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CHAPTER 4 IDENTIFYING MENTAL HEALTH NEEDS

Key Findings

In general, there appears to be limited documentary evidence regarding the mental health needs of adults with visual impairments and those experiencing dual sensory loss. In contrast, much has been written about the mental health needs of hearing impaired adults.

Research has consistently found deaf people to be at a higher risk of mental illness than the general population. Estimates suggest that 40% of the hearing impaired population and 50% of the profoundly Deaf ( BSL using) community may experience mental health difficulties at some time in their lives. This ranges from mild depression to psychosis.

For visually impaired adults, mental health needs may vary greatly depending on the time of onset of vision loss. Sudden sight loss can result in denial, followed by distress, anxiety, and concerns about becoming dependent on others. This in turn can lead to depression. Progressive or congenital sight loss can result in similar feelings of dependency, depression and social anxiety and, in particular, social isolation has been highlighted in the research evidence as a common outcome.

There is a notable lack of research evidence exploring the metal health needs of deafblind adults and there is, perhaps, a lack of understanding that deafblindness does not simply result in the merging of mental health outcomes for visual and hearing impaired persons. For this group, social isolation is likely to be compounded by not being able to use a second sense to compensate for communication challenges arising from single sensory loss.

For all client groups, difficulties with communicating mental health needs, and a lack of sensory aware staff in medical settings often results in misdiagnosis. This is compounded by underreporting due to problems associated with accessing mental health services in the first instance. Both of these factors, along with the absence of empirical research with visual and dual sensory impaired groups make it difficult to provide a comprehensive account of the mental health needs that might be experienced in these communities.

Introduction

4.1 Mental health awareness is an area that has recently attracted growing attention across the service providing community and the public at large. Despite this, relatively little is known about the metal health needs of adults with sensory loss who are experiencing mental ill-health.

4.2 This chapter presents the main mental health needs identified from the research literature and highlights the gaps in terms of what is known about the mental health needs of hearing impaired adults compared to those with visual and dual sensory loss.

Mental Health and Hearing Impairment

4.3 Unlike the mental health needs of blind adults, much research has been conducted to investigate the mental health needs of people with a hearing impairment, and has consistently found deaf people to be at a higher risk of mental illness than the general population.

4.4 There is a wealth of literature covering the prevalence of various types of mental health problems among deaf people, the difficulties of diagnosis, and the varying needs of congenitally deaf people compared to those who acquire deafness in later life. Again, the literature focuses on the impact of social exclusion on deaf people in relation to mental health.

Prevalence of Mental Health Problems among Deaf People

4.5 It is important to note that research suggests that it is difficult to assess the mental health of people who are deaf, as psychiatric practice is based primarily on a hearing population (Department of Health, 2002). Estimates of the prevalence of mental health problems among deaf people are, therefore, unlikely to be wholly accurate.

4.6 Research findings generally indicate, however, that deaf people are more likely than their hearing counterparts to suffer from mental health problems (McClelland et al, 2001). Evans (2003) reports that 40% of the deaf and hard of hearing people in the UK are likely to experience a mental health problem at some time in their lives. This compares with 25% for the hearing population. The profoundly deaf (those using BSL) have a 50% chance of a mental health crisis (ibid).

4.7 International research supports these links between deafness and mental ill-health. A study of deaf and hearing impaired people in New Zealand found that 49% of respondents said they thought they might have needed help at some time with depression, 43% with mood swings and 25% with panic attacks (Qld Deaf Society, 2004). A similar pattern has been found in Denmark (Alberdi, 1996), Ireland (Coates and McClelland, 1996) and the Netherlands (Jacob et al, 1991).

4.8 This research suggests an incidence of severe problems of between five and eight times greater frequency amongst the deaf population than the population as a whole (Denmark, 1994). Comorbidity (pre-existing secondary diagnoses) has also been found to be higher in deaf people with mental health problems (Department of Health, 2002).

4.9 A report from the Department of Health (2005), argues that the link between hearing impairment and mental ill-health is not surprising, for two reasons. Firstly, some forms of deafness are caused by damage to the brain before birth, so other associated difficulties should be expected. Secondly, deafness for many people is associated with social exclusion and reduced educational and employment opportunities. These factors are known to be linked to mental health status (Social Exclusion Unit, 2004).

Types of Mental Health Problems

4.10 There is some disagreement in the literature about the types of mental health issues that deaf people face. Du Feu and Fergusson (2003) suggest that there is a slightly higher level of organic disorders (which can cause psychiatric symptoms, including mood disturbance, hallucinations and dementia) and emotional and psychological problems among the deaf compared to the hearing population.

4.11 However, the Department of Health (2002) suggest that Deaf adults share similar prevalence rates for psychotic disorders as the hearing population but are more likely to be diagnosed as having a personality disorder, or behavioural or adjustment problems (Department of Health, 2002).

4.12 McClelland et al's (2001) survey of deaf people living in mental health residential care facilities found that the most common mental health problems reported were neurotic disorders and schizophrenia, while Denmark (1994) argues that although there are significant proportions of psychotic and similar proportions of neurotic, deaf people are much more likely to be referred with disturbance of behaviour.

Difficulties of Diagnosis

4.13 Issues relating to mental ill-health prevalence and nature of need can, to some degree, be explained by difficulties of diagnosis with this group. The " Sign of the Times" report, (Department of Health, 2002) explains that members of the Deaf community can be misdiagnosed and wrongly treated because of the difference in language, and a lack of deaf awareness.

4.14 As Hindley and Kitson (2000) note, it is possible that the signs of mental illness are missed if abnormal behaviour is attributed to deafness. Alternatively, the deaf patient's frustration at not being able to communicate with the practitioner could be released in an 'explosive reaction' and mistaken for evidence of mental illness (ibid).

4.15 One of the main problems here is the communication barrier - mental health assessments inevitably focus on behaviour, emotions and attitudes, but the emotional responses of Deaf people are easily misunderstood (Hindley and Kitson, 2000).

