Research on the Needs of Blind and Partially Sighted People

VISION RESEARCH NEWS AUTUMN 2005

This is a Joint Publication on Behalf of

http://www.pocklington-trust.org.uk

http://www.rnib.org.uk

http://www.guidedogs.com

http://www.vision2020uk.org.uk

Further information on articles contained within this publication can be obtained by using the contact points within the articles or by accessing the websites mentioned above.

1 Contents: Page No:

Completed Published Research: 3

 Thomas Pocklington Trust 3 - Evaluating a Public Health Package on Glaucoma 3 - The Effectiveness of Home Improvement Agency Services to People with Sight Loss 4 - Our Vision Too (Project on Ethnic Minorities) 5  Royal National Institute of the Blind 6 - The Prevalence of Visual Impairment in the UK: A Review of the Literature 6 - Identifying the Barriers to the Take-Up of Free Eye Examinations by Older People in the UK 7 - Out of the Paddling Pool (Transition to Sixth Form/FE) 8  Guide Dogs 10 - The Experiences of Visually Impaired Users of the NHS 10 - Development of GP Guidelines for Best Practice 11 - Audio Visual Information on Buses 12  VISION 2020 UK 15 - Low Vision Project National Evaluation Report 15

Research Plans: 16

 Thomas Pocklington Trust 16  Royal National Institute of the Blind 17  Guide Dogs 17

Other Research News: 18

 SeeAbility - Promoting Social Inclusion for Visually 18 Impaired People from Minority Ethnic Communities  Queens University, Belfast – Project to Open 18 Internet to the Blind/Mobile Devices and Audio Guides  VISION 2020 UK - Network 1000, Surveying 19 the Changing Needs and Circumstances of Visually Impaired Adults in Great Britain  Randomised controlled trial of prevention of falls in 19 people aged 75 and over with severe visual impairment: the VIP trial

2 COMPLETED PUBLISHED RESEARCH

THOMAS POCKLINGTON TRUST

Evaluating a Public Health Package on Glaucoma Glaucoma is the main cause of preventable blindness in older people in the UK and studies show the public have limited understanding of the condition. This pilot study on the Isle of Wight and in South Ealing was carried out by the Glaucoma Research Unit Moorfields Hospital with funding from Thomas Pocklington Trust.

Aims The project aimed:  to examine the extent a public health package on glaucoma could reach its target population, using a variety of media.  To provide a sound basis for a larger study to investigate the effects of a Health Promotion campaign on the Isle of Wight.

Methodology Interviews were conducted before and after the health intervention which consisted of an interview on local radio and an advert in the local paper.

Findings  The researchers demonstrated that the media campaign had an effect on raising awareness of glaucoma, although the impact varied in the two areas due to significant differences in the population.  The pilot study has been an invaluable basis for the larger study.

Further Information The study has been published as Baker H and Murdoch I. “Can a Public Health Package on glaucoma reach its target population?”, Eye(2004)18,478-482. Thomas Pocklington Trust is now publishing Research Findings on the pilot study:info@pocklington- trust.org.uk.

3 The Effectiveness of Home Improvement Agency Services to People with Sight Loss Home Improvement Agencies (HIAs) advise and assist older, disabled and vulnerable homeowners and private sector tenants. Thomas Pocklington Trust funded a project by Foundations and the Centre for Housing Policy at the University of York, to examine HIA services.

Aims  To ascertain awareness of HIA services among visually impaired adults, their relatives and support networks.  To consider ways to improve HIA service delivery to visually impaired adults.  To identify staff training needs.

Methodology The project included research and intervention phases with six HIAs and local partners.

Findings  Awareness of HIAs is limited amongst visually impaired people and specialist visual impairment organisations.  Although HIAs act conscientiously as advocates for clients, limited knowledge of visually impaired people’s needs means inappropriate methods of communication can be used.  General awareness and working practices can improve when HIAs are introduced to the social model of disability and given training.  A range of technical solutions will be appropriate for people with a visual impairment.  Networking benefits HIAs and service users.

Further Information A Good Practice Guide “Delivering Home Improvement Agency Services to Visually Impaired People” is available from Foundations: email: [email protected]. An Occasional Paper and Research Findings summary is available from Thomas Pocklington Trust at www.pocklington-trust.org.uk

4 Our Vision Too Improving the access of ethnic minority visually impaired people to appropriate services: building a supported community referral system.

