150Issue 21/Autumn 2018

rnib.org.uk/connect-magazine

RNIB celebrating 150 yearsIn this special edition:

How RNIB is seeing differently Some of the funniest calls to the Helpline revealed Interview with Microsoft’s Head of Accessibility

Connect

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Introduction

WelcomeRNIB’s interim CEO on celebrating 150 years of supporting people with sight loss and a new look for RNIB and Connect Magazine

This year sees RNIB turn 150 and we are incredibly proud of the change we’ve driven over that period - much of it with the support of our donors. In this special edition, we’re going to look back to our beginning, forward to our future, and celebrate our achievements along the way.At a time when there is estimated to be more than two million people living with sight loss in

the UK, it’s clear we still have a long way to go. So, this year, we’re setting ourselves up to make sure our work continues not just tomorrow but also in the future. As well as celebrating 150 years of supporting people with sight loss, we’re really excited to be launching our new brand. After many months of research and engagement with people with sight loss, our partners and the general public, we have designed a new look and feel that better reflects our work and ambitions. Our brand campaign launched on 10 September – hopefully you will have seen one our advertisements on a high street near you. Do also visit the RNIB website to see some of our activity celebrating the achievements of the past 150 years and learn more about our brand launch and what the future holds for RNIB.

Eliot Lyne Interim Chief Executive

Eliot Lyne

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2 WelcomeRNIB’s interim CEO on celebrating 150 years

4 New brand: How RNIB is seeing differentlyRNIB has a new look and feel.

8 Your Voice: Happy Anniversary RNIB!Connect showcases some of your amazing stories as part of our 150th celebrations.

12 RNIB History: Back to the futureDan Fisher, Head of Strategy and Planning at RNIB, explains how the charity’s past has helped shaped its future.

16 Quick polls: And the survey says…Ever wondered what some of the funniest calls to the RNIB Helpline were?

19 Tech spot: Taking accessibility to the next level at MicrosoftAn exclusive interview with Jenny Lay-Flurrie, Chief Accessibility Officer at Microsoft.

22 Changing society: Campaigning to make every day betterOver the years, RNIB alongside people with sight loss have campaigned tirelessly to bring about positive change.

24 Eye health: Looking into the past and future of eye health The world of eye medicine has seen many innovations over the years.

26 Book lovers’ corner: Ten facts about Talking BooksEver wondered how and when Talking Books got started?

Cover image: Celebrating RNIB’s 150th anniversary

Contents

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New brand

How RNIB is seeing differentlyRNIB has a new look aimed at raising its profile and changing the way the public often perceives people with sight loss.

When Martin Wingfield, Head of Brand and Marketing at RNIB, joined two years ago, one of the first challenges identified was that the organisation needed to update its brand.Fast forward two years and the moment has arrived – a new logo with a new strapline. The letters R, N, I, B, appearing black and bold, are slightly spaced out from each other, with a brightly coloured pink line underneath.He says: “Lots of people told us that the [old] blue logo with the white text looked quite corporate and like an NHS brand, which is really something we weren’t happy with. So we have a new logo, which we have co-created with our blind and partially community, and a new tagline: ‘RNIB. See Differently’.”

These words replace the former strapline which read “Supporting people with sight loss”.

See differently“See differently”, according to Wingfield, is an invitation for people to view sight loss from another perspective. He adds:

“ It’s a call to arms for the general public to see sight loss differently, to the community to see differently, about how we can work better together”.

And, it’s a motivating couple of words that will help individuals with sight loss see differently about what they can do to lead as full a life as possible.

He also hopes the changes will raise awareness among the general public and ultimately for the two million people with sight loss about RNIB and what they do.The brand campaign launched last month with three films showing different scenarios of people with sight loss in everyday life. For example there is a man in a shopping centre. An initial observer might think he’s having difficulty Martin Wingfield

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with the escalators because of his sight loss, but at the end of the film it is revealed that he’s desperately trying to avoid an ex-girlfriend.In another film there is lady grating a carrot. She suddenly grates her finger. However, the accident is not due to her sight loss, but because she’s spotted an attractive man on television.Poster, digital and newspaper campaigns have also been launched and follow the same vein.