4.16 Sign language may also be misinterpreted and personality disorders wrongly diagnosed. For example, linguistic facial expressions may be mistaken for emotional ones, and energetic signing may make people appear to be excitable or aggressive (Du Feu and Fergusson, 2003). Deaf people's eye contact, use of personal space and way of touching others to gain attention may all be misinterpreted, as they can appear direct or intrusive (ibid).

4.17 As Critchfield (2002) notes, BSL users' lack of English fluency also makes misdiagnosis more likely, as clinicians may try to use written English to communicate with the patient. The use of BSL itself can make diagnosis problematic. An example that Hindley and Kitson (2000) give is that BSL is directional - the pronouns for the actor and the object of the action are relative, so they do not have the stable values of 'you' and 'yourself'. They report the example of deaf person responding to the question "you blame yourself?" as if they had been asked "do I blame you?"

4.18 Critchfield (2002) also points out that people who lose their hearing after acquiring language are likely to retain the ability to speak quite fluently: this can result in a more effective diagnosis. People with pre-lingual deafness, however, have greater difficulty communicating with mental health professionals as they are less likely to have fluent English (ibid).

4.19 As well as making diagnosis more difficult, communication barriers between deaf people and service providers also mean that people who are deaf are less likely to seek help. In the past, clinicians believed that deaf people showed a low incidence of affective disorders, particularly depression: in fact, deaf people who were depressed were simply less likely to ask for help (De Feu and Fergusson, 2003).

4.20 De Feu and Fergusson (2003) also point out that communication is not the only problem associated with diagnosing mental illness in someone who is deaf: a lack of general knowledge or inadequate education can sometimes explain a deaf person's 'delusional' beliefs.

4.21 One group who may not have their mental health needs identified are older deaf people. Department of Health research (2002) suggests that primary care workers who are usually in a good position to recognise mental health problems in older people are less likely to be able to do so with Deaf elders.

Congenital Vs Acquired Deafness

4.22 The National Deaf Children's Society ( NDCS) recognises the increased risk of psychological, behavioural and emotional problems among deaf children ( NDCS, undated). However, they suggest that deafness in itself is not a risk factor for increased mental health needs. Rather, mental health problems are " a consequence of being deaf in a hearing-orientated world where the ability to hear is considered a necessity to function in everyday life" (ibid). Although not strictly within the remit of this review, there is a wealth of research evidence regarding deafness and mental well-being among children and young people. Much of this provides valuable insight in terms of users' needs and is presented here for fullness of coverage.

4.23 The NDCS note a number of environmental factors associated with deafness, which may contribute to the mental health problems of deaf children. These include the lack of access to language and communication and a general lack of deaf awareness within society ( NDCS, undated). These factors mean that deaf children have reduced opportunities for fluid two-way interaction, limited access to incidental learning, a partial understanding of what is happening around them, and difficulties in forming and maintaining relationships with others (ibid). Unsurprisingly, this can cause mental health problems.

4.24 Mental health problems in deaf children can also be caused by an excess of organic problems (usually due to the cause of the deafness), an excess of emotional, psychological and behavioural disorders, and delays in access to service, which can increase the duration of mental health problems (Hindley, 2000).

4.25 De Feu and Fergusson (2003) also suggest that some deaf children (particularly those in hearing families) may be exposed to risk factors that can lead to adjustment disorders in adolescence; for example academic failure, low self-esteem, rejecting relationships, inconsistent discipline, failure of age appropriate development, and abuse (sexual, physical and emotional).

4.26 According to Critchfield (2002), children who are deaf show a higher rate of serious emotional difficulties than children who can hear.

4.27 The Department of Health (2002) notes that estimates suggest a prevalence of mental health problems of 40% in Deaf children compared to 25% in hearing children. Research in the UK (Kyle and Griggs, 1996) has shown that this is reflected in the number of deaf young people referred to psychiatric services.

4.28 Denmark (1994) suggests that one reason for this is the issue of identity negotiation in deaf children. The majority (over 90%) of deaf children are born into hearing families, and therefore experience a tension between the mainstream culture of their parents and family, and the need for assertion of identity as a deaf person (ibid).

4.29 Research suggests that a number of factors can influence the mental wellbeing of deaf children, including the degree of deafness, the type of education provided to the child, the method of communication used at school or at home and the presence of additional disorders (eg either visual impairment or neurological conditions) ( RNID, NDCS, 2002).

4.30 Environmental factors also have an impact, including marginalisation within hearing peers and families, linguistic over-protection, emotional over-protection, and adverse experiences such as bullying, child abuse and diminished self-esteem as a result of poorly supported mainstream schooling ( RNID, NDCS, 2002).

Deaf Vs Hearing Parents

4.31 The mental health impacts of deafness are not necessarily the same for children with deaf parents compared with deaf children born into hearing families. Most deaf children (90%-95%) have hearing parents, who are likely to feel ill equipped to cope with a deaf child, at least initially (Department of Health, 2002).

4.32 Communication difficulties between hearing parents and deaf children are common: it is estimated that only 15 percent of parents develop the sign language communication skills necessary to carry on meaningful conversations with their children, beyond simple commands and queries (Critchfield, 2002). Meaningful communication with siblings and extended family members is also rare or nonexistent (ibid).

4.33 Du Feu and Fergusson (2003) also point out that while deaf children brought up in deaf signing families acquire language (in sign) at the appropriate age, deaf children who live in hearing families often experience significant delays in language development. They suggest this has adverse consequences for emotional, social and educational development (ibid). Denmark (1994) supports this argument, suggesting that the increased incidence of mental health issues among people who have been deaf from birth can largely be attributed to these early language experiences.

4.34 Deaf parents are not only in a better position to provide a communicative environment, but they also act as positive role models for the children and offer them access to the Deaf community (Department of Health, 2002). Research has found that deaf children with deaf parents tend to do better academically, are more socially mature and have more positive self-esteem than Deaf children born to hearing parents (ibid).

Gaps in Current Services

4.35 Although specialist mental health services do exist for deaf and hearing impaired people (for example, John Denmark's service in Preston - see Chapter 5), it has been argued that mental health care for deaf people is also generally poor (De Feu and Fergusson, 2003).

