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Chapter Seven: Conclusion and implications
Introduction
7.1. This concluding chapter summarises the research, its key findings and its implications for policy and practice. The review's core aim was to explore what the literature tells us about the experience of people with multiple and complex needs in regard to their pathways through services. To this end the literature review drew on the fields of social policy, tackling social exclusion and disadvantage and meeting community care needs, as outlined in Chapter Two. Specifically the review focused on people's experiences of accessing services ( Chapter Three), using services and moving within and through services ( Chapter Four). The report then summarised the key gaps and deficits identified in service responses to people with multiple and/ or complex needs and considered what service users want ( Chapter Five). Finally, Chapter Six explored evidence of good practice and related guidance to establish a framework for consolidating good practice and bringing about service improvements for people with multiple and complex needs.
7.2. This final chapter will now summarise the key findings and lessons for policy and practice improvement, building on the key findings from the literature, outlined in the preceding chapters. To avoid repetition these will be presented in table format. First however, some general observations and points will be made in respect of the study and its findings overall.
Comment on the research
7.3. The core research focus was on people who have 'breadth and depth of need' (Rankin and Regan, 2004) and their experiences of obtaining and sustaining the assistance and support that they need to achieve positive outcomes.
7.4. This study of the experiences of people with multiple and complex needs as service users has been challenging because of its interest in and coverage of a wide spectrum of needs and experiences at a time when new developments in policy and guidance proliferate.
7.5. Implicit within the review of the literature were important differences in the depth or intensity of some people's needs, as reflected in the varying intensity of disability and illhealth. There were more obvious differences in the multiples of needs affecting people, with some having a duality of needs and others having a wide spectrum of needs. Additionally, the configuration of people's needs changed over time, reflecting aspects of motivation/ disposition and the interplay of service responses and structural influences.
7.6. One notable gain from the wide scope of the study was that despite the wide variation in needs covered, common themes emerged strongly across the range of people's experience. Despite the range and diversity of the needs and experiences covered in the study, the literature review overall found some considerable consistency in the ways in which the key gaps and deficits, on one hand ( Chapter Five), and what constitutes good practice on the other ( Chapter Six), are perceived by policy makers and practitioners.
7.7. Moreover consistent messages that emerged from the literature was that systemic and cultural aspects of service provision were key constraints on positive experiences and outcomes of services. The dimensions of restricted funding and bureaucratic commissioning, the fragmented structures and systems of service provision alongside professional divides, cultural and political (small 'p') influences on professional approaches (system rather than user-led), all interact to undermine the positive joint working required to achieve positive experiences and outcomes.
7.8. Additionally, the literature indicates that the presence and consequences of multiple and complex needs, which in themselves magnify disadvantage, are further exacerbated by poverty and social and economic exclusion. In this light, some writers stress that improving opportunities for people with multiple and complex needs requires a social justice and equalities policy perspective (Rankin and Regan, 2004).
7.9. The wide scope of the study however, means that the authors cannot make claim to full and comprehensive coverage of multiple and complex needs, their interconnections and their implications.
Addressing the gaps and deficits
7.10. While some of the service gaps and deficits identified were specific to responses to multiple and complex needs, others had wider relevance. Key points emerging from the literature were that:
- Overall there appeared to be a poor service response to multiple and complex needs which reflected the notion of the 'inverse care law' - those in greatest need often fare worst
- Poor co-ordination in planning and service delivery, together with a lack of networking and linking services that play a role in responding to multiple needs, created the context for people to fall between the service cracks or to experience a 'revolving door'
- The fragmentation of services, uni-dimensional or 'silo' vision and poor collaboration were 3 key institutional influences on poor outcomes
- Fragmentation is re-inforced by the structures and processes of commissioning and by fragmented and short-termism in funding regimes
- Deficits in the service response ranged across access to information and to services; communications; assessment; support and care planning and delivery
- Monitoring the use of services and of outcomes for people with multiple and complex needs and service use, itself tends to be fragmented and so does not provide a useful basis for planning
- The ethos and approach of individual agencies/ services and their systems, rules and criteria made a huge difference to the quality and outcomes of engagement
- Wider influences on poor services included evidence of resource constraints and inappropriate or unimaginative resources that inhibited creative solutions
- A lack of informed access to advocacy appeared to be a critical gap and could clearly make a difference to services received and outcomes.
