Scottish Government

Chapter Four: Experiences of services

Introduction

4.1. Having considered issues of access to services for people with multiple and complex needs, we now focus on their experiences of pathways in and through services. The themes covered in this chapter relate to service users' experiences of care and support, the impact of transitions, the issue of what is called 'non-engagement'; patterns of participation and service outcomes.

Experiences of care and support

4.2. Some commentators like Rankin & Regan (2004) sound the alert that those who are most disadvantaged and who have the most complex needs have the poorest experience of services and are at greatest risk of their needs not being met - the 'inverse care law' (Tudor-Hart, 1971). While this may be true it should be recognised that people with multiple and/or complex needs are not the only groups to be disadvantaged by deficits and gaps in services. Barr et al (2001) found that users of community care services share concerns with others in the community about many aspects of public services, including transport, safety, planning, leisure opportunities, accessibility and participation. Exclusion is a "powerful common denominator between care users and others in the community" (Barr et al, 2001 p.5).

4.3. Broadly, the quality of service users' experience and outcomes relate to the complexity of systems of provision, how these are commissioned, co-ordinated and resourced, the nature of staff practices, partnerships and joint work and user involvement and empowerment.

4.4. The literature overall illustrates that while 20 years ago many people with multiple and complex needs were accommodated and cared for in institutional settings, policy movements in community care, criminal justice, children's services, housing and homelessness have promoted more diverse, community-centred systems of provision. One consequence is the multiplication of services and professionals involved in people's lives. For someone with both mental health and substance misuse problems relevant professions may include, for example, a social worker, a GP, a housing officer, support workers, an occupational therapist, mental health services, and/or addiction services (Petch et al, 2000, Parts 1 and 2). A similarly wide spectrum of service involvement has relevance to older people or people with a disability who have additional needs, or to people resettled from criminal justice establishments, younger people who have been in care, or homeless people or refugees who have been resettled in the community.

Assessment

4.5. Recognising that many people identified as having multiple and complex needs may be in contact over time with several professionals, at various stages they may have to undergo a formal process of assessment. While generally, the assessment of a person's needs is pursued as a matter of good practice, it can also be required by statute or as a condition of funding, as in the case of community care, criminal justice, and Supporting People services, for example.

4.6. Many service users and carers appear not to be familiar with either their entitlements to assessment, or with its role in the support planning process (Scottish Executive, 2001b, 2002a). This low awareness is potentially disempowering as assessment has a gate-keeping function. As the Guidance itself identifies, "assessment is not an end in itself. It is a necessary means of accessing support and services" (Scottish Executive, 2002a).

4.7. People may feel daunted by the assessment process, because they are concerned about its outcomes, or they experience it as intrusive, or they are traumatised. Initial assessments by whichever agency are therefore often unlikely to identify issues relevant to multiple and complex needs, which imply 'breadth and depth of need' (Rankin & Regan, 2004). It has been pointed out that "psychological and social problems may not be presenting problems" (Keene 2001, p.4), and that "the most vulnerable service users may be the least able or willing to articulate their needs and the least confident in accessing services" (Edwards, 2003). However, repeated presentations or referrals and contact over time, may allow the trust that is needed to enable a deeper assessment to be developed.

4.8. At times the professionals conducting assessments may lack awareness of particular configurations of multiple and/or complex needs, or may not understand their import and impact. Such low professional awareness risks inappropriate assessments and emphasises the need for staff training and cross-boundary working, which will be discussed in Chapter Six.

4.9. A further issue relates to the role that stigma can play, on the one hand in inhibiting people's willingness to discuss their needs with professionals and on the other in the approach and response of the professionals conducting assessments.

4.10. Other problems identified with assessments included:

• Though the case for sensitive, participative and comprehensive assessments is stressed in the literature, the reported experiences of people with multiple and complex needs imply that such criteria are met inconsistently
• People may be at risk of 'falling through the service net' because of multiple assessments (Rankin & Regan, 2004; Keene, 2001; Bevan, 2003; Scottish Executive, 2004)
• Joint assessments are underdeveloped in response to multiple and complex needs
• The blocks and waiting times that service users face in relation to accessing or sustaining the services that they need occur at various stages (Edwards, 2003).

