The Scottish Government

« Previous | Contents | Next »

Listen

Chapter Three: Awareness of and access to services

Introduction

3.1. Two key objectives of the literature review were to explore awareness of services and options and the influences on access to services for people with multiple and/or complex needs. This chapter presents some key issues identified from the literature in relation to the constraints on awareness and the barriers to accessing a range of services including social care, health, housing, legal services, transport and so on. While the focus is mainly on the literature that specifically refers to multiple and/or complex needs, it is recognised that many of the same issues apply to all service users.

Constraints on awareness

3.2. The first hurdle for anyone accessing services of whatever kind is to gain information about what services are available, what these can offer, and how to access them. The wider literature on health and social care is replete with reference to problems of inaccessible information, poorly advertised services, and low awareness among potential service users of what services can offer. There is also now a considerable literature identifying aspects of best practice in relation to improving awareness (Communities Scotland: HomePoint, 2000, 2004).

3.3. The literature on multiple and complex needs identifies various constraints that reflect individual characteristics and dispositional factors, situational as well as organisational factors, such as the complexity of service systems and inappropriateness of information and advice provision to diverse populations.

Low awareness of services

3.4. A lack of awareness of what services are available is often compounded by difficulties experienced in obtaining appropriate and accessible information about existing services. For instance the Scottish Executive (2006b) in its review of Social Work notes that difficulties in getting reliable information about such services have been a consistent message from research. A survey by Mori in 2005 quoted in this review showed that most people have limited knowledge of what Social Work services can offer and this can result in either "unrealistic expectations" or in people not accessing services that they need.

3.5. In respect of independent advice, the Department for Constitutional Affairs (2006) argue that while 'vulnerable people' are least likely to resolve problems and disputes, they are often unaware of where to go for advice or seek it from the wrong provider. This they say is the result of poor publicity and signposting by and of services, and because services tend to help people deal with only one problem out of the range they may have.

3.6. Research has found that service users with substance misuse problems often lack awareness of the range of services available (both specialist and mainstream) and feel that they do not receive sufficient information about services ( SACAM/ DM, 2003). The problem is further magnified for those from black and minority ethnic ( BME) communities as shown in a recent study of Glasgow's youth addiction services (Ridley et al, 2005).

3.7. Stalker et al (2006) found recurring themes in relation to black and ethnic minority ( BME) disabled people included a lack of awareness of services, as well as poor information provision and cultural insensitivity within services. Limited research has been conducted about BME disabled people in Scotland. Further, those from BME communities often have little or no knowledge of the range of options such as direct payments as an alternative to providing community care services, with a resultant low uptake (Riddell et al, 2005). A comparative study of older people from majority and minority ethnic groups (Bowes and Macdonald, 2000) highlighted a lack of knowledge of services, especially services available to offer help and support at home, and particularly among Asian older people.

3.8. Although there has been limited research on gypsy travellers, studies suggest there is similarly low cultural awareness on the part of agencies and low awareness of service entitlements amongst travellers (Morris and Clements, 2001; Scottish Parliament Information Centre, 2000).

3.9. Keene (2001) found that some service users with complex needs did indeed lack knowledge of services, but for others this was not the case. Many were aware of the range of services, some of which they may have used over time, even if such services did not meet their needs.

Lost in translation

3.10. Finding out what services are available can be compounded by a range of factors such as low literacy levels, language other than English as a first language, cultural factors and distance from information centres, and a lack of willingness to recognise or address problems (Terrence Higgins Trust, 2001; Ross et al, 2004; Social Exclusion Unit, 2005a; Hodes, 2005).

"People with basic skills and ESOL¹needs don't respond too well to leaflets, adverts and other written information." (Social Exclusion Unit, 2005a, p54)

3.11. When English is not the first language, many people find accessing information about services even more problematic. As a result, many migrants and asylum seekers are unaware of their entitlement to health and social care services or of how to access them (Terence Higgins Trust, 2001).

3.12. A review was conducted of users' experiences and views on interpretation and translation services in Scotland for the Scottish Consumer Council. This highlighted the under-use of interpreting and translation services and low levels of knowledge about how these services could be accessed and funded amongst public services. Moreover, it noted a low awareness of these services amongst black and minority ethnic groups (Nicholson and Wallace 2005).

