We Re RNIB Scotland and We Re Here for Everyone Affected by Sight Loss

2.Annual Review 2014/15 3.RNIB Scotland

1 We’re RNIB Scotland and we’re here for everyone affected by sight loss.

Whether you’re losing your sight or you’re blind or partially sighted, our practical and emotional support can help you face the future with confidence.

Our ambition is to make every day better for everyone affected by sight loss: by being there when you are losing your sight, supporting independent living, creating an inclusive society and preventing sight loss.

2 Contents

2. About RNIB Scotland 3. Contents 4. Key statistics 5. From our chair and director 7. Our work: Being there 7. Willie's story 8. Our work: Independence 8. Tuesday's story 9. Our work: Inclusion 9. Graeme's story 10. Our work: Prevention 10. Alana's story 11. What we set out to do - and what we achieved 11. Help from Vision Support Service 12. Living every day with confidence 13. Accessing welfare benefits 14. Getting out and about confidently 15. Making use of technology 16. Achieving full potential in education 17. Supporting people into work 18. Making information accessible 19. Improving eye-healthcare and understanding eye conditions 20. A brief look at our finances 22. Our supporters 23. Thank you 24. How you can help 25. Contact us

3 Key statistics

95 per cent of people in surveyed in Scotland said they would be ‘devastated’ if they were diagnosed with a sight-threatening condition. 42 per cent of all cash machines are now activated to talk. 1,700 people were supported by our Vision Support Officers. 96 per cent of people we surveyed reported better emotional wellbeing after contact with our Vision Support Service. Our Technology Support Squad volunteers helped 238 people to make best use of new technology. 20 million homes can listen to RNIB's Insight Radio. 744 people helped with employment support (140 gained or retained employment). Our welfare advice service help people claim over £750,000 in benefit entitlements.

4 From our Chair and Director

In the next 15 minutes someone’s life will change forever. Someone will feel more alone than they’ve ever felt before. Someone’s future will feel bleak, even terrifying. In the next 15 minutes, someone will be told they are losing their sight. This year we’ve worked to ensure more eye departments in Scotland have access to a Vision Support Officer. This is a huge job but one that is absolutely necessary, so people get the practical and emotional support they need to face the future without fear.

Everyone is different and will want a different level of independence – our job is to get the right mix of skills and tools to help someone make confident choices.

A key aim for RNIB Scotland is to ensure that those who are newly diagnosed with sight loss will receive the vital emotional and practical support needed to come to terms with their condition. Our Vision Support Service works at that crucial early stage to reassure people that they can continue to live independently. We want to build on the services we already have in place and introduce new ones to help people find their lives again.

No one should needlessly lose their sight. This year we’ve worked to secure access to new treatments for people in Scotland. And, because people from minority ethnic communities are at greater risk of developing a number of common eye conditions, we launched our 'You Care, Eye Care' project to improve eye-health awareness among people of black African origin in Glasgow.

This year we transcribed even more books into audio and braille, and we've continued our work with children and young people with sight loss from nursery age to early adulthood. We also worked to tackle 'hidden' sight loss among people with dementia and those with a learning disability.

Other highlights of our year include our fourth Techshare conference in Glasgow, producing a new DVD for parents of young children with sight loss, the launch of our Bus Charter campaign in Edinburgh and our campaign to ensure welfare reform doesn't unfairly disadvantage people with sight loss.

Every day of this year we have worked to ensure newly diagnosed people are reached sooner, people are supported to live the independent lives they choose, society is a more inclusive place and no one needlessly loses their sight. Everything we’ve achieved this year has only been possible through the generosity and commitment of our supporters, and we thank you all.

Finally, we would like warmly thank Ken Reid for his sterling work as our previous chair during this period.

5 Sandra Wilson Chair, RNIB Scotland

John Legg Director, RNIB Scotland

6 Our work: Being there Being told that you're losing your sight can be devastating. We're focused on making sure more people affected by sight loss are reached early. We want more eye clinics to have Vision Support Officers (also known as sight loss advisers) – trained professionals who provide patients and their families with vital emotional and practical support at the point of diagnosis.

