Scottish Government

The Development Department of the Scottish Executive commissioned this literature review to inform its Multiple and Complex Needs Initiative which aims to improve services for people with multiple and complex needs. The purpose of the literature review was to collate and evaluate existing research evidence to understand the processes through which people with multiple and complex needs engage, or do not engage, with services to resolve their problems. A key focus of the review was to identify good practice in the light of the evidence. This paper summarises the main lessons learned from the review and details several good practice case studies.

Main Findings

Who has multiple and complex needs?

• There was no consensus in the literature on definitions of the terms 'multiple' and 'complex', which are used interchangeably, often without definition. In this review the terms were applied to signify breadth or range of need, and depth or intensity of need (Rankin and Regan, 2004) ¹.
• Much of the literature focused on particular client groups with co-occurring or additional needs, for example: people with mental health and substance misuse problems; women who have experienced domestic abuse and have additional needs such as mental health problems; vulnerable older people with multiple needs, and disabled people with profound and multiple needs.

Finding out about and accessing services

• The literature suggests that many service users find it difficult to discover what services are available. Reasons for low awareness include: poor provision of information about services and their remits; lack of information in formats accessible to groups such as young people, people from black and minority ethnic communities and those with literacy difficulties. Additionally, studies highlighted poor or inappropriate referrals between services.
• Even when people were aware of services they often experienced difficulties in accessing these because of: low self esteem and low expectations of the ability of services to help them; professionals' low aspirations for people with multiple and complex needs; and services' long waiting lists, restricted hours and rigid eligibility criteria that can cause exclusions.

Experiences of services

• Services tend to be fragmented into very narrow areas of expertise and this often determines how services respond to clients' needs. These service delivery 'silos' often result in people using a number of services without finding what they need or want from any of them.
• Some studies found services to be culturally insensitive and some service users also perceived services to be discriminatory towards them. Both factors resulted in low engagement or complete disengagement with services.
• People with multiple and complex needs may be 'defined out' of the remit of services for organisational reasons, because they are assessed as being 'too complex' or 'too challenging for services'. Some authors stress that poor outcomes are due to service failures rather than to service users' unwillingness to engage, or to the nature of their needs.

About this study

Background

This review was commissioned to inform the Scottish Executive's Multiple and Complex Need Initiative which aims to improve public services for people with multiple and complex needs (referred to as ' MCN' hereafter). The initiative is currently funding:

• 14 pilot/demonstration projects that will explore how services in different settings cater for those with MCN.
• An overarching evaluation of the pilot projects which will identify key, generic lessons for improving service delivery to those with MCN.

Concerns about the adequacy of service responses for people with MCN have arisen on a number of policy fronts. These include: work carried out by the UK Government's Social Exclusion Unit which identified particular groups as being least likely to benefit from policies to promote inclusion; the 'personalisation of services' agenda (Leadbeater, 2004); and developing better public services in Scotland through the Modernising Government Fund (Scottish Executive, 2003 & 2006).

Aims and objectives of this study

A key focus of the review was to identify good practice in the light of evidence on how people with MCN access, engage with and move through services.

The specific objectives of the review were:

• To define ' MCN' and identify the groups most likely to require support.
• To explore their awareness of, and access to services.
• To examine their experiences of, and pathways through services.
• To identify best practice in service provision for people with MCN.

The study brief excluded issues relating to access to employment and employability, and a detailed focus on housing provision, as these were being addressed elsewhere.

Method

Structured searches were conducted of social policy and community care-related databases and other sources of literature on policy and good practice. Interviews were also conducted with key professionals and experts on their understanding of the issues.

Key Findings

The research is structured around key stages of service use, exploring the pathways people with MCN follow through services. The review identified a range of promoting and inhibiting influences on their experiences of accessing, engaging with and moving through services, and on the outcomes of their service use. These are highlighted below. Specific examples of services identified from the literature as representing good practice (in the authors' view) are highlighted in shaded boxes throughout the paper.

Who has multiple and complex needs?

There was no consensus in the literature on definition of the terms 'multiple' and 'complex', which are used interchangeably and often without definition. In this review the terms were applied to signify breadth or range of need, and depth or intensity of need (Rankin and Regan, 2004) ¹. These themes were broadly reflected across the literature.

A wide range of people were identified as having MCNs. Much of the literature focused on particular client groups with co-occurring or additional needs, for example: people with mental health and substance misuse problems; women who have experienced domestic abuse and have additional needs such as mental health problems; vulnerable older people with multiple needs, and disabled people with profound and multiple needs.

Accessing services

The review found that poverty and inequalities stemming from social class, geography, gender, ethnicity and disability, were key constraints on awareness of and access to services. The evidence suggests that many services are inappropriately targeted, co-ordinated and resourced to respond to MCN, including where additional needs result from low literacy, English as a second language ( ESOL), poor mental health or disabilities.