4.36 Research in Scotland by Denmark (1994) indicates that service providers and service users often have different views of service provision. Denmark found that providers tend to be more positive about the benefits and take-up of services than are deaf people. Responses received from deaf service users illustrated their frustration at repeated experiences of miscommunication and the resulting ineffective outcomes of services (ibid).

4.37 Because of this discrepancy between the views of service providers and users, Kyle et al (1997) argue that the collection of data about deaf people's needs and an analysis of current provision to meet those needs is a priority.

4.38 Existing literature on mental health services for people with a hearing impairment does, however, reveal several known gaps in service provision, including a lack of specialist services, lack of training and Deaf awareness among professional staff, issues with interpreters and general communication and accessibility problems. These are discussed below.

Lack of Specialist Services

4.39 There is some debate in the literature about whether there is a need for specialist mental health services for people with a hearing impairment. As Black (undated) points out, deaf people with health problems share much in common with their hearing counterparts: " They require access to the same range of effective health services, provided by the same range of services and professionals, as conveniently located as possible".

4.40 Research for Greater Glasgow NHS Board ( FMR, 2002) also suggests that deaf people do not want separate services, but would just like to be able to access the services that are available to the general population. This kind of approach is often advocated on the basis of not wanting to be discriminated against on the grounds of disability (Critchfield, 2002).

4.41 Critchfield (2002) argues that, for people who have been deaf from birth and who communicate using sign language, mental illness may be a more significant barrier to successful functioning in society than their deafness is. He suggests that effective mental health services therefore need to focus on mental health, rather than deafness, and hearing loss should therefore " become invisible to the treatment process" (ibid).

4.42 However, Critchfield (2002) also argues that assuming the interventions that work for hearing patients also work for deaf patients has been unsuccessful in meeting the needs of this group of service users. He argues that effective services are those which are tailored to the special needs of those who are deaf, and that a lack of specialised services means that many deaf people with mental health needs never receive adequate services (ibid).

4.43 Whereas highly specialised services exist for the hearing population (eg for those with forensic needs, with substance misuse or neurological problems, services for the elderly), adult mental health services for Deaf people are mostly generic (Department of Health, 2002). Research by the Health Education Board for Scotland (2004) reported that a specialised mental health service for deaf people in Scotland was identified as a key gap in service provision.

4.44 De Feu and Fergusson (2003) point out specific examples of groups of deaf people for whom there is no specific service provision, including those with a learning disability, older adults, those with an eating disorder.

4.45 In particular, Deaf older adults may find themselves becoming especially isolated as few residential and nursing homes or psychogereatric services have experience with deaf people who sign (De Feu and Fergusson, 2003).

4.46 Black (undated) also notes that there is no specialist inpatient facility in Scotland for deaf people with mental health problems; patients must instead be referred to English services in Salford or London. Psychotherapy is another specialist service with deaf patients may find difficult to access - the ability to access these services often depends on geographical location (De Feu and Fergusson, 2003).

4.47 The Department of Health (2002) 'A Sign of the Times' report also notes that the lack of services may mean that deaf patients are treated away from their own home if they require highly specialised services - this reduces access to their families and personal social networks, which are crucially important.

4.48 Critchfield (2002) also notes that services need to be tailored to meet the differing needs of those who have acquired deafness and those who have been deaf from birth. At the very least, these groups will have different communication needs, so service providers will need to respect the desired modes of communication of the service user (ibid).

4.49 There is currently only one specialist service for deaf children and deaf adolescents aged up to 16 years in the UK, based at South West London and St George's Mental Health Trust ( RNID & NDC, 2002). This service provides specialist assessment, outpatient clinics, some counselling and a consultancy service to other more generic staff, and a small in-patient unit opened in 2001 (ibid).

4.50 Hindley and Kitson (2000) point out the important link between community care and mental health services. Whereas people in the general population are usually referred to mental health services from their local GP, referrals for hearing impaired people tend to be from social workers for deaf people.

4.51 They also argue that the relatively small deaf population does not support the need for expert deaf mental health specialists, so there is a need for trained professionals with a broad general interest in health and social function, who can use sign language - ie social workers (ibid).

4.52 According to 'A Sign of the Times' (Department of Health, 2002), specialised services provided by multi-professional and multi-agency teams have developed in England to meet the mental health needs of the deaf community, and these services also treat patients referred from Scotland, Wales and Northern Ireland.

4.53 The Department of Health also note that there has been some development of locally based services, including a range of supported residential care, counselling, advocacy and social opportunities, but that current provision " relies heavily on a small community of dedicated, expert staff" (ibid). Deaf patients also receive treatment within primary care settings within hearing mental health services.

4.54 Black (undated) argues that mental health services cannot be considered in isolation from other NHS services. His review of service provision in Scotland indicates that the first point of contact for a person with impaired hearing and mental health problems will not be a psychiatrist who has specialised in deaf mental health. Instead, they must be referred to more specialised services from the mainstream - it is therefore of vital importance that the first services that are contacted are able to manage patients and refer them to the appropriate services (ibid).

4.55 The Department of Health's recent report 'Mental Health and Deafness - Towards Equity and Access' (2005) also emphasises the importance of accessibility of primary care services in relation to mental health provision for deaf people. As the report states, this is where the vast majority of mental health problems are managed and treated and is the gateway to more specialist services. For many mental health problems, early intervention is extremely important - primary health care services are clearly vital in dealing with mental health problems at the earliest possible stage (ibid).

Professional Training and Deaf Awareness

4.56 Research literature suggests that, in addition to a lack of specialist services, a lack of Deaf awareness is a problem for service providers across the board.

4.57 Critchfield (2002) argues that human resources and personnel training are significant barriers to the development of appropriate mental health services for people who are deaf. His review relates to services in the USA, where he argues that there is a " serious and widespread shortage of professionals who are trained in deafness in a number of mental health fields, including psychiatry, social work, nursing, counselling, case management, and therapeutic recreation" (ibid).