“ Overall, there is one clear message that this campaign wants to promote – see the person, not the person with sight loss. In other words: see differently.”

Confusion among charitiesThe aim of the new advertising campaign is to help the general public recognise RNIB and

understand what it does. In the past, many people have confused it with the lifeboat charity RNLI or even bird charity RSPB.“People have historically confused us with other charities with similar four-letter acronyms beginning with R. And that’s one of the general missions, just to raise awareness that RNIB is an organisation that’s about sight loss”, he says.Discussions were even had about a potential change of name, but this was ruled out early on. Wingfield adds: “The reality is there’s an awful lot of benefit in being called the Royal National Institute of Blind People. People trust us, we have 150 years worth of history and it’s important to recognise the royal charter”. Wingfield stated that all charities invest a huge amount of money and cites others that spend a great

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deal more (up to 10 times) than RNIB does on marketing itself. “We know from detailed research that investing in the brand actually leads to greater income for the organisation,” he says.

The overarching aim of this campaign and its messaging is to show people what RNIB stands for: to change society, mobilise communities and equip individuals with sight loss with helpful advice and tools.This year marks our 150th anniversary, so we’ve been undergoing a lot of reflection. But we have also been really thinking about what we want to stand for, for the next 150 years and how we can continue in our cause to help more people with sight loss.

Clumsy ‘cos I’m Harry, not ‘cos I’ve got cataracts.

See the person, not the sight loss

Glaucoma didn’t stop me going to the gym.The bar on the way did.

See the person, not the sight loss

RNIB’s new poster campaign urges the public to view sight loss differently.

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Living with sight loss doesn’t make me brave. Singing Queen at karaoke does.

See the person, not the sight loss

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Your Voice

Happy Anniversary RNIB!From a well-known yellow bear to a keen gardener, Connect showcases some of your amazing stories as part of our 150th celebrations.

Since Dr Thomas Armitage founded what we now know as RNIB in 1868, there have been huge changes and advancements to the daily lives of people with sight loss. Here we highlight some of your incredible stories that you have shared with us.

Sean Stanley Thirty years ago, I lost my sight. I was shot in the head whilst I was working in my off-licence. I woke up three months later in hospital. I was informed I’d lost my sight.Apart from my wonderful wife, Shirley, with whom I’m celebrating our 27th wedding anniversary, Talking Books are the most important part of my life. From the moment I’m up in the morning, I’m constantly reading. Talking Books are everything to me. They’re a lifeline.

Maya-Liam HaynesI use a long purple cane. It has a black handle and then it’s bright purple all the way down. It’s got a marshmallow tip, which means I can move it from side to side in the street as I walk, so I know where I’m going and don’t crash into anything. Also, it lets people know that I am registered blind as well.I like it to be coloured because I’m proud to use it and it’s a really cool, vibrant thing to be using. Blind and partially sighted people have to do a lot of work to make sure

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that they know how to use a cane correctly and they’re confident with using a cane. A lot of that comes from the psychology around using one. If that means having a coloured one, then so be it.

Richard Cardell and Sooty Hi everybody, it’s Richard and Sooty here from the Sooty show. We are here because the RNIB is celebrating its 150th anniversary this year. Sooty says happy 150th anniversary RNIB.

Kevin SmithKevin Smith talks about his love of gardening.I lost my sight through vasculitis, which is inflammation of blood vessels in the head. My optic nerves are dying.

“ I used to garden before I lost my sight, but when I lost my sight, it was very sudden. I was very, very low. I had a very bad time for about six months. I wasn’t myself.”