Fragmented service responses

4.11. A metaphor used in a Turning Points publication captures the experience of many service users:

"Imagine trying to get your car fixed after it breaks down and finding that you have to take it to a different garage to fix each part - one to change the brake cable, another to fix the windscreen, a third to change the tyres and so on. Even worse, each garage is in a different area and none of them share information, so you have to repeatedly explain the problem and fill out separate forms at each visit" (quoted in Hudson et al, 2005, p.13).

4.12. Various impacts of service fragmentation on service users' experiences have been identified.

• Professionals work "in isolation from each other" (Keene, 2001 p6; Northmore, 1999; Rankin & Regan 2004)
• Service users may be in contact with and receive services from varied agencies and staff - "it can be a very crowded market" (Edwards, 2003)
• Agencies' responses are often divergent and limited.

4.13. The authors concluded that many of the above problems were not unique to people with multiple needs, as people with a single chronic illness may take more than one medication, experience side-effects, have difficulty communicating with their provider, or experience poor continuity of care. However, facing multiple issues appeared to magnify people's problems or increase their incidence. Moreover, people may get 'stuck' in using inappropriate services (Rankin & Regan, 2004; Keene, 2001; Bevan, 2000a and b, 2003).

4.14. In terms of its cultural impact fragmentation is seen to generate a 'silo mentality' which restricts professionals' frames of reference and responses. Structurally it can cause a 'revolving door', whereby a person persistently re-presents with minor immediate needs, but underlying difficulties are never tackled (Keene, 2001).

Medical model

4.15. Some authors stress that 'the medical model' can stigmatise and restrict people's life opportunities (Morris, 1996). Disability from this perspective is seen as a pathological physical/ medical condition that determines a person's needs. This approach is associated with an emphasis on clinical diagnosis (Rankin & Regan, 2004) and on medical and institutional responses to the support needs of people with disabilities. People's needs are not seen as a whole.

4.16. The 'social model', in contrast, views 'the problem' in terms of the 'disabling barriers' that current social arrangements and institutions place on the living and support options for disabled people, whether in the form of "negative attitudes or physical, social or economic factors" (Morris, 2004, p.6).

4.17. While the medical model predominated historically, the social model has increasingly gained acceptance, so generating more ordinary living options (Oliver, 1996; Oliver and Barnes, 1998; Priestly, 1999). However concerns persist about the impact of the medical model on outcomes for people with disabilities and multiple needs. Rankin and Regan (2004) point out that medical diagnosis (rather than the condition itself) is considered by many voluntary sector participants as a catalyst to social exclusion, as a purely clinical diagnosis "may make it impossible to respond to complex needs". They quote the Head of MIND's legal services:

"The fundamental point is that discrimination arises because of the diagnosis, not as a result of the condition itself" (Rankin & Regan, 2004,
p.61).

Dual diagnosis

4.18. For 'dual diagnosis' clients, the medical perspective may dominate outcomes to the extent that social support needs are undermined. Outcomes may be delayed or limited, for example, if there is straightforward psychiatric intervention rather than a social model of support (Rankin & Regan, 2004).

Positive experiences of active outreach

4.19. Some service users with dual needs reported very positive experiences of follow up services of for example, being listened to and followed up by outreach workers in specialist, targeted services:

"I would say that (this project) is probably the best thing that's happened to me in a lang time. They listen tae ye. If you've missed an appointment they will phone you up and ask us up. You get a sense that they care mair aboot ye there. Now I'm gang doon there 3 times a week to get the Reiki and acupuncture" (Scottish Executive, 2006c: p 43).

"I think the co-morbidity team is the best because they get a hold o' ye and keep pursuing ye until they get ye. Some days I don't come but they're persistent tae get a hold o' ye and they go looking for ye" (Scottish Executive, 2006 c: p43).

Limited service vision

4.20. Even if someone's multiple needs are known to agencies, professionals may use tried approaches rather than seek creative solutions that meet people's needs (Keene, 2001; Rankin and Regan, 2004). For example, a traditional day centre service may be presented as the only option for people with a learning disability and additional mental health or addiction needs (Clark, 2001). Alternatively, we have seen that some services exclude people with multiple and complex needs for reasons of limited vision or limited resources.

4.21. A recent study points to a serious lack of integrated effective service responses to women who have suffered domestic violence and use drugs or alcohol as a coping strategy (Humphrey et al, 2005).

