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Chapter Five: Summarising the gaps

Introduction

5.1. The report so far has focused on how people with multiple and complex needs access, experience and move on within and from services. This overview has generated an emphasis on deficits and gaps in services, rather than on existing and potential good practice. This chapter aims to summarise these gaps and deficits and the associated problems that the literature has identified in regard to joint working, and to clarify related influences and implications. Before moving on to focus specifically on good practice in Chapter Six, this chapter will conclude by considering what the literature tells us about what service users want.

The gaps

5.2. Overall, the problems and their recognition are not new; nor are they specific to Scotland or the UK. What emerged from the literature however is that there is a renewed attempt to clarify and tackle the systems and other influences that undermine positive responses.

5.3. Reinforcing the findings to date, Rankin and Regan (2004) identify 4 key gaps in services for people with multiple and complex needs:

• Services fail to recognise the inter-connected needs of individuals and how their needs relate to the influences of poverty and social exclusion
• Services are fragmented and even those that strive to be holistic are often organised around single needs or issues
• Planning to meet needs often does not address housing and employment issues
• Area based initiatives to tackle social exclusion are often disconnected from social care policy.

5.4. And showing that similar deficits are found beyond the UK, the Human Service Department, Australia (2003a) identified:

• Ineffective service responses, including lack of or poor collaboration and communication among services and staff
• Difficulties in locating suitable accommodation
• Absence of a case manager or difficulties with their case manager was a key issue
• No appropriate day services
• Services are fragmented
• "Funding criteria do not allow for services to extend beyond the brief".

5.5. Below we discuss a number of key themes in relation to the gaps identified in this review. On the service provision side these include: a lack of strategic prioritisation; fragmentation at national and local levels, in local planning and commissioning and in professional assessments and support; indications of a lag in pursuing the benefits to be gained from joint working or what is termed 'collaborative advantage'; poor communication and information flow; lack of support for user participation; limited approaches and narrow vision and short-term time-frames and crisis driven approaches.

5.6. Additionally, on the service user side particular needs and circumstances may result in language and communication blocks, and some people may be reticent to disclose in the context of stigma. While stigma is a cultural and external influence rather than an individual issue, another major external constraint on services and service users' opportunities is that of resources.

5.7. In sum the balance of these influences and constraints is such that problems stem from service systems, approaches and resourcing rather than with the multiple and complex needs of service users. The constraints are considered in sequence below.

Lack of strategic prioritisation

5.8. The 'Mind the Gaps' report ( SACDM and SACAM 2003) commented that despite recent positive policy developments focused on improving mental health services, these have not yet led to:

• Consistent improvement across the country in collaborative planning, or in the delivery and accountability of services for people with co-morbidity, including those with mild to moderate ill health
• Professional consensus on the role of secondary mental health services in the treatment of personality disorder in Scotland
• Systematic Scottish Guidance and notable advances in service provision. There is a lack of systematic service provision for people who have survived earlier traumatic experiences. ( SACDM and SACAM 2003).

5.9. While many authors have identified a similar lack of strategic prioritisation as an inhibitor of the effective joint work required to address multiple and complex needs well, there has emerged an expanding body of relevant Guidance produced by the UK Government, the Scottish Executive and generated from research reviews.

Fragmentation - central and local

5.10. The account of the literature so far stresses that fragmentation is the key driver of problems that include partial and inconsistent planning and service responses.

At central government level

5.11. Funding regimes are fragmented (Petch et al, 2000). In England, for example, drugs issues are funded via the Home Office due to links with the crime and disorder agenda, whereas alcohol issues are the responsibility of the Department of Health and reflect health and medical agendas, while domestic violence services for survivors are funded through the voluntary sector etc (Humphreys et al, 2005).

At legislative level

5.12. While current legislation increasingly emphasises the need for joint approaches and cross-referencing, it must be recognised that services working with people with multiple and complex needs have to consider a fragmented though interconnected legislative framework, with individual pieces of legislation relating to particular needs (for example, the Disability Discrimination Act 1995; the Mental Health (Care and Treatment) (Scotland) Act 2003; NHS and Community Care Act 1990; the Children (Scotland) Act 1995; the Community Care & Health Act 2002; the Homelessness etc (Scotland) Act 2003 and the Asylum and Immigration Act 2004).

