand new edition and some very exciting news about RNIB and its associate charity Action for Blind People. Thanks for all your comments and feedback on the last issue.

You told us you would like to see more stories featuring inspirational people with sight loss, so in this edition we speak to some of our runners, taking part in this year’s London Marathon.

We’ll also spend a day with two of our Eye Clinic Liaison Officers (ECLOs) and find out what a typical day can involve.

Finally, I’d like to thank you for supporting us and helping transform the lives of blind and partially sighted people.

All the very best,

Matt Smith – Editor.

News.

RNIB & Action for Blind People – Working Together.

In 2009, RNIB and Action for Blind People formed an association between the charities, with Action becoming part of RNIB’s group. Since then, both charities have been working closely together, with the shared goal of making every day better for everyone with sight loss.

From 1 April 2017, the two organisations became fully integrated with Action officially becoming part of RNIB. This means that all of our knowledge and services are now shared within one charity.

Action’s great services will continue through RNIB, operating as before, making your donations and gifts left in Wills go even further. This will enable us to be more efficient and more focussed as one organisation, helping blind and partially sighted people face the future with confidence.

Sally Harvey, CEO of RNIB tells us:

“RNIB and Action for Blind People have been part of the same group since 2009. But this year we are going to merge the two organisations into one. The main reason for this is that we know that maintaining two brands is still confusing to blind and partially sighted people and that’s the last thing we want, as we seek to provide them with the best possible services.

We also believe that this change will enable us to make sure that every pound donated to us can be used in a more streamlined way, ensuring it makes the biggest difference.”

May the dots be with you!

Throughout May we are highlighting the importance of braille, and supporting blind and partially sighted people, by wearing dotty clothing for our Wear dots ... raise lots campaign.

We’d love it if you could get your social groups, or encourage your local schools or children’s groups to get involved.

For a free fundraising activity pack go to , email or call 0345 345 0054, Monday to Friday 9 am to 5 pm.

Happy Birthday to RNIB’s oldest newsletter.

Most people would agree reaching 100 years of age is a pretty impressive achievement. This year, RNIB’s oldest publication, The Beacon, now called NB Online, celebrates 100 years in circulation.

It’s editor, Hannah Adams, said: “We’re delighted to be celebrating the centenary. I believe the reason the publication is still so popular with readers 100 years after it was first published is because the purpose and integrity of the publication hasn’t ever changed - to be an essential read for people who have an interest in sight loss.”

The Braille Legacy

From April this year a brand new musical, The Braille Legacy, will open telling the thrilling, true, inspirational and epic story of Louis Braille. Starring Olivier-award winning JérômePradon, it is an empowering tale of perseverance and hope.

Win a pair of tickets

Excitingly, there are 2 free tickets up for grabs, for a choice of audio described dates at the Charing Cross Theatre,on Saturday 27 May at 3pm (matinee) or Monday 29 May at 7.30pm.

Visit rnib.org.uk/thebraillelegacybefore 1May for more details about the production, how to enter and terms and conditions.

Your Will, Your Way.

Here at RNIB we understand the importance of Wills more than most. In fact, a third of our total income comes from gifts left in Wills by our supporters. These gifts fund our vital work and it’s a simple truth that we wouldn’t be able to provide the life changing services we do, without them.

Writing a Will is one of the most important things you can do. It’s the only way that you can be sure that the people and causes you love are taken care of after your time. Writing a Will is something that people often put off. The whole process can seem daunting but it needn’t be. Thanks to RNIB it’s easier than you think.

We have a team of friendly, local Wills & Legacies Officers who can help you put together all the essential information you need before you visit your Will writing professional. To get in touch with your nearest officer call us on 0845 600 0313 or email

We also have a brand new service in conjunction with the Goodwill Partnership – making Will writing simpler and more affordable for our supporters in England and Wales.

At £98 + VAT for preparing a single Will, this is the lowest price for a face to face Will writing service being offered in England and Wales.

You can get your Will written over the phone, or even from the comfort of your own home, at a time that is convenient to you, such as during the day, in the evenings or at weekends.

They can also provide legal advice and storage of your signed Will.

If you would like more information on how easy it can be to make your Will please visit rnib.org.uk/easy or give us a call on the number above.