Providing appropriate information: Learndirect is the largest publicly-funded online learning provider in the UK. Aiming to improve take-up rates by Bangladeshi and Pakistani people with low levels of English fluency and literacy, it advertised the service on Asian TV and radio and in the Asian press. Additionally, an advice line was provided in the relevant languages and this was promoted through community outreach. The service was also made available in Somali (Social Exclusion Unit (2005), Improving Services, Improving Lives: Evidence and Key Themes). www.socialexclusion.gov.uk.

Low aspirations amongst professionals and service users also limit opportunities. Potential users often lack awareness of and help to access the support, housing, benefits or health services they need.

Reaching out to service users: Glasgow City Council Sign Language Interpreter Service ( SLIS) has developed an initiative for deaf, hearing impaired and deafblind people, who often experience extreme difficulties in communication and accessing information. As there is a huge shortage of qualified interpreters the system aims for effective use of limited resources. A website has been developed containing essential information about the SLIS, with the key element being an on-line booking service. This gives the deaf person easy, 24-hour access to booking the services of a sign language interpreter. (Scottish Executive (2003), Modernising Government Fund Round One Final Report).www.scotland.gov.uk.

Additionally, people with MCN can be excluded from services because of restrictive access criteria, such as in relation to age. Sometimes services assessed people's needs as being 'too complex or challenging' for the service(s) in question. The reason, therefore, that some people with MCN do not access and engage with services, may be that services' systems prevent them from doing so, rather than due to a lack of willingness to engage on their part.

Notably, studies that focused on people from minority ethnic communities, refugees and asylum seekers found that these groups often did not receive sensitive assessment or access to interpreters and translators. There were often lengthy delays in gaining access to the support that they needed.

Responding to cultural needs: Family Support Workers in Tower Hamlets were able to advise, explain, contact and escort families to other secondary services. A match of cultures between worker and service-user was said to provide shared aims and goals, break through language barriers for non-English speakers and establish mutuality of feeling. Workers, all of whom were women, were often from the same community. Shared ethnicity and gender cemented staff-user relationships, helping to inform interventions that were sensitive to the cultural beliefs and views of the family.

The role of trust was significant, particularly as service users had felt insecure about involvement with other social and health service professionals, due to child protection issues (Gray B (2003), 'Social Exclusion, Poverty, Health and Social Care in Tower Hamlets: The Perspectives of Families on the Impact of the Family Support Service' in British Journal of Social Work, 33 (3), 361-80).

However, elements of good practice were identified in many of the studies. These included:

• Providing information in accessible formats that are age, gender and culturally sensitive, and easy to understand.
• Reaching out to people, including through pro-active and persistent outreach services.
• Enabling access when the service user is ready to engage without lengthy waiting times and enabling easy access to services through: user friendly opening hours; convenience of location; the use of IT and 'one stop' service models.
• Easy access points and integrated front-line services for people with MCN, particularly in deprived areas.

Experiences of using services

On balance the literature presented a bleak picture of the quality of service responses to people with MCN and of service users and carers' experiences of services. However, there was evidence of a growing consensus on good practice and a drive towards creative solutions.

Many studies identified factors that constrained positive responses by services and agencies to people with MCN. In particular the fragmentation of services and a 'silo' mentality often led to a focus on one presenting problem, or on a medical 'dual diagnosis' label.

Service fragmentation often prevented 'whole person' needs assessments, positive joint work and properly co-ordinated service responses. Additionally, assessment, support planning and resources were inadequate for people affected by transitions, such as moving on from hospital, care or hostels. The outcomes of such inadequacies were: delayed access to services; unmet needs; unsustainable accommodation and support arrangements; and a lack of recognition of people's rights.

Providing support to access a range of services: Revolving Doors Agency Link Workers were established with the aim of providing whole needs support to prevent offenders from going on a continual journey through the revolving door to prison. Concentrating on those who are typically hard to reach, they targeted clients with mental health problems, drug dependency, homelessness and poor housing. They offered help with making benefit claims, access to health services, assistance with accommodation, as well as general advocacy and emotional support. They worked in teams and on the principle that there were no closed cases. (Moran and O'Shea, 2003, Revolving Doors Agency (2003); quoted in Rankin and Regan, 2004).

The literature presented an overall picture of professionals' assessments and service users' options often being constrained by resources and commissioning systems, or by limited vision on the part of service providers. In turn this can cause tensions between service users and carers, service users and professionals, or between professional groups.

The study found a range of reasons for non-engagement with services, including: lack of trust and confidence; cultural insensitivities; incompatibility of services' systems or cultures with people's life-styles; poverty impacts; as well as some clients' lack of readiness 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.

In sum, people can be in touch with several services without getting what they need or want from any of them.

