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CHAPTER 7 KEY AREAS OF NEED
Key Findings
Consultation with service users suggests that there is a common lack of availability of trained communication, rehabilitation and support staff/resources.
A lack of qualified British Sign Language interpreters was identified as a key area of need among the deaf and deafblind groups. This problem is compounded by lack of funding available to train staff in service providing organisations and other logistical issues surrounding delivery and access to appropriate training. A lack of human aids to communication is coupled with some feelings of frustration at the lack of access to appropriate hearing support equipment.
Similar issues are faced by visually impaired adults. In particular, at the national level, a strong view was expressed that there are currently too few rehabilitation workers. Access to affordable and easy to use vision aids also presents a problem to this group. There is evidence to suggest that some adults are functioning with out-dated equipment and, in some cases, equipment is not being used as there is a lack of ongoing support for recipients to engender confidence in using visual devices. Travel (for both social and health purposes) for this group was also highlighted as being problematic with a lack of adequate transport/concessions.
The single biggest need expressed by deafblind and other dual sensory loss clients was the need for a guide/communicator service. Again, this was seen as vital to enable greater engagement in both social and health activities and feelings of social isolation were often raised by members of this community as being of their greatest frustrations.
Across all client groups, there was consensus that current mental health service provision was inadequate. Many expressed that problems in accessing such services only reflected bigger issues faced in accessing medical services per se ( i.e. lack of communication support and poor sensory awareness among medical professionals). Almost all those consulted agreed that there was a need for more service developments to meet the community care and mental health needs of sensory impaired adults.
Introduction
7.1 Having explored the cross-cutting themes to emerge from the work, this chapter highlights some of the core needs, experiences and views expressed regarding services used, and gaps in service identified from speaking with service providers, users and their carers in each of the three main sensory impaired groups.
7.2 Data is presented for each of the three main client groups, and mental health issues are addressed as a collective area of need towards the end of the chapter. This chapter also brings together findings relating to good practice.
7.3 Again, the data presented here reflects the views expressed directly by those consulted.
Key Issues for Adults with a Hearing Impairment
7.4 The main area of need expressed by Deaf, deafened and hard of hearing adults was communication with the hearing community. A general lack of awareness and understanding of the native langue of the Deaf community, and other non-spoken languages appears to make communication with hearing adults difficult across all sectors and is not unique to the community care or mental health setting.
Sign Language Interpreters
7.5 A lack of qualified British Sign Language interpreters was identified as a key area of need among the deaf and deafblind groups.
7.6 Sign Language Interpreters provide the main means of communicating with the hearing world and presents perhaps the greatest need of Deaf adults whose first language is BSL. Importantly, as the recently published Investigation of Access to Public Services in Scotland using British Sign Language (Scottish Executive, 2005) outlines, BSL for this community is a language and not a service. It is presented here purely as a means of highlighting the main frustrations experienced by the Deaf community in accessing services since few hearing people can use or communicate in this language.
7.7 For Deaf and deafened groups, sign language interpreters provide an invaluable means of communicating with hearing, English speakers. The Scottish Association of Sign Language Interpreters ( SASLI) Register of British Sign Language Interpreters in Scotland currently lists only 49 interpreters across the country, in addition to 10 trainees on the Scottish Register. This number was considered by service providers and users to be wholly inadequate alongside the estimated 57,000 severely or profoundly deaf adults across Scotland.
7.8 The lack of trained BSL users can cause resentment among this community as communication is a right that should be assumed:
"There is only one interpreter in this area who is employed by the Council but the interpreter travels to other places and does not interpret for local BSL users all the time. What's the point of me paying council tax?"
7.9 The gap is widely recognised by those working directly with and for Deaf adults who also expressed concerns about the numbers of untrained BSL interpreters working with often vulnerable Deaf clients. SASLI operates stringent quality assessment and requires registered staff to undertake continued professional development and this, it was suggested, provides a standard that should be adopted more widely:
"The public services providing interpreters should be using interpreters that are appropriately registered, as they have to adhere to a code of conduct and complaints procedure. They are required to go through enhanced disclosure on a three yearly basis and from the 1 st April next year, they will be required to undertake continued professional development. It is very important for people providing that service in areas which could be of the most intimate and personal nature that they [ BSL users] are comfortable."
7.10 Deaf BSL users were keen to point out that existing qualified BSL interpreters were, for the most part, good and that they recognised the push among national organisations to try and recruit and train more staff. That said, however, a gap still exists that needs to be filled.
7.11 The main barriers to increasing the capacity of qualified BSL interpreters appears to be a lack of funding and the time taken to become fully qualified. Most people find themselves having to fund basic level training in BSL before they can be accepted onto recognised SASLI courses which qualifies them for registration. Once securing a place on the course, students continue to be self-funded.
