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Executive Summary

Study aims

1. Given the increasing attention to 'multiple and complex needs' in policy and practice, the aim of this research was to review the evidence from the research literature on service provision for people with multiple and complex needs. Five key objectives of the literature review were: to examine definitions of 'multiple and complex needs' and to identify client groups who are identified as having these needs; to explore people's awareness of services and options; to explore factors affecting access to services; to examine service users' experiences; and to identify best practice in service provision and lessons for implementation.

Methodology

2. The wide range of potential groups to be covered and the diversity of services to address their needs, required the literature review to focus on: literature covering multiple and complex needs from Scotland and the UK since 1999; existing reviews and summaries of findings; good practice guidance issued by the Scottish Executive and UK Government Departments; published and grey research literature, including needs assessment reports and research identifying both service user experiences and barriers to accessing services or gaps in these. Before conducting literature searches 15 key informants were consulted, and, during the project, a focus group was conducted with research and policy staff within the Scottish Executive in March 2006.

3. Searches of relevant databases, internet sites and publication search sources were carried out in 2 stages. The initial trawl of literature sought to identify definitions of multiple and complex needs from the literature. The subsequent phase of searches broadened the focus to address the wider research interest in service pathways in terms of the experience of people with multiple and complex needs in terms of 'getting into services, getting on within services and getting through or moving on within and through services. Additionally the review sought to clarify associated best practice.

4. Given the diversity of the material covered and the breadth of its focus this review makes no claim to full comprehensiveness in tackling the subject of meeting the needs of people with multiple and complex needs (however defined), but it did strive to identify systematically the key themes running through the literature.

5. The review covered 3 broad categories of literature that address multiple and complex needs, which overall focus on overlapping themes. First there was a body of literature that explored service and policy implications of issues of multiple and/or complex needs, much of which focused on particular client groups. Secondly, a larger body of literature used the terminology of multiple and complex needs but did not focus specifically on related policy and practice implications. Thirdly, a far wider body of literature was referred to that addressed relevant themes without explicit use of the terminology of multiple and/or complex; rather they referred to 'multiple disadvantage', 'multiple problems' or 'severe exclusion' and linked this with the context of poverty, dependence on welfare benefits, and the impact of homelessness, serious health problems and impairment, literacy problems, substance misuse, criminal justice issues and/or in some instances, institutionalisation and leaving institutions. Overall the study focused mainly on the first 2 groups of literature.

Key findings

Multiple terminology

6. A plethora of terms are linked with the concepts of 'complex' and 'multiple' needs, used by various disciplines, sometimes specifically, and often interchangeably. They include: 'multiple disadvantage', 'multiple disabilities', 'multiple impairment', 'dual diagnosis', 'high support needs', 'complex health needs', and 'multiple and complex needs'. This multiple usage was confirmed by preceding reviews carried out by Rankin and Regan (2004) and Keene (2001). Rankin and Regan usefully identified the essence of complex needs as implying both breadth of need (more than one need, with multiple needs interconnected) and depth of need (profound, severe, serious or intense needs). Additionally, they use the term 'complex needs' as "a framework for understanding multiple, interlocking needs that span health and social issues".

Who has multiple and complex needs?

7. A very wide range of people were identified as having multiple and complex needs. These included:

• People with mental health problems, including 'severe and lasting' problems
• Those disadvantaged by age and transitions - young and older people
• Those fleeing abuse and violence - mainly women and refugees
• Those culturally and circumstantially disadvantaged or excluded - minority ethnic groups; travelling people
• People with a disability, including profound, severe or long term impairment or disability and those with sensory disabilities with 'additional needs'
• People who present challenging behaviours to services, for example in schools, within residential services/ hostels or in their own neighbourhoods
• People who are multiply disadvantaged by poverty, poor housing, poor environments or rural locations which mean they are distant from services
• People who are 'marginal, high risk and hard to reach', who may be involved in substance misuse, offending and at risk of exclusion (Watson, 2003)
• People who have a 'dual diagnosis' of mental ill health and substance misuse, or of other combinations of medically defined conditions.

Key patterns in service responses

8. Chapters Three and Four of the report focused on how people with multiple and complex needs fare in terms of awareness, access and experience of the services that they need. Some key problems identified included:

Awareness: There was regular identification of 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 face particular difficulties in accessing information and advice
• There are shortfalls in interpretation and translation services and a lack of awareness among individuals and agencies about how to access these
• Other groups with multiple and complex needs, such as people with dementia, people with sensory impairments (Scottish Executive, 2003b), and people with multiple and profound intellectual disabilities also often do not know what services there are and face barriers to accessing services
• Current advice services tend to treat problems in isolation; advice can be hard to access and referral mechanisms inefficient
• Many people, including people with additional needs and their carers, are daunted by complex service systems.