I contacted RNIB and they suggested a charity called Thrive in London, who do lots of good things about gardening. I’ve got an NVQ in horticulture thanks to RNIB, which was lovely, because I never thought I’d garden again. Life’s a funny old thing isn’t it?On a blazing hot summer’s day, Kevin was invited to

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share his thoughts on RNIB’s award-winning community garden at the RHS Hampton Court Palace Flower Show. The garden has tactile and fragrant plants. There is a lovely walkway where a cane could roll along the edge, stopping you from falling into plants, as well as a smashing water feature.There are tall and short plants as well as some lovely trees. The bark felt silky. But the best things about the garden were the windows that illustrated eye conditions.

You know how difficult it is to explain to people, this is how I see things? Because you can’t, can you? It’s very difficult. I looked at it and went, yes, that’s it. That’s how I see. And everyone’s going, ‘Oh I’ve got you now’. And it’s really good. It’s a terrific garden.

To read more stories visit rnib.org.uk/150stories

(Below and right), RNIB’s award-winning sensory garden at this year’s RHS Hampton Court Flower Show.

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Five facts about the RNIB community garden1. Input was provided by blind and partially sighted people

to mark the fact that more than two million people are living with sight loss in the UK.

2. Sensory aspects of the garden conveyed inclusivity, illustrating how the senses of touch, smell and sound are something that everyone can celebrate, no matter how they see.

3. Steel walls with windows surrounded a central seating area. These windows featured filters simulating four of the most common eye conditions including glaucoma and diabetic retinopathy.

4. The garden was designed by Steve Dimmock and Paula Holland and sponsored by Magus Private Wealth.

5. The garden scooped the RHS’s People’s Choice Award for the Show and World Garden and a silver medal.

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RNIB History

Back to the futureDan Fisher, Head of Strategy and Planning at RNIB, explains how the charity’s past has helped shaped its future.

Part of what I and my team needed to do, was to go back to where RNIB came from to develop our new strategy.Because the principles of Dr Thomas Armitage, RNIB’s founder, are as relevant now as they were back then. A lot of what we are trying to do with the new strategy is essentially to reconnect to that. The sense of social injustice, the possibilities of technology, the passion and commitment for an under-represented group that our founder felt all of those years ago.Certainly our hope is that when the new strategy is published and is known, people will see that

sense of continuity. We’re always evolving, but actually reconnecting with where we’ve come from.

The past I’ll give you a little fact, just to keep us all amused. So the original name of what’s now RNIB was the British and Foreign Society for Improving the Embossed Literature of the Blind. I know, it was snappy right?Dr Armitage formally set up the Society in 1868, which would eventually become RNIB. If you picture life at that time, it was the year that public hanging was finally abolished and Queen Victoria was on the throne.

Margins of societyArmitage was a doctor and a man of status and relative wealth. But he began to experience sight loss later in his life and his career. Being an educated man with an enquiring mind, he took it on himself to go and find other people experiencing sight loss, including meeting people in workhouses and asylums. These places were not where you would expect to find a wealthy doctor.Dan Fisher

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Life for a lot of blind and partially sighted people at that time was on the margins of society.

Armitage spent around two years trailing across the country just meeting blind and partially sighted people. We talk in today’s jargon about customer sampling and understanding the voice of customers – Armitage was doing exactly the same back then. What he was trying to do was understand what life was like and what he could do fundamentally to help improve the lives of people at that time.It helped him understand some of the barriers that existed for blind and partially sighted people then. The main one was access to society – people feeling marginalised and outside the mainstream.In employment, for example, a lot of the material in the archives here at RNIB show that the predominant professions that blind people were involved with included basket weaving, piano tuning or mattress stuffing.

Meeting Louis BrailleWhat Armitage hit on, was the fact that access to mainstream society and employment hinged on being able to communicate and specifically read. So his research and his interest in technology at

the time led him to meet a man called Louis Braille.

In good Victorian pioneering spirit, what Armitage did was take a technology breakthrough, take a great idea and make it universally available to the mainstream.

