Publications Archive

Blind and partially sighted adults in Britain: The RNIB survey

Summary: First ever nationwide survey of Great Britain blind and partially sighted adults

Ian Bruce, Aubrey Mckennell and Errol Walker

Royal National Institute for the Blind

Foreword

This report presents the findings of the first ever nationwide survey of blind and partially sighted people in Great Britain. As the country's largest organisation working with and for visually impaired people, we considered it essential that we should obtain a more detailed profile of our 'client group' than existing statistics could provide. We wanted to know the numbers of people with visual impairments, their personal circumstances and needs, and the extent to which those needs were being met.

The survey, conducted between November 1986 and April 1987, took the form of a series of lengthy, detailed interviews with nearly six hundred blind and partially sighted adults, and three hundred children (or their parents) in their own homes by professional interviewers. The survey followed a major study by the Office of Population Censuses and Surveys on disabled people generally (also published by HMSO). It was designed to be complementary to that survey, so that comparisons could be made. This report covers our findings on adults. A separate volume will follow on children.

The findings of our survey are enlightening, but at the same time, very worrying. They show that there are roughly three times more blind and partially sighted people in Great Britain than had previously been estimated - almost a million - and this number is growing as the population ages. Of these, only a quarter are officially registered blind or partially sighted, and of the remaining three quarters, a sizeable proportion are unknown to health and social services. Many visually impaired people, in other words, receive no help at all from statutory authorities. Yet our survey shows a deep well of need, especially among older people (aged 60and over) who make up 90% of all visually impaired people.

This report presents a major challenge to all providers of services, be they voluntary or statutory, in the fields of health, social services, housing, employment, leisure and income support. It has many implications for other spheres of activity, from building to banking, transport to television. RNIB is urgently reviewing its own policies and provision of services in the light of these findings, and we will be encouraging others - not least central and local government - to do the same.

We have collected the evidence, now we must press for action. One person in sixty depends upon it.
John A Wall MA (Oxon) Chairman, RNIB

Acknowledgements

Social surveys of this scale and complexity are possible only with the advice, support and encouragement of many individuals and organisations. First, however, our sincere thanks must go to the hundreds of blind and partially sighted people who allowed us to intrude on their lives, and who coped with our lengthy questions with patience and good humour. Without their cooperation this survey could not have been completed. We hope that this study will result in substantial improvements to the quality and availability of services to them and to all with a visual impairment.

We are greatly indebted to our advisers, consultants and field-workers whose experience of survey work and of policy issues contributed so much to our study. Special thanks must go to the Office of Population Censuses and Surveys' team who worked on the OPCS Survey of Disability in Great Britain. The data they made available enabled us to locate and interview blind and partially sighted people not registered with the local authorities. Their advice on the survey was also invaluable. The team included: Margaret Bone, Karen Dunnell, Jean Martin, Howard Meltzer, Amanda White and Nicola Robus. We are also grateful to Mary Jobbins and Dr Annette Rawson of the (then) DHSS who allowed us to follow up the OPCS sample. The survey was piloted with the help of the London Borough of Newham Sensory Advisory Team and its clients.

The fieldwork was carried out by the British Market Research Bureau. We thank them for the immense amount of work they put into the questionnaire design and fieldwork itself. The quality of the data collected is to be commended.

Professor Gerald Hoinville of City University and Elizabeth Hoinville of the University of London worked respectively on the sampling and computational work on the sample selection. Diana Leat and Jane Ritchie of Social and Community Planning Research advised on the questionnaire content. Jane Fielding at the University of Surrey advised us on the computing and the setting up of the data. Their support has been invaluable.

An advisory committee was set up by RNIB to advise on the survey. Its members were Dr Tim Cullinan, Dr Henry Heath, Dr Adrian Hill, Colin Low, Tom Parker, Dr Michael Tobin and Elizabeth Twining. The knowledge, experience and enthusiasm they brought to the design and development of the survey is gratefully acknowledged. Well over 20 RNIB officers also contributed their advice and experience.

Advice was sought from a number of individuals on issues to be included in the survey. Representing a wide range of disciplines and backgrounds, they brought a wealth of specialist expertise to our work for which we are most grateful. They include: Hans Cohn, Margaret Ford, Judy Baron, Elizabeth Chapman, Louise Clunies-Ross, Dr Allan Dodds, Sally Edge, Raymond Ellis (Leeds City Council), Paul Ennals (SENSE), Dr Lorimar Fison FRCS, Dr John Gill (Research Unit for the Blind, Brunel University), Lucille Hall, Roger Hinds (Dorton House School), Susan Lacroix, Graham Lomas, Tom Maley, D. Mumford (Coventry Social Services), Helen Partington (Social Services, Somerset County Council), Bill Poole, Fred Raffle (Nottinghamshire County Council), Joan Shields, Janet Silver (Moorfields Eye Hospital), Olive Stephenson (University of Nottingham) and Eric Walford.

Many organisations also commented on the scope of the survey, including charities working for visually impaired people and other statutory and private bodies with an interest in their welfare. They were: Association of Blind Asians, Association of Blind Chartered Physiotherapists, Association of Blind and Partially Sighted Teachers, Association for the Education and Welfare of the Visually Handicapped, Association of Visually Handicapped Telephonists, BBC In Touch, Blind Mobility Research Unit, British Retinitis Pigmentosa Society, British Telecom (Action for the Disabled), Circle of Guide Dog Owners, Disabled Living Foundation, Guide Dogs for the Blind Association, Jewish Blind Society, Leeds City Council (Social Services), National Association of Orientation and Mobility Instructors, National Association of Technical Officers for the Blind, National Blind Helpers League, National Federation of the Blind, National League of the Blind and Disabled, National Library for the Blind, North Regional Association for the Blind, Partially Sighted Society, Resource Centre for the Blind (Strathclyde Regional Council), Royal Blind Asylum and School, Royal Commonwealth Society for the Blind, Royal National College Old Students Guild, Saint Dunstan's, SENSE, Scottish National Federation for the Welfare of the Blind, South Regional Association for the Blind, Standing Conference for Ethnic Minority Senior Citizens, Wales Council for the Blind. Our thanks go to them all.

In the day-to-day tasks of managing the fieldwork and analysing the data we were ably supported by the University of Surrey, the University of London's Westfield College Computing Unit and by many RNIB staff including Elaine Dodds, David Mann, Sheena McBride and Jean White. Getting from first draft to print has been a major task and we are indebted to our editor, Christopher Pick, to Keith Riley and his colleagues of HMSO and to Hilary Todd and her team in the RNIB Publications Unit. Their commitment, support and professionalism have enabled us to complete a work which we hope will be seen as a major landmark in the field of visual disability.

Last but by no means least we owe very special thanks to Duncan Watson who, as RNIB Chairman when the survey was commissioned, gave us every support and encouragement.

Any errors and omissions are entirely the responsibility of the authors.
lan W Bruce, Aubrey C McKennell, Errol C Walker

Notes on the Tables and Abbreviations

Percentages

1. Percentages have been rounded to the nearest whole number; 0.5% is rounded up. As a result many of the tables do not total 100%. The percentages quoted in the tables and text are calculated on the basis of weighted data, not on the numbers of people interviewed (see section 2.5).

2. # =less than 0.5%.

3. Weighted data (section 2.4.1)

Population bases are normally given to the nearest thousand. This is the estimated population numbers for that group.

4. Single or multiple answer questions

Where a total % base, “Total 100”, is shown, only single answers have normally been allowed to the question. Where the population base is shown as “Base = 100%”, multiple answers have been allowed, and single responses in the body of the table cannot be added together. In a number of tables a summary figure is given which adds the respondents giving a group of answers; this represents the total number of respondents giving these answers, not the total responses themselves.

5. Number interviewed

This refers to the number of people actually interviewed who form the base of the column concerned. For example, (595) is the total number of people interviewed for the survey.

Not all questions apply to every respondent. Where respondents have not been asked a question, the total number of respondents is given as a note to the table together with a reason for their inclusion or omission. In a number of cases, respondents simply failed to answer a question, and where applicable this is also noted.

The question(s) that generate the answers given in a table normally forms part of the table. Where a subsequent table simply repeats the data, the question is not repeated.

Summary and Policy Implications

Chapter 1, Introduction

This chapter summarises the objectives of the present survey and its relationship with other major surveys of visually impaired people.

Chapter 2, Method

This chapter reviews the procedures followed for questionnaire construction, sampling, fieldwork and analysis.

Interviews were conducted with 595 registrable visually impaired people aged 16 or over in late 1986 and early 1987. Names and addresses for the sample were obtained from two sources: the OPCS survey of general disability (Martin et al, 1988a) and local authority registers of blind and partially sighted people. Non-registered but registrable respondents were selected on the basis of sight test results obtained in the OPCS survey. The results were weighted to give estimates from the sample to population numbers.

Unless otherwise stated, the results in this report relate to registered or registrable blind or partially sighted people aged 16 and over living in private households in Great Britain. Where the term visually impaired is used without qualification, it means all those registered or eligible for registration as blind or partially sighted.

Chapter 3, Demographic characteristics

Size

This is the first study to produce reliable estimates of the numbers of visually impaired people living in private households in Great Britain. According to Department of Health (DOH) registration figures (section 21.3.2), there are 94,000 blind and 54,000 partially sighted people in Great Britain aged 16 or over. Our results (Table 3.1) suggest 300,000 blind people (319% ~over official registration figures) and 457,000 partially sighted people (8460/~over official registration figures) aged 16 or over in private households. Including residential institutions (section 21.3.3) increases the estimates for the numbers of blind people aged 16 or over to 380,000 compared with the DOH figure of 119,000; and for partially sighted people to 579,000, compared with the official figure of 69,000.-Our estimated total for all those registered or eligible for registration as blind or partially sighted people in Great Britain in 1987 is 959,000.

Age, sex and marital status

Compared with the general population the age distribution of the registrably visually impaired population is heavily skewed towards the older age groups. Sixty-six per cent are aged 75 or over compared with 8% of the general population.

While women form 52% of the general population, they comprise 72% of the visually impaired population. The total increases across the three age groups 16-59, 60-74 and 75 +, from 57 to 68 and 75 per cent.

Fewer visually impaired people are married than among the general population -56 and 74 per cent. The discrepancy widens in the older age group, largely because of widowhood. Fifty-five per cent of visually impaired people aged 60 or over are widowed compared with 30% of the general population of the same age.