5.13. While legislation encourages and enables co-ordinated planning at local level in all these areas, the framework for pooled finance and joint commissioning remains under-developed, and Stalker et al (2003) point out that the Health & Social Care Act (2000) in England allows stronger 'flexibilities' than the Scottish legislation in regard to these.

At professional assessment and support level

5.14. The common syndrome is that a variety of professionals may each be regularly in contact with each client, with each of them addressing people's needs through the lens of their particular specialism. Moreover people go through multiple assessments - 'assessed to death', while poor outcomes result, such as inappropriate hospital discharges to hostels.

5.15. On the other hand it does not follow that the fact that people receive several different support services is always perceived negatively. Some people with multiple needs, and particularly at points of crisis or turning points, appear to value the input of various services, provided that these are co-ordinated (Rosengard and Scottish Health Feedback 2000). One young woman, who had been a long-term drug user and been working as a prostitute, was assisted to move on positively by a variety of voluntary and statutory agencies; she commented - "its nice. It shows someone cares" (Society Guardian: 12.07.06.) ⁵.

At local planning level

5.16. The composition and scope of particular partnerships may exclude key players - for example where social work, health and education are involved in joint planning, but the absence of housing representation undermines assessment of housing implications (Beresford and Oldman 2002; Stalker et al, 2003). Other instances of such exclusion have been where education was not involved in community care planning (Dean et al, 1999) or where voluntary agencies or service users/ local residents have been excluded from area improvement partnerships (Mayo and Taylor, 2002).

Commissioning

5.17. Commissioning is the process through which strategic and funding bodies (local authorities and health boards and central government agencies, such as Communities Scotland, for example) authorise an agency to develop or carry out a service. The process of commissioning requires the strategic assessment of needs to be addressed; planning to meet these needs; the contracting or purchasing of services and the monitoring of the effectiveness of these. Given the growth of a health and social care market since the 1980s and the increasing need for a diversity of community based services since the de-institutionalisation brought about by the implementation of the NHS Community Care Act in 1993, there has been a proliferation of providers. Commissioning is therefore a competitive process.

5.18. The difficulties with the commissioning process have been identified by Rankin and Regan (2004), Hudson (2005) and others:

• Commissioning is not sufficiently comprehensively strategic and needs assessment and planning has been partial and ineffective, with commissioners focusing on purchasing and supervising services, rather than on strategic aspects
• Boundaries of health and social care commissioners and providers are not consistent and commissioning partners may use different funding models, such as 'block' (several services) or 'spot' (particular services) purchasing
• Commissioning has been conducted in a fragmented way, and the re-structuring of services has impeded co-ordination, although there has been movement towards joint commissioning
• Funding itself is fragmented, with sources being from both central and local government
• There is not always a 'needs-led' approach, nor a holistic approach
• There is uneven consultation and involvement with the voluntary sector. Voluntary agencies and housing associations often feel excluded from the process of planning and developing services (Edwards, 2003; Rosengard et al, 2001)
• Preparing bids is a demanding, resource intensive process and small providers find it difficult to compete
• Contracts are generally for one to 3 years, and this inhibits planning and increases costs for providers
• More attention is required to local workforce development needs.

5.19. At a strategic level therefore Keene states ,

"Professionals (like planners) assess predefined needs in their specialized populations, using criteria and priorities which are pertinent to their specialisms. They do this in isolation from each other" (Keene, 200,1 p.6).

5.20. Additionally Hudson (2005) points out that user-led commissioning, such as direct payments, may be persistently in tension with centralised commissioning, as here service users determine and purchase the services provided.

Problems in creating collaborative advantage

5.21. Obtaining 'collaborative advantage' when working in turbulent contexts is a key driver towards joint working, although this is not without its problems (Huxham, 1996).