Willie's story My name is Willie Turner. I’m 58 years old. I've had four strokes now. After my first stroke, I lost my eyesight. I was devastated. I used to wear contact lenses and I knew what having bad eyesight was like, but not losing your eyesight.

I wasn't mentally prepared to lose my sight. I've always been reasonably fit and healthy. I was a scratch golfer and avid Dundee football club fan. And then one morning, I woke up and I couldn’t see. It's an overnight devastation that you have to deal with.

Hemiaenopia, my sight loss condition, is a difficult one to get your hear around. I can see things in the distance but not around me. For a while I was in denial that I was effectively blind.

Having access to the Vision Support Officer in Ninewells Hospital in Dundee was influential on my state of mind at the time. I was in a state of shock and without their care and attention, I don't think I’d be here today.

7 Our work: Independence We work to ensure that blind and partially sighted people can make the most of their lives. This means they can access the support, services, products and technologies that enable a good quality of life, along with opportunities to develop the skills for confident living.

Tuesday’s story Tuesday Berry grew up with a passion for film and the creative arts, despite being visually impaired from birth. She dreamt of going to university to study film, but was told repeatedly at school that it would be impossible with her sight loss.

“I was shy, and I doubted my abilities,” says Tuesday. “I didn’t even feel able to get the bus on my own or go anywhere unaccompanied.”

All this changed after Tuesday joined Haggeye, RNIB Scotland’s youth forum. As part of Haggeye, Tuesday began campaigning to make services and facilities more accessible. Her work took her to all over the UK, and Tuesday blossomed in confidence.

“I even travel to foreign countries independently now!” says Tuesday, who is in her third year at university studying film and media, and has already won several film awards.

“RNIB gave me the skills and confidence to go out and get to where I wanted to be. When I had a bit of bumpy start to university, their Education and Family service helped me get the support I needed,” said Tuesday.

“I’ve come a long way, and I owe a huge part of that to RNIB.”

8 Our work: Inclusion We want society to include blind and partially sighted people as equal citizens and consumers, as barriers to using mainstream goods and services result in isolation and exclusion. We're raising awareness within communities and society to secure changes in behaviour that result in improved access for blind and partially sighted people.

Graeme's story Graeme Colgan, 24, has significant sight loss and is also a wheelchair user. He’s a member of our Haggeye youth forum and has been helping us campaign to improve travel for blind and partially sighted people.

Graeme took part in one of our ‘Swap With Me’ events in Edinburgh, which involved bus drivers swapping places with campaigners to get a better idea of what it’s like to catch a bus with little or no sight. Drivers, wearing blindfolds and simulation spectacles, were offered support and advice by blind and partially sighted people when they tried to board the bus, get a ticket and find a seat.

"I really enjoyed the event at the Lothian bus depot,” Graeme said. “The bus driver I was with was very interested in me and what it’s like to use a bus as someone with sight loss. I’m now more confident now that a journey on Lothian buses will be a good experience in the future!” says Graeme.

"It's really important for everyone who provides any kind of service to make an effort to understand the needs of customers with sight loss. It would help with a visual impairment feel more included in society."

9 Our work: Prevention We want fewer people to lose their sight. We work to raise awareness of eye health and campaign for improved services and for effective treatments to be made available. We support people to cope with sight loss by increasing their knowledge and understanding of their eye condition.

Alana's story Alana Miller is a BT projects manager from Glasgow has had diabetic macular oedema for the past nine years.

The condition affects around 4,000 people in Scotland and is caused by a build up of fluid on the macula at the back of the eye. This can blur central vision and, if left untreated, seriously impair vision within two years in around half of cases.

Alana's sight was prevented from deteriorating further thanks, in part, to our work in pressing for the treatment Ozurdex to be approved by the Scottish Medicines Consortium. This led to it being made available on the NHS in Scotland.