7.12 There was also a lack of recognised courses in BSL making it difficult to attract students of BSL. Service providers stressed the need for accredited, funded undergraduate level courses in skills such as BSL in order to attract younger interpreters who may be available to work in the future.
7.13 The Glasgow City Council Sign Language Interpreter Service was praised for being accessible (it allows online booking of interpreters) and may provide a model of best practice that could be adopted elsewhere.
7.14 Finally, those in the Deaf community acknowledged that BSL was not the only means of communication for which interpreters are currently lacking. In particular, Deaf adults using finger spelling felt that even some qualified interpreters found it difficult to work with them as they preferred to watch lip patterns. Also, a lack of interpreters in some isolated and rural locations meant that interpreters were sometimes provided from other regional areas where the signs are different and difficult for clients to understand.
Equipment
7.15 Equipment to support hard of hearing people was a second area of need that was discussed. For the most part, comments related to the time spent waiting for equipment.
"I wanted a new hearing aid as the old one was over 20 years old. I wanted a digital one but have to get a referral from the doctor. There is a two month waiting lists for a digital hearing aid but this isn't bad".
"Most people wait over a year for a digital hearing aid and, meanwhile, their quality of life goes down."
7.16 Getting appropriate equipment required clients to be pro-active and to push for information and access to what is available:
"People are disregarded unless they really push. With so many people with hearing loss being older adults, a lot of them are not comfortable with being self-assertive like this."
7.17 There was a general view that information about how to access equipment and to maintain equipment was lacking and that this presented major challenges to older deafened people in particular.
Social Inclusion
7.18 A final need of deaf and hearing impaired adults, similar to that experienced by visually and dual sensory impaired adults, was social interaction and general access to support, information, advocacy and advice. Again, a lack of interpreters makes this difficult and many BSL users felt that this precluded them from accessing mainstream social and community services. Instead, many relied heavily on friends and family for all social support.
Key Issues for Adults with a Visual Impairment
7.19 The main needs identified among this group related to lack of rehabilitation workers, inadequate information regarding accessibility and support for specialist equipment and problems associated with restricted mobility and access to current affairs information.
Rehabilitation Workers
7.20 For blind adults, rehabilitation workers provide the main means of training and support in mobility, daily living skills, communication and access to information, advice and social support. However, at the national level, a strong view was expressed that there are currently too few rehabilitation workers.
7.21 In Scotland, there are currently estimated to be 44 full time equivalent qualified rehabilitation workers (Guide Dogs, unpublished research). The majority of training for staff is carried out at the Guide Dogs for the Blind Association ( GDBA) School of Vision and Rehabilitation Studies (Scotland), based in Glasgow.
7.22 Guide Dogs currently provide much of the rehabilitation support that is offered across Scotland alongside six other charities in Scotland. These seven charities are commissioned by local authorities and, collectively, cover 12 local authorities. Whilst some local authorities do have in-house capacity, service provision in some local authorities was considered by some consultees to be patchy. Indeed, it was suggested that five out of the 32 local authorities currently do not offer any form of qualified rehabilitation support:
"There's no distinct and regular pattern of services across Scotland".
7.23 There were some concerns that many of the duties undertaken by qualified rehabilitation staff are currently being performed by untrained social work staff and other volunteers in some local authority areas. There was also evidence to suggest that assessment criteria was variable across Scotland.
7.24 The ADSS (2002) guidance suggests that there are a number of topics which need to be included in a basic visual impairment awareness training course for anyone whose work brings them into contact with visually impaired people. These include:
- challenging the stereotypes and myths about blindness;
- common diseases of the eye and their effect on sight;
- recognising the onset of sight problems;
- the emotional impact of sight loss;
- ways of communicating with people who have a visual impairment;
- producing information in accessible formats;
- guiding skills;
- equipment, including low vision aids;
- the benefits of registration;
- local and national resources for people with a visual impairment;
- awareness of good and bad environmental design;
- access issues;
- social attitudes and barriers;
- the Disability Discrimination Act, 1995;
- deafblindness; and
- personal practices.
7.25 The research suggests that these standards are currently not adhered to and that many untrained staff are working with visually impaired adults when they are insufficiently equipped. This is problematic for both the worker and the client. As one qualified rehabilitation worker commented:
"Our ethos is to train people for independence. Some social workers would say that is their aim too but often they're maximizing independence by putting in care for things they [clients] can't manage themselves - whereas our role is very much going in and assisting people just to do things for themselves. There's a subtle difference in perspective there that I think needs to be recognised".
7.26 In addition to a lack of trained rehabilitation workers, feelings were expressed that rehabilitation workers that are currently in post are undervalued and overworked.
