Scottish Government

CHAPTER 2 DEMAND FOR SERVICES

Key Findings

The availability of prevalence data is limited with official statistics only being available for visual impairment. Here, official statistics do provide a rough gauge of sight loss prevalence. However, evidence suggests that the numbers are confounded by very significant under-registration. For hearing and dual sensory loss, official statistics are not routinely available and formal registration processes do not exist.

This aside, current estimates suggest that there are:

• over eight million people in the UK with hearing loss, with approximately 75,000 Deaf British Sign Language Users in Britain;
• around 38,000 people registered as blind or partially sighted in Scotland; and
• around 23,000 deafblind people in the UK, approximately 5,000 of whom live in Scotland.

In all cases, evidence suggests that these figures probably underestimate the prevalence of sensory loss affecting adults in the UK. This makes it difficult to estimate unmet need in the context of a service review.

Introduction

2.1 In understanding the demand for community care, mental health and other services for sensory impaired adults across Scotland, it is important to establish the profile of the sensory impaired community. This chapter provides a summary of the estimated prevalence of visual, hearing and dual sensory loss across Scotland and offers operational definitions for sub-sections of the community which are used for the remainder of the report.

Definitional Issues

2.2 Figure 2-1 summarises the core user groups included in this review.

Figure 1.1 Classification of Sensory Impairments

2.3 This model is simplistic in its composition and excludes a myriad of differences that exist between sub-groups listed here. These differences are acknowledged in the following chapters and this model is presented purely to provide an 'at a glance' summary of the main client groups to which this research refers. The model is not intended to reflect any hierarchy of sub-groups.

Hearing Impairment

2.4 Hearing impairment is a generic description that covers multiple different sub-groups.

2.5 The term 'Deaf community' has unique demographic, linguistic, political, psychological and sociological dimensions: Britain's Deaf community shares characteristics born from common experiences, beliefs, values and norms (Department of Health, 2002). An important element of Deaf culture is the use of a common language - British Sign Language ( BSL).

2.6 Ridgeway and Monteiro (1997) suggest that the degree to which a Deaf person participates in the Deaf community depends upon:

• the age at onset of their deafness;
• the degree of deafness that they experience;
• the age at which the diagnosis of deafness is made and the effectiveness of the counselling and support that parents and carers are given;
• the type of education that the Deaf person receives. That is, whether their schooling was/is based on oral/aural methods or BSL;
• their ethnic background; and
• their exposure to, and identification with, the Deaf community.

2.7 Quite apart from the Deaf community are a number of profoundly deaf adults who have acquired deafness and may not, as a matter of course, be BSL users. For some, spoken and written English is still used although the clarity of the spoken word may deteriorate over time whilst others may use variations of BSL or other sign systems.

2.8 Perhaps the largest sub-group within the hearing impaired community is the hard of hearing, many of whom will have acquired hearing loss over time. A large proportion of the hard of hearing community is over 65 years old.

2.9 For presentational purposes, issues affecting both Deaf, deaf, deafened and hard of hearing people are presented under the heading of hearing impairment. However, key differences in needs and views expressed are outlined in the text where appropriate.

Visual Impairment

2.10 Visual impairment covers people who have some residual vision as well as those who have no sight at all but essentially, the visually impaired community comprises those who have some degree of sight loss which can not be corrected with spectacles.

2.11 Blindness is defined by specific criteria for registration, defined under the National Assistance Act 1948 as being "so blind that they cannot do any work for which eyesight is essential". Many people in the blind community may, therefore, still retain some vision.

2.12 In contrast, there is no legal definition for partial visual loss and registration can occur in all cases where a person is assessed to be "substantially and permanently handicapped by defective vision, caused by congenital defect or illness or injury" (Workers' Educational Association, 1997).

2.13 Visual assessments are carried out, for the most part, by opthalmological specialists working in specialist eye clinics and the assessments offered by these specialists are required to achieve the BP1 certification for blindness or partial sight.

2.14 Again, many of those in the partially sighted community are those aged over 65 who have lost their visual acuity over time. It is estimated that less than 10% of visually impaired people have their blindness from birth (Du Feu and Fergusson, 2003).

Dual Sensory Loss

2.15 The accepted European definition of deafblindness asserts that "Persons are regarded as deafblind if they have a severe degree of combined visual and auditory impairment resulting in problems of communication, information and mobility. The group will include persons who have had severe vision and hearing impairment since birth or early childhood, and those who develop the dual impairment in adult life" (Breaking Through, 1988, p.6).

2.16 Department of Health reports (2002; 2005) note that 'deafblind' is an umbrella term that covers a number of different groups. For example, some people with dual sensory impairment feel they have a strong Deaf identity, while others have a deafblind identity. The reports also emphasise that people who acquire one sensory impairment later than the other will have different communication skills and needs compared to those who are born deaf and blind.

2.17 The dual sensory loss community also includes those who have Usher Syndrome. The major symptoms of Usher Syndrome are hearing impairment and retinitis pigmentosa, an eye disorder that causes a person's vision to worsen over time. Many with this syndrome are born profoundly deaf or hard of hearing with sight loss occurring in early to mid-adulthood.