"A lack of publicity by public sector organisations on the availability of translation and interpretation services contributed to confusion over how to access such help and who would pay for it".

3.13. Additionally, this review identified a lack of consistent quality standards in interpreting and translation services and highlighted various shortfalls, including:

• Sometimes the actual meaning is lost in translation, although the document may read well. Where word for word translations are used this does not recognise the different meanings that a word may have in particular languages
• Some translations use a lot of unnecessary wording or they are presented poorly compared with original documents
• Translators who have lived in the UK for a long time may not be familiar with current institutions or everyday jargon in their home countries, indicating that recent émigrés and specialists (in areas such as health or court work) may make for the best translators and interpreters (Nicholson and Wallace, 2005).

3.14. While cross-cultural issues of interpretation and translation may be considerable for those whose first language is not English, information about services may get lost for other groups too. Parallels can be drawn in regard to the need to promote awareness of and access to services for other groups with multiple and complex needs, such as people with dementia, people with sensory impairments, and people with multiple and profound intellectual disabilities.

Fragmented advice

3.15. Information and advice can be fragmented, uncoordinated and problematic to access (Scottish Executive 2004c). Key problems identified by the Department for Constitutional Affairs ( DCA) in its review of the Legal Aid system ( DCA, 2005) were that current advice services tend to treat problems in isolation; advice is hard to access (particularly for vulnerable people); and referral mechanisms are often inefficient. Additionally, government websites are frequently hard to reach and difficult to understand. The DCA drew attention to the fact that unresolved disputes have "serious knock on costs to public services" such as Health, Police and the Department of Work and Pensions ( DWP) which should be acknowledged.

Navigating complex service systems

3.16. Many people, including those with multiple and/or complex needs and carers, find navigating through service systems complex and frustrating. As a result they are unaware of what services there are and how these could help them. Not knowing what services were available was identified by Hardy et al (1999) as a key factor affecting informed choice for older people with complex needs, and Jarvis et al (2005) in a study on disabled children's access to housing comment:

"A major problem for many families is finding their way through to the kinds of help that may be available." (p27)

3.17. A key point stressed in the literature, is the need to recognize that current and potential users of care services have a diverse range of information needs. Additionally, guides for commissioners and other good practice documents in recent years demonstrate the importance Scottish Ministers attach to the provision of independent advocacy to enable vulnerable people to have access to representation of their needs, views and wishes (Scottish Executive, 2001a).

Barriers to access

3.18. Lack of awareness or knowledge of services is only one factor limiting people's access to services and support. The United Nations identify the lack of access to services as a factor that influences 'absolute poverty', defining this as:

"A condition characterised by severe deprivation of basic human needs, including food, safe drinking water, sanitation facilities, health, shelter, education and information. It depends not only on income but also on access to services". (United Nations, 1995, p57 quoted in Gordon et al, 2000, p9)

3.19. While poverty generates support needs, the literature overall illustrates that a range of dispositional, situational and organisational factors may interconnect and overlap in affecting people's access to services.

Factors influencing access

3.20. People engage with services for different reasons and in its report "Improving Services, Improving Lives", the Social Exclusion Unit (2005a, p36) identifies 3 arrangements which influence access for people with multiple and complex needs. These are:

• 'Discretionary' services, where engagement is voluntary, and these include preventative health and support services and adult education
• 'Essential' services needed by people, such as social housing when homeless, or residential or nursing care to meet changing care needs, or hospital services after an accident, and job centres when seeking work
• Compulsory services, such as mental health services under compulsory orders, Criminal Justice Services and Social Work Services, such as when children are 'looked after' or subject to protection orders.

3.21. While these different routes and forms of access were clearly evident in the literature covered, no distinctive implications emerged in this review regarding the experience of people with multiple and complex needs in respect of these 3 forms of engagement. This might be worth considering however as a theme for subsequent research.

3.22. However some notable patterns did emerge in respect of the constraints on access at a more general level. Key situational constraints relate to the dimensions of poverty, inequalities and location and how these impact on access opportunities. Firstly, poorer households and communities who are multiply disadvantaged are most significantly dependant on access to the full range of public services and welfare benefits to improve opportunities and sustainable solutions (Hirsch, 2004; Somerville and Sprigings, 2005). They therefore bear the brunt of the consequences of complex, deficient and inappropriate services.