4.58 Black's (undated) review of Scottish services reaches the same conclusion, arguing that staff in psychiatry (and associated disciplines) are inexperienced in treating patients with a hearing impairment and a psychiatric illness. This is not surprising, given that mental health professionals are likely to encounter a relatively small number of Deaf patients (Department of Health, 2005).

4.59 This lack of Deaf awareness is not just about health professionals being able to use or understand sign language, but also about an understanding of Deaf culture. Black (undated) emphasises that the need for communication support and respect for the cultural diversity of the Deaf community is in itself fundamental to improving the mental health of deaf people.

4.60 The Department of Health's (2002) report recommends the inclusion of Deaf awareness training in the education of all mental health professionals in all agencies (eg education, health, social services and probation). This kind of training is essential in order to allow front-line staff in primary and secondary care to respond appropriately and sensitively to the needs of Deaf people who use their services (Department of Health, 2005). Deaf awareness should be covered in both pre-service training and in in-service training on an ongoing basis (Department of Health, 2002).

4.70 The Department of Health (2005) also notes the role of voluntary organisations in contributing to this training; for example, an information pack for GPs has been produced by the Doctor Patient partnership and the RNID which aims to improve health service access for deaf people. The report also stresses that service users can also play a positive role in informing Deaf awareness training, as they have valuable first hand experience of service access (ibid).

Workforce Issues

4.71 In addition to training current staff, Department of Health reports (2002; 2005) suggest that the recruitment and retention of specialised staff is already an acute problem within health services for the deaf.

4.72 Very few staff work specifically with Deaf people within mental health services, and these services are vulnerable to departures (Department of Health, 2005). There are also retention issues for the very few professionals who have the signing skills to enable them to carry out work in BSL (ibid).

4.73 The number of Deaf people employed in mental health services is also extremely low. This is in part due to the problems Deaf people face in accessing education and employment (discussed above). However, a course in Psychiatric Nursing at Salford University for Deaf students has been successfully established and there are plans to develop similar courses elsewhere (Department of Health, 2005).

4.74 Employing more deaf people in mental health services should help to facilitate service use by deaf people (Scottish Council on Deafness, undated). It should also make services more effective: a signing environment, where effective communication will take place, is likely to be the most therapeutic option for a deaf person (Department of Health, 2002).

4.75 The two Department of Health reports (2002; 2005) make a number of recommendations in terms of workforce issues, including:

• to employ more Deaf people in health and social care, and particularly in mental health services at all levels;
• to increase professional training opportunities for Deaf people;
• to recruit and retain staff to offer specialised services;
• to encourage local mental health communities to include specialised services for the Deaf in their local directories;
• to influence the development of a greater number of BSL interpreters to be available to health services;
• staff working in mental health settings should be encouraged to learn BSL and those in specialist services to acquire a fluency that would allow them to carry out their professional functions; and
• financial incentives may encourage recruitment and retention in this area.

4.76 HEBS (2004) also note that there is a lack of deaf counsellors in Scotland, and a need to raise deaf awareness among hearing counsellors. This research also found that too few Sign Language Interpreters had experience of working in counselling situations (ibid).

Communication Issues

4.77 Clearly, a major factor influencing deaf people's access to any service is the communication barrier that exists between the deaf and the hearing world. Because of the difficulties of diagnosis already mentioned, communication issues are particularly important in the field of mental health.

4.78 Research in New Zealand (Qld Deaf Society, 2004) revealed that only 69% of deaf respondents were happy with the way they communicated with their GP or counsellor. Fifty-one percent said that they would ask for an interpreter if they needed one, but only 34% reported that the doctor or counsellor would book one if asked (ibid).

4.79 The same study found that 39% of respondents said that written information was provided by their GP or counsellor. Even when people were given written information, 23% said that it was not easy to understand (ibid).

4.80 Communication is therefore a serious problem in the provision of services to deaf and hearing impaired people. Research by the RNID (cited in 'Sign of the Times, Department of Health, 2002) found that 12% of deaf or hard of hearing patients actually avoid going to the doctor because of communication difficulties.

4.81 Services therefore need to make more of an effort to facilitate communication with deaf patients if more deaf people are to be encouraged to seek help - indeed, the Disability Discrimination Act (1995) states that services should "provide a reasonable alternative method of making the service in question available to disabled persons".

4.82 In terms of methods of communicating the required information, research indicates a preference for:

• plain English, easy to understand materials (visuals, comic form);
• videos with sub-titles;
• information in the internet; and
• having the same information as the hearing community.

(Qld Deaf Society, 2004)

4.83 The Qld research also required respondents to identify how health services in general could be improved. The most important factors identified were:

• the importance of booking an interpreter and not relying on written notes;
• increased awareness and understanding about deafness;
• increased awareness about some of the problems associated with deafness, like depression and anxiety;
• learning sign language to avoid use of interpreters when confidential;
• learning how to communicate with hearing impaired people eg look at me, speak clearly;
• providing coping skills in dealing with hearing loss in every day situations; and
• using pictures and drawings to explain things.

4.84 Communication technology (discussed in Chapter 2) could also be used to make mental health services more accessible to people with a hearing impairment.

Knowledge of Sign Language and Use of Interpreters

4.85 A further specific aspect of communication between service providers and deaf and hearing impaired people is the use of sign language. It is widely acknowledged in the research literature that sign language is a difficult language for adults to learn to use fluently, and Black (undated) notes that there is a shortage of staff who are able to use BSL in UK mental health services.

4.86 Critchfield (2002) points out that even if mental health professionals do not have a strong grasp of sign language, they should have some basic knowledge in order to aid the communication process. For example, small facial movements can indicate a question, a subtle twitching of the nose signifies "yeah, I know," and a furrowed brow may represent a question (Steinberg, 1991). Even basic knowledge of these features of sign language could make communication with deaf patients much easier.

4.87 Greater use of sign language interpreters in the delivery of mental health services for the deaf is also recommended in the research literature. Critchfield (2002) argues that until enough mental health professionals can communicate fluently in sign language, it is vital to provide sign language interpreters for people who are deaf. His research suggests that " a well trained interpreter can help mental health professionals understand the world view and inner difficulties of a person who is deaf". He also points out that the interpreter can assist the person who is deaf to develop a greater awareness of mental health treatment and programme options (ibid).