"Before the treatment my vision changed so much that it was next to impossible to actually get glasses. I believe I was actually the second person in the whole of Scotland to be treated with Ozurdex, and it has made a big difference to me," says Alana.

"It's now much easier to get glasses. It means I no longer have to take time off work every couple of months to go into hospital, as the Ozurdex injections are longer lasting.

"I can now even wear varifocals which I never could before. My optician even says that, looking at the scans, he can't detect any fluid in my eyes."

10 What we set out to do... and what we achieved. "Knowing RNIB is there is so reassuring, like a comfort blanket. RNIB gives people the confidence to get out there and live their lives." Peter Seaman Help from our Vision Support Service Vision Support Officers ensure that people who are losing their sight don't have to face this life-changing event alone. Vision Support Officers can take the time to explain a patient's eye condition to them and discuss treatment and medication. They provide emotional support to patients and their families along with practical help, such as putting patients in touch with key services.

In 2014/15, we operated Vision Support Services in six of Scotland's 14 health board areas. Our new service in Forth Valley was launched this year. We're working hard to ensure everyone who needs support in Scotland gets it, and we plan to extend our service further in 2015/16.

Our impact In 2014/15, RNIB Scotland's Vision Support Officers supported 1,700 people. Ninety- six per cent of these people reported better emotional wellbeing, especially in regard to reduced pessimism about the future. Ninety-two per cent told us their contact with our Vision Support Service was 'the major cause' or 'the most significant cause' of improvements in their independence and quality of life.

Pullout quote: 1,700 people were supported by Vision Support Officers

11 Living every day with confidence We aim to provide people with sight loss with the support they need to improve their choices and enjoyment in daily living and to make the most of their sight.

Our 'Looking Forward' programme aims to build confidence among those newly diagnosed with sight loss and to help people find their lives again. Peer facilitators can share their experience of being blind or partially sighted and help participants discuss the emotional impact of sight loss.

Working alongside hearing loss partners, our Joint Sensory services were funded by the Scottish Government until 2014, and included hidden sight loss training and community drop-in services.

RNIB Scotland was also contracted to provide a number of services to people with sight loss in Edinburgh and the Lothians, including rehabilitation and mobility training.

Our impact In 2014/15, we held 18 Looking Forward sessions for 118 participants and 20 family members and carers. We also held 68 Joint Sensory drop-in sessions that reached 152 participants with sensory loss, as well as 45 family members and carers. We also delivered our 'Understanding Sight Loss' and 'Vision Champion' training to 112 professionals.

Our RNIB Edinburgh and the Lothians section delivered rehabilitation training for 415 people, mobility training for 128 people, and low vision assessments for 61 people.

12 Accessing welfare benefits We've continued our work to ensure blind and partially sighted people, their families and carers can maintain their independence by receiving the benefits they're entitled to.

Three years ago we became deeply concerned that the proposed change from Disability Living Allowance (DLA) to Personal Independence Payment (PIP) failed to recognise that sight loss can be a serious disability and people who can't see face expensive and ongoing extra costs. We subsequently worked tirelessly alongside our blind and partially sighted campaigners to secure clear changes to the government's assessment criteria and ensure people with sight loss would receive PIP.

Our impact We launched our Advice Plus service in July 2014, offering benefit and entitlements advice to blind and partially sighted people of working age who live in Edinburgh, Forth Valley and Ayrshire. The service was used by 139 people in 2014/15. Our expert advisers helped people to claim a total of £311,483 in welfare benefits they were entitled to.

Our income maximisation service, which advises on all types of benefits enquiries and covers Edinburgh and the Lothians, assisted 167 new clients and helped people claim £444,920 in entitlements.

13 Getting out and about confidently Blind and partially sighted people have asked us to focus on making public transport more accessible and street environments safer.