RNIB was founded to produce embossed literature, or braille, as it is now known, for blind and partially sighted people.Very quickly, the other barriers to life for blind and partially sighted people became a fixed interest for RNIB. It started building institutions and establishments

National Institute for the Blind Kiosk (1930-40s)

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which employed blind people, housed blind people and looked after blind people.

The end of the First World WarIn 1918, RNIB opened schools and colleges. It was a very symbolic year as it signalled the end of the First World War. A lot of its “customers” were returning servicemen who had been blinded in the trenches. RNIB was a key provider of rehabilitation services for people who had been blinded on the front.

The campaigning phaseThe next phase coincided with the establishment of the welfare state in line with a lot of charities. RNIB became more of a social care provider.

In parallel to all of that, it was also a strong campaigner.

Some of the key successes included the Blind Persons Act in 1920 that made it a duty for local authorities to provide for the welfare of blind people.

Fast forward to more recent years and you can see that RNIB has been instrumental in the provision made for blind and partially sighted people in Personal Independent Payment assessments. So we’ve always been true to Thomas Armitage – a pioneer and campaigner for social justice. But at the same time, he was someone who appreciated the power of technology, innovation and

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breakthrough, to generate really significant social change.This has really informed RNIB’s new strategy. As well as going back and saying “How did Armitage do it 150 years ago?” we’ve looked at recent big societal shifts in our understanding of things like mental health. And one thing we really know is that communities coming together, for example the Connect community, show that speaking with one voice can achieve seismic changes and attitudes.

The futureAt the moment, we’re serving a minority of people experiencing sight loss in the UK, and our really simple aim is that we become

universal. We want to be there for everybody every time, and to address the needs of the whole community.So what people will see is RNIB becoming much louder, prouder, more available to everyone from all sections of society in the community, and becoming the place that anyone can go to for advice, information and guidance on issues relating to sight loss.

Visit rnib.org.uk to find out more about our services

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Quick polls

And the survey says…Ever wondered what some of the funniest calls to the RNIB Helpline were, or the weirdest antics of fundraisers? Then read on…

The Connect community was invited to take part in a poll to put forward the burning questions they wanted answers to for this special edition. We can now reveal the findings – be warned some of the answers are hilarious and one in particular is just plain weird!

WebtasticMore than half of you want to know what household products RNIB has helped to make accessible that you might not know about. RNIB was a founding member of the W3C, the main international standards organisation for the World Wide Web. It was also involved in the development of the Samsung Smart TV, the new Bank of England £10 note, Amazon Kindle Fire tablets, iOS software platform and various Microsoft products and services including Windows.

An itchy taleNearly half of you want to know the most bizarre request received by the Helpline.One caller was most concerned about whether they’d know if there was a spider in the bath after being recently diagnosed with sight loss. Safe to say the caller was terrified of spiders! Another highlight includes someone asking where they could buy some “luminous tracksuit bottoms”.It’s not only the Helpline that has some unusual requests; the Transcription Service at Ivybridge was once asked to produce a braille transcription of detailed instructions on how to deal with itching inside a plaster cast.

RNIB helped make the new £10 note accessible

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All for a good cause More than a third of you want to know the weirdest fundraising activity someone’s ever done.From the weird to the wonderful, one of the biggest efforts made to fundraise for RNIB goes to a trio from St Helens. They each had Sooty tattooed on them to raise money and thank RNIB for the support given to their friend after he lost his sight.If you want to be impressed, check out @thehockeyblogger on Instagram showing off his hockey skills while wearing a blindfold as part of RNIB’s In the Dark fundraising challenge.And finally, one fundraiser was advised not to tie themselves up in a black bag to experience living without sight (please do not try this at home or anywhere!)

Working togetherThirty-four per cent want to know which high profile companies RNIB has worked with over the years.There are many, such as global giants Amazon and Samsung. In addition, the charity is a member of Google’s Global Accessibility Strategy Board and Microsoft’s Global Accessibility Summit. RNIB was also nominated by Samsung

to carry the Olympic Torch on the second day of the Torch relay at the 2017 Winter Olympics in Pyeong Chang. RNIB’s Robin Spinks was given the honour to do this on behalf of RNIB and Samsung.

