CHAPTER 8 NEED FOR CHANGE AND THE CHALLENGES AHEAD
Meeting the Research Objectives
8.1 A number of specific research objectives required to be addressed as part of the Review. There was variation in the extent to which each of these was met by the research.
Review the literature on care needs and services for sensory impaired adults
8.2 The findings from the literature review presented in Chapter 3 describe in detail the evidence of care needs among the three distinct sensory impaired groups. These needs have been summarised in the categories of rehabilitation, mobility, communication, benefits and services, accessibility and social inclusion. The chapter includes discussion on service provision.
Identify features of good practice from the literature
8.3 Features of good practice are distinctly identified from the literature at the end of Chapter 3 with reference to community care and at the end of Chapter 4 with reference to mental health. Chapter 7 pulls together some of the findings relating to good practice.
Identify and classify the full range of organisations in Scotland offering services to sensory impaired adults
8.4 The maps and tables presented in Chapter 5 show the 409 services identified in the mapping exercise. These have been classified by client group and service sector, and are illustrated for each of the 32 local authorities in Scotland. The database of organisations identified will be provided to the Scottish Executive.
Identify staff who are specially trained to meet the needs of the relevant groups/ Explore the whether there are mainstream and generic staff who consistently work with people with sensory impairment and have not had specialist training
8.5 Chapter 5 shows, from the services who took part in the survey, the proportion of services which employ paid or volunteer staff with specific training or skills for working with sensory impaired people. Relatively few generic mental health and community care service providers did so. Evidence from service users presented in Chapters 6 and 7 shows that sensory impaired people are frequently accessing, or trying to access services, where they are dealing with staff who do not appear to have any training or awareness regarding their impairment.
Examine the extent to which generic mental health services can effectively meet the needs of people with mental health problems and sensory impairment
8.6 Chapter 4 includes a discussion on the benefits and disadvantages of generic versus specialist mental health services for deaf people. It also includes a review of gaps/limitations in generic service provision including lack of deaf awareness, lack of trained staff, communication barriers, limitations in the use of interpreters, and barriers to access to information about services. This chapter also includes a review of the needs of visually impaired and dual sensory impaired people which is more limited in scope.
8.7 Chapter 5 describes current practice in mental health care, with very limited specialist provision for deaf and deafblind people, and no specialist provision for blind people. Therefore, it appears that most sensory impaired people will rely on generic services for their mental health care.
8.8 Chapter 7 discusses service users' views on generic mental health and counselling services. All sensory impaired groups included those with mental health needs, most often counselling. There appeared to be a large degree of unmet need in terms of services with appropriately aware staff.
Identify links to mainstream services (via SSA process, CHPs)
8.9 Interviews with service planners elicited little information with regard to this research objective. Consultees seemed to be largely unaware of the Single Shared Assessment and its implications.
8.10 Chapter 5 discussed the variability in joint working across different Local Authority areas. While in some areas, the voluntary sector appears to be working effectively and collaboratively with local authorities, in others there appear to be little in the way of joint working. Around three quarters of the voluntary sector services surveyed received some funding from the statutory sector.
8.11 Chapter 6 also includes evidence from the service provider and user consultation on the need for improved cross-sector working.
Identify from a service provider perspective, any gaps in service provision
8.12 Gaps in service provision can be identified geographically from the mapping exercise (Chapter 5). Chapters 6 and 7 identify a number of gaps in provision from the perspective of both service providers and service users. Key gaps specifically raised be service providers were a lack of qualified BSL interpreters, rehabilitation workers and guide communicators.
Identify methods Local Authorities are using to evaluate the services offered to sensory impaired adults/Establish what information is currently used by health and social care planners to inform the development of services for people with a sensory impairment
8.13 Approaches to evaluation and development were varied and somewhat ad hoc, just as the delivery of services was (see Chapter 5). In cases where service delivery tended to be contracted to the voluntary sector, the voluntary service's own evaluations were relied upon.
Identify examples of good or innovative practice in the services offered to sensory impaired adults, including those with mental health problems
8.14 Literature evidence on good practice are summarised at the end of Chapters 3 and 4. Good practice identified from service provider and user consultation is also identified in Chapters 6 and 7.