- The extent to which services are networked with agencies working across the range of needs, and to which joint working is intrinsic to their service approach, made a positive difference.
7.11. Despite these issues some service users felt very positively about some of the services they had received and had experienced positive outcomes. Moreover, many examples of good practice emerged from the literature.
7.12. The following Table seeks to highlight good practice implications further by identifying the key factors that inhibit effective engagement with services, those that promote positive engagement and outcomes and service implications for improving the response to people with multiple and complex needs.
Table 7.1. Summary of good practice - Working with people with multiple and complex needs
Inhibitors of effective engagement | Factors promoting positive engagement and outcomes | Service implications |
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Core Themes |
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Poorly targeted services Inappropriate resources | Personalised services, including methodology of person-centred planning with holistic approach | Personalisation Holistic 'whole person' approach Service user-led Consult carers Staff training needed Joint work Resource implications |
Fragmented approaches Closed cultures/ inward-looking Partial responses | Joint work and effective partnerships and joint strategies/ action plans are required ( e.g. Scottish Executive 2001c) | Agencies/ managers to promote and support networking, partnerships and positive joint work Promote through staff induction/ training Promote 'open' service culture |
Centralised service models e.g. centre-based services Standardised approaches Narrow focus of needs assessment Lack of support or negative response at service reception | Link/ liaison and co-ordinating roles e.g. area co-ordinators Pro-active, responsive and flexible services that enable positive response to needs Positive reception/ referral | Consider need to promote access through linking and co-ordination mechanisms/ roles Develop new approaches and obtain resources in partnership Sustain positive, pro-active and collaborative service culture |
Bureaucracy and fragmented services | Community development approaches Easy access points/ integrated front-line services for people with multiple/ complex needs in deprived areas particularly, but also more generally | Promote and sustain community involvement pro-actively Prevention orientation Resources |
Standardised commissioning systems | Empowerment through enabling self-determination e.g. through direct payments (Department of Health 2005b) | Policy prioritisation Promote by maximising information and its take-up to a wider range of groups |
Lack of access e.g. rural areas Also to accessible housing and services | Advocacy | Policy prioritisation Support to access advocacy Targeted investment e.g. housing and adaptations |
Lack of prioritisation and consistency of service user involvement and involvement of carers | Maximising service user involvement, as currently focuses at individual more than collective level | Promote consistent & sustained support for individual and collective involvement of service users and carers |
Stigma and negative images, sometimes supported by policy messages e.g. refugees | Momentum to tackle stigma and promote positive images | Prioritisation, including at political level |
Specific Themes |
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Information and access |
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Inability to get reliable, adequate information about services that may be available (Scottish Executive, 2006b) | Good information about service provision in local areas and about what services actually do | Review way information is made available, ensuring also that it is culturally and age- relevant and available in different languages and formats |
Inappropriate referral systems, up to 28% of mental health referrals from primary care to specialist services are inappropriate (Social Exclusion Unit, 2004 b, p39) Failure to make appropriate referrals means that one problem often gets lost where people have complex or multiple needs (Humphreys, 2005; Scottish Executive, 1999) | Appropriate referrals including for those affected at times of service-related transitions e.g. from child to adult services and from generic adult to specialist older people's services; or from institutions to community services. | Professionals need knowledge of available services, their remits and protocols for referral. One stop approaches to service provision. Joint work at both planning and operational level. |
People with mental health problems who are transferred from generic adult services to older people's services often face discontinuities of care just at the point at which their health needs are becoming more complex (Social Exclusion Unit, 2004b) The same problems apply with other service transitions | Holistic approaches | Seamless services Joint working Flexible application of service access criteria Flexible funding arrangements |
Long waiting lists ( SACDM & SACAM, 2003); Audit Commission, 2002b) | Timely access to services when the service user is ready to engage (Edwards, 2003; Homeless Link, 2002) | More efficient and effective referrals Increased resources to reduce waiting times |
Inequities due to lack of access to translation and interpreting | Resourcing skills development to enable ease of access to translation and interpreting | Assess/ address deficits and gaps |
Appointments and opening times which do not suit people's lifestyles | Suitability of access times in relation to, for example, appointments and opening times ( DOH, 2006) Ability to 'drop in' if problems arise and to re enter service if have failed to keep previous appointments (Rosengard et al, 2006) | More responsive services with flexible outreach and access to evening and week end services as required |
Promoting Positive Engagement |
|---|
Fragmented delivery - 'pillar to post' | Integrated front-line 'one stop' services where people can receive all needed services (or information about them) within the one location e.g. Connected Care Centres (Rankin and Regan, 2004; Turning Point 2005) | Co-location of services. Turning Point suggest this is particularly necessary in areas of deprivation to address inequalities. |
Services that are inaccessible to people without their own transport | Locally based services that are easily accessible ( DOH, 2006) | Strategies to maximise locally based services including in areas of multiple deprivation |