7.27 Concerns were also expressed that, if a client needs input for mobility this can be time consuming and long term- each client requires three-four visits a week and this can mean that only a limited number of clients can be assisted at any given time.
7.28 Again, one of the largest barriers to increasing the number of rehabilitation workers is the lack of funding for training and lack of accredited trainers. Training schools often fail to attract high numbers of candidates as they require to be self-funded. Similarly, some rehabilitation workers consulted stressed that they would be able to provide training themselves, and may be best placed to do this work, but heavy workloads often meant that those doing the training were those who were least likely to have been carrying recent work at the grass root level.
Travel and Transport
7.29 For this group, lack of appropriate signage and accessible public transport and the inability to travel by personal transport was seen to lead to feelings of loss of independence. This represented a second main area of need:
"Giving up the car was the hardest thing I've ever had to do in my life."
"I was really quite depressed at the time. I felt my life was falling apart. At one stage I was virtually suicidal. Having to give up the car - that was the biggy."
7.30 Generally, blind and visually impaired adults praised the provision of travel passes but, for the most part, expressed wish that these could be used more flexibly:
"The blind persons pass (for buses) is fantastic. I have a taxi card too, but I can only use it twice a week, and only in my local area. It would be much better if I could use it more".
7.31 In contrast, many people were dissatisfied with rail travel provisions. Many trains were still not seen to be easy to navigate. Despite legislative provision for free train travel for visually impaired people, many felt that there was still inconsistency in the provision of free rail travel for companions. In some areas, this was also provided free of charge, whilst other areas offered a small subsidy or charged the full fare. This was seen to hinder use of train passes as many visually impaired people lacked the confidence to use trains alone, especially for longer journeys.
7.32 Most respondents reported that they were comfortable travelling to places that they had previously visited with carers or mobility worker. However, travelling to new places, and using public transport alone presents significant barriers to visually impaired adults, especially those using canes. This is another reason for needing more rehabilitation support.
Equipment
7.33 Although the research suggests that visual disability equipment is routinely provided by local authority providers and other organisations, for some, the costs of getting appropriate equipment means that many are still not accessing the equipment that best meets their needs.
"Some of us are not very technically minded, and are on a low income. You don't want to waste your money. It's not that you don't want to save up and buy them [visual aid equipment], but it's got to be useful. So you need someone to talk it over with".
7.34 Access to basic equipment often incurs costs to clients and there was feeling that equipment does not currently attract sufficient subsidy, resulting in too high a cost for users.
7.35 Many of the consultees were aware of equipment that would better suit their needs but felt that this was unaffordable. New and innovative solutions take too long to become widely available and affordable. There is perhaps a need for equipment providers to be more proactive in researching new developments and ensuring that equipment in kept up-to-date.
7.36 A view was expressed that statutory service providers are not always aware of latest developments and what is best for clients. Advice on availability of equipment and suitability would assist some clients in purchasing things that are more appropriate: "You don't want to spend a fortune on things that are no use to you".
7.37 This was especially true for blind adults who are not registered and so are not accessing information from social workers.
"If you need them [social work] then you need to get in touch with them. But there are a lot of elderly people in the region with visual impairments who will not ask. You tend to think that if there was something that would benefit me then I would be told about it by the Social Work department. But they don't do that and if you don't know that you have to get in touch with them, then you are sitting in ignorance thinking that, 'If they haven't been in touch it's because there's nothing more they can do for me or nothing else they can give me.'"
7.38 The need for choice in meeting individual client preferences was also raised. For some blind clients, guide dogs had been provided against clients wishes. Conversely, one client had expressed a desire for a guide dogs but this had been denied as her partner was also visually impaired. Use of guide dogs, she was told, required users to walk alone and she would not, therefore, be able to walk with her husband and use the dog at the same time.
7.39 Several respondents commented on problems with a lack of support for maintaining equipment when issued. This includes, for example, replacing liquid level indicators on a regular basis and replacing batteries for specialist bulbs and reading aids. These can be expensive and difficult to source for adults whose mobility, communication and funds are restricted.
7.40 Some clients reported that, when equipment became old or worn, they did not attempt to replace it as they did not want to be perceived as asking for handouts. In these cases, many users were using alternatives which can be dangerous. For example, one client reported that the liquid level indicators with which she had been provided has become unusable. Instead, she used her finger to gauge liquid level when making hot drinks. A lack of routine home assessment, and clients' reluctance to ask for further assistance, means that such behaviours are often not detected. These issues are especially important for sensory impaired adults living alone.
"When I was registered partially sighted, they came and told me everything I could have. Then, when I was registered blind, they came again and listed all the other things that I could get. Now that's all changed - the things I got in 1993 people don't get now. You used to get all the aids that you needed, but I don't think you get very much now, or anything in the way of equipment. They will give you up to £50 towards a piece of equipment you are needing but then a lot of people don't have that."