We’ve been doing this by persuading bus companies to sign up to our Bus Charter, which sets out a list of commitments to improve travel for people with sight loss. We’ve also run ‘Swap with Me’ events – where bus drivers have the opportunity to put themselves in the shoes of a passenger with sight loss, to improve bus driver awareness and behaviour.

We are also looking at ways to make our street environments safer, highlighting challenges such as the hazards caused by A- boards, inaccessible crossing and more.

Our impact First Bus, Go Ahead and Stagecoach have signed up to our Bus Charter, as have seven regional bus companies, all making a public commitment to take the needs of passengers with sight loss into account in their service delivery.

Edinburgh-based Lothian Buses became the first Scotland-only based company to sign up to the Charter. The ‘Swap with Me’ event we held with them, with the help of blind and partially sighted campaigners from our Haggeye youth forum, marked the launch of RNIB's UK-wide campaign.

14 Making use of technology We know from our research that people with sight loss face significant barriers when it comes to using technology. Some people find that their sight loss itself is a barrier, while others lack skills, cannot access training or are unaware of the benefits of being online. To overcome this, we’ve focused on giving people the skills, tools and confidence they need to make the most of technology to improve their independence.

Our Technology Squad volunteers continued to visit blind and partially sighted people in their own homes to help them make best use of new technology.

We organised our fourth TechShare Europe event in Glasgow, which explored how new technology can save sight and help people with sight loss to live independently. Speakers from technology giants Apple, Google and Microsoft discussed how they can enhance the accessibility of their products.

Our impact In 2014/15, our 94 Technology Squad volunteers helped 238 people with 390 requests.

Our TechShare conference attracted around 400 delegates from leading tech companies and research centres. The event promoted discussions and idea-sharing about the latest accessible technology innovations and debate about digital access in our increasingly connected world.

15 Achieving full potential in education There are around 2,500 children and young people in Scotland with sight loss. We work from early years, through school and then through the transition to further or higher education and employment.

We provide advice, support and tools to schools and education professionals, for example through our TELL technology loan scheme which enables schools to test out assistive devices before purchasing. We offer free access to downloadable resources to help students get textbooks in an accessible format through Load2Learn, a web- based service delivered by RNIB and Dyslexia Action.

We directly engage with children and young people through our RNIB Activate programme, our Haggeye youth forum and our family social activities. We also run summer camps to encourage young people to live independently as they approach adulthood. Participants can go climbing, do archery and cooking, as well as attend confidence-building workshops and training in assistive technology and travel.

Our impact We submitted our views on the educational attainment gap between sighted pupils and pupils with sight loss, as part of a government enquiry. This led to RNIB Scotland being invited to give an oral presentation to the Scottish Parliament's Education and Culture Committee, which prompted further questions by MSPs within the Parliament. Our Education and Family Services Manager has subsequently been included on a working committee to consider strategies to close the attainment gap.

Our Activate programme of activities in 2014/15 delivered one Promoting Independence summer camp, one West Coast Sailing Adventure, two Family Days, one residential Family Weekend and five After-School Clubs. A total of 172 children and young people with sight loss took part in these activities.

16 Supporting people into work Government figures show that only 45 per cent of blind and partially sighted people of working age are in employment. We’ve been working to change this by continuing to provide employment advice and support to people with sight loss. We’ve also continued working with employers to encourage them to employ more blind and partially sighted people.

Young people with sight loss often experience difficulty in finding a suitable job, training course or college or university place if they can lose the support networks they have built up at school and home. Our Lottery-funded 'Looking to the Future' project, launched towards the end of this period, will help them plan and prepare for life after school and to make the choices that best suit their skills and ambitions.

Our impact In 2014/15, we helped a total of 744 blind or partially sighted people with employment support.

Of these, we helped 140 people to secure or retain employment, supported 254 through digital inclusion initiatives, and 148 through employment training programmes. The remainder were split between students accessing our services and customers on various other initiatives.