Explore the views and experiences of sensory impaired adults (and their carers where appropriate) on the services they access to meet their requirements
8.15 Chapters 6 and 7 give a comprehensive account of service users' and carers' views on services.
Identify, from a service user perspective, gaps in service provision relating to unmet need
8.16 Again, unmet need is covered in Chapter 6 and 7. Service users' key unmet needs included lack of sensory aware service providers, social work contact, access to information, communication and social interaction.
Explore the views and experiences of sensory impaired adults on the ways in which the services they access promote their positive mental health or detract from it
8.17 Chapter 7 discussed mental health needs in a general sense including the role of services (particularly social groups etc) in promoting mental health. Chapter 6 highlights areas such as joint working and social work where lack of a co-ordinated approach or irregular contact can lead to feelings of isolation. A key point is the need for early intervention at the point of registration or identification of sensory impairment
Challenges
8.18 The research identified a number of key challenges facing the sensory impaired community and their carers in Scotland. These include:
Under-recognition of Sensory Impairment
8.19 There is a widespread recognition that official figures for blind and partially sighted adults are likely to significantly underestimate the number of people who experience visual impairment across Scotland.
8.20 Importantly, there is no official record of the number of Deaf, deafened or hard of hearing population nor of the number of dual sensory impaired adults in Scotland. This inevitably impacts on service provision since there is little way of measuring supply relative to demand.
8.21 In some cases, under-recognition may fuel perceptions of sensory impairment as a low incidence problem which hinders the development, commitment to and uptake of innovative and appropriate services.
Communication, Rehabilitation and Mobility Support
8.22 One of the most significant gaps identified from the research is a lack of trained staff to work with clients in need of communication, rehabilitation and mobility support. There are significant gaps in the numbers of qualified BSL interpreters (especially those trained in finger spelling), rehabilitation workers and guide/communicators to facilitate independent living for sensory impaired adults.
8.23 Despite a lack of staff, all those consulted shared a strong view that services should not compensate for this by employing untrained workers.
8.24 The main issues affecting availability of qualified support are the cost of training, time taken for qualification and a lack of volunteers and of suitably qualified trainers.
8.25 For the three client groups, there was some variation in the precise nature of support required. However, it was recognised that an increased capacity in some areas of support would have benefits for more than one of the client groups, releasing time for those trained with specialised skills to work with the most appropriate client group.
Communication with Service Providers
8.26 Barriers to communication between service providers and service users are a shared experience across the impairment communities. This is most noticeable for hearing impaired and dual sensory impaired. Communication is an issue both in terms of accessing information about services, and in accessing services themselves. Solutions to the communication barrier are required in all types of service, and include the provision of information in alternative formats, greater use of communication technology, and increased use of different communication methods.
Attitudes and Awareness
8.27 In addition to a lack of support in accessing services, a number of observations were made regarding the delivery of services when used. These are mostly related to the way in which services are currently perceived to be delivered and a lack of training in sensory awareness.
Geographical Inconsistency in Community Care
8.28 There is considerable geographical variation in availability of community care services, including statutory service provision. Regrettably, this is not always proportionate to the level of identified need in respective areas. Inconsistency can also be seen in the nature and quality or service delivery. Again, examples of good practice exist and these could be used as a springboard for future development.
Lack of Specialist Mental Health Services
8.29 There is a notable lack of specialised mental health services for adults in Scotland. This compounds the challenge of accessing mainstream services where training and sensory awareness is limited and can result in negative experience of public service contact among the sensory impaired community.
8.30 Examples of good practice exist for Deaf, deafened and hard of hearing adults but lack of resources means that these are not readily available or accessible.
8.31 There is no evidence of dedicated mental health services for blind, partially sighted or deafblind adults. Although communication may not preclude use of mainstream mental health services among visually impaired adults, there appears to be a need for greater awareness of the devastation caused by sudden sight loss and of the isolation experienced by other blind adults due to restricted freedom of movement and lack of information in alternative formats.