7.41 Again, although low vision aid is routinely provided across the country, service staff raised concerns that there is currently a lack of awareness in the community on how equipment should be used. In addition to clients often being given equipment without training on its appropriate use, there was a general concern that many non-specialised service providers offering community care lack the skills to work with adults using low vision aids in order to help them to maximise their experience in engaging with community services.
7.42 Much specialist training (for example, eccentric viewing, in which people with central vision loss learn to look slightly away from objects in order to view them peripherally with another area of their visual field), is offered by independent consultants rather than being available routinely. Much specialist information is provided at high cost due to a lack of awareness among statutory providers and this prevents many people from accessing information and skills that might significantly improve their well-being and independence. To compensate, many voluntary and charitable organisations offer training for clients, and for other staff, to their own expense. Examples of this raised in the consultation included a blind volunteer who taught Braille on behalf of the RNIB.
7.43 A further issue associated with training is the need for systematic retraining of use in equipment for clients. Many blind and visually impaired clients who used long-canes had been trained at the time that they were issued with the equipment but this training had long since been forgotten. Although clients are able to use their equipment, new developments and ideas were not being passed on and there was no routine re-assessment of clients to ensure that existing equipment and training was still meeting their needs. In the context of low vision assessments, one respondent commented:
"It's pretty widely recognised that when those low vision aids go out [from the clinic], there's not a great deal of back-up in the community. It'll be assumed at the assessment that the person will be able to use that magnifier. A lot go back to people's houses and end up in drawers. One service I would like to see provided is a proper low vision training service as a follow up to the initial assessment. They do a bit of 'training on the job' but it's not nearly the same as someone going in on a regular basis to help people learn to use aids".
7.44 A group of adults affected by age-related macular disease ( AMD) outlined their core problems as being unable to read prices in shops, even with magnifiers, preparing food, finding objects in supermarkets, checking expiry dates on foods, maintaining personal hygiene (for example, cutting finger nails and putting on make up), pouring drinks (especially hot drinks due to potential for burning), and a host of other spatial problems including picking up small objects and carrying out household chores.
7.45 Essentially, although low vision aids were available to (and used by) many of the consultees, the effectiveness of these aids still limits daily functioning. This is compounded, for some, by the cost of low vision aids and other equipment that would be more appropriate that the often out dated or 'best fitting' equipment provided by statutory providers.
Communication
7.46 Much of the training undertaken by voluntary organisation was considered to be vital for clients and a basic right that clients might reasonably expect:
"Not having Braille would be like telling a sighted person that they couldn't pick up a pen when they wanted to write something down".
7.47 A lack of understanding about individual's right to confidentiality was shared across the client groups consulted.
7.48 A number of blind and visually impaired consultees explained that, for blind people living alone, there is an urgent need for personal reader services to help read incoming post and other important correspondence. This can cause some distress, and junk mail can add to the problem:
"It can be quite frightening getting piles of letters and you can't tell if it's yours or what it means".
7.49 This often goes unnoticed and people lose track of important things such as finances and health appointments etc. Many clients live alone and this makes it a challenge with neighbours and other visitors often providing the only available help in this regard.
"I just depend on my wife. Any reading or writing, then she does all that. She writes all my letters for me."
"If something comes through the post for you, like a hospital appointment, it doesn't matter if you want to be independent, you are going to have to ask somebody else to read it, which is forcing you to depend on others".
7.50 This raises serious issues relating to confidentiality and potential for exploitation and risk of disclosing personal information. For people living with carers, this situation is also not ideal and it also means that confidentiality is often not afforded. It can not be assumed that all communication impaired adults wish to share their experiences with co-habitants and other family/friends or carers.
Access to Information
7.51 A final core need identified by the blind and visually impaired community was access to news and current affairs - something that is difficult to achieve when reading is not an option.
7.52 At the specific level, there was a perception that the teaching of Braille is no longer widespread and this can lead to problems in later life when young people disengage with mainstream education and enter unsupported adult world.
Key Issues for Adults with a Dual Sensory Loss
7.53 As with previous research, the single biggest need expressed by deafblind and other dual sensory loss clients was the need for a guide/communicator service.
"I think if you can get a guide communicator service, that covers most of the things you want. Not only do they act as your guide, but they'll read your mail for you, take you to the bank and help you read your statements and all that. I think if you've got a good service in place, that covers a lot of things you may require."
7.54 Guide/communicators were seen as a necessary lifeline for all dual sensory impaired adults consulted. Although most clients strive for independence, the inevitability of a guide/communicator facility of some sort was recognised:
"For most people, they want some sort of independence. But, in order to have that independence they have to get help to get it - so a guide communicator is very impartial, they don't tell you what to do or make you do something, it's up to you."