Aims This project aimed to examine and develop means of ensuring that services are more effectively delivered to people from black and ethnic minority (BME)communities with visual impairment, by raising awareness and capacity in communities and service providers.

Methodology After an investigation of related work, community fieldworkers were trained and conducted ‘focus group’ discussions in their communities, giving information to group members. An action research model led to a series of ‘Sight Loss Information Fairs’, and an evaluation.

Findings  There is still a lack of knowledge about the prevalence of sight loss in different ethnic groups.  Potential service users in minority communities have a poor knowledge of eye conditions and of services.  Common themes between various groups may be better addressed if the response is ‘community specific’.  The primary need is for information, delivered through trusted routes.  People experience ‘learned helplessness’  Stigma, shame or pride have a disproportionate impact on minority communities.

Further Information A research findings summary is available from Thomas Pocklington Trust, email [email protected], and an Occasional Paper is being published. The full report is available from De Montfort University, Mary Seacole Centre, Charles Frears Campus, 266 London Road, Leicester LE2 1RQ.

5 ROYAL NATIONAL INSTITUTE OF THE BLIND

The Prevalence of Visual Impairment in the UK: A Review of the Literature Aims This literature review was commissioned from Professor Astrid Fletcher, an epidemiologist at the London School of Medicine, to identify the most reliable estimates of the prevalence of visual impairment.

Methodology Professor Fletcher and epidemiological colleagues identified and reviewed the UK literature on the prevalence of visual impairment.

Findings The review identified the most reliable estimates of the prevalence of visual impairment for children, those of working age and of older people. For older people estimates have also been produced by gender and whether living in the community or residential care. The review also evaluated estimates of the registerable but non- registered population. The table below summarises prevalence for those aged over 65 years living in the community. In due course, the estimates in the report will be produced as population estimates. That is, estimates of the number of people with a visual impairment.

Estimated UK percentage prevalence of visual difficulty amongst older people living in the community (by age group) Source: National Diet and Nutrition Survey and Medical Research Council Visual acuity Age group (binocular activity) 65-74 75-79 80-84 85-89 90+ Mild visual impairment 6.1 4.6 8.1 11.9 16.2 (6/12->6/18) Moderate to severe visual 5.6 9.6 19.2 30.0 impairment 2.5 (6/18->3/60) Blind (<3/60) 0.6 2.3 4.3 4.3

6 Further information The estimates will be posted on the RNIB web-site once the work is completed. Contact: Nigel Charles: [email protected] or telephone 0207 391 2073.

Identifying the Barriers to the Take-Up of Free Eye Examinations by Older People in the UK Aims There is a lack of evidence about the barriers to free eye examinations for older people and the purpose of this study was to identify them. The intention is that these findings can be used as a foundation to develop, implement and target interventions that are most likely to increase the take-up of examinations.

Methodology There has been very little research specifically about access to eye examinations and none about access to free examinations. To identify barriers, the most appropriate method was a qualitative one and the one chosen for this project were group discussions with a sample of older people who had a recent eye examination or who had not.

Findings As part of the preparatory work for this study, we estimated that in any one year around 4 million people aged over 60 years in the UK do not take up the free eye examination to which they are entitled. We also know from the prevalence review that there also might be around half a million people aged over 65 years in the UK who have untreated but treatable cataract and refractive error. There is likely to be a strong link between the low take-up, of eye examinations and the size of the population of those with untreated but treatable conditions. If we are able to identify the barriers to eye examination take-up action may be taken to increase take-up and thereby reduce the prevalence of untreated but treatable conditions. In doing so, the findings will be used to inform the design of a quantitative study that will measure the relative impact of these barriers on eye examination take-up.

The barriers are:

 Explicit barriers that older people consciously associate with having an eye examination such as there not being an obvious

7 need for one or that the care of a spouse constrains the opportunity to have an examination.  Latent barriers that they are not conscious of which might affect the take-up of examinations, such as attitudes to eye health and knowledge of the causes of sight loss.  Systemic barriers that arise from the provision of eye examinations and related services such as lack of knowledge of the role of optometrists and the affordability of spectacles.  Cultural barriers that might influence eye examination take-up such as not speaking the languages spoken by local optometrists and the role of the family in caring for older people.

Further information The report will be published in due course but unpublished copies can be obtained from Nigel Charles: [email protected] or telephone 0207 391 2073.