BookwormsA quarter of you asked what’s the most popular book title.We can’t put a finger on the exact books, but some of RNIB’s most popular authors include Jeffrey Archer, Catherine Cookson, Peter Robinson and Agatha Christie. It seems we have some crime fiction fans in our midst.

Sixteen per cent asked whether any of the Connect Community had their work published as a book.There are some budding authors and talented writers in the Connect Community. Diane Woodford has written a book called Living with Sight Loss: a Type 1 Diabetic’s Life Story. And Maxine Turkington’s Cooking for VIPS: a Cookery Book for the Visually Impaired offers handy kitchen tips for blind and partially sighted people.

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ECLOs are here for you Fifteen per cent of you want to know how many hospitals RNIB work in.RNIB employs Eye Clinic Liaison Officers (ECLOs) in 57 eye departments across the UK. This is a total of 63 ECLOs, seven of which provide locum cover.There are a further 41 ECLOs who are employed by the NHS or local sight loss charities who have completed the RNIB ECLO qualification, accredited by City University London. These ECLOs work to RNIB’s Quality Framework and Good Practice Guidelines. RNIB also delivers the only ECLO Continuing Professional Development through a series of seminars held three times a year.

Listen up Fourteen per cent of you want to know how many people listen to RNIB Connect Radio. RNIB Connect Radio has over 154,000 blind and partially sighted listeners per week.

Time to retweetTwelve per cent asked what content was most retweeted on social mediaThe most popular tweet with 433 retweets was about how to enable image descriptions on Twitter.A tenth want to know who is our most iconic campaigner.Marsha de Cordova is the Labour Shadow Minister for Disabled People and is registered blind. Marsha recently supported RNIB’s Personal Independence Payment (PIP) campaign to make assessments fair and accessible. Marsha met with the Minister for Disabled People and asked a series of questions in Parliament. She continues to promote this issue with the government and supports RNIB.And finally five per cent of you want to know how many roller tips we’ve sold.We sell around 24,000 canes per year, the majority of which are symbol canes. This is followed by long canes, guides canes, and a tiny fraction of special order canes. Around 13,000 accessories are sold each year, including roller tips and replacement tape.

Get involved with the Connect community at rnib.org.uk/connect

anniversary

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Tech spot

Taking accessibility to the next level at MicrosoftIn an exclusive interview, Jenny Lay-Flurrie, the Chief Accessibility Officer at Microsoft discusses talking software and accessible apps.

When Jenny Lay-Flurrie joined IT giants Microsoft 13 years ago, she worked on Hotmail. More than a decade later, she become their Chief Accessibility Officer and was charged with taking accessibility to a whole new level. Her passion for accessibility came after she got into the disability employee group at Microsoft through her deafness. Her role is to help to push innovations and get them through all the obstacles that any little start-up has, even when it’s in a big company, and get them out into the market.

Q: How has Microsoft and accessibility changed over the decades?A: Microsoft has had a long history in accessibility. The first feature was sticky keys, in 1994 we think. Over the course of 20 years, we’ve had times when we’ve got it very right and very wrong, but over the last three years we’ve very much taken an effort to deliver, empower and to be far more people, human-focused.

Q: Can you tell us about the process to make software accessible? Say for example, with something like Office 365?A: It’s very methodical. We look at every single component, and we make sure that we are not only reaching the minimum bar, we’re going above that. We’re beginning to see the power of artificial intelligence (AI) to help us with accessibility. For example, if you build a PowerPoint slide and you pull in an image, that image will have some text already attached to describe it. You can edit the text

Jenny Lay-Flurrie

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to make sure it’s completely appropriate for the picture. The accessibility checker in Office is another feature that is very powerful. You can check your email or Word document to make sure that it is fully accessible before you send it.