Power and commitment

5.22. Agency representatives around the planning table often lack the power and authority to make decisions, or they are unevenly matched in their delegated authority and commitment (Dean et al, 1999; Petch et al 2000). Moreover, progress can be undermined by personnel changes across partner agencies (Flint et al, 2001; Dean et al, 1999), and despite evidence of some positive outcomes, some partnerships are formed too late to arrest problems, including processes of area decline (Flint et al, 2001).

Discordant remits and culture clashes

5.23. The tensions that impede effective partnership working have been found to result from:

• Incompatible agency boundaries and time-scales
• Agency remits inadequate to the complexity of the problems, particularly in high stress areas (Flint et al, 2001)
• Communication problems arising from contrasting agency cultures, perspectives, practice and knowledge bases (Ambrose, 2001; Mayo and Taylor, 2002; Humphrey et al, 2005)
• The poor briefing of agency representatives on other agencies' roles and responsibilities. (Dean et al, 1999)
• Commissioning structures and systems that encourage competition rather than collaboration between agencies (Rankin and Regan, 2004).

Co-ordination problems and information flow

5.24. Today, agencies are extensively required by statutory funders to assess needs for planning and funding purposes, and to do so in a holistic and comprehensive way, whether in regard to community regeneration/ community planning (Ambrose, 2002) or to address community care or homelessness-related needs (Balloch and Taylor; 2002, Keene, 2001).

5.25. Joint planning requires partners to research and pool information on needs and demand for services, to map the existing supply of services, to assess critical gaps and develop a strategy or programme for addressing these gaps.

5.26. Overall, the joint planning experience highlights problems experienced in accessing required information, and indicates that information sharing is poor. (Petch et al, 2000; Northmore, 2001 p 97; Ridley Associates, 2004). Keene (2001) similarly stresses that the lack of accurate inter-agency data inhibits both the development of informed planning and a systematic context for developing "inter-professional or multi-agency working" (Keene, 2001, p32).

5.27. Other problem areas identified in relation to information flow include that agencies working together often have a lack of knowledge about the relevant service network, there may be a lack of openness and trust between agencies working with the same person, and joint work is inhibited by a lack of protocols on matters such as information sharing and confidentiality (Keene, 2001, Rankin and Regan, 2004).

5.28. It is notable that recent Government reviews and good practice guidance, which will be addressed in the following chapter, have increasingly absorbed these arguments.

Lack of support for user participation and choice

5.29. In Chapter Four we saw that the literature identified movement towards a greater involvement of service users in needs assessment at the individual level. However, progress appears far slower in regard to empowering and meaningful user participation at a strategic level. Again the pace has been set by the developmental approach in the learning disability field in Scotland (Scottish Executive, 2000).

5.30. Access to the user led purchasing of care such as direct payments has been uneven across client groups and generally slow in Scotland compared with UK wide, as highlighted in Chapter Two. Arguably, the lower take up in Scotland reflects political and cultural issues as well as a lack of appreciation of their role amongst professionals and service users. Pearson (2006) suggests that resistance has stemmed from the mixed economy of care and the concerns raised by union workers and some practitioners, which have been more prominent in Scotland than in the rest of the UK (Pearson, 2006). This indicates the need for a co-ordinated promotional strategy to promote equitable access, and this issue will be addressed in Chapter Six.

Limited approaches and narrow vision

Silo mentality

5.31. Stemming from fragmentation, 'silo'-bound approaches encourage singular problem responses rather than a holistic, whole person approach (Keene, 2001; Rankin and Regan, 2004; Baron, 2005; Humphrey et al, 2005 and Noel et al, 2005).

5.32. Narrow frames of reference in turn limit the scope and continuity of help for people with complex needs, "with little regard to co-occurring problems" (Keene, 2001: p52).

5.33. Solutions may be standardised and based on existing resources and past experience, rather than creative approaches to meeting individual needs. This can lead to reliance on large residential units and uniform day services, which are only currently in the process of reprovisioning (Edwards, 2003 & Petch et al, 2000).