4.22. Baron argues for a 3-pronged strategy for improving the response.

• Refuges need to be resourced better
• Some specialist refuges may be required
• Training and guidance are needed for mental health and substance misuse services to move people away from "the narrow focus on their particular specialty and respond in a holistic way to client's needs". Women's Aid has produced a series of Guidance Notes to this end.

Care management and co-ordination

4.23. Noel et al (2005) point out that, although the impacts of fragmentation are not peculiarly experienced by people with multiple and complex needs, their consequences may be magnified. Both care management and related examples are considered in this light.

4.24. Service users are often surprised to find that services are not co-ordinating their respective inputs or not sharing information to avoid duplication of effort. The Scottish Executive's "Modernising Government" report (2003a) quotes an old man who reflected, "So that's why the District Nurse always seems to turn up just when the Home Help is taking me to the Day Care Centre for my carpet bowls" (p3).

4.25. Another service user commented:

"I just don't understand why there can't be one file that's got all the information on you and that goes from place to place…What's difficult about that?" (Scottish Executive Effective Interventions Unit, 2003)

4.26. Formal care planning frameworks are commonly developed where intensive needs are identified, or there are legislative provisions that require this, such as pathways assessments and plans for young people in and leaving care ³, and the care programme approach for people with serious mental health problems "who also have complex health and social care needs" (Scottish Executive, 1996). Good practice requires that care planning focuses on ensuring integrated care pathways (Scottish Executive 2003c, 2004b,d) and that service users are involved in support and care planning processes throughout (Scottish Executive, 2004a).

4.27. On the face of it, care management, which was developed in the 1970s in the U.S.A as an attempt to improve co-ordination of care and access to fragmented services, should be highly relevant for people with multiple and complex needs who depend on many services, and are at heightened risk of admittance to hospitals or other institutions. Indeed early guidance from the Social Work Inspectorate also suggested that groups with complex needs be given priority in care management.

4.28. Scottish Executive guidance (2004a) noted that care management had "lost its way" and that an earlier review found inconsistency in policy and practice in care management across Scotland (Stalker & Campbell, 2002). The review highlighted problematic responses to complex and multiple needs. Though most workers holding 'complex' cases were qualified, a quarter had not received any training in care management, and 'intensive' caseloads were considerably higher than optimal. Of particular concern was that only 16 percent of the care managers were located in multi-disciplinary teams, while only one authority had budgets devolved to care managers. A separate review found a similarly uneven implementation of care management in England (Marlowe et al, 1999).

4.29. So far it appears that care management has failed to realise its potential for a positive response to complex and multiple needs. Most recently it has been redefined by the Scottish Executive as "intensive care management" to be targeted at people with complex needs or with frequently or rapidly changing needs (Scottish Executive, 2004a). Additionally, intensive care management is seen as being aligned to single shared assessment, which is discussed later (see paras 6.39. and 6.40. and Appendix Three).

4.30. Experience since 1990 would suggest that financial control and managerial agendas have prioritised care management's administrative and gate-keeping functions at the expense of advocacy and collaboration to meet needs. Various new roles proliferate - such as community matrons ( DOH, 2005a, 2006). However, it is very unlikely that these will resolve the underlying tensions. It is early days to comment on whether the Supporting People programme operates any more holistically and flexibly in its response to meeting multiple and complex needs.

Financial constraints on support planning

4.31. Care managers considered that the key factor affecting assessments and service responses was that of increasing pressures on budgets (Marlowe et al 1999). Choices about initial services or later changes in providers depended less on service users' and carers' views than on the existing budget position and whether or not 'in-house' services were available. Notably it was found that though service users find the care system complex and confusing, they largely accept the resource constraints on care managers (Marlowe et al, 1999).

4.32. Other constraints on access to key sources of funding for support for independent living have been identified. Regarding the benefits of the Supporting People programme Goldie states "many people with multiple needs have been assisted in ways that would not have been possible before" (Goldie, 2004a, p1) and "one of the biggest reported benefits of Supporting People has been to provide assistance to many people on the margins and to bring people excluded from services some limited support" (Goldie, 2004a p2). Successes of the Supporting People programme for people with multiple issues have included:

• Providing 'floating support' for people living independently
• Flexibility in staffing levels depending on levels of need.
• New legal rights for residents who become tenants
• Additional personal income for tenants
• Greater independence and responsibility for residents
• Freedom to make building and refurbishment changes.