4.88 However, one of the primary issues affecting mental health service provision to deaf people is the lack of adequately competent sign language interpreters (Critchfield, 2002, Du Feu and Fergusson, 2003). There is a national shortage of registered BSL interpreters in the UK (Black, undated), which must necessarily cause a problem in the provision of services to the deaf community. According to the Department of Health (2005), there are only 168 Members of the Register of Sign Language Interpreters in the UK. Whilst there are others with BSL skills, registration is the basis on which people are engaged to work in criminal courts - the Department of Health (2005) report argues that this should also provide a benchmark for health care (ibid).

4.89 Not only is there a lack of trained interpreters, but Deaf people have reported frustration at a reluctance from some services to fund them when available (Department of Health, 2005). Research for the Scottish Executive (2005) on access to services using BSL found that deaf people trying to use interpreters experience two major problems: the shortage of suitably trained interpreters and the cost of hiring them. The research also found a lack of specialist interpreters for situations of special need (for example accessing mental health services).

4.90 Research in New Zealand has shown that interpreters are used less than half the time by all mental health services, except community mental health. Psychiatrists used interpreters the least (Bridgman et al, 2000). The researchers argue that the failure to use interpreters sufficiently could account for the fact that service use is much lower than expressed need (ibid).

4.91 On a more positive note, research in New Zealand (Qld Deaf Society, 2004) recommended the development of a dictionary of Auslan signs (the equivalent of BSL) covering the mental health signs, as already exists in the UK for British Sign Language (Klein, 2000).

4.92 It is also important to note that not all deaf and hearing impaired people like to use a sign language interpreter. One survey of mental health among deaf and hearing impaired respondents found that 55% of those asked stated that they needed an interpreter, but others said that they could lip read or have a hearing aid, and others preferred not to use an interpreter for private appointments (Qld Deaf Society, 2004).

Problems Associated with Using Interpreters

4.93 Despite the obvious advantages of having an interpreter present when a deaf person is accessing mental health services, De Feu and Fergusson (2003) argue that even when an interpreter is available, mental health assessment can be extremely difficult, for several reasons:

• an interpreter who is inexperienced in such situations may inadvertently gloss over significant symptoms;
• the interviewer may ask questions that do not translate easily into BSL;
• nuances about the speed and nature of the signing, equivalent to pressure or poverty of speech, for example, will be missed;
• where the deaf person has limited or idiosyncratic signing, it is not the interpreter's role to comment on this, except to point out when communication is not effective; and
• in therapeutic interviews, the presence of an interpreter can skew the relationship with the clinician.

4.94 There is also the danger that both the patient and the clinician will assume that communication is happening effectively, when in fact the interpreter may be acting as a 'filter' to communication. Critchfield (2002) suggests that some editing is necessary, and that this will be influenced by such things as the interpreter's life experiences, educational level and attitudes.

4.95 In fact, sign language interpreters vary greatly both in skill level and in experience of working in mental health settings (ibid). For example, someone might be skilled at translating a deaf person's sign language into spoken English but may not be as competent at translating spoken language back into BSL (ibid). Scottish Executive research (2005) supports this argument: deaf people sometimes said they did not trust interpreters to translate properly.

4.96 A lack of understanding of mental health assessment, and/or a lack of knowledge of mental health symptoms in general, may mean an interpreter may not convey the patient's thoughts precisely, which may also affect the assessment (Critchfield, 2002).

4.97 Various suggestions have been made in order to resolve some of the potential problems of using a sign language interpreter. Using only a registered interpreter, and someone the patient is comfortable with, is vital. De Feu and Fergusson (2003) also state that for a Mental Health Act assessment, a social worker for the deaf should be involved, in addition to the interpreter.

4.98 Critchfield (2002) highlights the benefits of using video cameras, which can record an interpreter's actions and then be 'back-translated' to the clinician using another interpreter.

4.99 Family members are often best placed to interpret for a deaf person. However, they are less likely to be able to offer objective translation, particularly as mental health problems are often affected by family dynamics, (Critchfield, 2002). In many cases, therefore, this should be avoided.

4.100 This argument is supported by research for Greater Glasgow NHS Board ( FMR, 2002), which identified several disadvantages of using relatives to interpret, including:

• a lack of privacy;
• a lack of independence;
• doctors and relatives having discussions themselves without involving the patient; and
• patients feeling that they did not always 'get the full story'.

4.101 The use of family members as informal interpreters was also widely resented by those who responded to the Department of Health's consultation regarding mental health services for deaf people (Department of Health, 2005). The report notes that the practice of using family members, often children, as interpreters " seems both widespread and unjustifiable in health care and particularly so in mental health".

4.102 Recent Scottish Executive research (2005) stresses the lack of privacy associated with using a BSL interpreter. This research found examples of deaf people trying to get by without an interpreter in a sensitive or personal situation because they would have to use the same person in a work setting later.

4.103 Clearly, BSL training is an issue which needs to be addressed if deaf people are to gain equal access to mental health (and other) services. BSL became an official British minority language in 2003, but there is no official government training programme (Evans, 2003). The Department of Health (2002) notes that training hearing staff in BSL and Deaf awareness is very resource intensive. Interpreters fund their own training and the vast majority work on a freelance basis and/or through an agency (Department of Health, 2005). There are some accredited higher education courses (eg at Bristol, Wolverhampton and Central Lancashire Universities) in Deaf studies but not all include the skills necessary to work as an interpreter (ibid).

4.104 As Critchfield (2002) points out, BSL interpreters would ideally be trained in mental health techniques and vocabulary, and become accustomed to the full range of mental health settings, but this has additional implications in terms of training for interpreters who wish to work with mental health clients (Department of Health, 2005).

Ethical Issues

4.105 Critchfield's review also focuses on the issue of confidentiality and ethics in delivering mental health services to deaf people. For example, he points out that informed consent is as much a right for deaf people as it is for other patients, and service providers should ensure that deaf people understand the treatment they receive (eg the potential side effects of medication).