8.32 For deafblind adults, there is a real need for specialist care and an appreciation, more generally, of the uniquely disabling affects of deafblindness. It seems clear that access to mental health services for this group presents the greatest challenge, especially where sensory loss is severe.
8.33 In all cases, social models of health may prove more effective than existing medical solutions.
Social Inclusion and Accessibility
8.34 Despite a lack of dedicated mental health services for adults with a sensory impairment, the research suggests that the greatest factor impacting on emotional and mental-well-being is the limited opportunity for social interaction. Limited access to social activities/community involvement were stated more often than needs relating to severe or enduring mental ill-health.
8.35 Sensory impaired adults are currently relying on informal channels to learn about services and this means that many who need services are not receiving the help and support that they require.
8.36 There appears to be a need for early intervention for people at the time that they register their impairment, or become known to health professionals and requiring sensory support. There should be clear cut, systematically applied and routine systems for offering follow up communication, mobility or equipment training and counselling where needed. At this early stage, people also need to be made more aware of services in place to assist with social coping, including community care services. Primary health care and social work care providers clearly play a crucial role here.
Gaps in Evidence Base
8.37 In addition to gaps in services, the research would suggest that there us a need for more routine information and data gathering in a number of respects. These include:
- a significant, lack of reliable or routinely collected intelligence regarding numbers of Deaf, deafened and hard of hearing adults as well as dual sensory impaired adults in Scotland. Also, although statistics on registrations of blind and partially sighted people exist, they are recognised to very significantly under-estimate the true prevalence of visual impairment. All service providers face an impossible task in developing strategies for carrying out large-scale remedial work unless more reliable indicators of need are identified and put in place;
- assessing the needs of sensory impaired people at key period of transition, especially for young people making the transition from formal education into adulthood; and
- developing a greater understanding of the role of carers in the realm of care provision. Anecdotal evidence would suggest that much care and support work is undertaken by family and friends of sensory impaired adults. This is often used a let out for care providers who should, instead, be developing appropriate strategies and mechanisms for providing quality care directly to those who need, it.
Features of Good Practice
8.38 Examples of good practice were reported during the consultation and are documented here to provide a start point for potential future developments which may help to address the gaps and needs identified above.
8.39 In addressing issues around measurement of need and identifying prevalence of sensory loss in Scotland, it seems clear that some local authorities appear to be significantly more advanced in pro-actively identifying members of the community with sensory impairments and working with them to meet their needs. The Identification Project provides a model that, although resource intensive, allows vulnerable adults to be put in touch with services which might otherwise have been inaccessible.
8.40 In the community care context, the research identified a number of features of good practice. These included: the right of clients to be well informed and have equality of access to up to date information about services, delivered in client friendly formats; the need to maintain dignity of clients through offering a non-discriminatory approach; the rights of clients to have independence in making decisions about things that affect them directly; routine access to support equipment and training in using that equipment; and support at the time that impairments are disclosed or identified by the care providing community.
8.41 The research shows that social integration is important for all sensory impaired groups and initiative in place to facilitate social interaction opportunities for sensory impaired adults were praised. In particular, initiatives such as Healthy Living Centres appear to provide a valuable social approach to achieving emotional well-being. Other organised social events such as Blind Bowlers clubs and Deafblind Holidays, organised by voluntary agencies, also appear to offer invaluable recreational opportunities for both sensory impaired adults and their carers.
8.42 The use of technological advances to further enable greater social interaction between members of the sensory impaired communities and the hearing/sighted world is also significant. The use of the internet for deafblind adults to communicate more readily with others appears in the literature as a specific example of good practice.
8.43 Libraries and specialist resource centres (both statutory and voluntary run) were also cited as vital in helping to achieve independence for sensory impaired adults, especially the visually impaired. Along with talking book services, talking newspapers and radio services, these offer an example of how socially integration can be achieved at low cost for the visually impaired community, offering accessible community based educational and recreational opportunities.
8.44 In terms of mental health services, the core features of good practice identified from the research included: access to aids to communication to enable clients to communicate one-to-one with service providers, rather than a third part interpreters; clear explanations of treatment, assessments 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 social isolation; and use of healthy living centres and other organised social activities to provide a beneficial social model of emotional wellbeing and mental health care.