Multiple assessments and people "assessed to death" (Rosengard et al, 2002) | Single shared assessments that mean people's needs are only assessed once (Turning Point, 2005; Scottish Executive, 2004a; Scottish Executive, 2006d) | Introduction of Single Shared Assessments across services |
Care plans imposed without adequate consultation and without taking account of a person's total needs including social, housing, educational and employment and leisure needs (Hudson, 2005) | Personalisation and service user participation in developing a care or support plan that takes a holistic view of people's needs (Demos, 2006; Scottish Executive, 2006b) | Holistic, 'whole person' approach needed that includes the service user and their carer in determining care plans Staff training needed |
Failure to provide sufficient levels of, or appropriate support | Provision of more intensive and flexible support for people with multiple and complex needs (Scottish Executive, 2003 b,c; Department of Health, 2005 a,b; Scottish Executive, 2006e) | Increasing emphasis on prioritisation of needs according to levels or 'tiers'. People with multiple and complex needs placed in higher tiers and targeted to receive appropriate, flexible and comprehensive services |
Service users (whether geographically based or otherwise sharing common characteristics) are best placed to know the type of service they need (Turning Point, 2005; Scottish Executive, 2006b) | Service user involvement in shaping service delivery in addition to personalisation of care plans (Turning Point, 2005) | Increased use of needs audits. |
Service users unable to access assistance to make their views known | Advocacy to clarify options & provide support (Scottish Executive, 2001a; Neale, 2004) | Increased commissioning of advocacy services |
The various problems that people face in finding out what services are available to meet their needs. Also any constraints that prevent access to services, and the struggles, time and effort spent in doing so. | Link roles to enable people to find their way to and through different services. This role is described variably in the literature: e.g.key workers ( SACDM & SACAM 2003, 2003, 2005c); case managers ( DOH, 2006); service navigators (Rankin & Regan, 2004); family support workers (Gray, 2003) | New ways of working for many professionals and services. |
Workers who do not understand the cultural and value base of service users and who have difficulty in communication where service users do not have English as a first language | Culturally, linguistically and gender appropriate services where the worker and service user share common understandings (Gray, 2003; Hodes, 2005) | Ethnically diverse workforce or access to interpreters Access to gender specific services |
Passive response by services to service user inaction or "non-engagement" Poor follow up, e.g. where responses to dropping out from a service are limited to sending a reminder letter (Audit Commission, 2002b) | Active review and active outreach Active strategy and follow up where service user fails to attend appointments | Positive approaches to crisis prevention Assertive outreach and procedures in place to follow up clients who disengage/are in danger of doing so |
Service users not feeling valued | Agencies and staff engage service users and carers and consult throughout Agency culture values participation and taking service users' and carers' views on board | Promote and sustain participative service culture |
Moving forward and outwith services |
|---|
Lack of systematic and joint planning for after-care and move on from services | Recognition of range of needs Joint planning for move on Resources targeted for follow on support | Aftercare to be planned as an integral part of service provision |
Lack of recognition of range of needs and that some need follow on support for crisis prevention or response | Not all service users will exit services e.g. older people with long term chronic conditions are less likely to do so While some service users with multiple needs will exit services, many require aftercare, particularly to avoid lapses in e.g. substance misuse ( SACDM & SACAM, 2003) | Aftercare to be planned as an integral part of service provision |
Monitoring focuses on hard quantitative outputs ( e.g. work done) and short-term outputs ( i.e. numbers in tenancies) | Monitoring also focuses on 'soft' outcomes that identify what has improved or changed for service users as a result of agency interventions | Monitoring and evaluation to be prioritised within staff teams for reasons of accountability, best practice and positive outcomes Monitoring is built in to service review processes |
Lack of monitoring and evaluation that incorporates service users views | The role of monitoring and the accountability of services to be explained to service users in service delivery process Service users feeling their views and experiences are valued and that they have a key role to play in influencing the development of services | Services develop strategies for involving service users in evaluation and monitoring, building on wider experience Range of methods can be employed e.g. service user consultative forum; service user representation in management Resource implications for developing and sustaining focus on monitoring/ evaluation and on involving service users will need assessed |
Implications - improving the response
7.13. Drawing on the experience of those with multiple and complex needs identified in this review, improving the response will require: information and advice about options by advisers who take a comprehensive approach and are sensitive to issues of multiple and complex needs; personalised, creative approaches; independent advocacy as a matter of right; assistance with navigating complex service systems; a focus on maximising individual and collective forms of participation and empowerment; responses that are sensitive to ethnicity and culture, and opportunities to try again. More specifically, the literature suggests that service providers and policy makers need to address the following issues in addressing the needs of people with multiple and complex needs:
Strategic recognition in policy and practice
7.14. Given that people with multiple and complex needs are some of the most vulnerable and excluded:
- Strategies to improve the response to people with multiple and complex needs should recognise that, while the problems faced by people with multiple and complex needs may reflect structural influences and wider needs in the community, these are likely to be magnified by additional difficulties
- Joint strategic planning should review how far commissioning and services on the ground promote social inclusion, an ordinary life and least restrictive options for people with multiple and complex needs.