Q: Microsoft has come up with some incredible apps such as Seeing AI and Soundscape. Can you tell us more?A: Seeing AI came in two years ago. We had people walking around the Microsoft campus with phones taped to their heads – we thought they were bonkers! They were working on how you could read the menu in a cafe using a combination of phone camera technology and AI. A year later, we launched Seeing AI and

now there have been five million pictures taken with the app.Soundscape began as a research project in the UK, with Amos Miller, a product strategist at Microsoft who is blind. He wanted to be able to take his daughter to the Natural History Museum in London, to just get up on the morning and go. So he figured how to build a 3D audio soundscape to enable you to go from A to B.

Q: Microsoft won the Helen Keller Award for inclusion efforts from the American Foundation of the Blind. What were your thoughts on this?A: It’s an incredible honour. It’s very humbling to stand on stage next to colleagues from across the community, to be recognised,

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Explore the appsSeeing AI uses artificial intelligence to recognise objects, people and text via a phone or tablet’s camera and describes them to the user. Microsoft Soundscape uses 3D audio technology to enhance your awareness of what is around you, and thereby help you get around and explore your surroundings.Both apps can be downloaded from Apple’s App Store for free.

because we really do feel that in some ways we’re just getting going, even 20 years in. There’s so much ahead of us. This is the coolest space to be in and I think I have the coolest job.

Q: Tell me about the relationship that you and Microsoft have with RNIB.A: I may live in Seattle, but I’m British and I grew up with RNIB. I’ve always looked up to how RNIB brings folks together and empowers people through technology. When I was a student years ago, I had great conversations with RNIB as I was looking to do a degree in music and disability. Microsoft has also had a very deep partnership with the RNIB over the years. We get invaluable feedback and a lot is being done through partnership.And I want to wish, and thank RNIB for an incredible 150 years. Have a wonderful anniversary.

Get inspired by technology If you’d like to get online or learn more about technology, but don’t know where to start, our Tech for Life team can support you. Get in touch by calling the RNIB Helpline on 0303 123 9999.

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Changing society

Campaigning to make every day betterOver the years, RNIB alongside people with sight loss have campaigned tirelessly to bring about positive change. Here are some of the highlights.

Disability Living AllowanceThe issueRNIB thought it was wrong that blind people weren’t able to receive the higher rate of disability living allowance (DLA). DLA is a benefit aimed at helping people meet the extra costs of a disability. As a result, many people faced considerable impact on their mobility and independence.

The action What resulted was the biggest lobby of Parliament ever by people with visual impairments. Hundreds of letters were written to MPs, the Secretary of State for Work and Pensions and the Minister for Disabled People.

Result The government agreed this was an unjust situation and awarded the higher rate mobility component of DLA.What this showed was the benefit of working together with

campaigners. With the great activity at local and national level, RNIB was able to safeguard independence and mobility for people with sight loss and justice was done.

Make Money Talk campaignThe issueAt the start of this campaign, only 11 per cent of blind and partially sighted people said they use cash machines unaided, compared to 80 per cent of the general public. Despite the banking industry being slow to change, the campaign surprised everyone.

Result Success came quickly as Barclays declared they would make their cash machines talk within the year.The success continued as other major high street banks followed suit. Currently, most branches of the following banks provide talking ATMs: Barclays, Lloyds, Halifax, Sainsbury’s, TSB, Nationwide and Santander.

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It’s been a hugely significant win for blind and partially sighted people, enabling the use of the increasing number of services offered through cash machines. This includes checking balances, withdrawing cash from a menu of options, changing pin numbers and topping up a mobile phone.

The fight continues Equal access to ATM services remains fundamentally important to all of us. However, we know that blind and partially sighted people are still facing barriers when it comes to accessing these services. So RNIB will continue to support people to challenge inaccessible banking services.

Accessible health information The issue Getting your health information in an accessible format is crucial to independence. Campaigners have been advocating for this for some time.