Accessing services:

• Many people with multiple and complex needs do not gain access to the services they need or end up in inappropriate services
• Poverty and inequality impact on disadvantage in accessing services, while low aspirations (by professionals and service users) also limit opportunities
• Disabled people generally experience significant barriers to access
• People with multiple and complex needs may be excluded from services because of criteria governing service use ( e.g. age restrictions)
• Some targets undermine the will to work with clients with multiple needs
• Lack of referrals between agencies and inappropriate referrals limit access
• Long waiting lists worsen problems for those with multiple/complex needs.

Experience of services:

• People with multiple needs may be 'defined out' or excluded from services for organisational reasons, e.g. their needs are assessed as 'too complex or challenging' for the service(s) in question
• Some feel staff attitudes are insensitive and unhelpful which prevents trust
• Inflexible service criteria (eg. age cut off points) prevent continuity of care
• Service users and carers are often unaware of entitlements to assessment
• Many receive repeated assessments which is stressful
• A 'silo mentality' works against co-ordination of support and risks people receiving inappropriate services with poor outcomes
• Medical 'dual diagnosis' labels limit the range of options
• Assessment, support planning and resources can be inadequate for people affected by transitions, thus delaying access or limiting people's rights
• When service users and carers disagree with professionals' assessments, options appear to be constrained by resources or limited vision
• People from minority ethnic communities, refugees and asylum seekers do not always receive sensitive assessment or access interpreters and translators
• Non-engagement with services occurs because of dispositional, organisational, situational and structural factors, including: lack of trust and confidence, cultural insensitivities, services' systems or cultures being incompatible with life-styles, poverty impacts, and people not being ready to address problems. In turn, non-engagement may exacerbate low level problems and exclusion. For some, persistent exclusion may result, interspersed with crises related to health or homelessness for example.

Summarising the constraints and exploring what service users want

9. Overall the research highlights that:

• At government level there is a lack of strategic prioritisation and fragmentation, while local commissioning systems are often fragmented
• Local service networks may involve lack of co-ordination and poor information flow, a lack of support for participation, agency divides and culture clashes
• At service level, responses may be limited by narrow vision; short-time frames, crisis-driven assessment and communication blocks
• Wider constraints on positive responses include stigma and resource constraints.

Good practice and lessons for implementation

10. While people with multiple and complex needs appeared to be significantly disadvantaged, the service responses they valued were broadly similar to those valued by service users in general. They range from person-centred approaches that treat people with respect and sensitivity, to the scope for accessing appropriate and responsive services in a co-ordinated way ( Chapter Five). Moreover, a significant range of good practice was identified in Chapter Six. This included:

• Targeted and outreach information provision in accessible formats
• Single access points and 'one stop approaches'
• Services that address 'whole person' needs and do so in partnership
• Personalised and person-centred service responses
• Co-ordinated and integrated assessments
• Outreach services that seek out and stick with 'hard to reach' groups
• Community development and empowering approaches, such as peer education, that promote participation and engagement
• Professionals with a remit to link and co-ordinate support services such as key workers, link workers or service navigators can help minimise the impact of service fragmentation
• Creative examples of joint work, partnerships and joint training.

Beyond the good practice identified, the policy developments and practice guidance covered in Chapters Six and Seven emphasise the following:

• Support, care or pathway plans as useful tools for moving forward
• IT and information sharing
• Involving service users (and carers) at all levels of service planning, development and delivery, alongside access to advocacy
• Recognition in target setting that 'soft' rather than hard or quantifiable outcomes may be most appropriate for clients with multiple/ complex needs.

11. Key elements of good practice are outlined further in Chapter Seven and Appendix 3, including in regard to:

• Partnerships and agencies developing strategies to target improved responses to people with multiple and/or complex needs
• Developing more innovative and imaginative joint approaches
• Targeted information and advice about services
• A range of approaches and resources including highly supported longer-term accommodation
• Access to direct payments
• Maximising participation and involvement and access to advocacy
• Committed, creative approaches to resource pooling.

12. Finally, this study found that multiple needs affect a wide range of people to varying degrees and with varying consequences. Overall, while the report illustrates a variety of excellent practice, more generally it presents a bleak picture of the quality of responses obtained by people with multiple and complex needs, who continue to be significantly disadvantaged and excluded. It emphasises significant gaps in services and support and stresses the need for more innovative and creative joint strategies, as well as partnerships that involve service users in increasing the effectiveness of the service response. It recognises that some people will not be ready to engage with what is on offer, but urges persistence. It also recognises significant shortfalls in funding that must be addressed to meet needs.

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