Single person households

A surprisingly large number (346,000, 45%) of visually impaired people live on their own (Table 3.5). About a third of the 60-74 age group and half the 75 + age group who live alone have done so for 16 years or more.

The higher percentages of older people living alone have important implications. The chapters in which we enquire about who provides help, for example with reading (9), shopping (14) and with daily living tasks (15), show clearly that as a visually impaired person grows older the sources of help change from someone within the home to a relative or friend outside the home, and on to someone from a statutory or voluntary welfare organisation. This change is also influenced by the decrease in the proportion of older people who have close relatives (Chapter 13).

The implication for the new community care initiative is most striking. The informal care network (relatives and friends) provides help with the support of the statutory agencies. However, for a significant proportion of older visually impaired people, particularly those aged 75 + who require most support, this network simply does not exist.

It is reasonable to assume that the ability of older blind and partially sighted people to live alone is finely balanced. Any reduction in statutory domiciliary support services for this group could well result in a significant increase in demand for residential care.

Income and savings

Fifty-seven per cent of visually impaired people live at the extremes of poverty with a household income of less than £70 per week (1987 prices). The proportion increases across the three age groups 16-59, 60-74 and 75 + from 31 to 49 and 65 per cent (Table 3.5). Over half have savings of less than £500.

Few visually impaired people have any savings with which to cushion their low income and have to meet any extra costs their disability creates out of their already low income. The OPCS survey revealed the low income of disabled people. Our survey shows that it may have underestimated the true cost of disability. The high level of unemployment (Chapter 17) and the dependency on social security allowances and benefits (Chapter 18) illustrates the need for adequate levels of allowances and benefits to compensate visually impaired people for the extra costs they incur because of their disability.

Registration status

Only 23% of the 757,000 visually impaired people living in private households eligible to be registered as blind or partially sighted are in fact registered. Younger people are more likely to be registered, as are blind people. For example, 60% of blind people aged 16 - 59 are registered compared with only 13% of partially sighted people aged 75 + (Table 3.14).

While a larger percentage of younger people is registered, in terms of total population numbers the number of older registered people is far greater than the number of younger registered people.

Although the survey covers people who are registered or who would qualify for registration, people with lower residual vision are more likely to be registered than those at the higher end of the registrable residual vision range (section 3.9.4).

The most significant consequence of registration is its role as a trigger or catalyst in the awareness and receipt of services. This theme recurs whenever respondents are asked about their awareness and use of services. Registered people and younger people are always proportionately more aware of services and use them more. This important finding requires providers of services to visually impaired people to reassess their perspective on registration.

Chapter 4, Accommodation

As might be expected, older respondents have resided longer in their present dwelling. Twenty-five per cent of younger compared with 40% of older visually impaired people have lived in their present dwelling for 21 or more years.

Blind and partially sighted people, especially those aged under 60, are more likely to live in local authority rented accommodation than the general population. Twenty-three per cent of people under 60 in the general population but 40% of visually impaired people are local authority tenants. Among 60-74 year olds the figures are 37 and 54 per cent respectively, among those aged 75+, 37 and 42 per cent.

Since higher-income groups tend to be owner-occupiers this pattern is explained by the lower income level of visually impaired people. If they are unable to buy into the property market, this suggests a need for affordable rented accommodation for visually, impaired people.

Chapter 5, The onset of visual impairment

Reported causes

Respondents were often vague about the causes of their visual impair- ment. One in five of those aged 75 and over mentioned nothing more specific than 'old age'. Most of those answering in this way regard the slow deterioration of their vision as part of the natural process of growing old. Cataracts was the specific cause mentioned most often (35%) by those aged 60 or over (Table 5.1).

In so far as the causes of impairment mentioned represent disorders with a known natural history, their distribution across the age groupings reflects facts about the onset of visual impairment. We would expect to find cataracts, a disease of slow onset, most prevalent in the oldest age group. However, it is worth noting that cataracts are by no means insignificant even among the youngest age group, being mentioned by about 1 in 7 of respondents under 60. The numbers saying that their sight problem started at birth declined sharply with increased age.

Time of onset

The length of time over which the eyesight of visually impaired people deteriorates and the age at which they experience deterioration are both important factors in determining the ability to adjust and the kind of help outside agencies are likely to provide. We distinguish between sudden onset, onset at birth, and loss of sight over a more extended period.

Sudden, traumatic loss of vision (the 'military model') is the experience of a small minority of visually impaired people. Fewer than 1 in 10 said that their condition was the result of an accident (including “falling over”), and only 1 in 20 mentioned another sudden occurrence ('happened suddenly/for no reason at all'). Overall the combined mentions in these two categories amounted to 13% (Table 5.1).

Only 8% reported that their sight loss was 'from birth'. The total was 30% among those aged 16-59, and because of the massive increase in age-related visual impairment decreased to 3% of those aged 75 +.

Progressive deterioration rather than sudden traumatic loss of vision is the onset experience of a large majority (86%). Those whose sight loss had become worse from birth, or was not the result of an accident, were asked at what age they first realised that their vision was causing them problems in everyday life. The age skew among visually impaired people might lead us to assume that all those aged 75 + would be recently visually impaired. This is not so; 22% experienced onset under the age of 60; 36% in the previous 15 years; and 37% in the recent past (the rest could not say).

Medical treatment received for sight

A large majority (81%) had seen a specialist about their eye problem. A substantial but smaller majority (58%) had been hospital outpatients, 33% hospital inpatients, and 49% had received some other form of medication (Table 5.4).

Visually impaired people aged 16-59 and 60-74 are more likely either to have undergone an eye-operation or to have been hospital in- patients than those aged 75+. In the same age groups blind people are more likely to have had one of these 'treatments' than partially sighted people.

Ninety-six per cent of registered people compared with 77% of the non- registered (but registrable) had seen an eye specialist. The fact that so many registrable but non-registered people had visited an eye specialist is significant. It confirms anecdotal evidence that eye specialists do not always initiate the process of registration for many of their eligible patients, i.e. the non-registered (but registrable) are known, but not acknowledged by, the statutory authorities. This suggests that eye specialists could do more to ensure and encourage registration, particularly given its trigger effect. This is especially important for blind people receiving social security benefits, where registration is a passport to higher levels of payments.

Chapter 6, Residual vision

Distance vision

Respondents were asked eight carefully graded questions about how much they could see in everyday situations involving distance vision.

Once lay people and even some professionals realise that all registered blind people are not totally blind, they ask 'how many blind people are totally blind?' Our survey answers this question for the first time, but not before one defines “totally blind”. If sighted readers shut their eyes they will quite reasonably think of themselves as, temporarily, totally blind. However, with their eyes shut they can still sense “from the light where the windows are”. Thus our definition of 'totally blind' includes people who have perception of light but nothing more. On this definition, we can say that 18% of blind people are totally blind; this figure consists of 25% of those under 60 and 14% of those 60 or over.

While only a minority of visually impaired people (19% - 12 and 23 per cent of blind and partially sighted people respectively) can recognise a friend across a road, a majority (66% - 49 and 80 per cent of blind and partially sighted people) can at least recognise a friend at arms length (section 6.1.1). However, the importance of distance recognition should not be over-emphasized by sighted readers who may not realise the extent to which visually impaired people use shape and movement for recognition purposes.

Near vision

Two assessments of respondents' near vision capabilities were made. First, we asked about their visual ability to read newspapers, and, second, we administered a simple large-print reading test.

A surprisingly large proportion of blind and partially sighted people (46% - 27 and 57 per cent of blind and partially sighted people respectively) reported that they could read ordinary newspaper print (Table 6.2).

Seventy-two per cent of respondents asked to take our simple test were able to read the card, and 58% (36 and 75 per cent of blind and partially sighted people) could read it comfortably. Only 22% of blind people age 16-59 could read it comfortably.

One of the key questions faced by service-giving organisations is how far it is necessary to produce large-print documents for visually impaired people, especially blind people. The traditional argument runs that, 'as very few blind people can read, it is not necessary'. Our survey suggest otherwise and quantifies the gains of using large print. This is not a panacea, since reading large print is far more tiring than a sighted person would find. Nevertheless the large-print argument seems proved for substantial numbers of blind people.

These results also point to the importance of low vision aids (LVAs), such as hand-held and stand magnifiers, as well as closed-circuit television magnifiers (CCTVs).

Distance and near vision should be considered in tandem. Because of the wide range of causes of sight loss, some visually impaired people enjoy better distance vision than near vision and vice versa. Many blind and partially sighted people experience a significant reduction in their field of vision. Assessing the field of vision loss was beyond the scope of this survey.

Use of spectacles

Eighty-five per cent of blind and partially sighted people with light perception wear glasses (Tables 6.4 and 6.5), including 78% of blind people aged 16 - 59. Because glasses are so common among the general population, it is important to understand that for visually impaired people spectacles are a prosthesis. Their effect is of a quite different order than for sighted people. They are more like a one-legged person's crutch, allowing some amelioration of the condition, not total correction.

People use their glasses for more than one purpose. About 50% use them for each of the following reasons: reading, other close-up work, and distance vision (Table 6.5).

Use of low vision aids

The hand magnifier is the most-used LVA after spectacles (Table 6.6), by 59% overall. However, the total using a hand magnifier is lower among the younger age group (28 and 44 per cent of blind and partially sighted people respectively). Use of all other LVAs runs at under 5%.

During the reading test the interviewer was asked to code any LVAs actually used. The results in Table 6.10 confirm that the LVA predominantly used for reading is spectacles (59%), followed by hand magnifier (13%); other types of LVA were used by no more than 1 or 2 per cent.

Young partially sighted people and older blind and partially sighted people used LVAs most.

The results give some quantitative indication of the substantial under- use of LVAs. While 59% had a hand magnifier, only 13% used it in the test (Table 6.7). Although the test card was printed in 16 point bold, there is no doubt that more respondents would have been able to read it using their magnifier had they been trained and supported in its use.

When we asked respondents if they had the simplest LVA, adequate lighting in the home, only 20% said 'yes'. The reasons given for not having adequate lighting - never having thought about it and not thinking it would help to confirm that many visually impaired people are not aware of the positive benefit of improving lighting levels. The large total (80%) who have done nothing about lighting levels is a public education opportunity for service-providers. The simple use of adequate lighting alone would bring a marked improvement in the use of residual vision for many visually impaired people.

Chapter 7, Large print

This chapter provides further evidence of the importance of large print. For partially sighted people large print is absolutely crucial. Eighty-nine per cent could read the large-print test card, and 82% normally read print (Table 7.1).