It’s an ECLOs’ life.

Ruth Rhydderch and Keira Brooks are both Eye Clinic Liaison Officers (ECLOs) based in Wales. Ruth works for Wales’ largest eye clinic at the University Hospital of Wales in Cardiff, and Keira is the ECLO for Powys, covering a number of smaller, local hospitals. Outlook spent some time with both to find out what a day in the life of an ECLO actually involves.

(Outlook) You must both see quite a bit of variety in the job?

(Ruth) That’s right. Today I’m based in a part of the hospital which is dedicated only for treating macular conditions. There’s also a main eye clinic which sees a whole host of eye conditions, an orthoptic department dealing with squints and that kind of thing, and a glaucoma monitoring clinic. There’s also a paediatric clinic and I also cover some of the wards, so it’s pretty busy!

(Keira) For me, in Powys we don’t have one large general hospital, we have a number of small community hospitals which I cover. Some clinics run once a month, some once a week. Generally I’m in a different clinic each day and have a different schedule each week.

(Ruth)It was interesting last week. I dealt with two very different patients in the space of about half an hour. One was 97, the other was the parent of a 4 month old baby, who had sight loss from birth. They were almost a century apart with very different needs, but both needed support, help and information.

(Outlook) Does the service itself just deal with peoplestarting their journey with sight loss?

(Ruth) No, it goes all the way through and we pick people up all along the way. Occasionally we meet people at the point in their life when they are given some very devastating news, but more often it’s a much more gradual process. Patients can be diagnosed with an eye condition and we’ll meet them, give them some information and maybe not see them again for 6 months or so. Then suddenly they may call one day and say, “Maybe I need to be registered, can you help me with that?” Whatever it is and whatever stage they are at on their journey, we’ll help and support them, and they can always come back. I always say to my patients, “The door never closes.”

(Keira) As Ruth said, there are instances where someone has had a very drastic change in vision and it’s a very traumatic and stressful time. For them it’s a huge benefit knowing there’s an ECLO, who can talk about what’s happening to them, how they’re feeling and what support there is. Thankfully most people don’t have that experience of sight loss. It could be at any stage at all. People come back and speak to me when they are ready. It’s really about talking to someone about their vision, their eye condition, and their treatment, as well as what they struggle with. Then we can find out what can be done to make things easier. I think what we, as ECLOs are particularly good at, is knowing what’s available in each area.

(Outlook) So do you think it’s a really important ambition of RNIB, for every eye clinic in the country to have access to an ECLO?

(Keira) Definitely! Tohave a non medical person to speak to has enormous value. From my experience patients generally get all the medical information and support that they need, and that’s brilliant. But sometimes it’s helpful to have someone to talk to who isn’t speaking in medical jargon, or maybe who talks a little bit more about how that information impacts on that patient.

(Ruth) Yes, I think it’s vital having someone in the clinic that patients can turn to, and that the staff can turn to. By being there we can make sure the staff guide people properly andthat patients are given information in accessible formats. We try to teach and encourage the staff to care for people who have sight loss,getting them to wear sim specs and making them walk around, seeing as someone with a sight condition does. It’s great that they get that experience. I think that’s really, really important.

(Keira) That’s right, it’s about making people aware that the ECLO service is there, what it’s about and how to access it. To try and encourage people, patients and staff to know they’ve somewhere to turn when they do have a question.

(Ruth) RNIB has been really good at constantly saying that this role needs to be there and providing that financial support. I think if we can keep funding these roles as much as possible and supporting ECLOs in clinics, it will pay dividends in the long run. Because we’ll see changes of attitude, we’ll see more and more people able to get the support they need. There’s a lot going on, and a lot of people with sight loss in the community, so I think that investment is vital.

At the moment only one in three eye clinics in the UK has access to an ECLO. By supporting RNIB you are helping us make our ambition, of every clinic having access to such an invaluable resource, a reality.

Keep On Running

Mark Rogerson was 30, when during a routine operation for a detached retina, he caught an infection behind his eye. He knew that something wasn’t right and returned to his doctors. Just 10 days later he had lost his sight. He still remembers the moment vividly, saying:

“When you wake up in the morning and open your eyes, your sight is always there. For me, suddenly it wasn’t.”