Skill & competence deficits

5.34. Skills and competence deficits emerged throughout the literature in regard to professionals' awareness of particular and multiple needs. A critical need emerged for awareness training for staff to understand the spectrum of people's needs and their interconnectedness, and to appreciate the perspectives and impact of other professionals working with the same clients (Humphreys et al, 2005; Rosengard et al, 2002).

Short-time frames and crisis-driven assessment

5.35. We have seen that people's emotional traumas do not emerge in initial assessments and that often addressing practical needs is the priority (Okitikpi and Aymer, 2003, Hopkins and Hill 2006) . Additionally, where a crisis is a precipitator to assessment, this may on one hand widen the scope of the assessment (multi-agency case conference), while on the other it may be dominated by the need to obtain a crisis resolution (George, 2000 a,b).

Language and communication blocks

Minorities

5.36. Language can be a critical barrier to receiving services in minority ethnic communities (Thoburn, Chand and Procter, 2005). One service user quoted commented "if you can't speak English they won't deal with you properly - its degrading" (O'Neale, 2000, p15, quoted in Thoburn et al, 2005).

Communication difficulties

5.37. Although there is a significant chance that some people with learning disabilities will develop mental health problems, they may be less likely to be diagnosed with depression or emotional disorders. Russell et al (2000) suggest that diagnosis of clinical depression may not be triggered until there is a crisis, such as a violent incident, while family and friends also frequently fail to spot depression.

Client's reticence to disclose in the context of stigma

5.38. Stigma may inhibit people's willingness to disclose their problems and the influences of these in the assessment process, so emphasising the need for skilled and sensitive assessment interviews, as well as confidence-building in the support services on offer is needed.

Resource constraints limiting outcomes

Inadequate & inappropriate resources

5.39. An underlying constraint on achieving positive outcomes identified throughout the literature relates simply to the inadequacy and inappropriateness of the range of resources on offer to meet multiple and complex needs. Clearly this is a key issue for all service users. A senior social work manager quoted in one study commented that community care assessment is budget driven (Barr et al, 2001) and other studies suggest that resource constraints may restrict positive accommodation and support outcomes for people with complex needs, as reflected in the following quote:

"Moving towards individualised solutions for everything is inevitably more expensive. One care package increased from £5,000 to £85,000 for example - it's just not sustainable for everyone" (PiP Chair quoted in Ridley Associates, 2004, p80).

5.40. Resource issues were often a source of tensions between agencies that seek access to accommodation and support for clients and targeted service providers. Many studies highlight that resolution for individuals can depend on advocacy by family members, referring agencies or by independent advocates who facilitate a more flexible approach on the part of the service provider.

5.41. In the longer-term, resolution of these deficits may require joint strategic planning and increased resource allocation to meet specific gaps, such as small and personalised supported accommodation services, 'wet hostels' where people continuing to drink alcohol can stay, or services with staff that are trained to work intensively with people with multiple or complex needs, whether they are living in ordinary housing, with families, or in residential services.

5.42. Whilst learning disability services have set the pace in terms of person-centred planning, outcomes are still dependent on joint planning and resources. One strategic needs assessment study for 3 local authority areas in regard to people with a learning disability as well as additional needs, found good practice alongside gaps and deficits (Ridley Associates, 2004).

• People with more complex needs were in the minority in supported employment services and most likely to be in specialist day centres or day hospitals
• 'Short breaks', recognised as a key coping strategy for families caring for someone with "profound and complex needs", were rarely available and insufficiently flexible
• Inequalities in access to primary health care by people with learning disabilities were exacerbated by the presence of additional needs
• A lack of suitable housing and support provision for people with more complex needs resulted in a some people being placed out of the area at high cost.

5.43. Similar deficits have been highlighted by other research in relation to different client groups:

• A lack of accessible accommodation and/ or specialist equipment for people with disabilities (Prewett, 2000)
• A lack of suitable short break caring for families of children with complex health needs, because of a lack of suitable carers with the right training and background, coupled with the fact that some young people require the presence of 2 carers (Prewett, 2000)
• A lack of gender sensitive and empowering services for people with learning disabilities and others with multiple problems who self-harm. This requires recognition that agencies' approaches may increase self-harm, understanding people "in the context of their whole lives" and ensuring that they have the opportunity to determine ways forward themselves (Warner, 2005, p6; Community Care 'best practice', 2006).