While only 12% of blind people under 60 can read ordinary newspaper print (Table 7.2), 42% read the large-print test card (Table 7.1).

These figures provide a strong argument for organisations serving visually impaired people to produce information material, not merely leisure reading, in print as well as in other media. Most important of all is large print, which doubles the access rate to almost half the blind population.

Chapter 8, Tapes and tape services

Nearly half (46%) of all visually impaired people possess a tape player. Ownership is highest among younger people and decreases across the three age groups, 16-59, 60-74 and 75+, from 83 to 53 and 38 per cent. Twelve per cent have an RNIB Talking Book machine; the figures range from 32% of blind people under 60 to an average 6% of partially sighted people of all ages (Tables 8.1 and 8.2).

RNIB Talking Book Service

These data point to the need for further expansion of the RNIB Talking Book Service. A large number of visually impaired people do not know about Talking Books. Fifty-four per cent (over 400,000 people) have not heard of the service, of whom 23% (90,000 people) would like to try it (section 8.3.3.1).

Social services workers will play a crucial role in increasing member- ship of the RNIB Talking Book Service. Some 43% of existing members were introduced by social services workers.

The reading-rate among Talking Book members, especially those aged 60 and over, is impressively high. Almost half the older group read four or more books per month. Given that each book takes about 12 hours to listen to, book-listening is clearly a major activity of elderly RNIB Talking Book members and indicates the importance of this service.

Some 46% of visually impaired people have a tape player of some kind, 4% only have an RNIB Talking Book player, 34% only have an ordinary tape player and 8% have both. These averages mask some interesting and extreme variations. For example, as many as 60% of registered blind people have or have had a Talking Book machine, compared with as few as 3% of non-registered partially sighted people (Table 8.9.b.). This contrast emphasises once again the importance of registration as a trigger of service delivery.

Use of ordinary tape-players also varies widely. For example, 78% of blind people under 60 use one compared with 29% of partially sighted people aged 60 or over.

The use of tape-players varies considerably. While those who have a Talking Book player (12%) of course use it to listen to books, only 3% of blind and partially sighted people use ordinary tape-players to listen to books. The main uses of ordinary tape-players are music (32% of blind and partially sighted people) and information material such as local talking newspapers, national magazines, letters on tape, telephone numbers (14%).

Chapter 9, Readers

Forty per cent of visually impaired people have printed material read to them by a sighted person. The total varies with age, residual vision and registration status. For instance, 74% of blind people aged under 60 but only 28% of partially sighted people aged 60 or over are read to. Seventeen per cent of all blind people under 60 would like to have reading support for the first time or to have more of it. The data suggest that reading support services should be increased significantly for blind non-readers under 60, and to a lesser extent for older blind non-readers as well.

The most frequent reader is someone else in the house (53%), followed by another relative (27%) and a friend/colleague (17%). Readers vary considerably according to the age of the person read to. Eighty-four per cent of young visually impaired people are read to by 'someone in the household', to the virtual exclusion of all other categories. Among older people, 48% are read to by someone in the household, while another relative (30%) and friend or colleague (19%) now feature significantly.

The extent of informal reading is remarkable. Visually impaired people identify printed material as one of the biggest challenges to daily life. Given the frequent need for access to printed material such a crucial service should be available as of right either as a direct service or indirectly through a financial cost allowance.

Chapter 10, Braille

Our study answers another long-standing question, 'How many people read braille?' We estimate that 19,000 blind and partially sighted people have learnt braille well enough to be able read a braille magazine or book. Thirteen thousand remain active braille readers; 10,000 write in braille (section 10.3).

Braille users are proportionately most numerous among the registered blindaged 16- 59 (81%), and lowest among the non-registered partially sighted aged 60 and over, none of whom have learnt braille (Tables 10.2.a, and 10.2.b.).

There is a comparable success rate of braille learning among adults who experience onset of their sight loss under the age of 17 years and between 17 and 59 years. Given that a significant number of successful learners are at the upper end of the latter age range, these figures suggest two conclusions. First, increased teaching among adults aged under 60 would be likely to produce a fair degree of successful braille readers. Second, since only 1% of visually impaired people aged 60 + are offered braille teaching increased provision for this age group would be likely to produce a reasonable number of successful braille readers.

Seventy-five per cent of braille users read magazines in braille, 72% letters and 70% books; 42% read the braille Radio Times (Table 10.8). Nearly half of working blind people use braille. Approximately 80% of readers also write in braille; a third use a writing-frame, half a writing- machine such as a Perkins, and 1 in 5 use both.

Only 11% of blind and partially sighted people who had not learnt braille said that they would like to. About one-third of these had not learnt because they had not been given the opportunity or did not know how to go about it.

Awareness of braille and Moon

More than 9 in 10 visually impaired people had heard of braille, while Moon was known by fewer than 1 in 10 (Table 10.7). Awareness of Moon was concentrated among younger respondents, and was highest (48%) among blind people aged 16 - 59. Since Moon is considered to be much easier to learn than braille, particularly for older visually impaired people, this low level of awareness gives cause for concern.

Our data suggest that for Moon to become a viable embossed tactile medium, awareness of it must be developed among elderly registrably blind people, the penetration and quality of its teaching must be increased and the supply of relevant magazines and books to learners and readers improved.

Chapter 11, Overview of reading habits and communication media

Reading habits

While Chapters 7 to 10 discussed individual methods of reading, this chapter provides data on their use in combination, thus allowing some judgement on the preferred reading media of visually impaired people.

Blind and partially sighted people differ in the reading media they use most and prefer. Among blind people the most used forms were 'personal reader' (33%), 'ordinary print' (29%) and 'tapes' (24%) (Table 11.1). Statutory and voluntary organisations should note the high mentions of a 'personal reader'; this receives little or no outside support and encouragement and is almost always left to the individual initiative of the blind person. While such initiative should not be discouraged it is important for the statutory and voluntary sectors to expand services in this area, especially given the evidence of unmet need among younger blind people (see Chapter 9).

For 2% of registrably blind people, increasing to 12% of those aged 16 - 59, braille was the most frequent reading form. There are two reasons why braille is not the most popular reading form, even among young people. First, as Chapter 10 shows, only a minority of blind people use braille; second, insufficient braille material is produced.

Among partially sighted people ordinary print is the dominant reading form (60%), followed by large print (30%). Preference for large print was higher among partially sighted people aged 75+ (34%). Personal readers and tapes trailed at 12 and 6 per cent respectively.

It is worth noting that so many partially sighted people benefit from large print. Although the commercial sector recognises the demand for large-print books, they still represent only a small percentage of the total numbers of books printed. Indeed it may justifiably be claimed that the print size on much printed material is not large enough even to qualify being called 'ordinary print'; forms are a prime example.

The fact that 12% of partially sighted people use personal readers strengthens the argument in favour of statutory and voluntary sector involvement in promoting this service.

How much do blind and partially sighted people read?

Respondents were asked whether they read more, less or about the same as before their sight problem began. Overall, 9% said that they read more, 21% the same and 69% less. There was relatively little variation in the responses across age groups, except that 77% of blind people aged 75 + said that they read less.

These data are quite startling. Almost one third (30%) of blind and partially sighted people read the same or more than before. Indeed just over one third (35%) of blind people under 60 said they read more than before. While we should not be complacent about the 69% who read less, that so many read the same or more is a remarkable tribute to the people concerned and to the organisations that supply their needs.

Communication media

Writing media

An estimated 10,000 registered blind people write in braille, 70% of whom are aged 16 - 59.

Although fewer than 5% overall use a typewriter, this figure hides an uneven distribution. For example, 25 and 21 per cent of blind and partially sighted people aged 16 - 59 use a typewriter. Almost all the registered blind who write in braille also use a typewriter.

Although we did not ask specific questions about handwriting, the 58% of blind people aged 16-59 unable to read our large-print card (Table 6.3) suggests the approximate number who either might not be able to write at all or who might find it extremely difficult to write legibly. Furthermore, only 25% of blind people under 60 use a typewriter. These statistics indicate a major unmet need, in our literate world, for typewriter or keyboard training for younger blind people.

Telephones

Telephone ownership among the registered and non-registered is 86 and 67 per cent respectively, compared with 81% among the general population (section 11.2.3.2).

A not-insignificant minority said that the telephone was the 'most' and 'second most' important way of finding things out, 16 and 20 per cent respectively. This suggests that the 28% of visually impaired people without a telephone are at a major disadvantage.

The low income of visually impaired people and the relatively large proportion they spend on a telephone demonstrate its importance.

Relative importance of different sources of information

Personal communication - asking people (85%) and telephoning people (54%) - were the most important sources of information mentioned (Table 11.4). Personal communication divides into informal and formal contacts. The informal category, mentioned about four times as often as the formal, includes 'someone in the household' (32%), 'other relative'(32%) and 'friend or colleague' (21%) (Table 11.6). For younger visually impaired people the dominant source of personal communication is within the household, but moves to someone outside the house for older people.

Social services were the main source of formal information contacts, particularly among the registered. The registered also mentioned voluntary welfare organisations notably more often than the non-registered.

Radio and television were mentioned more often by the younger registered than by other sub-groups. The telephone was mentioned by 12% with little variation across sub-groups.

Chapter 12, Visual impairment and other disabilities

The OPCS study of disability shows that 1,384,000 people in private households have a 'seeing disability'. Our data give a figure of 757,000 registrably visually impaired people. The difference arises because OPCS included about 600,000 people with a seeing disability who could see well enough not to reach the registrable level for partial sight.

The OPCS survey compares the incidence of visual impairment with that of other disabilities. It ranks fifth after locomotion, hearing, personal care and dexterity. Eight other disabilities are less prevalent, including mental handicap and mental illness.

Prevalence rates for registrable visual impairment (i.e. blind and partially sighted) are 3 per 1,000 among those aged 16 - 59; 23 per 1,000, 60 to 74 years; and 152 per 1,000, 75 and over. In other words, 0.3% of the population aged 16-59 is registrably blind and partially sighted; 2.3% of 60 to 74 year-olds; and 15% of those aged 75 and over. The prevalence rate among the 75+ group is startlingly high, and can be assumed to be even higher among people in their 80s.

Vision and hearing are the two senses crucial to communication, one of the most critical functions of humankind. When both vision and hearing are impaired, the individual suffers a truly massive handicap, whose total impact is far greater than the sum of the two individual impairments.