8.45 The one cited mental health service for Deaf adults that visits Scotland was considered to provide a model of good practice which might be adopted more widely and on a more permanent basis in Scotland.
8.46 At the cross-cutting level, feedback from consultees suggests that continuity of care provision is valued. This may be access to dedicated medical and community care staff with whom sensory impaired adults can develop trusting relationships based on previous interactions. Having to build multiple confidences with numerous care givers can be off-putting and may, indeed, act as a barrier for clients to achieve maximum benefit from the service that are available.
8.47 Clearly, there is a need for regular monitoring and evaluation of both community care and mental health services to ensure that they are appropriately tailored to meet the needs of sensory impaired clients. Again, examples of good practice exist in both the voluntary and statutory sector with client representation on service planning groups being an essential part of effective service development.
Recommendations
8.48 It is recommended that a crucial, early task that must be undertaken is the identification of a nominated agency or organisation to take forward more systematic measurement of sensory impairment prevalence in Scotland. Only when more reliable data regarding the prevalence and domicile of sensory impaired adults is collected can services be developed and tailored which most effectively meet the identified needs. Clearly this is a logistically difficult task and one which requires resource inputs at an early stage.
8.49 At the cross-cutting level, it appears that there is a need for greater sharing of skills between statutory and voluntary sector workers. There is inconsistency across the country in terms of referral processes and an awareness of alterative providers in the local area who can offer joined up support.
8.50 For Deaf, deafened and hearing impaired adults, the main priorities appear to be:
- a need to increase the numbers of qualified BSL interpreters per se to ensure easier access to support when needed;
- BSL awareness training and sign language training for GPs, nurses and counsellors;
- statutory services to provide interpreters for GP and hospital appointments and counselling sessions; and
- awareness raising among the Deaf, deafened and hard of hearing communities about the mental health system and the services available to them.
8.51 For blind, partially sighted adults and those with other visual impairments, the main priorities appear to be:
- a need for more rehabilitation workers and better training of social work staff to support blind adults;
- consistency in training standards for all rehabilitation workers and, importantly, rigorous ongoing training and assessment of workers regardless of the sector in which they work; and
- more regular contact with statutory service providers to ensure appropriate use and maintenance of equipment and to provide valuable social interaction.
8.52 Finally, for deafblind adults and others with dual sensory loss, the main issues appear to be:
- a lack of reliable statistics regarding prevalence of dual sensory loss, compounded by the lack of an agreed definition of deafblindness and lack of commonly used formal assessments for identifying dual sensory loss;
- a need for greater awareness raising in the professional and public domain regarding deafblindness; and
- increased numbers, training and funding for guide communicators. Essentially, it appears that further work is required to explore the potential for developing a centrally funded and nationally representative service of this kind. This would help bring Scotland in line with European counterparts.
8.53 A national guide communicator service, which appears to be so much in demand, clearly requires to be needs assessed as there are varying degrees of need among the dual sensory impaired community. Assessments must be sympathetic to the challenges of adults with dual sensory impairment and must take account of social and emotional well-being rather than daily functioning alone.
8.54 Such a service must also operate an early intervention approach wherein dual sensory loss can be addressed at an early stage and methods of communication learned before adults reach the isolation of advanced deafblindness. A system based on individual need rather than home postcode is a must. This should be accompanied by a review of current recording and registration systems for dual sensory impaired adults as it is not possible to develop a service based on need until a rigorous and reliable means of calculating needs is established.
Concluding Comments
8.55 Additional funding to support training and availability of qualified staff would resolve many of the community care and mental health needs of the sensory impaired community. Evidence suggests that there are models of good practice of service delivery and training standards that could be used as a model for wider roll-out.
8.56 Efforts are required at both the local and national level to encourage greater public and professional awareness of the challenges faced by the sensory impaired population and evidence suggest that there are already a number of organisations and individuals who are committed to taking this forward in Scotland. Momentum is needed to build on the good work already being carried out in some areas of the country to further improve service availability and support for sensory impaired adults in Scotland.