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Chapter Two: Who has multiple and/or complex needs
Introduction
2.1. This chapter first considers how the terms 'multiple' and/ or 'complex' needs have been defined and applied, primarily to clarify the client groups whose needs are of concern to this study and to identify key emergent themes. We then consider what some of the literature tells us about the prevalence of multiple and complex needs. This will set the context for exploring aspects of service pathways, gaps and best practice in meeting the needs of people with multiple and complex needs in subsequent chapters.
Complex terminology and mutliple issues
2.2. A plethora of terms are linked with the concepts of 'complex' and 'multiple' needs, used by various disciplines, sometimes specifically, and most often interchangeably. They include: 'multiple disadvantage', 'multiple disabilities', 'multiple impairment', 'dual diagnosis', 'high support needs', 'complex health needs', and 'multiple and complex needs'.
2.3. Overall the review of the literature and our consultation programme points to a lack of consensus on the meaning of the various terms associated with 'multiple' and 'complex' needs. Often there was an assumption that complex and/or multiple needs are a matter of fact and can be understood without definition, and a strong thread through the literature was that the terms are used interchangeably.
2.4. Having arrived at a similar conclusion, Rankin and Regan (2004) usefully identify the essence of complex needs as implying both:
- breadth - multiple needs (more than one) that are interrelated or interconnected
- depth of need - profound, severe, serious or intense needs.
2.5. Rather than use the term 'complex needs' to describe an individual's characteristics, Rankin and Regan (2004) define it in terms of an active framework for response. These authors suggest the term offers:
"A framework for understanding multiple, interlocking needs that span health and social issues. People with complex needs may have to negotiate a number of different issues in their life, for example learning disability, mental health problems, substance abuse. They may also be living in deprived circumstances and lack access to suitable housing or meaningful daily activity. As this framework suggests, there is no generic complex needs case. Each individual with complex needs has a unique interaction between their health and social care needs and requires a personalised response from services." (p 1)
2.6. Rankin and Regan's inclusive approach leads us to consider how current service arrangements and the factors of poverty and exclusion impact on meeting multiple and complex needs. Moreover, they argue that social care should be brought within the social inclusion agenda. Neale (2004) similarly stresses that people's problems cannot be divorced from structural factors, such as poverty, unsuitable housing, limited education and poor employment prospects.
2.7. Below we illustrate the range of needs and issues highlighted and how these have been described and classified by those using the terminology of "multiple and complex needs".
Breadth and depth of need - 'multifaceted and multiple problems'
2.8. These include people with mental health problems (Keene, 2001), young people, people with a disability (Mattingley, 2002), and "people labelled with severe or profound impairment(s). They are likely to have a range of different needs and to require support from several different services to meet these needs" (Weston, 2000). Additionally, multiple needs have been identified for homeless people, travelling people, refugees and asylum seekers and people who have experienced violence or abuse (for example, Rosengard et al, 2000; Bevan 2000a, and b; Harrison, 2001; Social Exclusion Unit, 2004a).
Depth of need - 'profound, severe or long term impairment or disability'
2.9. Those identified as having profound difficulties include people with severe and complex learning disabilities and non-verbal communication (Kellett, 2005; McIntosh and Whittaker, 1998); people with 'severe and lasting mental health problems' (Cunningham and McCollam, 2001) and people with sight disabilities or who are blind and have 'additional needs' ( RNIB, 2001).
Presenting multiple problems to services
2.10. The Social Exclusion Unit (2005b, p27) found that 98 percent of services that work with young people consulted in a survey, "said that young people presented to a particular service with multiple problems". Similarly Gross (2002) in relation to children with complex needs in ordinary primary schools links complex needs with behaviour problems and implications for teaching practices. Bowen et al (2002) link complex needs with severe or long term additional needs in education, and Bond (2004) connects complex needs with 'challenging behaviour'.
Multiple disadvantage
2.11. Various commentators and Government reports highlight the links between high deprivation, area concentrations of poverty, unemployment, poor housing, problems with literacy and high risks of the impact of crime (Pantazis, Gordon and Levitas 2006; Social Exclusion Unit, 2005a and b; Scottish Executive 2005h). Rural location was found to exacerbate problems for people with complex needs (McCann et al 2005). Additionally, travelling people may only have access to poor quality sites, while some have literacy problems, disabilities and health problems, which may be exacerbated by frequent evictions (Morris and Clements, 2001). LGBT people frequently face problems caused by multiple disadvantage associated with their sexual orientation as well as with other factors such as race, disability, faith, economic or asylum status (Inclusion Project, 2003).