Thirty-five per cent of visually impaired people suffer the additional disadvantage of experiencing difficulties in hearing normal speech in a quiet room, even when wearing a hearing aid. The total increases across the three age groups, 16-59, 60-74 and 75 +, from 22 to 34 and 37 per cent. Our interviewers noted that 45% of those aged 75+ had difficulty hearing the interview.

These figures suggest that people and organisations in contact with very old registrably visually impaired people are justified in assuming that half of the individuals they deal with will be hard of hearing. The communication process adopted by staff will need to be assessed and modified in the light of this finding.

Excluding hearing problems, 67% of visually impaired people have another permanent illness or disability, and 45% say that this illness or disability limits their daily activities (section 12.3.2.2). The illnesses or disabilities most frequently mentioned were arthritis (25%), heart condition (18%), legs/mobility (14%) and diabetes (9%).

These figures represent a major underestimate (section 12.3.2.4). For example, among people aged 75 + hearing impairment averaged 36% by self-report, but rose to 45% as reported by the interviewers.

Chapter 13, Mobility

Orientation and mobility are vital areas of limitation and challenge to visually impaired people, particularly so to blind people. We found that 87% of blind people under 60 had gone out in the week before our interview, although only 51% had gone out alone and on foot. Further analysis of our data and the OPCS survey reveals that the independent mobility of visually impaired people is more restricted than that of the broader disabled population. Only 43% compared with 78% were able to go out on their own (section 13.1.2.2).

Visually impaired people also suffer the added disadvantage of orientation and mobility in unfamiliar surroundings. Seventy-nine and forty-eight per cent expressed confidence in their mobility inside and outside their immediate neighbourhood respectively.

Younger people, partially sighted people, those without other disabilities and the registered are the groups most likely to have gone out alone in the previous week.

Among younger visually impaired people, we found a startling correlation between registration and independent mobility. Among blind people aged 16-59, 70 and 45 per cent of the registered and non- registered respectively had been out alone on foot during the previous week. This is all the more remarkable because the non-registered enjoy slightly better residual vision levels.

There is an expected correlation between mobility training and independent mobility. Among the registered blind aged 16-59, 64% of those who had been trained were independently mobile compared with 45% who had not been trained (section 13.4.1.2).

A comparison with the Gray and Todd survey of 1965 (Gray and Todd, 1968) shows that among young registered blind people the level of independent mobility has not increased over time. This is puzzling given the relative success of mobility training, which was not as widely available in 1965. One hypothesis is that without increased training provision mobility might have declined, perhaps because of actual and perceived increased environmental dangers, e.g. traffic.

Age influences the frequency with which people go out. Across the three age groups, 16 - 59, 60-74 and 75+, 90, 88 and 75 per cent had been out in the previous week. Among the two younger age groups, 58 and 59 per cent had gone out alone, compared with 33% of people aged 75+.

The mobility of older visually impaired people was more restricted than that of elderly people in general. According to Hunt's (1978) study of elderly people, 87% of the general population aged 65+ had been out, while we found that only 42% of blind and partially sighted people aged 60 and over had been out alone in the previous week (section 13.1.2.1). The reasons are both the visual impairment itself and the increased prevalence of other disabilities among visually impaired people.

Visually impaired people are less mobile than disabled people in general (section 13.1.2.2). Even more significant is that 52% of visually impaired people but only 14% of disabled people need help to go out. This finding gives important support to the argument for making visually impaired people eligible for financial help in the form of the mobility allowance.

One vulnerable group identified was blind and partially sighted people living alone. We were shocked to find that 26% (90,000 people) of people living alone say that they are never visited by friends or neighbours and 11% (38,000 people) say that they are never visited by a relative. In addition, blind and partially sighted people living alone were visited no more frequently than people living with a sighted friend or relative. These data say much for the independence of blind and partially sighted people who live alone. They also reveal the apparent absence of an informal support network of a vulnerable sector of society.

In addition, these findings identify elderly blind and partially sighted people living alone as a crucial target group for increased formal and informal support. Lack of such support will hasten an individual's entry into costly residential care.

Mobility training and mobility aids

Use of a white cane or white stick was concentrated heavily among registered (74%) compared with non-registered (8%) people (section 13.4).

Only 5% of visually impaired people overall have received significant mobility training. For registered people aged 16 - 59 the figure rises to 40%, and to 55% for those registered blind.

These findings indicate a drastic lack of mobility training, which is a fundamental requirement for blind and partially sighted people. Given this shortage it is perhaps understandable - but not excusable - that training is offered on an age-related basis. Of blind people in the three age groups, 16-59, 60 -74 and 75+, 33, 18 and 5 per cent had received training.

Thirteen per cent of blind people under 60, and 4% of all blind people, used a guide dog as a specific mobility aid.

The most positive picture to emerge from our study is that an over- whelming majority of blind people under 60 get out and about, and that half are able to do so alone and on foot. This is a reflection not only of youth and determination but also of the greater degree of service offered to this age group.

The most negative picture is of the large number of blind people aged 60 or over and partially sighted people of all ages who receive no significant support in their attempts to be more mobile. These lost opportunities become all the more tragic when set against the relative success of younger blind people. They represent both an indictment of the lack of statutory resourcing and also an underestimate of the capabilities of the people concerned, particularly of the “young elderly” blind. This chapter contains many pointers for service planners and providers.

Chapter 14, Shopping and transport

We explored some basic aspects of shopping and the use of transport. While three-quarters of visually impaired people live within a 15-minute walk of the nearest food shop, 59% rely on others to do their food shopping.

Over half those who do their own shopping reported some difficulty. Old age rather than residual vision was the major variable determining the level of difficulty reported with shopping. The main source of help with shopping was a household member, but as age increased the helper was more likely to come from outside the home.

Blind and partially sighted people use a variety of forms of transport. The main modes are buses and taxis. Among occasional users of transport (i.e. those who did not go out in the last week), the car was most used. In the week before the interview, 59% of respondents had been out by car, 33% by bus, 15% by taxi, 3% by train, 3% by coach and 1%by tube.

Chapter 15, Daily living skills

We asked respondents about three areas of daily living skills: personal care (e.g. getting in and out of bed, washing and bathing, dressing); domestic tasks (e.g. cutting up food, making hot meals, tidying up around the house); and dealing with mail and other tasks (e.g. paper- work including bills and letters, and post and leaflets through the door).

Ninety-one per cent of all blind and partially sighted people experienced difficulty with at least one of these areas. In the three areas, 75, 54 and 59 per cent respectively needed help. For blind people the corresponding totals were 78, 60 and 75 per cent.

We asked who helped in these three areas. As far as personal care tasks were concerned, help came mainly from someone in the house or from the health service. For those aged 16 - 59, someone in the house (78%) was the main source, the health service (25%) the other frequently mentioned source. With increasing age the source shifted to someone outside the home, quite often to someone from one of the statutory welfare services; for respondents aged 75 +, the totals were 26 and 77 per cent respectively (Table 15.3).

Help with domestic tasks showed a similar pattern but with home-helps from social services departments substituting for the health service. However, while 68% of those who needed assistance with personal care were helped by the health service, only 39% of those who needed assistance with domestic tasks were helped by home-helps.

Help with dealing with the mail and other tasks showed a dramatically different pattern, Help from the statutory welfare services was practically non-existent. Someone in the household was the major source of help while other relatives, friends and neighbours filled the subsidiary role occupied by the statutory services in the other two areas.

While the degree of informal support provided by relatives and friends is recognised, the lack of any statutory service alternative is a major gap in provision. The fact that such assistance is required solely by visually impaired people reveals significant, if unwitting, discrimination which should be urgently addressed through a combination of service provision and financial help. (See also Chapter nine.)

Aids and gadgets

Technical aids and gadgets make an important contribution to helping visually impaired people to cope with everyday living. The range and sophistication of these aids varies widely. We examined awareness, ownership and usage of a few of the more popular aids and gadgets available, largely those of interest to blind people and partially sighted people with lower residual vision levels. While awareness of these typical aids was reasonably high among young blind people, it was particularly low among blind people aged 75 +. For example, awareness of special clocks and watches was 75 and 37 per cent among the two groups. Usage of aids runs at a much lower level than awareness. This is to be expected since aids are a personal matter; while some people have no need of them, others are unable to use them.

The impact of registration on awareness and possession of technical aids is remarkable. Taking special clocks and watches as an example, 84% of the registered but only 48% of the non-registered aged 16-59 were aware of them; 31% of the registered but only 2% of the non- registered owned at least one device. These findings provide evidence of the importance of registration as a triggering mechanism.

The overwhelming majority of visually impaired people have difficulty doing everyday tasks. As they age, the combination of the sight problem and other illnesses or disabilities compounds the difficulties they experience. Although aids and gadgets offer only limited help, lack of awareness of them is a failing which needs to be corrected.

Chapter 16, Leisure

Our most notable findings demonstrate that visually impaired people enjoy the same media as the general population. They are, first, that 94% of visually impaired people have a television, and that 90% listen to or watch it, with little variation between blind and partially sighted people. Second, 81% listen to the radio.

The extent of television usage emphasises its significance as a communications medium. It also indicates the importance of encouraging broadcasters not to expand 'vision only' information on programmes (e.g. the use of sub-titles to translate interviews in foreign languages). This also applies to the significant minority of other people who find it difficult or impossible to absorb written or graphic information.

Radio

The radio stations most listened to are local radio (34%), Radio 2 (23%), and Radio 4 (21%), A larger proportion of the two younger age groups listens to local radio (48 and 44 per cent). Proportionately Radio 1 's largest audience was the 16-59 age group (11%).

Television and radio are both vital media through which service-giving organisations reach the visually impaired population. However, BBC Radio 4's In Touch programme, which is designed specifically for visually impaired people, is a highly effective targeted means of communication. Approximately one fifth of all blind and partially sighted people listen to In Touch either occasionally or regularly, and this rises to 75% among those who have heard of the programme. This suggests the need for both the BBC and statutory and voluntary organisations to do much more to promote knowledge of the programme's existence.

Hobbies and leisure activities

Gardening is by far the most popular hobby of visually impaired people. Although it was mentioned by 32%, this rating is in fact lower than among the general population, which suggests that more could be done to promote gardening, especially since it is equally popular among all age groups.

Although knitting would seem an unlikely hobby for blind and partially sighted people, 26%, almost all women, enjoy it. Given the popularity of this hobby it is vital that organisations give this hobby the support that its popularity deserves.