7.55 In Scotland, a core guide/communicator service is currently offered by Deafblind Scotland, from which statutory organisations and individuals can purchase resources when required. This service is the only one of its kind and Deafblind Scotland are recognised as the leaders in training for guide/communicators. Deafblind Scotland currently employs 40 guide communicators working on a Scotland wide basis. In 2004/05, this enabled them to provide 41,000 hours of guide/communication contact.
7.56 Despite this, there is clearly a need for more trained guide/communicator staff as this was raised by all those consulted who worked with, cared for or were experiencing dual sensory loss.
7.57 Few of those consulted had more than four hours weekly contact with a guide/communicator and this allocation was used, for the most part, to attend hospital, GP or other health appointments or to carry out basic domestic visits including shopping and payment of bills. This means that most adults in receipt of the service have no time for social interaction assisted by a guide/communicator
7.58 The lack of guide communicators is compounded by the high incidence of dual sensory impaired adults living alone. Deafblind Scotland figures suggest that approximately 40% of their membership live alone and 22% do not use speech to communicate. Thirty-one percent have additional disabilities (Deafblind Scotland, 2005).
7.59 All dual sensory impaired adults who took part in the consultation praised the work of Deafblind Scotland. There was a shared view that the service provided is reliable and that guide communicators are friendly and flexible to clients needs. Despite this, the level of contact that can currently be provided, and geographical inconsistency brought about by lack of funding and volunteers in different geographical bases was a cause of frustration among service providers and users alike.
7.60 A number of consultees explained that there have been significant improvements in the skills of guide/communicator services in recent years with many guide communicators now possessing multiple interpreting skills including the Deafblind manual, hands on signing, BSL, Makaton, moon and Braille interchangeably. The value of multiple-language skills for deafblind adults lies in the ability of guide communicators to liaise between clients of different needs. This facilitates social contact with other adults experiencing dual sensory loss of a different kind.
7.61 Again, however, service providers in this domain shared sentiments regarding the dangers of untrained persons offering communication and rehabilitation support to sensory impaired clients.
7.62 Deafblind Scotland guide/communicators also work to a code of practice, receive regular in-service training, support and supervision. The service is also routinely evaluated. All guide/communicators are BSL users, normally holding CACDP Stage 2 BSL and CACDP Communication and Guiding Skills with Deafblind People Level 3. This was seen by all those consulted to be the standard to which others should aspire.
Social Interaction
7.63 Like adults with single sensory loss, social interaction was also stressed by many as one of their main needs. Additionally, among deafblind clients, a need was expressed for variation in activity for older and younger adults. With few dedicated deafblind services, and only limited social activities being organised with limited funds available, this can mean that single events are organised for attendance by adults of mixed age groups. At both ends of the age spectrum, some clients expressed a wish for more age-appropriate activities:
"I went to a deafblind club one time, but it didn't do anything for me. It was full of older folk! It was nice to meet people there but I want a bit more action! I never had anyone to tittle-tattle with".
7.64 As with the lack of BSL interpreters and Rehabilitation workers for Deaf and Blind adults respectively, the lack of guide/communicators means that many adults fail to access social and community services for recreational purposes as often as they would like:
"The problem is, I'm only offered a guide communicator if I'm going to the doctor or to the hospital, but I'm not allowed to use a guide communicator for any social interest of activity. I got a letter last year from my Health Board, stating that they would only provide a small amount of funding, for medical appointments, but the funding would not cover anything else. For example, if I wanted to go and do something, I wouldn't have a service that would be funded."
7.65 Given the importance of social interaction in maintaining social, emotional and mental wellbeing, it would seem that current provision urgently needs to be extended in order to progress the mental health agenda for dual sensory loss clients.
Mental Heath, Counselling and Health Service Provision
7.66 The mapping exercise alone revealed a lack of specialised mental health services for adults with a sensory impairment. This was confirmed in the consultation exercise and clients across the three main user groups shared negative experiences of accessing both mental health and general health services.
7.67 Ethical and time constraints meant that it was not possible to consult with users directly via statutory mental health service providers. However, many of those consulted were able to reflect on their unmet needs and their previous experiences of accessing mental heath and other medical services.
Counselling
7.68 Many people consulted felt that access to psychiatrists and other acute mental health professionals was not required. Instead, the greatest need was for counsellors. Despite this, a lack of sensory aware counsellors per se was expressed across all client groups:
"You need someone you can talk to when you're at your lowest and you're saying, "I don't know where to go".
Deaf, Deafened and Hard of Hearing Adults
7.69 There was a shared view among service providers for Deaf adults that mental health services for people with a sensory impairment in Scotland are inadequate both in terms of the provision of specialists with awareness of the needs of and implications of deafness, and in the provision of communication support available.