4.33. Overall budgetary constraints in the context of high demand have resulted in difficulties in accessing higher levels of Supporting People funding required to meet additional support needs (Goldie, 2004, a and b; Watson et al, 2003). Goldie concludes that 'Supporting People' has been "a victim of its own success" (Goldie, 2004b).

Lack of consultation and choice in care planning

4.34. Hardy and Young's research was interested in the extent of user choice in the care management process for older people in 4 local authority areas. Only one of the 28 service users interviewed remembered being asked about her satisfaction with the proposed care package. None of those receiving home care had been given a choice of service providers. One carer said:

"We didn't really know anything about it. It was just a matter of they said, 'so and so will take care of this and so and so will take care of that' and at the time I was just glad of the help" (Hardy and Young, 1999, p488).

Communication barriers limiting participation and choice

4.35. For people with learning disabilities and 'high support needs', or 'profound and multiple needs', there is a high risk of exclusion from decision-making because of communication difficulties (such as no verbal communication) and/or challenging behaviour. This was most notable at times of transition (Beamer & Brookes, 2001).

Contested territory and poor outcomes

4.36. Service users and/or their carers often disagree with professionals' assessments of their options (Keene, 2001). Whereas many service users are accepting of resource constraints, in other instances disagreements arise between providers and service users if options are constrained by resources or by limited vision - for example if professionals favour residential care rather than ordinary housing and support for an older person, or a 'dry' rather than a 'wet' facility is identified for someone with alcohol problems, or a child is taken into care (Rankin & Regan, 2004). Keene states:

"clients often see professional assessments as unhelpful, and professional interventions as inappropriate, restricted and time-limited. This disparity forms the main obstacle to effective intervention" (p113).

4.37. Several studies found that assessment and support was problematic because the person was unable or did not want to accept help for various reasons, and both persistence and joint work were required on the part of service providers. In other instances the differing preferences of professionals and service users reflected the squeeze of limited resources.

4.38. Another scenario, given fragmentation, is that professional assessments diverge because of different approaches. The net effect is disjointed assessment and planning between housing, social work, health or voluntary sector services.

The context of transitions

4.39. The literature contains an abundance of examples of problematic assessment, support planning and provision in the context of transitions. Often these delayed people gaining access to the services that they needed or limited their rights.

4.40. The need for ongoing assessment and reviews are critical in planning person centred support, and particularly in the context of transitions. Some problematic transitions that may affect people with multiple and complex needs, include:

• The onset and development of long-term or chronic conditions, such as multiple sclerosis, HIV Aids, Huntingtons, dementia, or traumas such as brain injuries (George, 2000a; Terrance Higgins, 2001; SHA, 2006; Hudson, 2005)
• The uneven development of conditions such as autistic spectrum disorders ( ASD) or Aspergers (George, 2000b)
• Age-related transitions, such as when young service users have to start using adult services; or that determine when young people have to move on from care
• The onset and development of substance misuse-related conditions, including those related to severe mental illhealth or alcohol related brain damage (Cox et al 2004; McRae & Cox, 2004; Baron, 2005)
• The sudden illness or death of a relative or carer can be at the root of intense distress that compounds existing health problems or disabilities or creates new ones. This creates risk and vulnerability to other problems and can result in crises such as homelessness (Crane, 2004)
• Leaving criminal justice establishments, hospitals or large hostels (Petch et al, 2000; Rosengard Associates with Scottish Health Feedback, 2001)
• Having to flee home or country of origin due to violence or threat of violence or abuse (broadly defined), as in the case of young unaccompanied asylum seekers and asylum seekers and refugees more generally (Hopkins and Hill, 2006; Cemlyn and Briskman, 2003, Okitikpi and Aymer, 2003; de Lima, 2005; Hodes and Tolmac, 2005). Other migrants seeking work may have left circumstances of major poverty and hardship and have language difficulties (Edgar et al, 2005).

4.41. Positive experiences of support in the context of transitions are evident where services have been targeted to respond to particular needs ( e.g. age, gender or shared circumstances) and operate in a person-centred and holistic way. Examples will be covered in Chapter Six.

Moving out

4.42. Moving on from short or long-stay hospital services appears to be seriously problematic for those who have additional or multiple needs.