Outdoor sports are widely played by younger visually impaired people. About one-fifth of blind people and one-tenth of partially sighted people under 60 take part in sports such as walking, sailing, skiing and water- skiing, riding, fishing, archery and many others. One reason for the relatively high participation rate is the encouragement provided by schools for blind people and by a wide variety of active specialist sports organisations for blind people. The extent of the success of these organisations, and the fact that a still higher percentage of sighted people participate, suggests that these activities would benefit from further support and encouragement.

Social clubs and centres

Almost half (45%) of blind and partially sighted people go out to clubs, societies, social centres or churches (sections 16.3 and 16.4). Most visited are church or church groups (22%), followed by clubs for the elderly (15%); ordinary social centres/clubs (10%); working men's clubs (7%, men and women); clubs or day centres for visually impaired people (3%); and sports clubs/centres (2% overall, but 17% among young blind people). Frequency of attendance is quite high, over half going at least once a week to all the clubs listed except working men's clubs and blind clubs/centres.

Nevertheless, the 55% who do not visit any club or centre is an unacceptably high figure. A quarter of non-attenders said that they had 'difficulty getting there'. Just over half (56%) said that they were 'not interested'. While this is undoubtedly true in many cases, in a signifi- cant number this explanation may have been given for reasons of self- defence and self-esteem as the individuals concerned lacked ready access to such activities. The challenge facing the organisations involved is to ensure that visually impaired people are able to make a real choice between participating and not participating.

Only 3% of all blind and partially sighted people attend clubs and centres specifically for visually impaired people, although this figure rises to 27% among the registered blind. Once again, registration acts as a passport, although in this case not with a wholly benign effect. This is because we found that, among elderly people, while only 17% of the registered blind went to integrated clubs this rose to 37% among non- registered blind people. We conclude that clubs and centres for visually impaired people should be seen as providing extra opportunities, not as a substitute for attending general clubs.

Social and leisure activities predominate at these separate clubs and centres; 45% of attenders mentioned music and singing; 44%, meeting friends for a chat; 38%, talks; 28%, lunch and lunch clubs; and 23% each, indoor games and handicrafts. However, rehabilitation and training activities were rarely mentioned, even though these might be considered one of the strongest (even the only) argument in favour of separate clubs and centres. We therefore conclude that there is a major opportunity for separate clubs and centres to provide more rehabilita- tion and low-key training activities, especially for elderly people who have recently experienced visual impairment.

Holidays

As many as 38% of visually impaired people have not had a holiday during the last five years. This figure rises to 55% of blind people aged 75+ (Table 16.8), the equivalent of some 113,000 people, mainly women, many of whom live alone. The lack of holidays is not solely age- related, since only 36% of partially sighted people aged 75+ have not had a holiday in the past five years.

Blind people aged 75+ (mostly non-registered) form a key target group for specialised holiday providers.

Overall, 62% of visually impaired people (compared with 40% of the general population) have not taken a holiday in the previous 12 months. This figure includes 68% of those aged 75 + and less than half the 16-59 age group. Only 4% (all registered) said that their most recent holiday was one specially organised for visually impaired people; this figure rises to 16% of registered blind people aged 60 or over. It is older visually impaired people who show the largest preference for hotels catering specially for their needs. This strengthens the case for specialised hotels, which are largely run by voluntary organisations, to attempt to reach the large number of older visually impaired people who have not taken a holiday in the last five years.

Access to leisure services

Visually impaired people follow an exciting variety of leisure and hobby pursuits. However, with the exception of television and radio, there is plenty of room for expansion. Our research also identifies a substantial number of mainly very elderly visually impaired people living alone who never go out for leisure or hobby pursuits and who never go on holiday. Organisations of blind people, and particularly statutory and voluntary service-giving agencies (including those not primarily aimed at visually impaired people) must give these people higher priority.

This group contains a significant number of non-registered blind people. The very act of registration dramatically increases their chances of access to leisure services and activities. All those concerned - ophthalmologists, social service departments and voluntary organisations - must reassess their attitudes towards the registration of older people in the light of the role that registration is shown to play.

Chapter 17, Employment

The OPCS disability survey shows that 31% of disabled people under retirement age are in employment. Our findings reveal that, while the same proportion of partially sighted people are working, far fewer blind people have a paid job (17%). A sighted person is about four times more likely to be employed than a blind person.

Two points should be stressed. First, that 17% of blind people hold a job demonstrates that paid work is feasible for blind people. Second, nearly three-quarters of blind people (72%) who are currently not working have worked in the past, in the vast majority of cases after the onset of visual handicap (Table 17.1).

We discovered one alarming fact about the duration of unemployment. For the general population, short periods of unemployment are interspersed with periods of work. Once out of work, however, visually impaired people find it hard to get another job. Eighty-eight per cent have been out of work for over a year and 55% for more than five years (section 17.3). In addition the last job of 58% of those not working was the one in which their sight failed (section 17.8).

Just over a quarter of visually impaired people lost their last job within two years of onset, and a similar number left their job five years or more after onset.

The data suggest that retention of employment should be a high priority, given the high proportion of visually impaired people in work at the time of onset (section 17.3.1, Table 17.4). At present statutory provision concentrates on finding jobs for unemployed visually impaired people and creating the initial conditions (for example, provision of equipment and training) under which they can take them up.

Our findings suggest that job retention is a neglected area, with support needed to both employers and employees in the crucial period around the onset of the sight problem when the majority of visually impaired people will lose the last job they may ever hold (section 17.3.1).

Statutory and voluntary organisations should devote increased attention and resources to a public education campaign designed to explain to employers, employees and unions the positive steps that can be taken to enable newly visually impaired employees to stay in work. In particular, retraining should be provided free of charge, as already happens with technical aids and the personal reader service (see below).

Occupational structure of visually impaired people

Not only do proportionally fewer visually impaired people work, they also hold fewer professional and managerial jobs and more semi-skilled and unskilled jobs. They are not merely disadvantaged in relation to the general population, but also in relation to disabled ,people in general. For example, 14% of visually impaired workers hold professional jobs, compared with 25 and 34 per cent of the disabled and general populations respectively.

These findings suggest that additional firm positive action is needed to help visually impaired people to obtain and retain work.

Technical aids and other employment services

The survey provides very clear evidence of the importance of special equipment, aids and additional clerical services in helping visually impaired people to find and retain jobs. Working blind and partially sighted people are between three and six times more likely to be using aids and services in their job compared with their out-of-work counter- parts in the job they lost.

This reflects the welcome increased attention and resources provided by the Department of Employment and RNIB. However, their very success suggests that additional efforts to publicise and resource this area are urgently needed. For example, only 23% of working blind people use the additional clerical services including the personal reader service. While the use of special equipment and aids is already high (45%), provision may need to be increased to help blind workers to meet technological change.

Future prospects are not unreasonable for those who manage to stay in employment after onset (Table 17.16). One quarter of people changing jobs gained promotion, one third (32%) moved to a job with similar status and under half (43%) moved to a lower-status job. This is encouraging evidence that, so long as visually impaired people are able to stay in the job market, they can enjoy reasonable expectations and also that employers find their contribution useful.

Chapter 18, Allowances and benefits

Seventy-eight per cent of visually impaired people of working age received some form of state benefit (Table 18.1). Fifty-five per cent of those of retirement age received some form of income maintenance benefit (excluding retirement pension) reflecting their low income level (Table 18.6). Fifty-five percent of those of working age received one or more of the disability-based benefits or allowances. Most strikingly, two- thirds of those not currently in work receive a benefit, which suggests that they are no longer able to work.

In general, visually impaired people depend heavily on state benefits, and a little more so than the disabled population in general.

In view of this heavy dependency, the very low proportion (21%) who have received expert advice on entitlements to benefits is disturbing (Table 18.4). This finding reveals an urgent need to expand benefits advice and support to a group that, besides being vulnerable in them- selves, also has particular difficulty in gaining access to information on benefits and completing claim forms.

Chapter 19, Local authority social services

Awareness of relevant social services

While awareness of 'social services or welfare services' in general was high at 84%, awareness of specific services for visually impaired people was extremely low. One-third of the registered but two-thirds of the non-registered were unaware of the availability of such basic services as white sticks and canes, talking books and local social and day centres.

Once again, registration acts as a trigger, with twice as many registered people knowing about these services. Almost three-quarters of non- registered people (71%) said that they were unaware of the benefits of being registered. Service planners and providers face a substantial and urgent task of increasing awareness of the social services available. If statutory agencies are unable to do this, the voluntary sector should consider taking up this role. In practice, service delivery to the registrable but non-registered must be improved, and registration must be promoted heavily.

Visits by and satisfaction with social services

Overall, only 17% of visually impaired people were visited by their social services department at or shortly after the time of their sight loss. Forty-five per cent of those newly registered said that they had not been visited by social services. Some social services departments may find it difficult to believe these figures. At the very least, we can say that some of those who claim not to have been visited were in fact visited, but the visit made such insignificant impact that they could not remember it.

Another very significant finding is that over 98% of the non-registered (but registrable) were not visited. This is important because a small proportion of social services departments claim that they offer their services equally to the registered and non-registered. While some departments may claim this policy in theory, in practice they are not delivering it.

Forty-five per cent of those registered received a first visit from social services within three months of their examination by an eye specialist. However, 42% were not, or could not remember being, visited (section 19.4.2).

Satisfaction with the first visit was poor. Thirty-four per cent were “very” or “a bit” dissatisfied. This represents a very high dissatisfaction rating (see note 5 to Chapter 19) and ties in with low awareness of services.

Rehabilitation

Four per cent of visually impaired people (35 and 11 per cent of those registered aged 16 - 59 and 60 + respectively) have been offered formal rehabilitation training (section 19.5), although not all offers were necessarily taken up. Only 4% have had a home visit when they were given practical advice and instruction on coping with their sight problem; this increases to 24% among the registered blind aged 16-59. All these are depressingly low numbers.

Since vision loss of registrable severity can take some time to develop, the long interval between initial onset of vision loss and the delivery of practical instruction and advice in the home is worrying. Only 12% received practical instruction within a year, 27% in one to five years, and 42% after 10 years (Table 19.6).

Unsatisfied demand

One-fifth (19%) of the 96% who have not received any practical advice or instruction in the home would like such help. One reason for this relatively low percentage, which reflects a slightly defensive response, is that many respondents, having had to make do on their own, might well have been disinclined to acknowledge their need for help. In absolute terms, however, the 19% represents a massive number of people wanting help.