7.70 Among the Deaf consultees, most were unaware of counselling provision and said that they use GPs for counselling if needed. Even then, some consulted were not aware that they could also book extra time with a GP and had previously tried to explain their needs in a standard ten minutes appointment. It was suggested that development or outreach workers were needed to raise awareness of the counselling provision/additional facilities that are currently available (even though these are limited).
7.71 Those who were already aware of counselling services said that did not ask for referrals because they assumed that they would have to pay for the counselling themselves:
"Most GPs and Health Boards are not keen to pay for my services".
7.72 Many BSL users were uncomfortable with the idea of having to involve a third party (ie an interpreter):
"If you're Deaf and you want some sort of counselling, you have to have a channel between the two of you, and it's not always the same as having one to one, when you're having to use some kind of communication channel like an interpreter or a guide communicator"
7.73 Their experiences of booking interpreters were also negative as, even when available, many interpreters are known to the Deaf community and they had concerns about confidentiality. Even when Deaf adults were aware of the availability of Deaf Counsellors (two in Scotland), many said that they would not use this resource as they feared that they may "blab" to the Deaf community:
"I would use a Deaf Counsellor but the problem is, I know them all. I would rather I didn't know them on a personal basis."
"I don't use interpreters because I prefer to keep things confidential."
"Maybe the GP would talk to the interpreter about me."
7.74 Again, there were concerns about having to use interpreters who were insufficiently qualified for emergency appointments (for example, trained to only BSL level 1 or 2) as it may affect the quality of interpreting about important issues surrounding health and wellbeing.
7.75 The lack of appropriately trained BSL interpreters was compounded by the refusal of some health professionals to engage with interpreters. Responses from some consultees suggested that some counsellors had previously refused to involve interpreters in counselling sessions because of lack of eye contact with the client and breach of client confidentiality.
7.76 As with community care, interviewees representing Deaf Community interests stressed that communication support should not be limited to Deaf BSL users but also to those with acquired hearing loss but whose first language is English (for example, finger spelling). From deaf and dual sensory impaired adults, there were many reports of using paper and pencil to write and draw pictures or using miming to try and communicate with GPS and other health providers. This is essential for emergency appointments where interpreters and guides/communicators cannot be booked but is a less than ideal solution.
7.77 In sum, for hearing impaired adults, access to counselling was considered to be very difficult unless the counsellor was deaf aware. Even then, there is perhaps an assumption that deaf awareness and training to work with deaf or hard of hearing adults equates simply to use of BSL or access to interpreters. Some consultees were keen to point out that a large proportion of the deaf and hard of hearing community do not use BSL and are, therefore, still disadvantaged even when working with counsellors who have a degree of deaf awareness.
7.78 The John Denmark Unit was cited by several consultees as an example of best practice. Views of service providers and users is that this service is invaluable. However, it is under-resourced and its limited presence in Scotland makes accessing the facility a major challenge.
7.79 Similarly, it was noted that the Scottish Council on Deafness are currently creating a list of counsellors to give to Deaf people. It was anticipated that this list would contain details of both Deaf and hearing counsellors. However, there were still some concerns that clients would need to fund counselling themselves if it required use of BSL.
7.80 In sum, the communication needs of Deaf, deafened and hard of hearing adults can be highly complex, dependent on background, level of deafness, comprehension, English language attainment and their nature of their mental-health needs. Culture, language, mental illness and communication skills are all part of the depth of knowledge required by health professionals when working with this client group.
Blind and Partially Sighted Adults
7.81 For the most part, counselling for blind and partially sighted adults was seen as vital at the time that sensory loss was first identified (for those with acquired sensory loss). Simply knowing more about what to expect was considered to have therapeutic value:
"I would like to find out how you come to terms with all this. I've been a full year now registered blind. I don't know if it' going to get worse - I know it's not going to get better but how bad does it go?"
7.82 The need for counsellor appears to be particularly acute for those who have rapid sensory loss in adulthood. As two adults, both who had lost their sight through accidents reported:
"I honestly felt that my life was coming to an end. I went to my GP and he asked what hobbies I had. There was nothing - all I was doing was sitting trapped in my own four walls. I felt there was nothing I could do. There is nobody to tell you what you can do. There is no-one to say, "Well, you can still do this, or, with a bit of help, you can do that", you're just left to get on with it."
"Where somebody's gone blind overnight, there's trauma. There's all sorts of problems raising in their heads, especially if the person is a family provider. There's a whole spectrum of problems there and all the emotional stuff on top"
7.83 At the general level, consultees in this group reported few other difficulties related specifically to mental health and sensory loss, however, more general concerns aware raised about accessing general health services and social well-being per se. These are discussed below.