He awoke to find no sight at all in his right eye and just some peripheral vision in his left. Understandably, Mark admits that he found it difficult to cope in the early days. He felt isolated and unable to talk to his family, as they were struggling too, blaming themselves for not noticing that things weren’t right earlier.

Eventually he did confide in someone who got in touch with RNIB and directed Mark to his local sight loss centre in St Helen’s. He says that was the moment that changed everything.

An Independent Living Co-ordinator listened to Mark’s concerns and worries, reassuring him that things would be OK and that he could live a normal life. He says by talking things through and speaking to someone independent who understood, an enormous weight was lifted.

After the help and support that he had received, Mark felt that he wanted to give something back to the charity. His mother and sister had both ran a half marathon in Chester raising over £1000, so Mark thought he should do something himself.

A dedicated non-runner (and someone who used to hate cross country events in school!), he decided to run a 10K with his best friend acting as his guide. He says that for his first race he virtually had to be dragged across the finish line.

More 10Ks followed, as well as other challenges, such as climbing Snowdon. He said it gave him a great sense of achievement to complete these challenges, but when he got the call asking if he’d like to run the Virgin London Marathon, Mark surprised even himself, by agreeing to do just that. His sister, with some trepidation agreed to run as his guide.

The Virgin London Marathon is considered by many to be the premier running event in the world. With over 36,000 runners, the atmosphere is second to none. Mark says he found the experience to be almost overwhelming at times, saying that there was nowhere on the course where people weren’t cheering.

He remembers the last 10 miles of the race to be particularly tough. His legs felt like lead and he had to stop to stretch out to try to keep going. He said he will always remember hearing a young boy in the crowd, who told him to keep running and that he could do it. This gave Mark his second wind and he went on to achieve his fastest mile after this.

Knowing that he was on the home stretch spurred him forward. When he reached the final cheering point, at 22 miles, he said the noise was deafening. It made the hairs on the back of his neck stand up, giving him the final push to cross the finish line.

Mark describes being part of the marathon as a fantastic experience and such a good day. The feeling of achievement once he had crossed the finish is something he’ll never forget. He also described the massage he received at the post race area for RNIB runners as “The best thing ever!”

RNIB has a full team of 130 runners for this year’s race, of which Mark is one. He says he wouldn’t be able to see the race being run without him and thinks that it will become a yearly event. He says that thanks to the support of RNIB, he has his life back on track and has more confidence and focus than he did even before he lost his sight.

If you would like to support Mark then please visit his fundraising page at .

We also met up with and interviewed Jackie and John Stevens , who like Mark, are also running the marathon. It’s Jackie’s fourth marathon but the first time she has run the London Marathon. John is going to run as her guide.

(Matt) Jackie if we can start with you telling us a bit about yourself. What’s your connection with RNIB?

(Jackie) I’m registered with severe sight loss, so that’s how I’m involved with the RNIB. I use the Talking Book Service and it’s just the best thing ever! I must have listened to half the library, and I just wouldn’t be without it for the world. I take it on holiday, it goes everywhere with me. I used to have to pay for the service but now it’s free so, that’s fantastic!

(Matt) Great! So that was the connection with RNIB, but what made you want to run a marathon?

(Jackie) Really, it’s to give something back, and I’m hoping we will raise enough money! It’s such a great charity doing so many good works. That’s why I wanted to run.

(Matt) And how’s the fundraising going?

(Jackie) Well at the end of the month I’ll be doing a cake sale and coffee morning. All my friends are going to be making me cakes, doing a raffle and all sorts of things. Once the weather improves, at the weekends, I’m also going to have a fundraising garden afternoon. Plus we’ve got the just giving site.

(Matt) And how’s the training been going?

(Jackie) Well, I ran 12 miles yesterday. Have you heard the expression, the tortoise and the hare? Well I’m the tortoise but I keep going!

(Matt) The tortoise won, if my memory serves me correctly..

(Jackie) It did! And I will keep going. I’m really enjoying it. I will run 14 miles on Sunday, and then keep increasing it up to 20-21 miles. I believe you can’t go further than that.

(Matt) So being your first London Marathon, how do you think it’s going to compare to previous ones you have run? What are you looking forward to and what are you excited about?