3.23. Inequalities stemming from social class, geography, gender and ethnicity have been found to be endemic within health services (Acheson, 1998). Emerson (2004) drew attention to the impact of poverty on the health and well-being of people with intellectual disabilities and their families, and particularly to the negative impact this has on accessing effective health services. Variations in accessing health services generally are acknowledged in a Department of Health White Paper (2006a), especially in relation to responding to the needs of people from BME communities and in areas of deprivation. People in rural areas face access problems due to the location of many services, inadequate transport systems, confidentiality issues and a general lack of specialist services in rural areas (Pugh, 2003).

3.24. As indicated above, other barriers may relate to ethnicity, gender and disability. In terms of gender, the majority of lone parents are female, who like low-income households generally, are most significantly dependent on benefits and on access to social housing. Homeless and vulnerable female lone parents are increasingly younger and many have experienced domestic violence (Smith et al, 2001; Smith, 2004). Recent research highlights that women who have experienced violence/ abuse often have multiple needs.

3.25. An increasing body of literature emphasises the particular difficulties experienced by those from black and minority ethnic ( BME) communities, whether or not they have multiple and complex needs. Lack of knowledge and a view that what is on offer does not suit people's own perception of their needs were major factors limiting access to services for older people from BME communities (Bowes and Macdonald, 2000). Additionally, BME groups face barriers to accessing housing and community care services, as well as education and work opportunities (Harrison, 2004; Milner, 2005).

3.26. One Somali woman with a disability commented on her own situation:

"I do not ask for any services, I would like to, but I don't know what to request or how to initiate a request. I do not know who the service providing agencies are. I'm disabled and sitting at home" (Roberts & Harris 2002, p3).

3.27. As most workers in this field have little knowledge of community care assessments, they do not always advocate or signpost services that well. George (2000c) suggested that some refugees and asylum seekers will "feel uneasy" about contacting services.

3.28. Disabled people from refugee and asylum seeking communities do not access community care or housing services they need for a variety of reasons (Roberts and Harris, 2002). A key problem is communication: for instance, those who were deaf did not know British Sign Language prior to arrival and there are few training courses for people learning BSL through other sign languages. Support for people experiencing language difficulties as result of brain damage were also lacking. The combination of disabling barriers and lack of social networks for disabled people in these communities resulted in extreme isolation.

Low aspirations

3.29. Low aspirations and expectations can act as barriers to services for people with multiple and/or complex needs. Such low expectations may stem from individuals life experiences and disadvantaged circumstances, or they may reflect that significant others (including family and professionals supporting them) have low expectations of individuals or particular social groups, which in turn constrains their life opportunities and access to support.

3.30. Recent policy addresses the issue of low confidence and self esteem or 'personal capacity' as affecting access to services. The Social Exclusion Unit identified 'personal capacity' as an issue both preventing access to services and as having an impact on service experiences ( SEU, 2005a). One in 10 service providers responding to the SEU consultation identified lack of confidence as a barrier to accessing and using services, and this was more widespread in relation to BME communities and disadvantaged communities with low levels of literacy.

3.31. A study by Burchaldt (2005) found that while 'young people with complex health and support needs' had similar aspirations to other young people, that is, to live independently when they felt ready, to socialize with their friends, and to do something useful, such young people were at high risk of being restricted by low aspirations. Three groups in particular were at risk: young people with mental health problems; those with more severe impairments or more complex needs; and those who became disabled later on.

3.32. The literature highlights that the extent to which service users are treated with dignity and respect by front line and other staff is important in determining whether they decide to use a particular service. People with multiple and complex needs are more likely than others to report that services stigmatise and discriminate against them. For example, people with mental health problems report stigma and discrimination in health services, while some disabled people feel that they have been refused medical treatment because of their impairment (Social Exclusion Unit, 2005a; Stalker, 2006).

Inflexible access criteria

3.33. Organisational factors can have a strong impact on how easy or otherwise it is for individuals with multiple and complex needs to access services. Individuals may be excluded from services because of the criteria applied for service use. This can occur in a number of ways including applying strict age limits for accessing services resulting for example, in individuals falling between child and adult mental health services and young people in their 20s being ineligible for particular training programmes aimed at younger people (Social Exclusion Unit 2005b). Diagnosis or more than one diagnosis required for service access can result in broader needs going unmet (Scottish Executive, 2006c; Pratt et al, 2006). Appointments and opening hours can also inhibit engagement with services (Audit Commission, 2002; Scottish Executive, 2006c).