Multiple needs relating to age and transitions
2.12. The research has focused on the multiple and complex needs of young and older people, including at points of transitions, such as leaving home, leaving institutions, or the onset of illness or disability. For example, Barlowe and Breeze (2005) explored the potential for teleshopping to alleviate problems of disability and isolation for older people for the Rowntree Foundation. The Social Exclusion Unit (2005b) defined young people with complex needs as suffering "disproportionately from a number of different types of disadvantage, the impact of which results in challenges for service provision". Here disadvantage may include: worklessness, lack of training or education, poor health (in particular, mental and sexual health) or substance misuse.
People who are excluded and 'hard to reach'
2.13. Many studies researching multiple disadvantage and people's support needs have identified a small population who have significant unmet needs (for example, Adebowale, 2004; Watson, 2003; Keene, 2001). Watson refers to people who are 'marginal, high risk and hard to reach'.
2.14. This includes some young people who may be involved in substance misuse, offending and at risk of exclusions. Melrose (2004) identifies the complex needs of young people who are using substances and who have offended, been excluded from school and/or been looked after in the local authority care system. Serious substance misuse is seen as related to the "extreme vulnerability" to exclusion, exploitation and injury, of for example, young people involved in illicit drug use in Glasgow (Neale, 2004) or to the risk of homelessness and/ or exclusion from services for older people with chronic alcohol problems or alcohol related brain damage (Cox et al, 2004), or for younger people using substances.
2.15. The 'Mind the Gaps' report by the Scottish Advisory Committee on Alcohol Misuse ( SACDM and SACAM, 2003) refers to "deep-seated and multiple problems which often have complex and multiple causes" SACDM and SACAM state:
"'Mind the gaps'" is a report about "people with deep-seated and multiple problems which often have complex and multiple causes" (p11)…"The evidence also shows that people who experience co-occurring substance misuse and mental health problems often experience other complex social problems, such as unemployment, homelessness, violence and childhood trauma which can occur over long periods of time" (p12).
2.16. In sum the literature leads this review to focus on people with additional rather than singular needs, on the wider situational and structural influences on these needs, and on the effectiveness of service responses. Just as Stalker et al conclude from their study of the experience of children and young people with complex needs in hospital settings, there is no consensus of definition within the literature, nor amongst professionals, but rather a surplus of meaning (Stalker et al, 2003). Weston (2000) similarly comments that the term 'complex needs' is potentially ambiguous and contentious.
Note on implications of the terminology for the study report
2.17. Against this background, in this report we shall apply the terms 'multiple' and 'complex' needs to signify both breadth and depth of need. It is worth noting that one concern that arose for the research team was the issue of whether describing people as having 'complex needs' may be stigmatising. However while the research team considered replacing the term 'complex needs' with that of 'additional needs', it was felt that this would potentially be confusing given the common usage of the term 'complex needs' within the literature.
Emergent policy concerns and priorities
2.18. A strong thread running through the literature on multiple and complex needs is that service users identified as having multiple and complex needs are seen to be particularly poorly served by services. Some writers are concerned about this from a social justice and social inclusion perspective. Others appear to be driven by concerns that these groups are at the extreme end of a continuum of need and pose the greatest challenges to services.
2.19. Concerns about service responses to multiple and complex needs have an international dimension, as was illustrated by a recent report on pilot projects in Australia that were specifically designed to improve outcomes for people with 'multiple and complex needs'.
2.20. This raises issues that are relevant to the current Scottish Executive initiative involving the launch of several pilot projects in 2006. However it is important to note that the focus of the Scottish initiative differs in one important respect, which is that the range of pilot projects addresses a far wider spectrum of needs.
2.21. The Australian agenda generated 2 reports by the Department of Human Services (2003a, and b) and a literature review on responding to people with 'high and complex needs' (Thomson Goodall Associates, 2002). These focus on a clearly defined minority group whose needs have been identified as extremely challenging to services and who often experience inappropriate service responses. The rationale for the Australian pilot projects was identified thus:
"Over the past few years there have been concerns raised by service providers, clinicians, carers…regarding the difficulty in providing services to a group of people who have multiple and complex needs. These individuals include adolescents and adults who may experience various combinations of mental illness, intellectual disability, acquired brain injury, physical disability, behavioural difficulties, social isolation, family dysfunction and alcohol or other substance abuse. Often they are unable to sustain appropriate accommodation, or require a level of support the current design of services does not readily allow. Services are often unable to maintain involvement over time with individuals with extremely difficult behaviours." (Department of Human Services, 2003a, p5)
2.22. Using case finding and a nomination process to identify target individuals combined with case studies of a sample of the target group, the Australian pilots identified and quantified the target group, and looked at people's service experiences, gaps in services and proposed solutions.
2.23. Multiple and complex needs were defined in this literature as:
"Presenting factors that characterize the target population were a combination of all the following -
- Having multiple and complex presenting problems
- Having high and complex needs, not met or sustained by existing services
- Having challenging behaviours that place individual at high risk to self, service staff and/or the community
- Chronic or episodic behaviours and/or conditions that require long term service responses
- Requiring a service response from 2 or more department programmes (or criminal justice) areas
- Having a specific need for which there is no current service system response and/or require a current tailored funding package (usually at high cost)."