Enabling access to services: a one-stop approach: The Matrix, South Tyneside is a positive example of a complex needs service for young people. Co-located under one roof is a network of key providers, including a drugs action team worker, an arrest referral worker, representatives from both health and housing authorities, a mental health nurse and a link to Connexions. There is a common assessment procedure and the team makes collective decisions about which worker is most appropriate to work with a particular client. Although setting up this one stop shop was not without its challenges, group training and regular team meetings have helped staff at the Matrix to negotiate potential problems of different professional working practices (Rankin J & Regan S, (2004) Meeting Complex Needs. The Future of Social Care. IPPR. www.turning-point.co.uk.

Regarding what service users do want, the review found that what service users with MCN valued was being treated as an individual with respect and sensitivity, and the scope to access and use appropriate and responsive services in a co-ordinated way. The preferences of people with MCN were broadly equivalent to those of service users generally, although addressing stigma was a key additional issue.

Personalising services: Aberdeenshire Council's Teaching Internet Use 'What's IT all about' project provides a free introduction and continued teaching in IT and the Internet for people over 50. A recurring comment from individuals enquiring about the project was that due to a disability, such as loss of hearing or arthritis, community group classes were impossible to join. To overcome this 25 people in the area are now visited by volunteers and find that individual attention in their own homes has transformed their ability to grasp computing. (Scottish Executive (2003), Modernising Government Fund Round One Final Report).www.scotland.gov.uk.

Broadly, factors identified in the literature as promoting positive service experiences fell under the following two categories:

1. Personalising Services by:

• Responding in ways that are culturally appropriate and non-stigmatising; that make service users feel listened to and valued; that assess and address peoples' needs as a whole, and that 'stick with people', even if appointments are missed or engagement was otherwise lacking.
• Providing adequate interpreting and translation services where needed.
• Ensuring service users (and, where appropriate, carers) have a say in and can influence services at both individual and collective levels.
• Enhancing individual choice and control through direct payments and advocacy.
• Increasing collective involvement through community development approaches.
• Using a person-centred and holistic approach to service provision that addresses the person's whole needs.

Pooling budgets: The London Borough of Redbridge operates a £40 million Section 31 Agreement (Health Act 1999) covering services such as social work, health visiting, school nursing, speech and language therapy, child and adolescent mental health services, educational psychology and educational welfare services. Pooling of budgets with the local PCT has smoothed the process of agreeing residential placements in particular, and has made supporting parent and children's visits less complicated. There is more clarity about the resources available to the partners and their priorities. Partnership working has become easier as the pooled fund is seen as being available to the population of children who receive a service from this part of the Children's Trust. Partners are more worried about whether the needs of the child concerned meet general criteria for a service and are less worried about whether their needs are primarily health, social care or education related. (Department of Health Green Paper (2006), Independence, Well-being and Choice: Our vision for the future of social care for adults in England).www.dh.gov.uk.

2. Co-ordinating service provision by:

• Enabling people to engage across the range of required services and improving joint working, by establishing a link worker role (also termed service navigator case manager, community matron, etc).
• Promoting good communication and coordination between the different services involved to improve the response.
• Aiding positive joint working through: joint planning; joint training; single shared assessment (so that needs are only assessed once); care pathways or plans; joint protocols; and pooling budgets to address whole needs across service divides.

E-Care, single shared assessments and information sharing systems: Developed as a major part of the Joint Futures Agenda, the Modernising Fund Projects set about improving the quality and comparability of information available to: support the delivery of services; promote information sharing; improve service co-ordination and integration; and to prevent service users being faced with repeat requests for information. Examples include: services for older people with mental health problems and Single Shared assessment by NHS Lanarkshire along with N & S Lanarkshire Councils (Scottish Executive (2003), Modernising Government Fund Round One Final Report).www.scotland.gov.uk.

Moving on from services

Overall, the literature did not provide a systematic picture of long term service outcomes for people with MCN. Nor did it offer a sound basis for determining specific service conditions and practices that enable people with different configurations of MCN to exit positively from services.

The literature did, however, indicate that some people ( e.g. older people or those with mental health problems who have long term chronic health conditions) are less likely to exit services. Another consistent theme was that there is an overall lack of systematic and joint planning for after-care and move on from services.

Ensuring a say at an individual level: The "In Control" approach enables social care budgets for individual clients to be disaggregated and an annual budget to be allocated directly to the families for use in creating the best care packages. They can choose which support workers to employ, what hours they should work, and can use money flexibly to spend on treats, outings, different modes of transport and technology at home. First, however, there is usually an intensive process of consultation between the client, their families, and social workers, to draw up a care plan centred on the person, their needs and aspirations. This is the basis for organising both formal and informal care. The families involved in the In Control pilots found that planning has to be collaborative, very down to earth and colloquial and is never a one off. Plans have to be adjusted and adopted as people change and they grow in confidence, or their needs change. By aiding people to review the care package they have and to identify the care package they would like, this approach gives them a voice in shaping their care. However having a say requires that there is some choice available in relation to services. One mother on the In Control programme said, "I can make 10 pounds go a lot further than the local authority." ( DEMOS (2005), Personalisation and Participation: The Future of Social Care in Scotland).www.care21scotland.com.