Adults with a Dual Sensory Loss
7.84 One deafblind adult interviewed as part of the research suggested that "finding a service that caters for deafblind people who have mental health difficulties would be like finding a needle in a haystack".
7.85 The consultation suggests that the mental health needs of deafblind adults vary enormously depending on the nature of sensory loss and the age of onset. Unlike adults in single impairment communities, those who loose hearing or vision later in life, having adjusted to one sensory loss, often reported feeling that it was the "end of the road" in terms of independence:
"I spent all my youth developing coping strategies to deal with the deafness. You always felt you were sitting on a fence, because you weren't accepted by the Deaf community, because you weren't deaf enough, because you communicated with the hearing world, and the hearing world, unless you told them, maybe thought you were slightly slow or slightly simple. So you felt you were struggling all the time to appear to be normal or able bodied. You dealt with those aspects, and that was a struggle and then, in my case, when I was 19, 20, when I found out, to be dual sensory impaired! To have one thing's bad enough, but to have the double whammy of blindness as well. If you think what's the worst case scenario for someone who is deaf, that for them is to go blind, because they get all their information through their eyes, and they use their eyes much more efficiently than somebody who is able bodied because they use their hearing and sight. Someone who's deaf has to use their eyes all the time, they have to get information from the environment, from people's body language, from people's lips… and if your eyesight starts to go, where are you going to get that information from? And then you think of Braille, and information going through the hands, and you think well how am I going to learn that, you know, what's the point, almost".
7.86 Again, service providers stressed the need to be "on the periphery of people's lives, stepping in and out as needed" rather than being too intrusive.
Other Health Services
7.87 Despite a focus on mental health services, many consultees spontaneously recounted experiences of accessing other statutory health services and used these as a basis for explaining a general perceived lack of sensory awareness among health care professionals.
7.88 Concerns regarding time taken to book an interpreter for consultations with other health professionals suggest that this would prove similarly problematic for counselling and mental health services:
"You must book two weeks in advance. If I need a doctor's appointment now, I cannot get an interpreter so have to book an appointment for in 2 weeks."
"When I go to the doctor, I always write things down because usually I get appointments at the last minute and each lasts 5-10 minutes. To book a BSL interpreter requires three weeks notice."
7.89 Some respondents explained that the time taken between appointments with GPs and specialists (due to a need to book interpreting and guide/communicator services) resulted in them presenting at accident and emergency services purely as a means of being seen. The time taken between appointments was described by some consultees as leaving them feeling 'alone' and 'lacking confidence' as concerns manifest between appointments and are left to escalate when they might otherwise be easily resolved.
7.90 Importantly, the lack of available communicators and trained staff in mainstream mental health services appears to mirror a much wider problem with regards to medical service provision per se. Evidence was provided from many consultees of the difficulties of accessing general medical services ( GPs, hospitals and dentists) for routine treatments:
"Hospitals are not good- they just don't have the awareness. They'll say to you, 'just follow the signs' and expect you to find where you are going. My aunt, who is blind, was recently in hospital and they left her a menu list!"
"They don't have time - they're so busy. They've only got so many minutes for each client, but it's dreadful. You go out of the clinic feeling that you don't know what's happening."
"If I fax to the doctor and book a time to go there, I sometimes have to fax the Deafblind Scotland office and ask for a guide communicator to go to the doctor because the doctor can't sign and I don't know what they're saying. They should really learn to sign but I just ask for a guide communicator to go with me if I need to get more pills and eye drops and things."
7.91 Such findings support the NHS consultation findings which suggest that there is a lack of implementation in medical settings of the Scottish Office Department of Health NHS Management Executive Letter (1998) 4, which makes clear the responsibility of service providers to ensure availability of guide communicators for deafblind people attending hospitals or GP surgeries.
7.92 It is also important to note that, whilst limited, services are available for adults requiring help to travel to hospital appointments etc. What is not available is statutory provision of support/communicator services for those requiring to attend hospital to visit family and others (ie where they are not the primary patient). Given the prevalence of sensory impairment among older categories, this seems to be an obvious gap in ensuring emotional wellbeing for couples separated by illness (where the elderly partners provide in-house care). Parents with sick children etc. also suffer. Although not the core focus of this work, it is a need that has been identified and warrants further exploration.
7.93 There were also shared feelings across the client groups of lack of awareness resulting in professional staffing talking about them rather than to them:
"Even the consultants at audiology don't know how to talk to you, and people go away with a lack of knowledge. The nurses spoke over my head".
7.94 One Deaf BSL user gave an example of staff speaking to her 5 year old son instead of directly to her.
7.95 Other examples of poor sensory awareness included the following accounts:
"When one of my children was in hospital, the hospital had a textphone, but it had been there for ten years and had sat under a desk. No one knew how to use it. It's the same with loop systems. Services provide them because they 're required to, but they don't train staff how to actually use them".