Result The NHS Accessible Information Standard came into force in England in July 2016. The new standard applies to all organisations that provide NHS services and adult social care, including GPs, hospitals, pharmacies, local authorities and social services.

The standard has strengthened the existing legal right that blind and partially sighted people already have to accessible information under the Equality Act 2010. It obliges NHS providers to proactively find out what the information needs of their patients are, and to act on them.This victory was the result of campaigners from across the country and RNIB joining forces to get the NHS to make this right a reality.

Useful toolkitIf you haven’t been asked about your health information format needs by your latest NHS service, there is a toolkit that can assist you at rnib.org.uk/accessible-health-information.

The next campaignLater this year, RNIB is launching a new campaign that aims to ensure that blind and partially sighted children, teenagers and young adults have high quality educational support. The current system is failing to deliver and it is important that this changes. Please support it.

Get involved. Find out more at rnib.org.uk/campaigning

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Eye health

Looking into the past and future of eye health The world of eye medicine has seen many innovations over the years. Eye health expert Professor Rupert Bourne shares his highlights.

Dramatic changesThere’s been a rapid advance in the treatments for eye disease over the last 10 or 20 years. From a worldwide perspective, cataract surgery is one of the most cost-effective healthcare interventions ever – it has made a massive difference to many people’s lives.And with diabetic retinopathy, there have been some very marked developments in the UK, for example the diabetic retinopathy screening service, where all diabetics are signed up for regular screening. It’s the envy of the world.Glaucoma, which happens to be my specialty, has seen considerable developments in terms of new medications and ways of delivering them to the eye. You may know about eye drops being used to bring the pressure in the eye down. Now, there are studies looking at little pellets that can be inserted into

the eye, which release the drug over time, meaning you won’t have to remember to take drops on time.With wet macular degeneration, there was a time early in my career when there was very little you could do for patients, who then suffered central visual loss. A dramatic change has occurred over the last couple of decades, where we now have treatments that we can deliver into the back of the eye, which can prevent progression of the disease.

Future developmentsThere’s a lot of work into retinal diseases, and looking at new systems of delivery of treatments. There are new studies looking at treating geographic atrophy, which is what was called dry macular degeneration and that’s a disease that we’ve had very limited scope to treat in the past. Gene therapies, particularly

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for inherited rare diseases, are very important, not just for the small numbers of individuals who could benefit greatly from these treatments, but also from the understanding of retinal diseases generally.There are trials for gene therapy treatments going on at the moment, but it may be a few years before they are available. The studies need to be published, reviewed by other experts in the field and the NHS bodies need to look at whether it is suitable and cost-effective to be offered on the NHS.

Eye disease in the UKWe don’t currently know what the breakdown of blindness and vision impairment are within the UK. However, there is a new study called the UK National Eye Health Survey, which will hopefully start next year. It will be the first time in the UK that we have run a nationally representative study of eye disease, looking at 25,000 people over the age

of 50 across the UK. This will give us the information we need to understand whether we really are targeting the right people and whether our resources are being properly utilised.

Patient involvementA fantastic development has been the amount of participation in research that is going on. Researchers are definitely listening to patients far more than they did in the past. We involve patients in the research process very early on now. We ask patients, how we should deliver a study to maximise the benefits for them. Ultimately, if you don’t ask the people who are going to benefit you’re not going to design a study in the right way.At the moment, 80 per cent of our hospitals are delivering NHS eye research studies. There is far more awareness of patients and how they can get involved in this sort of work, which ultimately has great benefits for both the individual, but also for society.Professor Rupert Bourne is Chair of the Institute for Health Research Ophthalmology Specialty Group.Interested in participating

in eye health research?If you’d like to get involved in a clinical trial, ask your eye specialist or go to clinicaltrials.gov where there is a record of all trials being done anywhere in the world.

Find out more about your eye health and eye conditions by visiting rnib.org.uk/eye-health/eye-conditions

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Book lovers’ corner

Ten facts about Talking BooksEver wondered how and when Talking Books got started?