The literature also indicated elements of good practice in supporting people to move on successfully from services. These included:

• Addressing peoples' needs at their own pace.
• Pro-active, flexible and creative approaches to providing support.
• Services that have active links with other services and that pro-actively use the wider service network as a key resource in meeting MCN.
• Ensuring appropriate aftercare to prevent relapse e.g. for those with substance misuse problems.
• Measuring progress in relation to soft rather than hard, quantifiable outputs.

Ensuring a say at collective level: Glasgow Homeless Network ( GHN) produced a report: Where will they go for the Homelessness Partnership? This outlined homeless people's opinions of homelessness, hostels and homelessness services in the city. The report was based on consultation with homeless people and hostel residents to ensure that their views were heard and taken into account in the hostel de-commissioning and re-provisioning process. GHN subsequently established a Service User Involvement project to engage service users who want to get involved in homelessness planning or services. ( www.ghn.org.uk).

Emerging lessons for planners and commissioners

Key lessons from the literature for policy makers, planners and service commissioners can be broadly categorised under the following:

1. Improving service planning

• At central government level, the issue of MCN must have a clear strategic priority.
• The funding constraints on access to housing and support must be addressed, particularly to meet the needs of those who require flexible outreach support of varying intensity and those with profound needs who require higher levels of residential-based support.
• Comprehensive, holistic needs assessment and planning and joint approaches are at the core of effective responses to people with MCN. This applies to strategic planning as well as to support planning for individuals.
• Local commissioning systems need to be less fragmented and better informed about the population with MCN to develop an appropriate and flexible range of provision.
• Monitoring the outcomes of people's service engagement needs to be improved to better inform planning.

Tools to measure distance travelled: St Mungo's uses a tool called the 'Outcomes Star', while 'Off the Streets and Into Work' uses one called the 'Employment Map'. Both tools involve an initial assessment carried out jointly by a key worker and a homeless person who is using the service. St Mungo's assessment maps the individual's situation in eight areas: personal responsibility; living skills; social networks; substance use; physical health; mental health; meaningful use of time; and accommodation. Referring back to the initial assessment map later enables the individual and the service provider jointly to clarify the individual's progress. Responses to trials of this tool have been very positive. One manager who has used the Outcomes Star said: "It's a useful tool for working with people with complex and challenging needs that enables us to track positive changes that could have been missed". A service user said: "It's a good way of understanding how I see myself. Each time I take the Star test, I can see a small step forward" (Social Exclusion Unit (2005), Improving Services, Improving Lives: Evidence and Key Themes). www.socialexclusion.gov.uk.

2. Better co-ordination of services

• Service networks need to be comprehensive, well-co-ordinated and better informed about needs and service developments.
• There need to be committed, creative approaches to resource pooling.
• 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.
• IT and information sharing strategies and protocols can benefit people with MCN by improving service responses and monitoring
• Joint training can promote positive cultures, better understanding of service users' needs and of other agencies' remits and approaches.

Care planning or pathways: A DEMOS report outlines the following case study of a service user who "has a folder (…) used to structure her support. The ideas in the folder range from every day issues about medication and food to more general themes that include life goals, education, employment and values. Items in the folder can be taken out or replaced when the person being supported, along with their support worker, decides to do so. This allows for the plan to be flexible and adapt as the lives of the individuals concerned change" ( DEMOS (2005), Personalisation and Participation: The Future of Social Care in Scotland).www.care21scotland.com.

3. Approach to service delivery

• The impact of stigma needs to be addressed persistently and jointly in relation to many of the groups covered in this study, and notably in regard to asylum seekers/ refugees and people with mental health problems.
• Services should adopt an ethos that views 'the problem' as one that is caused by inadequate service responses rather than by 'difficult clients'.
• Service users (and carers) should be involved at all levels of service planning, development and delivery.

The Multiple and Complex Needs Initiative is being funded by the Closing the Opportunity Gap ( CtOG) fund. For more information on the initiative and on CtOG, see http://www.scotland.gov.uk/Topics/People/Social-Inclusion/17415/opportunity.

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The research report, "Closing the Opportunity Gap: A Literature Review on Multiple and Complex Needs" which is summarised in this research findings is a web only document and is available on the publications pages of the Scottish Executive website at www.scotland.gov.uk/Publications/Recent

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