"Reception staff at GPs always call out my name even when my file has 'Deaf' on the front of it!"
"I was referred to a meditation course by my GP that plays music - I can't hear it!"
7.96 Clients described the lack of direct communication with professional staff as difficult, frustrating and degrading.
7.97 In general, there would appear to be a need for greater application of social models of support and mental health promotion among medical professionals:
"If you go to the doctor about depression, you just get pills. A person's quality of life also needs to be adjusted or amended."
7.98 Many clients reported receiving injections, medication and even surgical operations with no explanation or offer of support and this proved both frightening and off-putting for clients in terms of accessing seeking help in the future. There was a feeling that, perhaps, in some situations, medication was used a simple solution for working with clients where communication barriers would make social solutions more challenging. This 'quick fix' was seen as unacceptable and added to clients feelings of unfair treatment.
The Role of Social Interaction
7.99 One of the main areas of unmet need identified was the lack of opportunities for many sensory impaired adults to engage in social interaction. Indeed, many felt that their sensory loss resulted in feelings of isolation:
"Hearing loss means social exclusion to a very large degree." [Deaf]
"For people who have lost their sight, it is a whole different psychology to people who are congenitally blind. Not everyone can read Braille, or can read or write. If I could read the things I wanted to it would help. It just adds to your sense of isolation" [Blind]
"Visual impairment can lead to depression and isolation and it cuts you off from so many things, and it tends to happen more as you get older, when perhaps you have less family around you." [Visually Impaired]
"This is really fairly new to me, the sight problem. I've felt this loneliness - it's a very lonely thing. I don't go out as much as I used to because I can't see properly ad things don't look right. I keep thinking I'm going to bump into people and I just want to get home to the safety of my own place."
7.100 Feelings of complete dependence and a lack of motivation to learn new skills (especially among older adults) were all cited as reasons for feeling depressed, isolated and, in some cases, suicidal. A clear lack of identity with any community appears to compound the sense of loneliness and social exclusion among this group and, therefore, compound the need for emotional support.
7.101 For all groups, social interaction was seen as a significant factor in preventing mental ill-health:
"Its not just about practical things like shopping but also about social interaction."
"Often, a blind person has nothing else to think about. When I was working [as a social worker for the blind] , often clients would ask to see me and when you got there you realised that they just wanted someone to talk to. They knew me and it helped just to have some contact with someone they trusted".
7.102 Membership of organisations such as RNIB, Deaf Connections, Deafblind Scotland and other local groups were seen to be an essential part of emotional well-being. Such services enable access to others who share similar experiences:
"It's good that we can meet with other people so that you realise you are not alone. We can discuss techniques we've developed for coping with our visual impairments."
"It really helps to socialise with other visually impaired people. You are on the same level".
"The social side of things is essential for your well-being, your self-esteem, your confidence and it keeps you healthy."
"It's good to meet others who suffer from the same thing."
7.103 Suggestions for increased service provision in this areas included telephone help-lines, befriending schemes and client forums:
"The loneliness aspect of being visually impaired could be addressed by some sort of clients' forum, because there's nothing better than hearing from other people, you know, what has helped them. OK, so it might not work for you, but there might be just something in what they say that might kind of trigger a thought."
7.104 Finally, during the consultation, a number of adults commented that there were a number of "small things" that would improve their mental health and emotional well-being that did not require significant new developments - simply more availability of communication and guide/mobility support. These included going to the hairdressers, going dancing, having a massage or going shopping. These were all social arenas currently not accessed simply due a lack of funded personal mobility or communication support which was, instead, restricted to formal appointments only. The cost of support for engaging in such activities simply is outwith the means of many adults with a sensory loss.
Summary
7.105 A lack of fully trained interpreters, rehabilitation workers and guide communicators presents barriers across the board, including access to emergency services, social and recreation support and access for counselling and emotional wellbeing.
7.106 Regarding mental health services, many people suggested that there may be a lack of services due to a lack of demand. Indeed, many service providers (especially those in the statutory sector) used the lack of demand as a justification for currently low levels of service provision. The main issue, as expressed by service users and some service providers alike, is one of equality of opportunity and the option to access services if needed:
"There's definitely a need for a counselling service. And let's put it this way, it should be there anyway. If people want it, they'll use it and if they don't need it, they won't use, it's as simple as that. But it should be something that should be an option."
7.107 For people accessing all other services, a need for providers to recognise the independence of clients is paramount to encouraging engagement with services. This includes cognisance of their right to confidentiality and anonymity. This problem is particularly acute for hearing and dual sensory impaired clients .
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