Service planning and commissioning
Reviewing needs and services
- Blocks to accessing services must be addressed by all relevant providers. These include: poor built environments; low awareness of entitlements; long waiting lists and slow responses to requests for help; inadequate referral systems; stigma; lack of confidence to seek help, and limited service resources
- More knowledge is required about multiple and complex needs amongst some groups in particular in Scotland. There is a clear need to obtain a better picture of the needs of minority ethnic groups in Scotland given recent population movements, of groups such as gypsy travellers and of new minorities, such as immigrant workers. Additionally, research could usefully focus on the perspectives of people with multiple and complex needs and on updating good practice in Scotland
- Rather than prioritise more research, there is a need for local joint assessment of gaps in services, followed by joint strategy development targeted to alleviate the blockages faced by people with multiple and complex needs. In the longer-term the evaluation of the Multiple and Complex Needs Initiative pilot projects may help to inform such planning
- Commissioners and providers should assess how best to engage services users in such joint assessments, building on statutory-voluntary partnerships
- Local joint planning should consider whether planning would be aided by an inter-service monitoring framework focused on outcomes for people with multiple and complex needs.
Commissioning
- Commissioners should ensure that appropriate services are in place to meet the needs of those with multiple and/ or complex needs
- They should further ensure that service targets do not mitigate against providing services for those with multiple and/ or complex needs who may need intensive support over lengthy periods of time
- In many instances, relevant targets for this client group may be soft targets that measure "distance travelled" rather than hard, quantifiable targets
- Options such as direct payments and other direct funding mechanisms that help to maximise user empowerment or 'self-determination' should be available to everyone, including those with multiple and complex needs.
Resources
- Meeting the needs of people with multiple and complex needs is resource intensive. Sufficient resources need to be available if people's needs are to be addressed holistically and if vulnerable peoples' revolving journey through various agencies, without resolution to their problems, is to be halted.
Access
- There need to be clear points of contact and easy access to user-friendly services
- As far as possible there should be open access criteria to services
- One stop, integrated and community based services should be considered.
The service response and communication
- This should be respectful, sensitive and pro-active
- Communication should be creative, skilled and be tailored to individuals.
Joint working and joint training
- Joint working needs to be prioritised at all levels, including in regard to strategic planning, service commissioning and at operational level
- Active and positive collaboration and partnerships are required to acknowledge the relatedness and interconnectedness of people's needs
- Joint training will be critical to awareness and understanding of different service roles, cultures and priorities
- Consideration should be given to the model of 'peer educators', as a route to empowering service users and towards 'educating' professionals
- Joint budgets and resource pooling will be necessary to overcome barriers of service protectionism and to ensure flexibility of response to identified needs.
Services and Models
Social model and meeting individuals' needs
- Services should promote opportunities for an ordinary life and social inclusion
- Services should develop an explicit strategy for counteracting the 'inverse care law' - ie service responsiveness to complex and multiple needs should be seen as a 'litmuss test' of general service performance
- Inclusion objectives are most likely to be achieved by services based on a 'social model', with a personalised and person-centred approach, rather than a 'medical'/diagnostic model, which is likely to re-inforce the fragmentation tendency and stigma
- Services and support should treat people with dignity and respect and strive to understand their individual (and multiple) needs.