Planning and resource gaps

4.43. It was found that the pattern of delayed discharge was exacerbated by the discrepancy between advances in medical care, which could speed up treatment and maintain lives better, and the inadequacies of the social and community based support on offer within the community to meet children's needs on discharge (Stalker et al, 2003). Though joint working was often ineffective between social work, education and health, for example, innovative and collaborative practice did emerge. The net effect was that children and young people often had long waits in hospital for care packages, accommodation and adaptations in the community. The rise in those supported at home has not been matched by additional funding for community based services. (p27) Overall, parents were important advocates for children, though they had a low awareness of complaints procedures even if they had received a copy.

4.44. Similar issues emerged in a study of adult hospital reprovisioning and resettlement in the fields of learning disability, mental health and physical disability in Scotland. (Petch et al, 2000). Both studies indicate that the problems are not about 'difficult' clients but about 'inadequate services' (Morris, quoted by Stalker et al, 2003). However although Petch et al's study found that "for the large majority the outcomes are highly positive", it highlighted the extreme difficulties faced during such transitions.

"Reprovisioning and resettlement programmes have a considerable emotional impact. Their planning and organisational momentum creates uncertainties and instability for the individual hospital residents who are to be resettled in the community. People often face considerable uncertainties and fears about their future lives, they have their needs assessed and re-assessed by different professionals, and they may be moved between wards and hospitals as service provision contracts at the hospital end. Timescales, resources, planning requirements and contingencies can mean individuals experience a significant level of unsettlement and disturbance as part of the process (Petch et al, 2000, p73).

Unsettled pathways, fragile solutions

4.45. Beyond the problems identified earlier in regard to navigating complex service systems, some research identifies 'revolving door' scenarios associated with particularly poor outcomes. Essentially, individuals access several different services, while none of them properly tackle multiple and complex needs.

4.46. People defined as having 'multiple and complex needs' by the Human Service Department of Victoria, Australia, had become involved with a wide range of services "without clearly established case management and funding responsibility" (2003a, p5). Often they could access services but were referred between them as they do not easily fit their legislated or service eligibility criteria:

"Services may avoid acceptance of ultimate responsibility since each agency can claim that they are not mandated, funded or equipped to accept such responsibility…" (p5).

4.47. Again this has resonance with the UK experience where people who have substance misuse, mental ill health, offending and homelessness histories may both have accessed a number of services and experienced exclusions from services. Keene (2001) argues that many services focus on particular needs rather than on wider problems and that the lack of appropriate alternative or move on accommodation and support services then serves to compound problems and difficult behaviours for example, after being in prison.

4.48. Other 'revolving doors' relate to unsuitable move on arrangements from institutions.

Equivalent poor outcomes associated with revolving door scenarios were repeated in respect of different client groups with multiple and complex needs covered in this study.

Non-engagement, exclusion and low participation

Non-engagement

4.49. A pattern of 'non-engagement' or 'non-compliance' with services has been considered within the literature, with some studies attributing this to individuals' multiple problems and lack of motivation, while others consider 'non-engagement' as reflecting poorly designed, inappropriate services. Rankin and Regan stress that non-engagement is best seen as a poor service outcome attributable to inappropriate services, rather than simply to service user 'choice' (2004: p 97). They apply the 'inverse care law' to explain exclusion; in other words those with greatest needs are at greatest risk of getting the least services, largely because multiple interconnected needs are not responded to with a 'whole person' approach.

4.50. Potential influences on non take-up or rejection of services at different stages may include the following patterns:

• Service users do not trust professionals due to prior experiences or are inhibited for personal reasons or embarrassment (Keene, 2001)
• Some service users (and carers) have very low confidence in the likelihood of gaining either useful advice on options, or positive outcomes, with low expectations often found within particularly disadvantaged communities. Additionally there are the asylum seekers/ refugees with language difficulties (Nicholson and Wallace, 2005) or who have been traumatised and/or have had experience of "a punitive regime of rigorous investigations and insecurity", as well as 'grudging services' (Pearl & Zetter, 2002)
• The culture and communication style of a service may leave people feeling uncomfortable or put off, such as when there are cultural insensitivities in communication with minority ethnic households, or when service users feel probed too deeply. (Rosengard et al forthcoming, 2006)
• Tightly structured appointment systems are not consistent with chaotic lifestyles (young people, homeless people and people with mental health issues) (Edwards, 2003, Rankin and Regan, 2004)
• At different stages people are not ready to acknowledge or address addictions or mental health issues (Keene, 2001)
• Personal crises destabilise people, so that non-compliance and sometimes serious incidents occur, resulting in further cycles of exclusion, exacerbated poor health or injuries, and disengagement or institutionalisation (Rosengard et al, 2002).