Fewer than 1% of visually impaired people have received counselling, while a further 23% would have liked it. Demand was greatest among blind people aged under 75 (36%). One in three of this group would have welcomed counselling, but less than one in a hundred received it.

Overall this chapter presents a bleak picture of provision by social services departments. The vast majority of non-registered blind and partially sighted people receive no services, nor do a substantial minority of those registered. Furthermore, client satisfaction with services is low. This evidence combines with other studies of social services departments (Shore 1985, DHSS 1988) to reveal a worrying and unacceptable situation. While good practice certainly exists, it is the exception rather than the norm. The resources available for unmet need appear to be totally inadequate by a factor of three to five. Thus reorganisation or restructuring of services will not provide a solution unless significant additional resources are made available.

Chapter 20, Voluntary organisations involved with visually impaired people

Half our respondents (49%) could not spontaneously name any organisations that help blind people and people with sight problems. Those organisations named by the others included RNIB (22%), St Dunstans (9%), Guide Dogs for the Blind Association (7%) and various local societies for the blind (2%). The figure for RNIB is likely to be inflated because RNIB was mentioned at the start of the interview. A more accurate awareness level would fall between 10 and 22 per cent. (See also note 1 to Chapter 20.)

More registered and younger people named various organisations than non-registered and older people.

Our findings do not confirm the long-standing worry within RNIB that the organisation's title gives the impression that it only helps blind people. The following responses were received to a question about whom RNIB might help: blind people, 93%; partially sighted people, 77%; people who can't see well enough to read, 62%; and anyone who is worried about their sight, 60%.

While understanding of the broad thrust of RNIB's work and the groups it helps is accurate, detailed knowledge is poor. Half were unable to name even one service; this figure varies from 21% of the registered aged 16 - 59 to 60% of the non-registered aged 60 + (Table 20.2).

The best-known RNIB services among the registered aged 16- 59 were: aids and gadgets, 39%; RNIB Talking Books and braille, 24% each; schools 22%; and holidays and hotels, 20%. Nevertheless, RNIB should be concerned that half of all blind and partially sighted people cannot name a single RNIB service. This suggests a need for a major promotional campaign to increase knowledge of RNIB services.

Users of RNIB services

Eighty per cent of those who know about RNIB make use of one or more of its services. This represents 13% of the visually impaired population living in private households, an estimated 100,000 people. Use of services varies. For instance, 72 and 47 per cent among the registered aged 16 - 59 and 60+ use RNIB services compared with 14 and 5 per cent of the non-registered in the same age groups.

Sources of information about RNIB services

Social services workers represent the most important source of information. A quarter (26%) of visually impaired people learned about RNIB from this source. Social workers are thus an important target group if RNIB is to make its services better known. But since they tend to concentrate on registered rather than non-registered people alternative ways of reaching the latter group must be found.

Eleven per cent found out about RNIB via Radio 4's In Touch and other media. These sources offer some scope for development. Opticians may be another key intermediary group. Currently they contribute 4% of introductions. The same applies to doctors (2%).

Although not mentioned above, hospital based 'eye specialists' are in contact with a considerable number of visually impaired people, notably the non-registered (section 5.3). Clubs and centres for elderly people are another possible information source.

Chapter 21, Methodological appendix

This chapter provides detailed technical information about the survey, including a definition of residual vision; the residual vision scale; the questionnaire questions; estimating population numbers from the data; and test.ing for statistically significant differences between percentages.

Part A - Background

1 Introduction

1.1 Objectives of the survey

The purpose of the survey was to assess the needs and views of a nationally representative sample of visually impaired people on a wide range of topics. A number of specific objectives were identified:

  • To provide a national picture of the characteristics of the visually impaired population
  • To examine how the needs of the visually impaired population are being met from whatever source
  • To provide information which will enable RNIB to evaluate, develop and promote its services
  • To give evidence of significant areas of unmet or inadequately met need so that RNIB or other agencies can take steps to ensure that those needs are met
  • To identify problems in obtaining information about services or access to them
  • To identify areas for further investigation
  • To extend and complement the information on severely visually impaired people available from existing data sources, and in particular the OPCS disability survey.

The survey was intended to encompass visually impaired people of all age groups; however, it was felt that the under-16s would require a different questionnaire, so this report concentrates on adults. A survey of children's needs was carried out separately and is the subject of a further report, published as Volume 2.

1.2 Previous major surveys of visually impaired people

There have of course been several previous surveys, the best of which we were able to draw on with considerable advantage in designing our own. The RNIB survey, however, aimed both to collect wide-ranging information on needs and to do so on a nationally representative sample. Previous surveys have achieved one or other of these two aims but never the two together.

Tobin and Hill's (1984) 'pilot' survey of blind people in Birmingham, for example, ranged richly over need topic areas and knowledge of avail- able services. Surveys carried out by local authorities and voluntary societies have been based on much larger samples, and some, like the Hampshire survey (Edge, 1987) have covered a wide range of topic areas, but still on a regional basis.

The surveys that have yielded national statistics, on the other hand, have only done so for a restricted range of topic areas. Hall's (1982) survey covered a large sample at modest cost by drawing from members of the British Talking Book Library. Cullinan's (1977) survey provides useful national data, but it included relatively few visually impaired people who were registered or registrable. The main government sponsored survey of the blind, that by Gray and Todd (1968), in contrast, was limited entirely to registered blind people. The latter survey is still the most thorough study of the mobility and reading habits of blind people, but the coverage was confined to just these two topic areas. Moreover, in what now seems a curious reflection on the welfare priorities of the time, the sample selected for the inquiry had an upper cut off point at 80 years old.

The RNIB survey was timely in that it coincided with the survey of disability undertaken by the Office of Population Censuses and Surveys (OPCS) for the (then) Department of Health and Social Security (Martin et al, 1988a, 1988b, 1989). In the foreseeable future, following its publication, the OPCS survey can be expected to provide the frame of reference for legislation and action on disability. The previous national survey of disabled people took place in 1969 (Harris, 1971). In order to identify a random but representative national sample of people with disabilities both these government surveys involved massive and costly screening operations.

Such screening is well beyond the resources of most organisations outside central government. Because of the wide range of disabilities covered, the amount of information collected on the special needs of visually impaired people is necessarily very limited. If the latest OPCS survey is to be used as a starting point for future action on disability, then more information is desirable on the situation of visually impaired people. We hope our survey, growing as it does out of the OPCS survey, will provide this. Our use of the OPCS survey to provide part of the sampling frame for our own study is described in Chapters 2 and 21, and was possible because of the helpful cooperation and agreement of the DHSS and OPCS.

2 Method

Methodological decisions have a vital impact on the form of results, and for this reason we report fully on these both here and in Chapter 21, the methodological appendix. Those interested primarily in service delivery may wish to omit this chapter, although reading sections 2.4.1,2.4.3.3 and 2.5 will aid interpretation. However, this chapter is crucial for those wishing to reinterpret the data presented here and in the more detailed reports accessible through the Reference Library at RNIB.

2.1 Questionnaire construction

2.1.1 The consultation process

We sought the widest possible consultation on the content of the questionnaire with visually impaired people, their representative organisations and those concerned with their welfare. The consultation process itself went through several steps, which we regarded as an essential part of our research strategy.

2.1.2 The information pack

As a first step, Sally Edge, who had just completed a survey of blind people in Hampshire (Edge, 1987), was commissioned to draw up a list of need headings. The list of 19 headings, produced in the 1986 New Beacon article (Bruce and McKennell, 1986), mostly survived the consultation process and correspond broadly with the chapter headings in this report. The list was circulated for comment to over 30 advisers, each a specialist in one or more of the areas concerned.

On the basis of their comments, we prepared a rough draft of a questionnaire which would be required to do justice to the particular area. These drafts were far too long to be workable, and the next step was to condense them, at the same time producing a short prose rationale of what it was necessary to omit. The shortened, but still overlong, questionnaires, together with our commentary on each need area, were then put together as an information pack. The pack, together with the New Beacon article announcing the proposed survey, was circulated as a consultation document to a further list of organisations and individuals, to New Beacon readers who wrote in to request it, and to the steering com- mittee guiding the research.

2.1.3 Pre-pilot qualitative interviews

Although a standardised interview schedule is essential for a quantitative survey, there is a danger that it can be prematurely standardised around its designers' preconceptions. Although we had taken the experts' views, we believed that we had not sufficiently consulted visually impaired people themselves. Before finalising the pilot schedule, therefore, one of the Survey Directors (AMK) and the Assistant Director (EW) personally carried out conversational interviews with a small but varied sample of 20 visually impaired adults. The 19 topic areas and the experts' views were a guide to issues raised in conversation, but no formal schedule was used. The interviews were non-directive, allowing scope for eliciting from respondents further issues or emphases that seemed important to them. The transcripts of the interviews (which were tape-recorded) were analysed to provide an additional source for the content and phrasing of questions in the largely standardised pilot schedule.

2.1.4 The concept of need

Although the concept of need was central to our enquiry, and to the questionnaire design, it was not possible to proceed from any abstract definition. A literature search (e.g. Bradshaw, 1972; Smith, 1980; Clayton, 1983) shows that there is no single agreed definition of 'real need'. That said, one main distinction does run through the literature, and this can be applied in turn to each of the need areas - defined pragmatically by means of the consultation process. This is the distinction between self-assessed need and comparative assessment of need. To define the former, people are asked directly if they are aware of a need or service, have tried or want to receive the service, or, if already a user, are satisfied with it. Comparative assessments, by contrast, are reached through an evaluation of statistical information on people's circumstances independent of their own perceptions. The questionnaire was designed to allow both types of assessment.

2.2 Sampling

2.2.1 Sources

Names and addresses of visually impaired people who were willing to take part in the survey were obtained from two different sources: the Office of Population Censuses and Surveys (OPCS) (wave 1) and local authority registers (wave 2).

2.2.2 The OPCS first wave sample

The OPCS master sample to which we had access was itself constructed from those who returned a short questionnaire sent (mostly) by post to 100,000 randomly drawn households. Part of the RNIB adult sample was thus a sub-sample of those who identified themselves as having visual difficulties in the OPCS screening. All respondents aged under 60 and half those aged 60 or over who recorded that they had difficulty in recognising a friend across a road, or in reading ordinary newsprint, were visited by the OPCS interviewers and given acuity tests for near and distant vision in their homes as part of a longer interview covering mainly health, social services and income. RNIB was allowed to transfer data from the OPCS questionnaires as they were returned from the field. The transfer sheets covered mainly the sight test results plus some demographic information which allowed RNIB to define its sample. Most of the original OPCS informants had agreed to a further visit by an interviewer at the time of their initial interview, but OPCS decided that they should be given a second chance to opt out by procedures, noted below, that would preserve their anonymity (section 2.2.2.3).