17 Making information accessible We’ve maintained pressure on government services to ensure people with sight loss are not excluded as service delivery continues to move to digital channels. Our particular focus has been on ensuring people can access information they receive from health, employment and banking services. We’ve supported legal cases against the Department for Work and Pensions (DWP) for not providing information in accessible formats, and we’ve continued to press health boards to ensure all the information they provide is available in accessible formats.

RNIB Approved, our newly-launched quality assurance mark, will help people with sight loss across the UK to identify products that are easy to use and encourage businesses to make their products accessible. Products which are granted RNIB Approved status go through a rigorous testing process by accessibility experts before being reviewed by a panel of blind and partially sighted people.

We’ve also continued to promote the need to make cash machines accessible.

Our impact Our legal representation to the DWP led to a major internal review that has resulted in the DWP proposing to establish a special unit to deal with accessible information.

Seven major banks have made a public commitment to introduce talking ATMs and 42 per cent of all cash machines are now activated to talk.

New debit and saving cards launched by the Royal Bank of Scotland (RBS) are the first products to receive the RNIB Approved quality mark. The cards were developed in partnership with RNIB and are the first of their kind to be completely accessible to people with sight loss, making everyday banking easier.

18 Improving eye health care and understanding of eye conditions We continued our drive to improve eye care services by engaging with the Scottish Medicines Consortium (SMC) to secure access to new treatments.

We partnered with Carers Trust Scotland during National Eye Health Week to `raise eye health awareness among carers, as many of them care for people who are vulnerable to eye health conditions or less able to communicate problems about their sight. We emphasised that not only are eye examinations free in Scotland, but they’re useful for picking up the first signs of other health conditions such as diabetes and high blood pressure.

Our 'You Care, Eye Care' project targeted people of Black African origin with sight loss in Glasgow, with the aim of supporting them to make informed choices regarding eye health. We did this by providing eye health information in accessible formats, recruiting and training community-based volunteers, and working in partnership with other organisations.

Our impact Thanks to our efforts with the SMC, we helped to secure approval for the treatments Eylea and Ozurdex for macular oedema secondary to central retinal vein occlusion. This is a serious condition affecting the main vein in the eye which can cause blindness and other painful eye conditions.

We reached over 150 carers during National Eye Health Week in two health centres in areas of high deprivation. We also launched our first Eye Health and Diversity training that week with 15 learners, mainly from NHS Greater Glasgow and Clyde.

19 A brief look at our finances In 2014.15 we spent £20.8 million to raise £65.8 million - a three to one return on investment.

For every £1 we receive, we spend 81p on supporting people with sight loss. The rest is used to raise further funds and on running costs.

The RNIB Group of charities focused expenditure on the following areas of work: Independence - £80.5 million. Inclusion - £8.3 million. Prevention - £1 million. Governance - £1.4 million. Costs to generate funds - £20.8 million. Being There - £6.5 million.

Total expenditure - £118.6 million.

The RNIB Group of charities' income came from the following sources: Merchandising and sponsorship - £0.5 million. Income from charitable activities - £46.2 million. Other incoming resources - £2.5 million. Donations and legacies - £64.6 million. Investment income - £0.6 million.

This gave a total income of £114.5 million and a planned operating deficit of £4.1 million.

The RNIB Group of charities' resources at 31 March 2015 consisted of the following: Endowment funds - £5.7 million. Plus pension surplus - £12.6 million. Unrestricted funds - £67million. Restricted funds - £20.3 million.

This gives total net assets of £105.7 million.

These figures are taken from the full Trustees' report and financial statement for the year ending 31 March 2015, as audited by PricewaterhouseCoopers LLP. If you would like a copy of the full report, available in print, audio, braille and by email, please contact our Helpline on 0303 123 9999 or email [email protected]

20 Our supporters Amy Gilbert, 24, who has been blind since birth due to retinopathy of prematurity, put her version of the hymn ‘In the Bleak Midwinter’ online and invited those who listened to make a donation to RNIB Scotland.