4.51. The following example was addressed in a topical Mental Welfare Commission for Scotland Report (August 2006). It stresses the importance of strategic and co-ordinated care planning and joint working to prevent cumulative problems for people with Alcohol related brain damage (which is increasingly referred to by professionals as ARBD).

4.52. Service users may be discouraged from engaging with a service because their wants and expectations differ from those of service providers. Keene (2001) stresses that many people with complex needs essentially want help with 'maintenance' and sustaining their current situation, including with ongoing support. Professionals on the other hand tend to prioritise change in the life of service users. While this may be true long-term for some service users, service users' self-expectations may change over time - whether following a crisis point, or a contact with an individual professional, or particular service, that they can relate to, develop confidence in, and trust to engage with.

4.53. A typical form of non-engagement identified was that of an older woman living in the community who was eventually assisted through joint work. She had been affected by depression, the onset of dementia and malnutrition and could not deal with immediate dangers, such as a gas leak. She was affected by 2 types of transition - in her health, due to increasing dementia, and in her accommodation, given a series of moves from home to hospital, to residential care, then back home to live with a live-in carer. While she did not accept help initially, gradually she accepted support from her GP, family and other services ( CPN and specialist Dementia Home Care team), so enabling a 'joined-up assessment' (George, 2000a).

4.54. A challenging version of 'non-engagement' in a case of suspected abuse of an older person was used to illustrate the need to balance the social work value of self-determination with risk assessments, external monitoring and involving the police in a timely way (Preston Shoot, 2002). An older woman had alleged physical abuse and food deprivation and was then assessed as doubly incontinent, with serious mobility difficulties and as unable to care for herself. Her GP had requested a housing transfer. Her family said they found her hard to help as she was unreasonable and demanding. Though social workers attended routinely and she continued to complain of family members' behaviour, she refused to go into residential care, or to have the police involved. Later she was beaten up and almost strangled.

4.55. More generally a key challenge for staff is "the issue of how to engage people who refuse the support. How do we work with them?", as was raised in a recent study of intentionality in homelessness (Rosengard et al, 2006). This will be considered in Chapter Six.

Beyond eligibility

4.56. People with multiple and complex needs, whatever their primary assessed need, may be 'defined out' of the remit of services because they are assessed as being 'too complex' or 'too challenging' for the service (Keene, 2001; Rankin & Regan, 2004; Bevan, 2003). Such exclusions occur in statutory and voluntary sector services, including schools, residential establishments, housing support and other support services. They may impact on people leaving institutions and homeless people, people with disabilities, young people of school age services for people with a learning disability, people with addictions of all ages, or young people or women who have experienced abuse.

4.57. A key block is that residential services may not accommodate people with additional needs, such as a diagnosed mental health problem. - "the services 'gate' may be closed, or only part open, when people are identified as having complex needs, or a history of difficult behaviour" (Rosengard Associates with Scottish Health Feedback, 2001). This may be either because the client group's needs are narrowly defined, or because staff are under-resourced and untrained to address specific additional needs or problematic behaviours. Or it may be that existing resources, such as shared accommodation, are inappropriate due to the assessed risks for service users or staff, for example where there are histories of violence or sexual abuse.

4.58. Management strategies also vary in relation to client non-cooperation or non-engagement. While some services strive to operate as flexibly as possible, others appear to operate a more or less rigid, '3 strikes and you are out' policy, and apply this for example, when people fail to attend appointments or to keep to agreed plans. While in some instances there may be no option but to exclude the person in question, the net effect of a rigid style will be to reinforce the inverse care law - those most affected are likely to be those with the most chaotic lives.

4.59. There is stark exclusion in the case of asylum seekers from mainstream services due to the current law and their dependence on NASS⁴ service provision while seeking asylum. Moreover they may be excluded forcibly from school, accommodation and support services, if their claim is unsuccessful. Here service providers have no choice, regardless of concerns about destitution or the distress of the individual. As well as the impact on individuals, there is a reported stress impact on staff ( ECRE Conference in Glasgow, May 2006).