Out of the Paddling Pool: a report of the first and second year follow ups of students with visual impairment following transition to school sixth form or colleges of further education in Wales Aims To identify the factors leading to, or preventing, a successful transition from school to further education at the age of 16 for young people with visual impairment in Wales. To describe the post-16 transition experiences of young people with visual impairment and the arrangements for their post-18 transition.

Methodology This was a longitudinal study using a holistic, multiple-case study design with the young person as the unit of analysis.

Findings In April 2004 RNIB produced a report detailing the findings from the first main stage of a longitudinal research study investigating the experiences of five young people with visual impairment in Wales as they went through the process of transition from compulsory to post-compulsory education at the age of 16. The second stage of the research explores the experiences of the young people during the two-year period since transition and describes the arrangements that have been made for their post-18 transition. The findings provide further evidence to support the findings in the main research report in 2004 that regardless of type

8 of setting, it is important that young people continue to have access to support and guidance from a trusted adult. The findings also suggest that a specialist teacher of students with visual impairment should at the very least have a monitoring role in the young person's educational support. The opportunity to compare the experiences of the young people at two transition stages has highlighted the increasing complexity of the process as a wider range of options becomes possible.

Further Information Further information about the research, and copies of both reports can be obtained from: Sue Keil, RNIB research department: [email protected], Tel: 020 7391 2369 and Nicola Crews, RNIB Wales: [email protected] Tel: 029 2045 0440.

9 GUIDE DOGS

The Experiences of Visually Impaired Users of the NHS Aims  To identify the experiences of visually impaired people in using the National Health Service, focusing on GP, outpatient and inpatient services

 To identify specific areas of improvement needed, in all sectors of the Service, to address the needs of blind and partially sighted people

Methods A survey was administered as a 20 minute telephone interview to a total of 832 people on lists of voluntary local associations of blind and partially sighted people in the UK – 400 guide dog owners and 432 users of other mobility aids.

Findings Large segments of visually impaired people are happy with the services of their GP as well as their use of both outpatient and outpatient facilities. However, there is a sizeable minority with negative experiences of the NHS.

Areas investigated include  Access to and within the surgery  Confidence in their GP  GP knowledge  Availability of preferred formats  Staff awareness and helpfulness  Making complaints  Overall satisfaction with the last visit  Improvements to the GP surgery

Key areas of improvement to the GP surgery as recommended by the population include:  Improving access to and within the surgery  Expanding the range of formats of communication available within the surgery  Improving the attitudes of staff  Improving announcement systems in surgeries

10 Further Information www.guidedogs.org.uk/index.php?id=1470&no_cache=1

Development of GP Guidelines for Best Practice Aims  To substantiate the findings of Guide Dogs’ survey on the experiences of blind and partially sighted people in the UK  To determine how surgeries can be made more accessible to people with a visual impairment  To develop minimum standards and guidelines for GP surgeries

Methods  Conducted pan-disability access audits on 27 randomly selected doctors’ surgeries across the UK between May and September 2004 focusing on communication and information, staff training, the physical environment: internal and external

Findings There is great variation in the levels of accessibility within surgeries across the country. Most are, however, at the very early stages of creating truly accessible/ inclusive environments.

Through the guidelines surgeries are encouraged to:  Identify all patients with a visual impairment and ask them how staff can provide effective support during surgery visits  Ensure that all staff receive regular training on disability awareness issues  Develop a flagging system on patients’ notes to alert staff that a patient may require assistance  Identify the preferred format of communication for all blind and partially sighted patients and ensure that all correspondence is sent out to them in this format  Regularly maintain entrances to the surgery, ensuring that routes remain free of obstructions  Ensure that all signage is in the recommended format, size and positioned at a recommended height

There are 11 guidelines in total and each provides details of standards and actions required for implementation.

Further Information www.guidedogs.org.uk/index.php?id=1470&no_cache=1

11 To obtain hard copies please email [email protected]

Audio Visual Information on Buses Aims This study is one component of a three-part project jointly undertaken by Guide Dogs and the Department for Transport to secure an amendment to the Public Service Vehicles (PSV) regulations DDA Part 5 requiring audio visual announcements on all new buses. The study is designed to determine the extent to which bus passengers would value both audio and visual information on buses. Specifically, the aims of the study are twofold:

 To explore and establish people’s experiences of bus travel  To identify passenger priorities in bus travel

Methods Between May and September 2005, a number of focus groups and one-to-one interviews comprising a total of 60 people were conducted across the UK. The key groups consulted included:

 5 groups of people with a vision impairment (guide dog owners)  3 groups of people with a vision impairment (white cane/other mobility aid/non GDO)  1 group of people with a hearing impairment  1 group of senior citizens aged 65+  In addition, one-to-one interviews were held with up to 10 visually impaired people (non-guide dog owners and one person with profound deafness and blindness)

Interviews took place in England, Wales, Scotland and Northern Ireland. The discussion centred around 5 key issues:

 Travel habits  Experiences getting on buses  Experiences while on the bus  The value of audiovisual information & it’s perceived limitations  Other significant areas

12 Findings The focus groups clearly revealed two priorities uppermost in people’s minds: Finding the right bus and getting off at the right stop. Specifically, recurring themes of need in all the groups were as follows:

 Need for a mechanism to identify the right bus and to board with minimal stress to the passenger: There was unanimous agreement that the ability to identify the right bus at the outset of one’s journey, including sufficient information to enable adequate pre-journey preparation, is fundamental to a stress-free and successful journey. Several participants spoke of having ‘great difficulty identifying what bus to get on’ or of ‘not being able to see the buses in the distance’ or of ‘terrible problems consistently missing buses’, most especially when buses are lined up one behind the other and it becomes quite impossible to identify which is which. Being able to locate the appropriate bus easily and independently, even amongst a row of several buses, clearly emerged as a priority for these users.  Need for a mechanism to identify desired stop once on the bus: The vast majority of people in the focus groups felt very strongly that their ability to determine where to get off with minimal or no reliance on fellow passengers or the bus driver was a fundamental right. Many people spoke of the anxiety of ‘not knowing where the bus is going to stop or drop you off.’ Others related examples where being dropped off at the wrong stop had clearly put them at risk. Consequences of being dropped off at the wrong stop included, for one passenger, considerable fear after being approached by some strangers at the unknown stop, or for other passengers being returned to the main bus depot only to recommence their journey yet again.  Need for training and raising awareness of bus drivers: Throughout this entire study, the need for bus driver training and awareness of disability issues was clearly evident and voiced unanimously by the group. The need for such training should not be seen as a separate issue, but as an integral component of the two preceding issues – i.e. the need to find and board one’s bus successfully and the need to alight a the bus stop of one’s choice. Indeed, in those instances where participants were highly complementary of their drivers, there was clear evidence of driver training. One participant spoke of hailing a bus only to discover that it was

13 the wrong bus. The driver then took it upon himself to radio the bus depot to inform the appropriate bus driver to ‘look out for the blind lady at bus stop X, as she is in need of your bus.’ In one particular area, three of the four group members thought their service was ‘an altogether excellent service,’ and clearly indicative of driver training. Bus drivers recognised the varying needs of their passengers and were fully trained to respond to these.

Further Information For further details on this report please contact [email protected]

14 VISION 2020 UK

Low Vision Project National Evaluation Report Aims For over 4 years, the Low Vision Implementation Group, (a Committee overseen by VISION 2020 UK) has been monitoring the establishment of Low Vision Committees throughout England. A core aim of the Committees is to bring together key players in the commissioning and provision of Low Vision Services and to ensure, by the integral inclusion of users in any planning, that services are user-focused.

Methodology Warwick University carried out research evaluating the first 66 Low Vision Committees formed.

Findings The concluding remarks of the evaluation state:

“There is evidence that the LVSCs have made significant progress since their inception in 1999. They face a number of significant challenges, not least of which is engaging with key stakeholders such as PCTs and widening their base of service user involvement. Nevertheless the evidence collected for this evaluation suggests that a key strength of the LVSCs is the potential that they have to provide a mechanism via which consultations with service users can take place and through which service providers can develop links with one another. However a significant commitment from local and national statutory services is also needed if this progress is to be continued.”

Further Information Full report can be obtained from the VISION 2020 UK website www.vision2020uk.org.uk and going to the Library section.

15 RESEARCH PLANS

THOMAS POCKLINGTON TRUST

Pocklington has recently reviewed its research policy. We continue to fund a range of social and public health research. Funding decisions are guided by our policy which focuses on three themes:  Improving social inclusion, independence and quality of life  Improving and developing service outcome  Public health issues, including prevention of blindness and promotion of eye health. In addition, Pocklington is establishing a programme of development/innovation projects which are evaluated within the overall research and development programme.

Pocklington welcomes proposals within the policy: we also welcome the opportunity to provide funding which allows small studies on sight loss aspects to be added on to larger more general studies.

