Community Care and Mental Health Services for Adults with Sensory Impairment in Scotland

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EXECUTIVE SUMMARY

Background

1. In response to recommendation five of the Scottish Executive Action Plan Community Care Service for People with a Sensory Impairment, and as part of the National Programme for Improving Mental Health, a Review of Community Care and Mental Health Services for Adults with Sensory Impairment in Scotland was carried out.

2. The review sought to identify and examine the community care and mental health needs of adults with a sensory impairment in Scotland. The research focussed on Deaf, deafened, blind and partially sighted as well as dual sensory impaired adults living in Scotland.

3. Although a great deal of anecdotal and unpublished research evidence already exists which suggests that sensory impaired adults experience difficulties in accessing appropriate community care and mental health services, the underlying purpose of the work was to identify and more thoroughly explicate the changes that are required in community care services for adults with a sensory impairment, so that present inconsistencies and specialist needs can be met.

Research Aims

4. The main aims of the research were to:

  • review the literature on sensory impairment needs and services, including those relating to mental health, identifying features of good practice from the literature;
  • map out the nature and availability of community care initiatives and services to support sensory impaired adults in Scotland;
  • map out the nature and availability of mental health initiatives and services to support sensory impaired adults in Scotland; and
  • explore the views and experiences of sensory impaired adults (and their carers) on the community care and mental health services they access to meet their needs.

5. This report presents the findings from the review and draws out implications for future developments to address the community care and mental health needs of sensory impaired adults in Scotland.

Research Approach

6. The research began with a comprehensive literature review, including published and unpublished research documents, both from the UK and from across Europe and the US but restricted primarily to the last five years. In some cases, due to a lack of contemporary literature in the field, documents were sourced from earlier years. This was especially true for literature on deafblindness.

7. To date, it seems that much of the work in the area of sensory loss and community care needs has been carried out by charitable organisations working with sensory impaired clients and is, therefore, not easily identifiable in mainstream literature pools. In contrast, much of the work that has explored the mental health issues affecting sensory impaired adults is hidden within medical and academic publications and is, in some cases, not readily accessible. With this in mind, a variety of approaches were used to identify existing literature including internet searches and use of specialist book shops, libraries and resource centres. Advice was also sought from high profile individuals working with the respective communities in relation to known literature which may inform the review.

8. The literature review focussed primarily on the care needs and services for sensory impaired adults, including those relating to mental health, and sought to identify the main findings from national and international literature as well as identifying gaps in information and features of good practice from existing research evidence.

9. In addition to providing an evidence base on which to develop the research, the literature review acted as a start point in the identification of services working with or for sensory impaired adults in Scotland. This fed into the second stage of the work which was a formal mapping exercise.

10. The mapping exercise involved identification of services across Scotland that offered dedicated services to sensory impaired adults, in either a community care, mental health or other support role. The initial identification of services was carried out using a snowballing technique with representatives within key organisations helping to identify partner organisations and secondary services of which they were aware. A database of services was compiled with postcode data being used to map service provision across the country cartographically.

11. For fullness of coverage, the database included generic as well as specialist social work and community care service providers (generic mental health services were also included), services based outside of Scotland that offer only visiting or part-time coverage in Scotland and national organisations which provide mostly signposting services to other providers but offer no direct services themselves.

12. All services included in the services database were invited to respond to a questionnaire survey. An eight page questionnaire was developed with the specific aim of gathering detailed information about service provision, training of staff, cross sector working, funding and monitoring and evaluation processes. The initial survey distribution was undertaken in April 2005 with a follow up exercise carried out in May 2005.

13. In order to more fully explore statutory service provision, telephone interviews were carried out with representatives from local authorities and with representatives from NHS Boards. It proved difficult to make contact with dedicated support workers in the statutory sector and this meant that there were inevitable gaps in the data that were gathered.

14. In depth telephone interviews were also carried out with some of the core agencies identified from the mapping exercise.

15. Consultation with service providers specifically sought to examine the extent to which generic mental health services can effectively meet the needs of people with mental health problems and sensory impairment and to identify, from a service provider perspective, any gaps in service provision. Additionally, it sought to identify methods Local Authorities are using to evaluate the services offered to sensory impaired adults and to establish what information is currently used by health and social care planners to inform the development of services for people with a sensory impairment.