4.60. Clearly, exclusive agency policies may be modified over time with changes in the law or with organisational policies - for example, access to services for asylum seekers has decreased incrementally since 1999. Others affected by exclusions from services, have been young people using drugs and current alcohol users in 'dry' establishments. It is notable however that since the development of joint local homelessness strategies and partnership working with drugs services, homelessness services have gathered confidence in working with people misusing drugs in Scotland. Additionally there is the ongoing development of a wider and more responsive range of services for homeless people with serious alcohol problems (Rosengard et al, 2002; Neale and Kennedy, 2002).

4.61. The following example from Turning Point's Link Up service shows the importance of responsive and pro-active work and of services jointly striving and 'sticking with' a person who has been alienated from services and/or is not ready and motivated to engage with the services on offer.

Influences on exclusion and non-participation

Exclusion and poverty

4.62. Exclusion and low participation in services is shaped significantly by the impact of poverty, and particularly on neighbourhoods with concentrations of high unemployment/low income, benefits dependence, poor literacy and low confidence in service use (Pantazis, Gordon and Levitas, 2006; Mooney and Scott, 2005; The Social Exclusion Unit, 2005 a and b). Moreover some groups are more at risk of poverty and unemployment, such as children and young people with intellectual disabilities, with negative consequences for the health and well being of their families (Emerson, 2004).

4.63. In the face of a complex and changing welfare benefits system, those who are multiply disadvantaged and/or who have support and care needs are often greatly dependent on professionals to obtain and sustain the income support and benefits that enable them to live positively in the community and the care and support that they need (Hirsh, 2004). Moreover, fragmentation of services exacerbates problems when people's needs change, as when someone is hospitalised or enters a criminal justice establishment this can affect welfare benefits adversely ( e.g. housing benefit) (Rosengard et al, 2002).

4.64. Receiving Direct Payments helps increase flexibility and individual control over outcomes and improves the quality of disabled people's lives (Witcher et al, 2000), although some recipients do not get the support they need to make this work well for them (Morris, 2004). Further, although Direct Payments can be used to buy a variety of support and services and not only to provide physical help with daily living, they have become synonymous with personal assistants and physical disability (Bornat, 2006).

Institutional discrimination

4.65. Agency non-recognition of particular needs or inaction in the face of excluding policies or practices can be systemic. Examples include where people with physical disabilities confront non-accessible buildings; where people's communication needs are unaddressed (people with learning disabilities; people from minority ethnic groups) and where cultural needs are not addressed sensitively (for example, minority ethnic groups, gypsy travellers whom the Scottish Executive treats as a distinct minority group) (Communities Scotland, 2003).

User involvement

4.66. Generally there was very little focus in the literature on how far people with multiple and complex needs are involved at a strategic level in service planning and in the commissioning and management of services, although the literature overall emphasises the gap between the rhetoric and reality of inclusion for people with additional support needs. The gist of these discussions is that meaningful participation is variable, with some service users feeling that their views are not heard or taken into account.

4.67. There are indications that people with multiple and complex needs may be excluded from partnership and involvement initiatives because services segregate people according to their impairments and therefore highlight their differences rather than shared experience (Clare and Cox, 2003; Morris, 2004). Additionally, those with multiple and complex needs may be seen as difficult or resource intensive to involve. As a result "marginalisation is the context in which many people with complex needs currently engage with health, housing and social services" (Clare and Cox, 2003).

4.68. Moreover, where communication difficulties are a constraint, staff may not have the conviction, the skills required or the ability to access resources to enable or maximise participation.

4.69. Sustained participation requires continuing commitment, resources and support. White and McCollam state (1999) that "participation and consultation demand a great deal of effort and energy from service users, which will only be sustained if the exercise is perceived as useful and fruitful". They stress that engaging service users in planning will be undermined if this is "mere window dressing", with decisions in fact being taken elsewhere; and that "consultation fatigue may begin to prevail amongst staff and service users".