4.106 Research for Greater Glasgow NHS Board ( FMR, 2002) found that deaf people would generally prefer to have a counsellor with BSL skills than relying on an interpreter: although they knew the interpreter service was confidential, they preferred to discuss sensitive issues in a one-to-one situation (ibid).

4.107 In many areas the deaf community is very small, and people feel that this makes it difficult to maintain privacy (Critchfield, 2002; FMR, 2002).

Accessibility of Service Information

4.108 Finally, despite the fact that research has shown deaf people to have the same, if not greater, mental health needs as the hearing population, evidence suggests that deaf people are not accessing the help they need. For example, one study found that of those deaf respondents who thought they may have needed help for a mental health problem, over 46% reported that they did not seek help (Qld Deaf Society, 2004). Most people who sought help saw their GP rather than accessing a mental health service.

4.109 The researchers suggest that one reason for deaf people not accessing help for mental health problems is that they do not have access to the same information as the hearing population about what services are there to help. The same survey found that Deaf and hearing impaired people would like the same information that is available to the hearing community, but in an easier to understand format (Qld Deaf Society, 2004).

4.110 Specifically, respondents reported that they would like to have information on depression, anxiety, schizophrenia, bi-polar disorder, a list of professionals who understand deafness and information on where to go for help. Other information requested included information relating to drugs and alcohol, a list of coping strategies, resources available to assist with communication and resources for young people (Qld Deaf Society, 2004).

4.111 Work published by the Department of Health in England (2002), suggests that one group of Deaf people who are particularly disadvantaged with regard to their legal rights for information are those detained under the Mental Health Act (1983). In England, the Mental Health Act 'Code of Practice' has been revised to include the needs of Deaf people (eg including recommendations regarding the use of BSL interpreters), but there is no BSL version of leaflets concerning rights of appeal to the Mental Health Review Tribunal.

4.112 The more recent Department of Health (2005) report also notes that most general public health messages are not picked up by people with mental health problems. Making such information available for people who are Deaf will inevitably be even harder.

4.113 The literature also supports the notion of more proactive mental health promotion (rather than just treating people who have already developed a problem); for example, the Department of Health (2005) argues that deaf adults may benefit from effectively communicated information regarding post-natal depression, alcohol and drug use and coping with stress and bereavement. The Scottish Council on Deafness (undated) supports this suggestion, also noting the importance of health promotion material being developed using appropriate language and using illustration, taking into account the culture, identity and language of deaf people.

4.114 Recent HEBS research (2004) also found that there is a lack of accessible health promotion materials for deaf people. The Department of Health (2002) recommends providing mental health promotion material in BSL.

4.115 Accessibility of service information, and of services themselves, are further compounded in the Scottish context due to geography. Black (undated) notes that additional challenges exist for mental health services within the Scottish context, because of the rurality of some parts of the country: geographical isolation can make access to any service difficult.

4.116 The Department of Health (2002) states that because of the scarcity of specialist services, the nearer a deaf patient lives to a specialist centre, the more access they can have to such facilities. Personal inconvenience and travel costs are associated with their attempts to access services, and are likely to be most difficult for deafblind people.

4.117 A review by HEBS (2004) found that there were not many specific resources for deaf people living in rural areas of Scotland. The main gaps in rural areas were perceived to be a lack of funding for appropriate communication techniques and the fact that the size of the deaf population is unknown. The lack of a central register of people who are deaf was also raised as an issue in this research ( HEBS, 2004).

4.118 The Department of Health (2005) report that the development of Healthy Living Centres provide much-needed services to the Deaf community. They serve as 'one-stop-shops' and provide a range of services, including:

• general health services;
• health promotion;
• access to social care, education and benefits advice;
• a co-ordination point for interpreters;
• a base for advocacy;
• a source of Deaf awareness training;
• resources for parents;
• BSL classes; and
• video-conferencing.

4.119 HEBS (2004) research also mentions Healthy Living Centres, and supports their aims to:

• make health services more accessible to deaf and hard of hearing people by delivering deaf awareness training to health professionals; and
• to provide opportunities for deaf and hard of hearing people to take greater control over their health by providing 'deaf-friendly' information' advocacy services and increased awareness of alternative forms of health practice.

The Daniel Joseph Inquiry

4.120 The Daniel Joseph Inquiry (2000) was commissioned to examine the circumstances surrounding the treatment and care of Daniel Joseph, a profoundly deaf teenager with mental health problems who was found guilty of the manslaughter of Carla Thompson, a care worker, in England in 1998.

4.121 The findings of the Inquiry highlight gaps in service provision for the mental health needs of deaf people and supports many of the arguments made in the literature. Its findings included:

• the need to develop a national service for children and adolescents building on the services provided by SW London & St George's Mental Health NHS Trust and two other centres, and including an inpatient unit;
• the need for intensive care and forensic services for deaf people;
• the need to expand geographically the availability of supported housing for deaf mentally ill people;
• the need to fill a gap in services for medium secure and intensive care accommodation;
• the need for greater involvement of users and carers to raise the profile of the needs of deaf people and ensure a greater awareness in all agencies; and
• the need to promote and resource adequate access to interpreters for spoken and sign languages, a combination of dedicated in house staff and external providers of interpreting services probably being the most viable and cost effective model for the future.

4.122 It seems clear, therefore, that much is known about what is needed to improve mental health service provision for adults with hearing impairments. However, more action is required in implementing change.

Mental Health and Visual Impairment

4.123 Relatively little research literature exists that focuses specifically on the mental health needs of people with a visual impairment. What is available focuses mainly on the mental health needs of people who acquire a visual impairment later in life. This is important since people who are blind from birth are likely to have different mental health needs compared to those who lose their sight in later life.

4.124 Research by the mental health charity Mind (1999) indicates that people who become blind or partially sighted may have particular mental health needs as they learn to adjust to their sight problems. Sight loss can occur suddenly or over a gradual period of time, but many people experience a similar pattern of emotions, including shock, denial, distress, depression and adaptation. Du Feu and Fergusson (2003) point out that this is a similar process to bereavement.