16. Finally, a service user consultation was undertaken with over 100 service users and carers using a combination of face-to-face interviews, focus groups, telephone interviews, online focus groups and, in some cases, by way of written contribution. All adults were recruited either directly through service providers with whom they were currently engaged or via newsletters distributed by national membership organisations.

17. Consultation with service users explored current service usage, identified gaps (from a users and carers perspective) in service provision relating to unmet need and elicited views on the ways in which the services that they accessed promoted positive mental health or detracted from it.

Estimating Demand for Services

18. One of the clearest messages to emerge from the literature review was the current absence of routinely collected, reliable data relating to the numbers of Deaf, deafened, blind, partially sighted or dual sensory impaired adults in Scotland. This appears to be particularly acute for those with hearing impairments or deafblindness.

19. Issues around identifying adults with dual sensory loss, and monitoring their level of need, is compounded by current misunderstanding of the nature of deafblindness and the lack of a consistently applied definition of the term.

20. There was a clear message from the research literature, and from those who participated in the research, that current estimates of sensory loss in Scotland undoubtedly under-represent the true number of people experiencing sensory loss. This is largely due to a lack of routine identification and reporting or registration of instances of sensory loss to a single authorised agency or body.

Identifying Community Care Needs

21. The literature shows that the community care needs of sensory impaired adults are as complex as those of the non-impaired population but are compounded by issues of accessibility and poor understanding of communication, rehabilitation and mobility needs in the general population.

22. Recognising that there is significant variation in the level of needs expressed by sensory impaired adults, the literature would suggest that the fundamental needs of sensory impaired adults are those linked to independent living and being able to navigate a social world designed for hearing and sighted people. Everyday tasks such as domestic work, personal care and life skills (for example, cooking, cleaning and shopping) often necessitate specialist equipment and this, in turn, creates a need for training and support in using what is available.

23. For those with sight loss (as a single or dual impairment) mobility also presents one of the biggest challenges to accessing mainstream community care. Again, training appears to be limited for both safe access and movement outside the home and safe navigation within the home.

24. One of the biggest barriers faced by sensory impaired adults is communicating with others. Whilst the research suggests that many mainstream services nowadays demonstrate a commitment to providing access to communication support (in particular induction loops and information in alternative formats) consultees suggested that this is rarely demonstrated in the ready availability of information and equipment in many mainstream service areas.

25. The lack of general rehabilitation and mobility training, and the communication barriers presented across social arenas, combine to make access to benefits and specialist services a particular challenge. There seems to be an emphasis on impaired persons to proactively seek the support that they need, sometimes with a lack of awareness of the challenges that this poses. For some, this creates a lack of willingness to seek support or help and for others, it can mean only ad hoc access to services that result from word of mouth or from the efforts of family and carers in trying to initiate support.

26. For all of the communities consulted, help with accessing education, employment and other social arenas including leisure pursuits (for example, social clubs and organised activities) would be a big step towards achieving equality of opportunity and would negate many of the issues that contribute to mental ill-health and feelings of social exclusion.

Identifying Mental Health Needs

27. Despite a mass of research focussing on the mental health correlates of hearing loss, and a sizeable research base on the mental health issues affecting visually impaired adults, there is a distinctive dearth of literature focussing specifically on the mental issues affecting deafblind adults. It cannot be assumed that the issues affecting this group are a simple combination of the issues affecting single impairment communities.

28. From the literature that is available, it seems that a range of mental health challenges may be experienced by the sensory impaired community including anxiety, depression and social withdrawal, with distress and anxiety being experienced in particular at the periods of key transition, for example, from school to work, (where social support systems change) and at the point of onset of impairment where loss is not congenital. Specifically, there appears to be a need for early interventions for clients with sudden onset of sensory loss to avoid development of depression.

29. As with wider social challenges regarding communication, the literature shows a distinct lack of awareness of the communication needs of sensory impaired adults when accessing mental health services. Many of the challenges faced by sensory impaired adults in the mental health arena appear to mirror those regarding access to medical services per se and this suggests a need to explore mental health service provision within a wider health service agenda.