2.24. While this definition is clearly at odds with the framework proposed by Rankin and Regan (2004), it suggests a continuum of need and complexity, as is increasingly found in the policy and other literature. For instance, both the 21st Century Review of Social Work (Scottish Executive, 2006b) and SACDM and SACAM (2003) adopt this definition.
2.25. Keene (2001) in a research based, literature and analytical overview in relation to 'clients with complex needs' (which incidentally was used to inform the Australian approach), chose to focus on "the most difficult and intractable group who make heavy use of services". At the other end of the spectrum of need are considered to be people with a single 'simple need'. Again this implies a hierarchy of need reflected in patterns of use and challenges to services. In examining clients with complex needs, Keene focuses attention on:
"Vulnerable men and women with complex health, psychological and social problems who move more or less continually through social, mental health and health care agencies, homeless hostels, drug and alcohol agencies and the criminal justice system. They constitute a more or less disproportionate part of the caseloads of health, social care or criminal justice professionals. Many of them are vulnerable, deprived and often labelled as "revolving door" clients..." (Keene, 2001, p4).
2.26. Similarly the Riddell Committee (Scottish Executive, 1999) examined special educational needs while it sought to avoid categorising children in relation to their disabilities. The Committee saw the need to define and recognise the needs of children with "severe low incidence disabilities" as a subset of children with special educational needs, in order to target services better. These were children and young people with "pronounced, specific or complex special educational needs which are such as require continuing review". Further:
"The degree of inter-agency co-operation, planning and support required to meet their needs is greater than that usually required to meet the needs of children and young persons. In addition, they require a high level of educational support in one or more of the following areas:
- The physical environment
- The curriculum
- The degree of adult support and supervision required
- The level of specialist resources, including Information and Communications Technology, required."
2.27. The emphasis on multiple and complex needs is increasingly associated with policy emphases on 'personalisation', preventative strategies and cross-boundary working (Leadbeater, 2004). Additionally, the notion of a continuum of need is reflected in the promotion of 'tiered' services that have the capacity to prioritise and target higher (more complex) levels of need.
2.28. The vision of the role of social work in the future is perceived as adopting a "personalized approach in helping those with most complex needs gain control of their lives and find acceptable solutions to their problems" (Scottish Executive, 2006b). While emphasising the importance of investing in prevention and earlier intervention, the social worker's role is presented in terms of this tiered approach, and it is argued that social workers should "work directly with people, alongside their families and carers where there are complex, unpredictable, longer term needs and risks" (p 31).
2.29. In line with a model developed by the Health Advisory Service (1996), Christian and McGilvary, (1999) describe services to young people with drug and alcohol problems in terms of tiers ranging from tier 1 basic generic services up to tier 4 for the minority who have particularly complex needs and including specialist services such as inpatient detoxification, residential rehabilitation for those with co-morbid disorders and adolescents in secure provision. The 'Mind the Gaps' Report ( SACDM and SACAM 2003) adopts a comparable approach, with a focus on those at the extreme end of need or "people with deep seated and multiple problems which often have complex and multiple causes". Their main focus is people who experience co-occurring substance misuse and mental health problems and who also experience other complex social problems such as unemployment and homelessness.
The wide spectrum of multiple and complex need
2.30. A key challenge for this review is that it addresses a very wide spectrum of particular needs and interest groups and therefore a highly diverse body of literature. Within its limitations the review will take account of service responses to the needs of the following groups with multiple and complex needs:
- People with disabilities and community care needs in general, including older people; children and young people; people with learning disabilities; people with mental health problems; people misusing substances and who have health-related problems; and people connected with the criminal justice system
- Gender and sexuality related needs, including those of women affected by gendered violence, and lesbian and gay people
- Minority ethnic-related needs, including those of asylum seekers and refugees and gypsy travellers
- People affected by other aspects of exclusion, such as homeless people; people leaving institutions - hospitals, hostels and offenders establishments; people in rural areas, or in poverty and deprived communities.
2.31. These issues are addressed within a Social Exclusion Unit report that points out that while there are many groups with complex needs, there are 3 main broad and overlapping groups of people for whom policies consistently seem less effective.
- People with physical or mental health problems
- Those who lack skills or qualifications, both formal qualifications and broader basic and life skills
- People from some ethnic minority groups, including asylum seekers and refugees (Social Exclusion Unit, 2004a, p7).
2.32. Subsequently in its 2005 reports, the Social Exclusion Unit further emphasises the links between poverty, multiple disadvantage and multiple needs.