5.44. Additionally, a wide spectrum of gaps and deficits in service provision for homeless people with additional support needs has been identified through strategic reviews conducted for local authorities, and for partners in the development of homelessness strategies under the Homelessness (Scotland) Act 2001 (Rosengard et al, 2001, 2002, 2003) In sum, the options for homeless people with additional needs were restricted by the lack of access to suitable resources, as well as by other service deficits, including the need for:

• Improvements in information and advice services
• Person-centred, holistic approaches and related training
• More pro-active and targeted outreach support (including streetwork)
• Additional, more intensive and more flexible housing-related support services
• Specialist residential resources to meet particular needs and
• Increased and better joint inter-departmental and inter-agency working.

5.45. Focusing on the ways in which people with disabilities are excluded from full citizenship, Morris (2005) quotes a parent of a 19 year old daughter who has significant cognitive impairment, who said:

"The lives of people like Elinor hold up a mirror to the values of our society. You've just got to look at the life of someone who has a label of 'profound and multiple learning disability' to see that society's reaction to her has been driven by an unwillingness to make sufficient resources available to enable her to have as good a quality of life as possible" (p37).

5.46. Overall, the literature highlights the need for a full range of service options to be on offer to those with multiple and complex needs. While in relation to most care needs good practice has emphasised ordinary living and community-based models of care, residential care services and supported accommodation may be relevant for some groups, and particularly so to meet the transitional needs of, for example, women fleeing abuse, vulnerable young homeless people or those leaving care who are not ready to move into independent tenancies (Rosengard et al, 2002, 2006).

5.47. In sum, the account of the literature so far presents a bleak picture of typical service pathways and experiences for people with multiple and complex needs. It suggests:

• A high variability in terms of the quality and personalisation of response
• That power in determining outcomes rests largely with professionals and officialdom
• That bureaucratic structures, together with fault lines in systems and professional divides, limit innovation and flexible responses, and
• That both professional planning and service user options and choice are highly constrained by available resources and regulatory constraints.
• That there has been a lack of strategic recognition, prioritisation and targeting of multiple and complex needs, although this appears to be changing.

What do people with multiple and complex needs want from services?

5.48. It is important at this stage to reflect on what the literature tells us about the things that people with multiple and complex needs value about services and to draw on what appeared on the whole to be limited evidence of their positive experiences. Jenny Morris's excellent summary of what "people want from services", based on a survey of 83 people with physical disabilities and mental health problems and 25 interviews (Morris 2004), resonates with the experience of service users covered in this study and she similarly refers to "sparse evidence" of positive experiences. This offers a lead to representing the preferences of people with multiple and complex needs, based on the findings of the wider literature review. In doing so we supplement Morris's key findings by drawing on other literature.

5.49. Overall the literature review indicates clearly that service users would want:

A personalised, sensitive and holistic or comprehensive approach

• Staff who listen and believe and treat users with respect, valuing their views (Morris, 2004; Rosengard and Jackson, 2005; Crisis, 2005)
• Staff to treat them as "a whole person" and consider the range of their needs, while at the same time treating them as a person and "not as a disease" - a reason that homeopathy and alternative therapies were valued by some (Morris 2004; Crisis 2005)
• Services to be person-centred and flexible or 'open-ended' rather than the service user simply having to 'fit in' - services that 'stick with you' over time (Morris, 2004; Rosengard, et al, 2002; Crisis, 2005)
• Staff to be non-judgemental - "they accept you as you are" (Morris, 2004)Holistic assessments that take account of the range of users needs (Morris, 2004; Rosengard et al, 2002; Crisi, 2005)
• Not to have to repeat your story over and over again to different professionals - this can call up the pain (Morris, 2004; Rosengard et al, 2002; Rosengard and Jackson, 2005)
• Staff who understand and have positive attitudes to service users' particular needs and circumstances (Rosengard et al, 2001, 2006)
• Services to recognise that barriers to access and to moving on may affect people's mental health and physical health (Morris, 2004; Hudson et al, 2005)
• That mental health professionals responding to people with a physical disability as well as mental health needs take account of medical treatment for their physical condition (Morris, 2005)
• That extremely problematic personal circumstances such as physical access needs (Morris, 2004) or having had to flee another country or to escape abuse are taken into account (Thoburn et al, 2005; Perry, 2005).