3.34. Service users often highlight the importance of ease and flexibility of access.

"I started my dialysis at Heartlands Hospital in Birmingham, but it took 30-45 minutes to get there by car. Now that I go to Ashfurlong it only takes me 15 minutes. Gemma is also now able to do a full day at work because the unit stays open later and she has her dialysis at 5pm". (Source: DOH, 2006, p.151).

3.35. Humphreys et al (2005) in an international literature review outlining the extent of overlap between substance use and domestic violence, argues that due to a pervasive 'silo' mentality (whereby agencies and professionals are trapped within discrete frames of reference), individuals' needs are not being met. For example, despite the overlap of needs, few perpetrators programmes or services for survivors of domestic abuse address substance abuse in any systematic way. Just as scarce are drug or alcohol services that explore issues of domestic abuse for either perpetrators or survivors. In the process of referral or help-seeking one or the other issue becomes lost.

3.36. Noel et al's (2005) research into complex health care needs or co-morbidity (defined as patients having 2 or more chronic illnesses) concludes that although most of the problems are not unique to patients with co-morbidity, this magnifies and increases the probability that such problems will occur. Similarly, research by Simons and Russell (2003) found that people with a combination of mental health and learning disabilities find it problematic to access the full range of effective services they need. This was particularly true for those said to be 'on the edge' of eligibility criteria for the 2 key sets of specialist services.

3.37. Whilst referrals were accepted by services, commonly there were disputes regarding respective services' roles and responsibilities, as well as problems with access to long-term placements. Joint service developments were said to be rare. As a result, a minority were placed out of area at some expense usually, while some requiring inpatient care either could not access such care or experienced long periods in inpatient care as there was nothing else suitable. Hardy et al (1999) make a similar point about the impact of resource decisions on accessing appropriate services.

Service targets

3.38. Increasingly, public services are subject to targets designed to measure service outputs and these may have detrimental impact on service willingness to work with clients with multiple and/or complex needs. This is increasingly being recognised in government reports focusing on disadvantaged groups (see for example Social Exclusion Unit reports, 2005a and 2005b):

"Targets that are primarily designed to drive up average performance of public services, or to ensure that more people achieve a specific objective, may provide weak incentives for providers to help disadvantaged people. Put simply, providers may focus on those people for whom it is easiest to get a positive result" (Social Exclusion Unit 2005 a, p16).

3.39. Additionally, differing service priorities and targets can inhibit joint working as services are reluctant to work outside their own area of responsibility (Social Exclusion Unit, 2005a).

Referrals

3.40. The literature highlights a number of issues in relation to the ways in which referrals may act as a barrier to accessing services. These include a lack of referrals between agencies, illustrating not only that service users are unaware of relevant services, but so too are the professionals who might be expected to signpost them. In the absence of up-to-date service directories, professionals often rely on historic knowledge, which can be inaccurate or out of date (Scottish Executive, 2006c).

3.41. Secondly, individuals are often given little support to access services they are referred to, leading to many failing to make contact (Social Exclusion Unit, 2005b). Thirdly, referrals may be inappropriate. For example, research has found that up to 28 per cent of mental health referrals from primary care to specialist services are inappropriate (Social Exclusion Unit, 2004b).

Waiting lists

3.42. Long waiting lists for services have been identified as a major barrier for those likely to have multiple and/or complex needs (for example, Prewett, 2000; Audit Commission, 2002b; SACDM and SACAM, 2003; Noel et al, 2005; Scottish Executive, 2006). Often people with multiple and/or complex needs including those with substance misuse issues and other problems, require prompt access to services, and this is inconsistent with rigid appointments systems (Scottish Executive, 2003).

3.43. Not having clear points of contact, experiencing long waiting times and the lack of rapid response were all mentioned as problematic by Onyett (2003) reviewing the development of team working in mental health. Not surprisingly, in the face of long waiting times for some services, people lose the motivation to address problems (Audit Commission, 2002b; SACDM and SACAM, 2003; Mental Health Foundation, 2003).