The prevalence of multiple needs
2.33. The extent to which services have to respond to multiple needs is inevitably influenced by the prevalence of multiple needs amongst existing or potential clients or service users. As noted above, there is a lack of consensus of definition and understanding of what is meant by 'multiple and complex needs', which makes quantifying the prevalence of multiple and complex needs difficult. While few studies have focused on the prevalence of multiple and complex needs specifically, there are a number of indicators in relation to the broad spectrum of needs mentioned above covered in the literature on multiple and complex needs, and this will now be discussed.
2.34. As noted, the literature on multiple and/or complex needs, has a focus on particular client groups. Correspondently, reference to prevalence rates also tends to consider particular client groups, for example: people with psychological and mental problems (Keene, 2001), people with substance misuse and mental health problems ( SACDM and SACAM, 2003), women who have experienced domestic violence (Baron, 2005; Humphreys, 2005), homeless people (Homeless Link, 2002a and b), people with learning disabilities (Scottish Executive, 2000; McGrother et al, 2001; Ridley, 2004), older people with long term conditions (Department of Health, 2006a), young people (Social Exclusion Unit, 2005b), people with particular needs regarding communication (Social Exclusion Unit, 2005a and b) and people with challenging behaviour (Hogg, 2001; McGrother et al, 2001). Information on prevalence rates as quoted in these studies is shown in Appendix 2. Further information on clients who make heavy use of services can be found in Keene (2001) Chapter one.
2.35. Notwithstanding the attempts made in some studies to quantify the proportions of people with one or more conditions requiring service intervention, a key finding from the literature review is that there is no clear picture, at either service or strategic planning level, of service users' contacts with different services. It has been argued that this lack of information mitigates against effective planning and responses by services (for example Keene, 2001; Rankin & Regan, 2004).
2.36. In a study of shared populations in an English county, anonymised use of health and social care services was mapped over a 3 year period. This tracking exercise concluded that 22 percent of service users were in touch with at least 2 service clusters (a cluster was defined as different delivery agencies that comprise one branch of social services, such as learning disability cluster or mental health cluster). It also found, for example, that 41 percent of social services clients with substance misuse problems also attended mental health services, indicating that these were clients with 'dual diagnosis' (Keene, 2001; Keene & Li, 2005).
2.37. Rankin and Regan (2004) have thus argued that there should be a statutory duty on the NHS and social service departments to collect data on people who use more than one type of health and social care service. Keene and Li (2005) point out that such information would be useful for the purposes of research planning and service development, but not for individual casework or clinical purposes.
Summary
2.38. A notable lack of consensus was found on the key terms used in this literature review, with terms such as 'complex needs', 'multiple needs', 'high support needs' etc often being used interchangeably. Broad definitions arguably erode the meaning and usefulness of such terms. Some authors have drawn attention to how overuse of terms such as 'quality of life' render them meaningless. Wolfensberger (1994) for example, asserts that 'quality of life' "drips with surplus meaning ", and that the current eclecticism causes more confusion than illumination. Wolfensberger concludes that a concept used in such different ways by researchers, policy makers and practitioners to mean whatever one chooses, is a "hopeless term" and one that lacks scientific credibility.
2.39. Recent literature reviews and other documents provide a clear definition of 'multiple and complex needs' as referring to the most excluded people, those at the extreme end of a continuum of need. This literature review however is not intended only to focus on the extreme end of need, as this would run the risk of not addressing issues of community-based prevention and inclusion, as discussed by Rankin and Regan (2004). For the purpose of this review the terms 'multiple' and 'complex' will be considered to represent both breadth and depth of need, and the following chapters will examine literature that covers the general and particular needs of a wide range of client groups in this light.
Key points - Chapter Two
- There is no consensus of definition of multiple and complex needs in the literature and the terms are applied variously
- It is often assumed that 'complex needs' is a 'given', or is commonly understood. Many authors use terms such as complex needs and multiple needs without defining them
- While the use of the terms 'complex' and 'multiple' separately have been used to describe a broad canvass of need, the terms singly and combined are also used to describe the 'extreme end' of a continuum of need
- The varied ways in which studies conceptualise and apply the terminology of multiple and complex need reflects the aims and values of researchers and policy makers.
- When these terms are used to highlight intense and interconnected needs associated with particular conditions, this can be seen to reflect the medical model and individualised treatment strategies and approaches to meeting gaps.
- When used in the sense of multiple and interconnected forms of disadvantage, this is in tune with the social model focused on inclusion/exclusion, striving to assess the ways in which structures and systems fail to meet need, and what institutional and organisational and strategic changes are required to meet gaps.
- When used to indicate degrees of intensity, complexity and interconnecting of need, the terms are used to indicate a framework for policy prioritisation and for guiding service strategies and resource allocation. How the terminology is used therefore has implications for how we see the gaps in services, what needs to happen and best practice.
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