Access to ordinary living, independence and positive opportunities

• Easy access services, including: prevention and early intervention (Scottish Executive, 2004b); information and advice; easy access technology; and decent accommodation (MacDonald, 1999; Morris, 2004; Hudson et al, 2005)
• Responsive advice and support (Morris, 2004), including ordinary housing and support models (the preference of most) and access to a range of services in the community with shortened waiting times
• An adequate income (Hudson et al, 2005)
• Opportunities to contribute to the community (Hudson et al, 2005)
• Support for informal social networks (Hudson et al, 2005)
• Safe and secure environments.

Co-ordination of their case

• Someone to co-ordinate the work of different professionals and counteract the negative impacts of fragmentation (Morris, 2004; Rankin and Regan, 2004; Rosengard et al, 2006)
• That staff communicate with and work with other professionals to meet their needs (all studies).

5.50. Having focused on the interconnected problems in service provision that undermine opportunities for people with multiple and complex needs, we now turn our attention to developing a positive service framework for addressing multiple and complex needs. In this pursuit Chapter Six will explore key themes of good practice identified in the literature. Chapter Seven will conclude this discussion with a summary of good practice principles, drawing out the implications for policymakers and service providers.

Key points - Chapter Five

Key problems and constraints on effective responses to the needs of groups identified as having multiple and complex needs were explored. These included:

• The lack of strategic prioritisation at central government level, although there is an expanding body of relevant guidance
• Service fragmentation is at the root of poor responses to multiple and complex needs. This can be seen to reflect the drivers of bureaucracy, specialised professionalism and the multiplication of services. The consequences of fragmentation are evident in funding regimes and legislation focused on particular needs; in professional assessment and support systems and in local planning and commissioning systems
• Impediments to partnership and joint work limit collaborative advantage in responding to multiple and complex needs. This occurs where key players are not represented, or there is a lack of strategic commitment at the joint planning table; when there is inconsistency in terms of agencies' planning time-frames, boundaries and resources; if partners remits are too narrow to address multiple and complex issues; when there is inadequate information about each others' roles and remits and where commissioning systems promote inter-agency competition rather than collaboration
• Despite the movement towards joint planning and the growing recognition of the need for joint working, lack of co-ordination and poor information flow inhibits both strategic planning and effective care planning for all groups with multiple and complex needs
• Features of funding and commissioning systems, organisational systems and cultures interact to undermine effective joint working and outcomes. These include: discordant agency remits, professional and agency divides and culture clashes; limited approaches and narrow vision; short-time frames and crisis-driven assessment
• There are indications that the movement towards participatory approaches in care planning for individuals are not matched by progress in collective participation of people with multiple and complex needs as service users and citizens. Additionally there is scope to increase awareness of rights to complain. This will require leadership at policy and managerial level
• Stigma, which may be a wider cultural issue may inhibit appropriate and full disclosure of people's problems, and this needs to be acknowledged by providers. Cultural and political issues - politics with a small 'p' - also appear to have inhibited the take-up of direct payments
• While language deficits can inhibit appropriate service responses for minority groups, other communication blocks limit positive outcomes for people with disabilities, including learning disabilities, sensory impairments and dementia. These problems can be overcome with sensitivity and appropriate resources.

5.51. The chapter then focused on valued aspects of services, as identified by service users in the literature. These ranged from person-centred approaches that treated people with respect and sensitivity, to the scope to access a range of responsive services in a co-ordinated way.

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