Access to information and advice
- Services must ensure that clear, relevant information is available about what they provide and make sure that the information is in appropriate languages and formats to meet the needs of those people who have greatest difficulty in finding out about services/ and or benefit least from public services. These include people with low literacy levels, people from ethnic minorities, disabled people and people with long term health conditions, young adults with complex needs and excluded older people
- Information and advice should be accessible and all relevant information, advice and support should be accessible through single access points. This requires different services, such as health, social work, housing and benefits advice to collaborate. Locating such access points in areas of deprivation can promote inclusion in these areas and overcome, for example, transport difficulties
- People with multiple and complex needs need access to independent advocacy.
Assessment
- Services should assess the extent to which service users have multiple and/ or complex needs and are users of other services. Information should be shared between services on shared clients
- People's whole needs must be assessed and addressed holistically and in a person centred way. This should include social needs, such as the need for appropriate accommodation, meaningful activity and social networks. For community care groups ( e.g. people with learning disabilities, people with mental health problems, older people) single shared assessments should be used and information shared between relevant services, whilst ensuring client confidentiality.
Support to address multiple and complex needs positively
- Services should adopt an ethos that views 'the problem' as caused by poor and inadequate service responses rather than by 'difficult clients'
- Support or care plans are needed that fully involve the service user (and where appropriate carers) in determining goals and priorities. These should be realistic and regularly reviewed in the light of changing circumstances. Such plans would form the basis of assessing service outcomes on an individual basis
- A named individual should be responsible for co-ordinating service users' support and ensuring that all the help they need, is accessed. Varied terminology is used in the literature for such a professional including: a care or case manager; a link worker; service navigator or in the case of NHS services, community matrons
- Given fragmentation, the role of some kind of 'link role', 'broker' or 'service navigator' may be essential. This will not lessen the need for independent advocacy and continuing support for people with multiple and/or complex needs to enable them to articulate their needs
- Active and intensive outreach models that seek people out, can make a difference
- Services should "stick with" people and recognise that some will miss appointments, relapse and/or at times may be reluctant to engage with services; continuity will be critical for some people
- Services should recognise that time limited interventions which seek to "cure" people of their problems are often ineffective if aftercare support is not available, and if other needs such as for decent accommodation and meaningful activity have not been addressed. This is particularly so where there are dangers that people might relapse as in cases of addiction and poor mental health
- Joint working is crucial as is co-ordination, collaboration and co-location to counteract 'silo' effect and stigma issues
- All the above have training implications and joint training can be a catalyst to good practice in pursuit of improving opportunities for people with multiple and complex needs.
Concluding points
7.15. This literature review is part of a continuing process and a first stage in a programme of work under the Scottish Executive's Multiple and Complex Need initiative that aims to identify lessons for improved service provision through a range of pilot projects. The evaluation of the initiative will build on and complement the learning from this review.
7.16. In terms of the range of themes covered in the literature that addresses multiple and complex needs, two apparent gaps emerged: firstly there was little specific focus on gendered experience, whether in relation to service users or carers, and secondly, the focus on the views of people with multiple and complex needs on their pathways in and through services appeared to be under-developed. The former would require gender awareness in research and monitoring, while the latter would require in-depth, user-focused and longitudinal research as well as user involvement in monitoring and evaluation.
7.17. The review has found that multiple and complex needs affect a wide range of people to varying degrees and with varying consequences. While the literature covered evidenced both excellent and improving practice, more generally it presented 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 emphasised significant gaps in accommodation, advice, support, welfare benefits, monitoring and opportunities for inclusion. It stressed the need for more adventurous and creative joint strategies and partnerships that maximise the involvement of service users in increasing the effectiveness of the service response. It recognised that some people will not be ready to engage with what is on offer, but urged persistence. It also highlighted some significant shortfalls in funding of housing and support that must be addressed to meet needs, for those who require flexible outreach support of varying intensity and for those with profound needs who require higher levels of residential-based support.
7.18. Finally, there is a point about terminology to consider. While the research team have consistently applied the terminology of multiple and complex needs, it is worth commenting that there were some reservations in doing so because the terms are potentially stigmatising to service users. Most service users would not choose to go through a door labelled 'multiple needs' or 'complex needs'. Agencies should consider whether the term 'additional needs' is a better way of signifying the presence of breadth or depth of need.
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