2.18 Contrary to common misconceptions, deafblindness is more than simply vision loss and hearing loss combined (Sense and Deafblind UK, 2001). The impact of dual sensory loss is significantly different from loss of either sight or hearing, as there is no opportunity to compensate using the remaining sense - dual sensory loss therefore has a multiplying effect (Du Feu and Fergusson, 2003).

Prevalence

2.19 Table 2.1 provides an indication of the number of registered hearing, visually and dual sensory impaired adults in Scotland

Table 2.1 Estimated Prevalence of Sensory Loss in Scotland

Hearing Impairment

2.20 The precise size of the Deaf community is unknown (Department of Health, 2002). However, it is estimated that there are over eight million people in the UK with hearing loss (Du Feu and Fergusson, 2003). It is also estimated that the first and preferred language of over approximately 75,000 Deaf people in Britain is British Sign Language ( BSL) ( RNID). Ubido et al (2002) note that there are likely to be around 154,000 deafened people in the UK (people who have become severely deaf after the acquisition of language).

2.21 The 2004 Action Plan also highlights that the prevalence of hearing impairment is difficult to estimate, as accurate figures do not exist - probably because of under reporting. However, research has shown that the number of people with more moderate degrees of hearing loss is far greater than those with more severe losses. Most studies of sensory impairments show higher prevalence rates among men than women, and among lower socio-economic groups (ibid).

2.22 Research suggests that the prevalence of hearing impairment in Scotland is expected to rise, the actual rate of deterioration being age-related. Current figures show that eighty percent of hearing impaired people are aged over 60 years and, given no change in prevalence rates over the next 20 years, the demographic structure of the UK will increase the number of hearing impaired people by about 20%.

Visual Impairment

2.23 Scottish Executive statistics (2005) show the number of people registered as blind or partially sighted in Scotland is estimated to be just over 38,000. The majority (60%) of those registered are blind, while 40% are partially sighted. Females are more likely to be registered than males (63% are women), and just under 80% are over the age of 65. Of those registered as visually impaired, 20% have additional disabilities. Of these, 33% are deaf.

2.24 The number of blind and partially sighted persons presented here relate to registered persons only. The Social Work (Scotland) Act enables local authorities to keep a register of blind and partially sighted persons and the figures presented here area based on local authority returns for the year ending 31 March 2005. Registration is voluntary and these figures therefore likely represent an underestimate of cases as they will exclude persons who meet the criteria for registration but who have not registered with their local authority (even if known to the authority as being visually impaired).

2.25 Indeed, research suggests that the majority of people eligible are not registered; estimates vary but it is likely that under a third of those eligible are registered ( RNIB, 2001).

2.26 Du Feu and Fergusson (2003) also stress that official figures greatly under-represent the prevalence of visual impairment. They state that there are more than an estimated 300,000 blind people and 500,000 partially sighted people in the UK. Vale (2004) estimates that there are 1.1 million people in the UK who could register as blind or partially sighted.

2.27 According to RNIB estimates, only 15% of people with a visual impairment in Scotland are registered as blind or partially sighted. This is the lowest percentage of any country in the UK.

2.28 Two thirds of people with a visual impairment have an additional disability or serious health problem such as deafness, arthritis, angina or diabetes ( ADSS, 2002). These people are likely to require additional help in terms of community care services in order to cope with their other health problems as well as their visual impairment.

Deafblindness

2.29 Research suggests that there are more than 23,000 deafblind people in the UK (Du Feu and Fergusson, 2003), and that this community is widely dispersed (Department of Health, 2005).

2.30 Official figures for the number of deafblind or dual sensory impaired adults in Scotland are not available and it is assumed that many will appear only in single impairment registration lists, or may simply be unrecognised as having dual sensory impairment (Scottish Executive, 2004).

2.31 Data from the Scottish branch of the world's oldest charity working with dual sensory impairment, Deafblind Scotland, suggests that there are around 5,000 deafblind people in Scotland (Deafblind Scotland, undated). Of these, they estimate that:

• 25% are less than 65 years of age;
• 40% live alone;
• 15% have Usher Syndrome;
• 22% do not use speech to communicate; and
• 31% have additional disabilities.

2.32 These, again, are assumed to be an under-representation of the true number of adults with dual sensory loss as the number can only ever reflect the numbers of people who are known to service providers and who have engaged with such services.

Summary

2.33 It is difficult to offer a classificatory scheme which subsumes the multitude of types and degrees of sensory loss experienced by the adult population.

2.34 The availability of prevalence data is limited with official statistics only being available for visual impairment. Here, official statistics do provide a rough gauge of sight loss prevalence. However, evidence suggests that the numbers are confounded by very significant under-registration. For hearing and dual sensory loss, official statistics are not routinely available and formal registration processes do not exist. This makes it difficult to estimate unmet need in the context of a service review.

2.35 Having identified some of the main challenges in establishing a baseline of potential need, the following chapters explore, in more detail, what is known about the nature of services required from available evidence and from the research conducted here.