2.2.2.1 Home sight tests

The home sight tests used by OPCS adopted a similar procedure to those used by Cullinan (1977). Distance visual acuity was measured using a standard Snellen card (scaled down for use at 10 feet). For near vision the test type used was the standard 'N' form approved by the Faculty of Ophthalmologists. In each case the card was placed or held 'in such a position that it gets the maximum amount of illumination' (see also section 21.2.1).

2.2.2.2 The RNIB sub-sample boundaries

Only a minority of those reporting difficulties in vision in the OPCS survey are at the low acuity levels that are the concern of RNIB. At a meeting of the advisory group it was decided that the sample selected for RNIB would have a cut-off point at no better than 6/24 for distance vision and N.14 for near vision (the latter being the criterion for membership of RNIB's Talking Book Service).

2.2.2.3 Sub-sampling procedure

The transfer sheets supplied by OPCS contained 2,359 records of individuals, identifiable only by serial number, who reported difficulties with vision. Analysis by RNIB revealed 1,248 respondents who met the residual vision criterion outlined above. These were stratified by residual vision level. We selected all those reporting that they were registered and all the unregistered at the lower residual vision levels but only half those aged 60 or over at higher levels (6/36 Snellen or better).

The serial numbers of these respondents were then given to OPCS. In August 1986 OPCS wrote to these respondents on RNIB's behalf, asking if they were prepared to be re-interviewed. Only a handful refused. The remaining 524 names constituted the sampling frame for wave 1. (The response rate for this first wave fieldwork was 65%, yielding a total of 338 interviews.)

2.2.3 The second wave (top-up) sample

2.2.3.1 The further OPCS segment

The initial intention had been to achieve a target sample of 400 interviews, half aged under 60 and half 60 or over. However, even in the OPCS master sample there were only 160 people aged under 60 within the defined residual vision cut-off points, and after wave 1 fieldwork we were 90 people short in this age group. We therefore decided to 'top up' the sample with a further wave of fieldwork, and at the same time the opportunity was taken to extend the target sample to 600. There were still 67 individuals at registrable residual vision levels available in the OPCS sample, and these were selected for the second wave sampling frame. The remainder of the second wave sampling frame was taken from registers of blind and partially sighted people maintained by local authorities (LAs). This LA sample was mainly drawn with the aim of increasing the number of under-60s registered blind people available for analysis, though there was also some topping up of older registered blind people (see table in section 21.5).

2.2.3.2 The local authority component

A number of local authorities were approached, and these wrote to people registered as blind or partially sighted in their area. A total of 312 blind or partially sighted people agreed to be interviewed, from nine local authority areas - Berkshire, Dudley, Durham, Hampshire, Leeds, Nottingham, Oxford, Northumberland and Waltham Forest. The selection was not totally random, in that all the authorities were 'known' to RNIB, but they did represent a broad cross-section both geographically and in the level of service they were known (from other information) to provide. Although the LA sample cannot be portrayed as a probability sample covering Great Britain of those on the registers, the achieved sample can be re-weighted to obtain a correctly balanced sample by age groups (section 2.4.1). Together with the 'top-up' sample of 67 from the OPCS (all unregistered), the LA sample comprised the sampling frame for the second fieldwork stage. (For further details of the target sample and the response rates see section 21.5.)

2.3 Fieldwork

2.3.1 Timing

The key stages of the fieldwork were as follows:

26 September 1986 first pilot

28 October 1986 second pilot

late November/December 1986 main fieldwork (wave 1)

March/April 1987 main fieldwork (wave 2)

2.3.2 Piloting of the standardised schedule

Following construction of the questionnaire, a standardised schedule was drawn up for the pilot exercise. This, along with the main fieldwork, was carried out under contract by the British Market Research Bureau (BMRB).

Mainly because of the breadth of information to be collected, a two- stage pilot exercise took place. Eight interviews with severely visually impaired volunteers were conducted during each pilot. Care was taken to mix geographical locations and the age and residual vision levels of the interviewees. The small size of the pilot sample enabled each interview to be followed with a degree of attention that more than compensated for the small number. Very experienced BMRB interviewers, mainly fieldwork supervisors, were used and in every case a BMRB executive, or one of the RNIB Survey Directors (AMK) or the Assistant Survey Director (EW), was present. In addition, these BMRB/ RNIB pilot interviews were supplemented by two further interviews conducted independently of BMRB by Sally Edge.

A period of about four weeks was allowed between the first and second pilots, and also between the second pilot and the start of the main field- work. This enabled the experiences gained from the pilot interviewing to be reviewed, and comments from RNIB senior staff who had been sent a copy of the pilot questionnaire to be incorporated. Many questions left open at the pilot stage, for the respondent to answer in their own terms, were closed in the final questionnaire. That is, either coding frames for the interviewer to check or pre-set alternatives for the respondent to choose were incorporated in the final schedule on the basis of replies obtained during the pilot.

Perhaps the most serious problem to arise from the pilot interviewing was the length of the questionnaire. During the first pilot, the interviews lasted more than two hours, which was found to be too taxing for both respondent and interviewer. After each pilot the two RNIB Survey Directors (IB and AMK) and the Assistant Director (EW) considered with BMRB executives the unavoidable deletions and other questionnaire changes. Interview times were eventually trimmed to 95-100 minutes for the main fieldwork stages.

2.3.3 Main fieldwork

All BMRB interviewers on the main fieldwork attended a half-day briefing session, chaired by a BMRB executive. The briefings covered: background to the survey, terminology, interviewing style, contacting procedure and a series of dummy interviews to familiarise interviewers with the questionnaire.

Interviewing on the first stage of fieldwork began in late November 1986, and was completed shortly before Christmas. In total, 338 interviews were carried out. The second stage of fieldwork was carried out in March and April 1987, when a further 257 interviews were conducted, giving a total of 595 interviews. Interviews took place in respondents homes.

Interviewers were instructed to make at least four attempts to contact respondents. Appointments were made by telephone where possible; otherwise interviewers called on respondents personally to make appointments. The overall response rate was 66%. The outcome of all contacts was recorded, and is detailed in section 21.5.

2.3.4 Checking

In total, 52 respondents were re-contacted (either by post or telephone) to check the accuracy of the information collected.

2.4 Analysis

2.4.1 Weighting

Although resources eventually permitted interviews with 595 visually impaired people, it was particularly important that the final sample should contain sufficient numbers of respondents aged under 60 for detailed analysis. A randomly chosen 600, for example, would only have given some 10% in this age group, since most visually impaired people are elderly. The younger age group was therefore deliberately over-represented in selecting the interview sample. To restore the true proportions for tabulation purposes, the numbers of people in each age category have been multiplied by an appropriate weighting factor. More people were available at higher residual vision levels than we needed, so these too were under-sampled and the weights adjusted to restore their true proportions. The weights were finally adjusted by grossing up from the balanced sample numbers to make possible the projection from the sample to population numbers. (See section 21.3 for more detail .)

Table 2.1 illustrates some main effects of weighting. It shows the percentages and actual numbers for the three age groups in the RNIB interviewed sample (A columns), and the corresponding population proportions and projected population numbers resulting from weighting (B columns).

 

A - Age distribution of respondents in the RNIB survey in % (unweighted figures)

A - Age distribution of respondents in the RNIB survey in number (unweighted figures)

B – Population projections from the RNIB survey in % (weighted figures)

B – Population projections from the RNIB survey in number (weighted figures)

Age group

        

16-59

50

(299)

10

77K

60-74

21

(124)

24

180K

75+

29

(172)

66

500K

Total interviewed

100

(595)

    

Weighted population base (K = ‘000s)

    

100

757K

2.4.2 Demarcations

2.4.2.1. Actual and reported registration

The actual registration status is known for the LA sub-sample. At a number of points in the analysis, the OPCS respondents who reported that they were registered blind or partially sighted, and those who reported that they were unregistered, have been classified as if they were reporting their position correctly. The available evidence suggests that errors in classification of registration status through mistaken self- reports are likely to be small in frequency and significance (section 21.9).

Upper limit for registrable partially sighted

We call those sight testing at Snellen >6/24 but unable to read N.12 on the reading test 'N12s' for short. In the OPCS sample there were 167 N12s (see also section 21.2.1). We made a small investment in this group, drawing selectively and achieving 37 among our 595 sample. This is just enough to examine their characteristics further. We then had to decide on the treatment of the N12s with respect to their registrability classification.

Although technically these people fall outside statutory registration limits (in so far as these are determined by Snelien test results), analyses of the original data tape from the OPCS survey showed that some 17% of those reporting that they were registered partially sighted were in fact N12s (Table 21.1 and section 21.2.1). We therefore decided that some N12s should be including our population projections of the registrable but that we would estimate their numbers conservatively. We assumed that 'at the very least' some 5% of the non registered partially sighted would be N12s if these people had had the same opportunity/ willingness to become registered as those who do. The N12s in our sample were weighted accordingly to increase the projected population numbers for the partially sighted by 5%.

2.4.2.3 The dividing line between registrable blind (B) and registrable partially sighted (PS)

The abbreviations B and PS are used in the tables in this report to stand for the registrable blind and the registrable partially sighted. This is the main division by residual vision levels used in the tabulations. The B category combines those actually registered blind and those who are non-registered but whose residual vision is at the statutory levels that render them eligible for registration as blind. The PS category similarly combines the registered and non-registered partially sighted.

For analysis purposes we have to draw a sharp line between the blind and the partially sighted, even though in reality the boundary between them is blurred. This section describes the cutting-points used, and how they were determined.

Figure 2.1 Reported registration status by Snellen categories

bar chart showing reported registration status by Snellen catagories

    Source: OPCS master sample (section 2.2.2)

The general character of the B-PS distinction can be illustrated by the relation between registration and Snellen values. Figure 2.1 charts this relationship for the data from OPCS.

Two main points emerge from Figure 2.1. First, as we would expect, the Snellen category < 3/60 is the one in which the blind predominate. Second, the blind are by no means confined to this level. They are present, albeit in diminishing proportions, at successive Snellen levels. The same holds in reverse for the partially sighted.