1 Talking Books was the brainchild of an officer who lost his sight during the Great WarCaptain Ian Fraser was blinded during the Battle of the Somme in 1916. He tried to learn braille but found it too difficult. In frustration, he thought, “If books could only talk!” He came up with idea of recording a “talking book”, and in 1918 he started working with RNIB to find a solution.

2 It took more than 10 years to develop a suitable reading machineA major obstacle was the fact that none of the gramophone companies made records that played longer than five minutes. In 1932, Fraser’s team at RNIB found a way to extend recordings on shellac records to 25 minutes per side by narrowing the grooves and reducing the playing speed.

3 Agatha Christie’s The Murder of Roger Ackroyd was one of the first three Talking Books to be recordedRNIB set up its own recording studio in 1934. Christie’s popular mystery was one of the first to be recorded in the studio, along with Joseph Conrad’s Typhoon and The Gospel According to John.

4 A set of original discs featuring Joseph Conrad’s Typhoon recently surfaced in CanadaDiscovered in 2016 by a vintage record collector, the fragile shellac discs are believed to be the oldest surviving Talking Book.

5 The average early Talking Book fitted onto 10 heavy shellac discsThe first Talking Books were posted to customers in November 1935. People listened to the records on customised turntables which were available to blind civilians at cost price and to veterans for a lower cost.

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6 Decca and EMI used technology developed by RNIB when they started producing long-playing music recordsAfter RNIB developed the next-generation player in 1947 that could run off mains electricity for ease of use, major music record labels used the same technology to develop their record production.

7 The average modern Talking Book lasts 12 hours and take up to 18 to 20 hours to recordRecording a Talking Book is very much a skill; professional actors must prepare before coming to the studio and will often be recording for three consecutive hours.

8 To date, just under 20 million Talking Books have been lent out to blind and partially sighted peopleTalking Books can now be read on tablets, mobiles, USB and CD players. In 2015, to celebrate the 80th anniversary of Talking Books, the service was made completely free to blind and partially sighted people.

9 Famous authors have recorded their own books at our Talking Book studiosThey include Roald Dahl and J.K. Rowling, and many politicians and broadcasters have also recorded their own books.

10 Last year alone 2,500 new titles were added to the Talking Books library.There are over 30,000 Talking Books in RNIB’s library, and the number is growing all the time, 150 new books being added every month.

Sign up to Talking Books for free. Visit the rnib.org.uk/talking-books-service, or contact RNIBs Helpline on 0303 123 9999 or email helpline@rnib.org.uk

Contact UsRNIB HelplineCall: 0303 123 9999Email: helpline@rnib.org.ukVisit: rnib.org.uk/askThe Helpline is your one stop shop for help and advice. You can use it to access the range of services we offer, including:

• eye health information• emotional support• benefits advice• product information• fundraising, volunteering

and campaigning• RNIB Library, including

Talking Books, Overdrive, RNIB Newsagent and telephone groups.

The Helpline is open Monday to Friday, 8am to 8pm and Saturday 9am to 1pm. Calls cost no more than a standard rate call to a 01 or 02 number.

RNIB Infoline Call 0203 432 1488 to hear useful recorded information and listen to our most popular publications, including Connect magazine, over the phone.

RNIB Connect team Call: 0303 1234 555Email: connect@rnib.org.ukWrite to: Connect magazine, RNIB, 105 Judd Street, London WC1H 9NE

Want more Connect stories? Sign up to the Connect eNews at rnib.org.uk/connect.

The Connect team can update the format in which you receive the magazine. You can choose from large print, braille, audio CD, USB or by email. They can also help if you have a story to share.

Listen to RNIB Connect Radio 24 hours a day, seven days a week on Freeview 730 and online on rnibconnectradio.org.uk. Or download and listen to podcasts via Audioboom, iTunes or your regular podcast app.

Sign up to RNIB’s monthly campaigning eNews at rnib.org.uk/campaigning

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