4.125 The initial reaction to sight loss is often denial and disbelief. This may be manifested in seeking multiple medical opinions, or trying to carry out activities as normal without making adjustments for their loss of vision. Denial is often followed by distress, anxiety, and concerns about becoming dependent on others, which can in some cases lead to prolonged periods of depression (Mind, 1999). Du Feu and Fergusson (2003) note that, while there is a significant risk of depression in people who experience sight loss, this may often be unrecognised and untreated.

4.126 Depression may be compounded by feelings of isolation, and relationships with friends and family can suffer, as people start to perceive and relate to the blind person differently. Participation in social activities may become more difficult, particularly as blindness may restrict the ability to travel (ibid).

4.127 Sight loss can cause people to feel that their identity and role within society have been eroded (for example if they are used to being the wage earner in a family and have had to leave their job because of their sight problems) which can cause further anxiety and depression (ibid). People who acquire visual impairment do not only lose their sight: they also may feel that they are losing their adult status, their ability to speak for themselves, and to have a fulfilling life (Mind, 1999).

4.128 The practical difficulties associated with adapting to blindness can also cause feelings of uncertainty, and people may find it difficult to cope with relying on other people to help them with every day tasks. Practical help is often not accepted at the early stages of sight loss, as people are likely to be at the denial stage (Du Feu and Fergusson, 2003).

4.129 The ADSS emphasise the fact that it is not just practical support that visually impaired people need - community care services should also provide emotional support to enable service users to adjust to their changed circumstances. These guidelines recommend that counselling and emotional support is provided from the point at which a person is told they have a visual impairment ( ADSS, 2002). It is also not only the person with the visual impairment who requires help - their carers should also be involved in the rehabilitation and care management of visually impaired people (ibid).

4.130 After losing their sight, many people experience visual hallucinations. Although not necessarily a sign of mental distress, hallucinations can cause anxiety and may be difficult to cope with. An additional problem which can affect people with sight problems is Charles Bonnet Syndrome, which is characterised by vivid, complex hallucinations - as well as causing distress, this may interfere with practical activities.

4.131 A different set of mental health issues are likely to affect someone who is congenitally blind (ie blind from birth). As Du Feu and Fergusson (2003) point out, blind children need to learn the norms of a sighted world, and require 'social training' (for example, learning that they are expected to face people instead of turning to listen better, and to limit unacceptable movements or mannerisms such as touching people). They also become aware of their difference from sighted people and may perceive attitudes of rejection or overprotection (ibid): these emotional problems may lead to the need for mental health services either in childhood or later in life.

4.132 A congenitally blind child has greater difficulty learning rules of communication (for example through eye contact and responsive smiling) than a child who can see. Hindley and Kitson (2000) argue that this means the concept of self, and the 'I-You' distinction may develop late, to the extent that the individual may be wrongly labelled as autistic.

4.133 Research also indicates that congenitally blind adults may have depersonalised relationships; they may seem unmotivated and 'schizoid' (ibid). The authors also argue that mental health professionals are likely to underestimate mood, intelligence and personality in people with reduced expressive behaviour, as can be the case with people who are congenitally blind (ibid).

4.134 At the practical level, blindness can impact on social movement and this, in turn, can impact on mental health and well-being. Vale (2001) notes that because of problems traveling alone and the stress caused by trying to get around, 60% of blind and partially sighted people choose not to go out at all. The resulting isolation, loneliness, and depression was identified in this research as a major factor affecting health and quality of life (ibid).

4.135 Research also emphasises that people with visual impairments suffer discrimination, reflected in the fact that the unemployment rate for people with impairments is three times higher than the general population, and the main source of income for three quarters of people with impairments is state benefits ( FMR, 2002).

4.136 The link between social exclusion and mental health problems is well documented (eg Social Exclusion Unit, 2004) and it thus seems likely that people with visual impairments will experience mental health problems as a direct result of their exclusion.

4.137 Given the lack of research focusing on mental health needs of blind and visually impaired adults, it is perhaps not surprising that there is also a dearth of literature that explores service provision for this group. The review identified very little literature relating specifically to the provision of mental health services to people with a visual impairment.

4.138 Du Feu and Fergusson (2003) state that there are no specialist mental health services for people with visual impairment, and this may be because the communication barriers caused by deafness do not arise.

4.139 For the most part, they suggest, informal support is instead provided by teachers, social workers and voluntary organisations, who often fulfill a counselling role. Du Feu and Fergusson (2003) argue that more help is required from mainstream services for people providing informal support, as well planned programmes to address emotional, social and practical needs of blind people are extremely important to them and their families (ibid).

Referrals and Early Intervention

4.140 The RNIB (2003a) report 'See Change' emphasises the importance of providing support as soon as a visual impairment is diagnosed, making the person better able to cope with their changed circumstances. The report argues that on-going rehabilitation and social care reduces the likelihood of premature dependency (ibid). The Association of Directors of Social Services (2002) reinforces this point, stressing the need for services to reach adults with a newly diagnosed sight problem to inform them about the range of social care that is available to them

4.141 Despite the importance of early intervention, however, those visually impaired people who are registered blind often have to wait considerable amounts of time after diagnosis to be assessed by a social worker ( RNIB, 2003). Again, Vale (2004a) supports this claim, stating that it takes more than a year to receive an assessment and access to rehabilitation services after the detection of sight loss.

4.142 Vale (2004a) argues that one of the problems is that ophthalmologists have not always referred people for a social care assessment at the earliest opportunity, but have waited until medical intervention has been exhausted - ie people go through primary and secondary eye care services before social care is offered.

4.143 The RNIB report 'Unseen' (Vale, 2004) notes that many people who have been certified by the ophthalmologist and registered with local authorities as blind or partially sighted have not received any statutory care services or rehabilitation. This survey found that less than half of the respondents had ever received an assessment from care services and seven out of ten had never even heard of mobility training (ibid).

Mental Health and Dual Sensory Loss

4.144 The Department of Health's recent report 'Mental Health and Deafness - Towards Equity and Access' (2005) notes that very little is known about the mental health needs of this group. Indeed, this is reflected in a lack of literature that explores the mental health issues facing deafblind adults.