See our website for more details. www.pocklington-trust.org.uk. or contact [email protected]. The website contains details of the current programme and Pocklington research publications.

In the short term our main priorities include:  Domestic lighting  Rehabilitation and emotional support  The needs of groups which are particularly vulnerable e.g. those with dementia and sight loss.

16 ROYAL NATIONAL INSTITUTE OF THE BLIND

RNIB is in the process of reorganising its research function and developing a research strategy.

Immediate projects include:

 An exploratory study of the application of Fair Access to Care Standards (FACS) by social care practitioners in the assessment of older visually impaired people.  Assessing the level of provision of community equipment to visually impaired people  The economic status of working age visually impaired people  Children’s right to read school text books

GUIDE DOGS

During 2006/7 Guide Dogs will conduct research into the following areas:

 The experiences and perceptions of blindness among blind and partially sighted people  Needs of blind and partially sighted adults and young people  Attacks on guide dogs by other dogs  Mapping of the current rehabilitation service provision by voluntary and statutory organisations and identification of gaps in service given identified needs  Trends in the level of spending on the delivery of rehabilitation and social care to people who are blind and partially sighted, including a quantification of the true cost of need  Experiences of blind and partially sighted people at Toucan crossings and on cycle lanes  Existing and potential mobility technology

17 OTHER RESEARCH NEWS

SeeAbility - Promoting Social Inclusion for Visually Impaired People from Minority Ethnic Communities SeeAbility and The London School of Economics have been working on the above research project since July 2002. The project findings, to be published within the next three months, develop SeeAbility’s current understanding of sight impairment and the cultural appropriateness of social care services. Further information can be obtained from Tom Fagan, the Project Co- ordinator at [email protected] or telephone 01372 755000.

Queens University, Belfast – Project to Open Internet to the Visually Impaired/Mobile Devices and Audio Guides A three-year project to improve access by the visually impaired to the internet has started at Queen's University in Belfast. Researchers at the University are working to devise ways to guide the blind and visually impaired through the web, as part of the Enabled initiative. The EU has provided 3.8m Euro funding for the project which 13 other bodies across Europe are taking part in.

Professor Alan Marshall said groups of visually impaired people would help them to carry out trials in Northern Ireland. Mr Marshall said researchers from the Virtual Engineering Centre would be joining forces with the Sonic Arts Research Centre to work on the projects. As well as schemes involving tactile display screens and audio cues, there is also the potential to use mobile devices as audio guides for the visually impaired. He said by embedding devices in public areas like shopping malls, they could advertise the position of shops when a visually impaired person with an enabled personal data device passed. Mr Marshall said more people now were going blind later in life or through disease and this type of technology could help keep them out and about.

Trials will be carried out in Belfast in conjunction with the Blind Centre for Northern Ireland and the Royal National Institute of the Blind which will help organise user focus groups and training and evaluation sessions. Queen's University is the project leader and is joined in the project by 13 other universities and organisations across Europe, including BT and Siemens.

18 For further information, use the following weblink: http://news.bbc.co.uk/1/hi/northern_ireland/4457793.stm

VISION 2020 UK - Network 1000, Surveying the changing needs and circumstances of visually impaired adults in Great Britain Over 700 individuals have now been interviewed as part of the Network 1000 Project conducted by the University of Birmingham. The initial information, which includes information on housing, transport, employment, health and many other areas of daily living, is currently being analysed and the first feedback should be available in early 2006. The research sample is broken down into five age bands and should be able to provide future themed data on a wide range of key issues of interest to both visually impaired people and those providing services to them. For more information on the Project, go to the VISION 2020 UK website at www.vision2020uk.org.uk and register for the Network 1000 Microsite by going to Interest/Workgroups & Committees and following the simple registration process.

Randomised controlled trial of prevention of falls in people aged 75 and over with severe visual impairment: the VIP trial People with visual impairment fall more frequently than those with normal sight. They may fail to see or over correct in stepping over environmental hazards and may have difficulty taking corrective action after a stumble. They may exercise less with consequent loss of strength and balance and may venture outside less, resulting in low vitamin D concentrations. A randomised controlled trial to investigate the effectiveness of two home based strategies to prevent falls in elderly people with impaired vision took place in New Zealand - a programme to address safety in the home environment and a programme of strength and balance retraining plus vitamin D supplements. For further information, you can read the full BMJ Journal article using the following link: http://snipurl.com/jq38 or access it from the Library section of the VISION 2020 UK website at http://www.vision2020uk.org.uk.