While more can be said about the particular set of data in Figure 2.1 (section 21.1), it serves to exemplify the fact that no single criterion other than the actual fact of registration exactly separates the blind and the partially sighted. On any other external criterion we will be dealing with two overlapping distributions. We can expect any body of data relating Snellen levels to registration status to show the same basic pattern -namely, a preponderance of blind at < 3/60 with some overlap into adjacent Snellen categories.

The reason for this result is that a person with visual acuity of < 3/60 is usually regarded as registrably blind. In addition, under the 1948 National Assistance Act a person is defined as registrably blind if he or she is 'so blind as to be unable to perform any work for which eyesight is essential. Thus, over and above visual acuity, the statutory definition of blindness entails considerations of visual field along with vague, less measurable functional criteria.

In the light of the above, we made the following decisions on the criteria for separating the blind from the partially sighted for analysis purposes.

For the LA segment of the sample we used their factual registration status (209 respondents).

For the OPCS sample we used their reported registration status where this was available. The consideration here was that the good approximation (section 2.4.2.1) of reported with factual registration status would render the former a better criterion than any choice of Snellen cut-off values (148 respondents).

For the OPCS segment who reported that they were unregistered we classified those (63 respondents)with Snellen values worse than 6/60 as blind. (For further discussion, see section 2.1.1 .)

The results (including the decisions noted at section 2.4.2.2) in terms of our tabulation is shown in Table 2.2.

 

Sample numbers unweighted figures (B)

Sample numbers unweighted figures (PS)

Sample numbers unweighted figures (Total)

Registered

197

155

352

Non-registered

70

173

243

Total

267

328

595

2.4.3 The choice of classificatory variables

2.4.3.1 Strategy for an initial sift of the data

Based on a questionnaire containing more than 4,000 items of infor- mation, the survey can be considered as a rich mine of potential information. Only a limited amount can be extracted and sifted in this first report. The main strategy adopted for this initial data sift is the choice of a standard classificatory variable based on age and residual vision, against which items in each need area can be broken in one computer run, and the selection for comment of breakdowns that prove diagnostic. The shape of findings in one need area can then be related to other need areas.

2.4.3.2 Breakdowns by blind-partially sighted within three age groups

Age and residual vision were used as stratification variables at the sample design stage with a view to maximising the numbers available for analysis within these categories. Further, we were confident that age and residual vision would prove important in policy and practical considerations. The 'standard head' used for analyses within three age groups and two residual vision categories contains the data shown in Table 2.3.

 

Age (16-59) B

Age (16-59) PS

Age (60-74) B

Age (60-74) PS

Age (75+) B

Age (75+) PS

All ages B

All ages PS

Total

Unweighted

137

162

55

69

75

97

267

328

595

Weighted (K)

30

47

65

115

205

295

300

457

757

The unweighted data are the numbers interviewed and the weighted data are the population projections (K = '000's). For definition of the B and PS categories see section 2.4.2.3

It is possible to make a more refined analysis by age and/or residual vision, but the basis for percentaging becomes rather thin unless we collapse categories for one or other of the variables. For example, we have the capability (see Chapter 6) to sub-divide the B category into those with and those with no light perception (NLP). But in the 60-74 group there are only 55 blind people altogether, and those with and without light perception are 31 and 24 respectively. The latter group is too small reliably to detect any but the most massive differences. Generally we only reported on more refined breakdowns of this type where differences were marked enough to be clearly reliable. Steep gradients between blind and partially sighted sub-groups, within the same age band, usually imply difference at lower levels of residual vision, i.e. between those with no light perception and others in the blind category.

2.4.3.3 Scope of the analysis

Visually impaired people are unique as individuals, and vary importantly in ways relevant to their needs in other dimensions besides age and residual vision level. Prime examples are: onset of visual loss; age (age at onset, duration of loss); presence or absence of other disabilities; living alone or with others; registered or non-registered. Breakdowns have been done on the standard basis for the registered/non-registered variable, and differences are noted accordingly in this report. But in order to complete within a finite timescale we have treated the other possible standard cross-breaks on an inference basis in the same way as for potential cross-breaks between need areas. In other words, we have examined the distributions on the primary variable and drawn inferences for findings on other variables without, as a rule, making the necessary cross-tabulation to check these.

2.5 Presentation of results

The percentages and other proportions in this report are based on weighted figures, unless otherwise stated. That is, they relate to the whole visually impaired population or to some defined section of it. To obtain an estimate of the corresponding population number, therefore, the percentage finding can be multiplied by the population numbers shown as the base figure in the tables.

For simplicity we refer to 'the percentage of respondents', though this should be understood as shorthand for a more accurate but ponderous expression such as 'the numbers of respondents weighted to represent population numbers and percentaged on the weighted population total'. The key point is that 'percentage of respondents' means, unless other- wise stated, our best estimate of the percentage of visually impaired people living in private households in Great Britain with the particular characteristic concerned.

Significance tests (section 21.4) should be based on the actual numbers interviewed (unweighted figures). Both weighted and unweighted base figures are shown in the major tables.

While data have been analysed in terms of the age/residual vision six- category standard head (section 2.4.3.2), not all tabulations show results in terms of these six categories. Separate columns of data are presented only where real differences can be noted and discussed. Adjacent age and/or residual vision categories have accordingly been collapsed where the initial tabulation showed no significant differences (section 21.4).

Most tables show the precise question wording that generated the data. The question number is always quoted, and the precise wording can be found in the questionnaire, a copy of which can be obtained from the RNIB Reference Library.

3 Demographic Characteristics and Registration

3.1 Size of the visually impaired population

Perhaps the most startling conclusion from this study relates to the number of visually impaired people in the population. An earlier report by Shankland Cox (1985), commissioned by RNIB, concluded from desk research that official registration figures underestimated 'true'figures by 30% in the case of blind people and by 20% for partially sighted people.

This study produces, for the first time, reliable estimates, based on fieldwork, of the number of visually impaired people in Great Britain. Official registration figures suggest (section 21.3.2) that there are 94,000 blind and 54,000 partially sighted people aged 16 or over in private households. Our results (Table 3.1) predict 300,000 blind people (319% above official registration figures) and 457,000 partially sighted people (846% above official registration figures) aged 16 or over in private households. When residential institutions are included (section 21.3.3), our estimate for the numbers of blind people aged 16 or over increases to 380,000, 319% higher than the official (1986 DHSS) figure of 119,000; for partially sighted people the increase is to 579,000, 839% higher than the official figure of 69,000.

The entries in Table 3.1 are population projections obtained by applying weighting procedures to the RNIB sample data as outlined in section 2.4.1 (and described more fully in section 21.3). The definitions of registrable, and the demarcation between blind (B) and partially sighted, (PS), are discussed in section 2.4.2. (For a corresponding unweighted table, i.e. showing the distribution for the 595 interviews, see section 21.9.)

The policy implications of this discovery of a massive unrecognised visually impaired population are significant for both service planning and service delivery. Providers may argue, rightly, that services are open to the non-registered. However, results reported later (in Chapters 7 - 18 and, in particular, 19 and 20) show that in fact services only reach a small proportion of non-registered people. If services are to be delivered on the basis of equality of need, resources must be substantially increased to approximately three times the current level. These findings will also radically affect service planning. For example, specialist worker numbers tend to be judged on a ratio basis of the numbers of people registered blind or partially sighted (e.g. one worker to 250 or 400 registered) rather than the actual numbers who may be eligible for registration. The age distribution reported later in this chapter and else- where will also introduce new factors to be taken into account when planning services.

A more detailed analysis of registration status by age and residual vision levels is given in section 3.10.

 

Age (16-59)

Age (60-74)

Age (75+)

Total

*Registered B

18

28

63

109

*Registered PS

12

15

34

61

Total Registered

30

43

97

170

**Non-registered, Registrable B

12

37

142

191

**Non-registered, Registrable PS

35

100

261

396

Total non-registered

47

137

403

587

Total registrable VI

77

180

500

757

(Number interviewed)

(299)

(124)

(172)

(595)

*DHSS published figures reduced by estimate of numbers in residential institutions (see section 21.3.3).

** Estimates derived from OPCS sample applying OPCS weighting procedures and results of home sight tests (section 21.3.2)

3.2 Age distribution

Table 3.2 documents the well-known fact that, in comparison with the general population, the distribution of visually impaired people is enormously skewed towards older age groups. There are no significant differences between residual vision levels. Chapter 12 provides further data comparing the age distribution of visually impaired people with that of people with other disabilities and shows that visual impairment is more age-related than virtually any other disability.

 

Visually impaired population (RNIB survey weighted data) in %

General population in %

16-59

10

74

60-74

24

18

75+

66

8

Total %

100

100

Base (population)

757K

42,903K

(Number interviewed)

(595)

  
3.3 Sex and age

Tables 3.3.a, and 3.3.b, compare the sex distribution of the visually impaired population with that of the general population. In each age group there are more visually impaired women than men; the difference is greater than in the general population, and increases in the older age groups. Even in the 16-59 age group, where women make up half the general population, they number 57% among visually impaired people (the difference is 'statistically significant'). Women comprise 68% of visually impaired people in the 60-74 age group compared with 55% in the general population, and 75% of visually impaired people compared with 66% of the general population among those aged 75+. Thus, among those aged 75+, three out of four visually impaired people are women compared with two out of three in the general population. But because the visually impaired population is so massively skewed towards the very old, the disproportion of females overall resembles that in the oldest group. Thus 72% of the total visually impaired population are women compared with 52% in the population as a whole.

 

Age (16-59) in %

Age (60-74) in %

Age (75+) in %

Total

Males

43

32

25

28

Females

57

68

75

72

Total %

100

100

100

100

Base (population)

77K

179K

501K

757K

(Number interviewed)

(299)

(124)

(172)

(595)

 

Age (16-59) %

Age (60-74) %

Age 75 %

Total

Males

50

45

34

48

Females

50

55

66

52

Total %

100

100

100

100

Base (population)

3,184K

7,797K

3,259K

42,903K

3.4 Marital status

Table 3.4 shows that even in the 16 - 59 age group fewer visually impaired people are married, 56% compared with 74% in the general population. The discrepancy widens in the 60+ age group; only 33% of visually impaired people compared with 59% of the general population are married.

 

Visually impaired population (RNIB survey) Age (16-59) %

Visually impaired population (RNIB survey) Age (60+) %

General population (GHS 1985) Age (16-59) %

General population (GHS 1985) Age (60+) %

Single

26

10

18

8

Married

56

33

74

59

Widowed

9

55

2

30

Divorced

9

2

6

3

Total %

100

100

100

100

Base (population)

77K

680K