30. In terms of good practice, the literature highlights that services are well received in cases where there is ready access to human aids to communication to enable clients to communicate, one-to-one, in confidence with service providers, rather than a third party interpreter. This does not negate the need for more support in ensuring that people can access services in the first instance, especially blind and deafblind adults, for whom mobility and lack of mobility support act as an additional barrier to reaching services. Essentially, confidential, personal services must be accessible.

31. Services are also well received where clear explanations of treatments, assessment and diagnoses are provided direct to the client with an allowance of time for detailed communication. The use of social models of health, as an alternative to, or alongside medical interventions, also appear to be beneficial to emotional-wellbeing and mental health care .

Current Service Provision

32. Anecdotal evidence was cited by many consultees regarding inconsistency in both community care and mental health service provision across Scotland. This was confirmed by the formal mapping exercise which revealed that services were especially poor for those living in isolated or rural communities.

33. There appears to be distinct differences in local authority care provision with some local authorities operating specialist sensory impairment teams, others contracting in support from specialist agencies to facilitate work with sensory impaired adults along the mainstream routes of referral, and those who provide no notable targeted service.

34. There is a particular dearth of specialist mental health services with only one dedicated mental health service for Deaf adults operating in Scotland, its base being in England. Concerns were raised about the lack of future funding to support the continuity of this service as it appears to offer an example of good practice which might be replicated in Scotland in the future.

35. Importantly, the difficulties experienced in identifying and contacting specialist staff working in local authorities and NHS Boards meant that the mapping exercise was not as comprehensive as it might have been. However, the challenge of identifying nominated persons within some local authorities and NHS Boards, who were au fait with policies, practices and specialist services available to support sensory impaired adults, may indicate that there is a need for more accessible information about referral pathways and access to statutory support. Examples of good practice were found in some local authorities and these may act as a template for change in this regard.

36. Data suggest that much work is undertaken by a small number of organisations and that many of these work in the voluntary sector. Joint working seems to be apparent between voluntary sector sensory impairment workers and mental health workers but there is perhaps less sharing of expertise cross-sector.

37. For all client groups, there is a lack of trained staff to work in improving access to services via rehabilitation, mobility or communication training. For Deaf adults, this is especially problematic with regards to low numbers of trained BSL users. For blind and partially sighted adults, rehabilitation workers are in short supply. For deafblind adults, human aids to communication are too few and far between. Across all communities, lack of access to a dedicated social worker appears to be problematic and this was cited by many of the service users and carers as being one of the greatest gaps in current service provision.

Unmet Need

38. The research suggests that much needs to be achieved across the service providing community, as well as at the societal level, in improving the experience of sensory impaired adults in Scotland. This includes a need for greater sensory awareness, a greater appreciation of the role that carers play in providing informal support, improved facilities to accommodate diversity of communication and mobility and improved access to social arenas per se to prevent secondary isolation of those with hearing or visual loss.

39. It seems that there is a need for greater recognition of the social ownership and responsibility for demonstrating, through action, a commitment to equality of opportunity.

Good Practice

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.

41. 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 interpreter; 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 well-being and mental health care.

42. 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.

43. 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.

Challenges Ahead

44. The research suggests there is a 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. The research concludes that 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.

45. In addition to generic problems in identification, early referral from primary care providers to wider support systems and the need for more public awareness of communication and access needs of sensory impaired adults, a number of specific priorities for action can be identified.

46. For Deaf, deafened and hearing impaired adults, the main service 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.

47. For blind, partially sighted adults and those with other visual impairments, there appears 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 between statutory service providers and clients to ensure appropriate use and maintenance of equipment and to provide valuable social interaction.

48. Additionally, in order to provide adequate services for deafblind adults and others with dual sensory loss, there appears 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. This includes the use of standardised definitions of the term and greater awareness of gradients of hearing and visual impairment that exist within the scope of deafblindness; and
  • a need for 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.

50. Finally, 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.

Concluding Comments

51. The work was carried out between January and September 2005. Given the variability in service provision over time, the research therefore provides only a snapshot of the current service provision and unmet needs of sensory impaired adults and should be treated as a work in transition. Clearly, ongoing monitoring of service provision in relation to need is required in order to assess progress in the area but, at the fundamental level, the research suggests the need for change with careful re-consideration of the way in which services should be developed to ensure equality of experience across Scotland's communities.

52. 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 suggests 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 .