4.70. There have been advances in structured user involvement in strategic planning through the Scottish Executive's engagement in pro-active consultation with homeless people and community care service users. This was evident in examples such as the 'Same as You' consultation programme, which involved people with learning disabilities, the Millan Review consultation with mental health service users (Rosengard and Laing, 2001), Communities Scotland homelessness service inspections (Communities Scotland, 2005) and the Homelessness Task Force consultations with homeless service users. There were no indications however of progress in service user involvement in the purchasing and commissioning of services.

Outcomes

4.71. Here we turn to consider what the literature overall tells us about the outcomes of service interventions for people with multiple and complex needs. Four key points emerge:

• The literature raises questions about how outcomes can meaningfully be defined and measured, and particularly given the focus on people with changing needs
• It offers little systematic evidence of outcomes of the type, for example, that has been based on monitoring information
• Given that most research is short-range and qualitative, or offers 'snapshot in time' quantitative study findings, there is no comprehensive or systematic information on longer-term outcomes.
• Case study histories are frequently used to illustrate patterns over time.

4.72. Regarding the problems of defining outcomes, questions arise such as: Is sustained outreach contact an output/ process or can it be viewed as an outcome? Is a client's move on to housing coupled with support an output or an outcome for people who have had revolving door histories? Can continued drinking in permanent accommodation be regarded as a positive outcome for someone with chronic alcohol misuse? Does a young person from care who has had a troubled history and has rejected support at times, but is continuing to receive continuing support while staying in an unsuitable Bed and Breakfast establishment, have a positive outcome?

4.73. Although poor outcomes appeared to be prevalent, some positive outcomes were clearly identified in the literature. For 3 of the people whose problematic histories were described earlier, there were positive outcomes, as shown below.

4.74. This man's experience mirrors a dynamic identified by Rankin and Regan (2004) and other research (Keene, 2001) - that often it is not until people are ready and motivated that positive engagement occurs. This affirms the need for agencies to 'stick with' people over time. While this may indicate long-term and high support costs, the alternatives of 'giving up' on people is to risk serious crises with associated higher cost outcomes for some.

4.75. It was not feasible in this study to gather agencies' reports systematically. Had it done so this may have supplied information about evaluations conducted and more detailed evidence on monitoring. However, Rankin and Regan (2004) and Keene (2001) both identify a lack of systematic or sophisticated monitoring or tracking of multiple and complex needs and of monitoring the effectiveness of services.

Key points - Chapter Four

• The attitudes of staff in a range of services can be experienced as off-putting, insensitive and unhelpful and this undermines service users confidence and trust
• Community care service users and carers are often not familiar with their entitlements to assessment or with its role in support planning. Moreover, the multiplication and fragmentation of services leads to fragmented and multiple assessments, a source of stress to service users
• Where services define and apply their client group criteria inflexibly, such as arbitrary age cut off points, this mitigates against continuity of care
• A 'silo mentality' constrains the achievement of co-ordinated support and risks people receiving inappropriate services with poor outcomes. Medical 'dual diagnosis' labels in particular can limit the range of options accessed by people with multiple and complex needs
• Overall, it appeared that the presence of multiple, interconnected needs, rather than the severity of needs, creates the greatest challenges for services created to meet single service user needs
• Often there appeared to be inadequate assessment, support planning and resources for people affected by transitions. This delayed people gaining access to the services that they needed, or limited their rights
• When service users and carers disagree with professionals' assessments, the options selected appear to be constrained by resources or limited vision
• People from minority ethnic communities, refugees and asylum seekers did not consistently receive sensitive assessment or access to interpreters and translators
• People with multiple needs may be 'defined out' of the remit of services for organisational reasons, because they are assessed as being 'too complex' or 'too challenging' for the service
• Non-engagement with services occurred because of dispositional, organisational, situational and structural factors. These included: lack of trust and confidence, services' cultural insensitivities; services' systems or cultures being compatible with life-styles; poverty impacts, and people not being ready to address problems. Outcomes may be exclusion and rough sleeping exacerbated by poor health, injuries, or institutionalisation
• Exclusion reflected the interplay of poverty and related disadvantage and additional support needs. Refugees experience significant exclusion and require highly sensitive, targeted services
• There is a gap between the rhetoric and the reality associated with participation in services.

4.76. The following summary table identifies what the literature tells us, first about the key processes and influencing factors on service users' experiences in relation to moving on within and through services (column 2). It then summarises elements of good practice required to enable positive experiences and outcomes (column 3).

Table 4.1. Influences on experiencing services and good practice implications