3.44. Prewett (2000) examining short breaks/respite care for 'children with complex or demanding needs' found long waiting lists and poor access to short breaks services for the families of such children. This arose because of a lack of suitable short breaks carers with the right training and background willing to work with children with additional needs. Requirements for accessible accommodation and/or specialist equipment and the requirement for 2 carers in some cases were also barriers.

Limited service options

3.45. People with multiple and/or complex needs often experience inordinate difficulty accessing any services. Not only do they sometimes not know what services and support are available and how to access them, in some cases, there are no appropriate services to meet their particular needs or to ensure they exercise their right to a full life. Either they receive no services at all or the services they do receive are limited. Such problems are very relevant to the experience of children with additional educational support needs (Scottish Executive 2005a, b, d), and are also evidenced starkly in the literature in regard to people from BME communities with additional support needs. The Disability Rights Commission/ CERES (2004) concluded that most services in the UK were not ready to "take on board the complex needs of disabled people from BME communities".

3.46. Emerson's (1999) research found that people with more severe disabilities received less support from residential care staff; they had less choice; fewer chances of employment; they were less socially integrated; had a less active lifestyle; had reduced participation in community based activities; and had increased chances of being clinically overweight. Those with intellectual disabilities from South Asian communities were at an even greater disadvantage. Also, young black men with intellectual disabilities were at increased risk of placement in residential care rather than being supported in the community.

3.47. For a variety of reasons therefore, people do not gain access to the services they need or finish up in inappropriate services.

3.48. Research shows that children with complex needs have difficulty accessing education despite policies widening access to all children (Townsley & Robinson, 2000; Noyes, 1999). While short break provision is generally recognised as an important aspect of coping strategies for families of an individual with 'profound and complex needs', a local needs assessment in one NHS Board area in Scotland (Ridley Associates, 2004) found this type of support to be rare, and what there is tends to lack flexibility.

3.49. Recent studies show huge inequities in accessing the option of direct payments across the UK, with England having around twice as many direct payment users relative to its population compared to Scotland, Northern Ireland and Wales and despite having a lower proportion of people with long-term illness or disability (Riddell et al, 2005). People with physical and sensory impairments remain the most common recipients and people with mental health issues, including dementia, the least likely to access Direct Payments. Another issue is that these payments have been used mainly to support personal care, which means their potential to advance social justice agendas as envisaged remain to be realized (Witcher et al, 2000).

Key points - Chapter Three

Awareness

• The general literature is replete with references to problems with a lack of or inaccessible information, poorly advertised services and low awareness of what services can offer
• People from black and minority ethnic communities, refugee and asylum seekers have particular difficulties in accessing information and advice about services
• There are particular shortfalls in interpretation and translation service and a lack of awareness among individuals and agencies about how to access such services
• Many people, including people with multiple and complex needs and their carers, are daunted by complex service systems
• It is increasingly recognised as a principle of good practice that it is important to provide clear, relevant information and advice about services
• A range of approaches are needed to meet the diverse communication needs of current and potential service users
• Independent advocacy is important in ensuring that people with multiple and complex needs have access to representation of their needs, views and wishes.

Accessing services

• Accessing the 'right' services is made more problematic by dispositional and situational factors such as sexual orientation, being an asylum seeker, a drug user, or having mental health problems and other issues
• Poverty and inequality are structural factors that impact on disadvantage in accessing services. Low aspirations have an impact on the opportunities available to people with multiple and complex needs and the support to live a full life on their terms - both in terms of their own low expectations and those of others
• Certain groups, such as disabled people, generally experience a number of access issues or barriers (physical and intellectual)
• People with multiple and complex needs may be excluded from services either because of the criteria governing service use ( e.g. age restrictions) or that services focus on addressing a single issue
• Service targets can have detrimental impacts for service willingness to work with clients with multiple and/or complex needs
• There are a number of issues around service referral e.g. lack of referrals between agencies and inappropriate referrals
• Long waiting lists for services pose particular problems for those likely to have multiple and/or complex needs
• For a variety of reasons, many people with multiple and complex needs do not gain access to the services they need or end up in inappropriate services.

3.50. Given the focus on service pathways, the following table summarises the findings of this chapter in relation to the stage of the service pathways covered, related processes and influencing factors and implications for service responses. A similar framework will be applied at the end of Chapters Four and Five.

Table 3.1. Awareness, experience of access and service implications

« Previous | Contents | Next »