4.145 In some respects, deafblind people are likely to experience the same mental health problems as other deaf people because of the social exclusion and isolation they experience. Indeed, the Department of Health (2002) recognises that people with dual sensory impairment are, like single sensory impaired adults, particularly vulnerable to social exclusion.

4.146 Early work by Knutson et al (1991) using pre-implant, 9 month and 18 month psychological evaluations of adults receiving multi-channel cochlear implants for postlingual profound deafness, showed that, before the implants, participants were more depressed, suspicious, socially isolated, lonely and socially anxious than the general population. After 18 months of implant use, the researchers noted a significant reduction in depression, loneliness, social isolation a suspiciousness, which could not be explained by improved audiological performance alone.

4.147 Moller's (2003) analysis of deafblindness also asserts that the aim of all treatments of deafblind people is to reduce their isolation. He explains that recent technological developments have assisted in substantially reducing social isolation deafblind people, including software developments which have enhanced communication through Braille, speech synthesizers and Magnivision. The internet, he explains, has also provided a link between members of the deafblind community, since it can be used to communicate with the assistance of vision aids. Many networks exist, he explains, both within the European community and in other parts of the world.

4.148 People who have become deaf in adult life are likely to have different mental health needs than those who have been deaf since childhood. Such people rarely learn sign language or join the Deaf community (De Feu and Fergusson, 2003). As with acquired blindness, deafened people often experience emotions associated with bereavement (eg anger and denial), and there is a risk of social withdrawal and depression (ibid).

4.149 The literature suggests that people who are born deafblind may exhibit unusual behaviour, including self-harm and destructiveness, in an attempt to communicate (Department of Health, 2005).

4.150 This may be especially true for children who demonstrate their frustration at not being able to communicate with others through such behaviours as flapping their hands in front of their eyes, tearing or biting at their skin of clothes or head banging (Bond, 2002).

4.151 Across the age spectrum, Lewin-Leigh (2000) also point out that deafblind people face enormous difficulties in communication, mobility and in accessing information, which is likely to have an impact on their mental health.

4.152 Evidence from the literature suggests that greater awareness of deafblindness is a priority, particularly as mental health professionals are likely to have very little experience of treating people with dual sensory impairment (Sense and Deafblind UK, 2001).

4.153 For children, research by the charity Sense, (Brown, 2005) has shown that their social needs are often misunderstood by support workers and, as a consequence, "many deafblind children are living lives which are much more restricted than they need to be" (p.37). Reports from deafblind children in contact with the charity suggest that they are "missing out on opportunities to learn, to gain confidence and to join in their community life." (ibid). The one-to-one demands for support that deafblind children require can also impact on the social and emotional well-being of siblings who feel neglected, they suggest, with parents being exhausted by the demands placed upon them. Although the role of parents in the social lives of deafblind children becomes less central as they grow older, the needs of their children often mean that time is spent with adolescent deafblind people when this may, in fact, be inappropriate.

4.154 Bond (2002) suggests that the parents of deafblind children can often experience shock and guilt and, therefore, the role of professionally trained interveners is essential, working closely with parents in ensuring a quality of life for deafblind children. She suggests that, "without the right sort of help, a deafblind child may become totally isolated. Yet, with help, the child can learn to make sense of the world and enjoy being part of it" (p.95).

4.155 Basic deafblind awareness training can be delivered in about a day (ibid) and costs around £300 to provide (Department of Health, 2005). The Council for the Advancement of Communication with Deaf People ( CACDP) provides accredited courses in deaf awareness ( RNID & NDCS, 2002). The main issue here, therefore, has been perceived to be not a lack of information, but rather, a lack of uptake of training by professional staff in this area and, therefore, a greater for unpaid carers in ensuring the well-being of deafblind persons.

4.156 New developments are also underway to assess rehabilitation and quality of life for deafblind people. The rehabilitation and quality of life of deafblind persons project (Lund et al, 2005), being run in Norway, is testing the development and usefulness of a new self-assessment measure for deafblind adults which allows scoring of needs (values) in relation to satisfaction with their ability to cope with such factors as: activities of daily life; mobility and movement; being able to receive information; communication; and having a social life. In this context, satisfaction with one's own situation in relation to such tasks is considered to reflect quality of life and, therefore, provide a means by which service professionals can assess individuals' own perceptions of rehabilitation success.

4.157 Although there is limited literature that specifically addresses the mental health issues affecting deafblind adults, it appears that many of the needs identified for visually and hearing impaired people can be applied to the dual sensory loss population. However, issues are often compounded, especially in relation to communicating need, since, unlike single sensory loss individuals, deafblind adults cannot use one sense to compensate for the other. As Moller (2003) explains, "In a noisy environment when it is difficult to hear, visual cues such as body language and expressions can supplement our understanding. Likewise, when vision is poor, hearing has a major role in the localisation of sounds and the detection of danger…Since vision and hearing interact, deafblindness means that in this instance, one plus one equals three." (p.S46)

Features of Good Practice

4.158 The literature highlights the following key areas of good practice:

• access to communication aids to enable clients to communicate 1:1 with service providers, rather than a third party interpret;
• clear explanations of treatments, assessment and diagnoses direct to the client and an allowance of time for detailed communication;
• early interventions for clients with sudden onset of sensory loss to avoid development of depression; and
• use of healthy living centres and other organised social activities to provide a beneficial social model of emotional well-being and mental health care.

Summary

4.159 Research to date has focussed largely on the mental health needs of hearing impaired adults and children and there is comparatively little research into the mental health needs of visually impaired people and the deafblind. The potential for feelings of social isolation among these groups seems clear and it would appear that specific attention is needed to further explore the needs of those who are congenitally blind.

4.160 There is much research that focuses on barriers and best practice in mental health service delivery for deaf adults. However, the needs of blind adults appear to be under-researched. While it seems that many of the lessons highlighted in the deaf mental health literature may be applied to the Deafblind community, there too appears to be a lack of dedicated research in this area.

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