“I’ve loved singing since I was two or three,” she said. “Music is such a wonderful thing. It was my way of escaping when I was a child. Whenever I felt alone, music was always my comfort.

“RNIB has helped me by providing their Talking Books and lots of products for independent living over the years. I’d like to give back a bit.”

In March, Edinburgh-based photographer Trudy Stade staged an exhibition of 22 portraits of blind and partially sighted people. ‘Connecting Visions’ aimed to overturn perceptions of people with sight loss as passive and dependent. Its subjects included Dennis Robertson MSP and stand-up comedian Jamie McDonald.

Trudy was inspired after watching McDonald live on stage. “I realised his talent immediately and found myself chatting away to Jamie after the show,” she said.

“I knew someone at RNIB Scotland and put forward the concept of portraits as something I wanted to do. I didn’t want to push aside the difficulties or frustrations of those living with little or no sight, but capture the essence of who they are through empowering and positive images,” said Trudy.

All proceeds from the opening were donated to RNIB Scotland. The event was organised by our Edinburgh Volunteer Fundraising Group.

To all our supporters and volunteers – thank you for helping to make every day better for people with sight loss.

We also held two Glow Runs in Scotland, in Ayr and Edinburgh, attracting 250 participants and raising over £5,000. Thank you.

21 Thank you Aberdeenshire Council Clare Ballance Big Lottery – Investing in Communities Cirrus Logic Cross Party Group on Visual Impairment Da Soond o Shetlan Eyecare Scotland Dr Kevin Fellows Dr Andrew Ferguson Amy Gilbert Glasgow City Council Google Health and Social Care Alliance Scotland Heritage Lottery Fund Dr Zac Koshy Lothian Buses Dr Helen Lynn Matthew Algie Stuart McMillan MSP Hazel Muldoon Dr Ken O'Neill Ken Reid Optometry Scotland Royal Blind School ScottishPower Foundation Scottish Sensory Centre Trudy Stade State Street Foundation University of Edinburgh Dr Karen Wolffe Roddy Wright (Hansel)

We’d also like to say thank you to our volunteers for your tireless dedication – without your support we couldn’t have achieved what we have.

Finally, a heartfelt thank you to all those who remembered RNIB in their Will. Their generosity will enable us to continue all of our vital work for people facing sight loss in future years.

22 How you can help Every day ten people in Scotland start to lose their sight. We need your help to provide vital services for blind and partially sighted people. Do something today and make a difference.

A brighter future About a third of our work is supported by gifts in Wills so we are hugely grateful to those people who have supported us in this way. Every penny we are left is used wisely to provide a brighter future and help blind and partially sighted people live their lives with confidence. You don’t have to be wealthy to make a difference; legacies of all sizes are vital to our work. If you’d like to know how you can help in this way please call 0845 600 0313 or visit rnib.org.uk/legacy

Fundraise Without financial support from donations and legacies we simply couldn’t provide many of the products and services that help people find their lives again. There are many ways you can show your support, such as getting involved in ‘Wear dots...raise lots’, taking on a challenge or making a one-off donation. Visit rnib.org.uk/fundraise

Volunteer Without volunteers we couldn’t run our services. There are over 100 volunteering opportunities across the UK where you could make a real difference in your local community. Visit rnib.org.uk/volunteer

Campaign Without active campaigners we’d never get changes made to health, social care, employment and benefits. Join our campaigns on issues that matter to blind and partially sighted people. Visit rnib.org.uk/campaign

23 Contact us RNIB Scotland 12-14 Hillside Crescent Edinburgh EH7 5EA.

Call: 0131 652 3140 Email: [email protected] Website: rnib.org.uk/Scotland

Follow us on social media: facebook.com/rnibscotland youtube.com/rnibuk twitter.com/rnibscotland

RNIB Helpline If you, or someone you know, is living with sight loss, we’re here to help. Call 0303 123 9999 from Monday to Friday between 8.45am and 5.30pm or email [email protected]

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