Outcomes Assessment for People with Long-Term Neurological Conditions: a qualitative approach to developing and testing a checklist in integrated care.

Integration and outcomes in national policy

Improving the integration of services across boundaries in order to deliver improved outcomes for service users, especially those with long-term conditions, has been a major concern of policy and system planning for some years.

Outcomes

As described earlier in this chapter, the policy around outcomes tends to focus on the outcomes of interventions by different care sectors, as witnessed in the assessment criteria included in the National Outcomes Frameworks (NOFs). 54–56 While these are likely to be of relevance to people using health and social care services, these measures are essentially defined in line with professional, service, sector and policy-makers’ priorities.

Our research does not focus on the outcomes of service provision per se but, rather, aims to discover what outcomes people using ‘integrated’ services want to achieve and whether or not these services are able to assess these outcomes in practice.

Stage 1 – understanding the context and identifying outcomes

• Documentary evidence was analysed and interviews were held with staff (e.g. PCT commissioners and senior managers, service-level managers and front-line staff) to help understand the context in which integrated teams were based.

• Interviews were held with carers of people with LTNCs to help understand how they were included in integrated service provision.

• Interviews were conducted with service users to identify outcomes.

Stage 2 – developing and implementing an outcomes checklist for use in practice

• Service-user interview data were analysed to identify the outcomes that they wanted to achieve.

• A summary list of outcomes was developed.

• Working with the teams in each case site, the list of outcomes was developed into a checklist that they could use in practice.

• Teams implemented the OC as part of their usual assessment processes.

• Teams’ use of the checklist was monitored.

Stage 3 – evaluating the use of the checklist

• Staff were interviewed about their views on the checklist and its utility in practice.

• Service users were interviewed about their experience of the checklist being used in their assessment and about the items included on the checklist.

Service users, carers, representatives from voluntary sector organisations who sat on the project advisory group and the SPRU Adult Consultation Group (see Appendix 8, note a) advised on the research process for this study. Presentations and progress updates were given in meetings held regularly throughout the research and, as well as giving general advice throughout the period of research, they gave specific advice on documentation, recruitment, analysis and interpretation of findings. Between meetings, members of the project advisory group were also sent project newsletters to update them on progress and ask for advice on specific issues.

Case studies

The case study approach ‘focuses on the circumstances, dynamics and complexity of a single case or a small number of cases’. 75 A case is a single unit in a study and can be, for example, a person, a profession or an organisation. The case study approach is distinguished from other approaches, in that it does not attempt to control or exclude variables. Rather, it is a holistic approach that enables the complex nature of an issue to be explored. 76

As Yin notes, a case study is particularly useful when the study aims to investigate ‘a contemporary phenomenon within its real-life context, especially when the boundaries between phenomenon and context are not clearly evident’;76 for example, in circumstances where the relationship between organisational structure, approaches to practice or policy, and outcomes for people using those services, are unclear. The case study approach, therefore, is particularly suited to this research where the ability of people with LTNCs to achieve the outcomes they want may be determined by several factors. For example, having to deal with and navigate multiple services that are governed by many different policy directives might have as much impact as their level of ‘impairment’ or personal approaches to self-management.

Using a case study approach does not preclude any particular method of data collection, but for the purposes of this research, only qualitative methods were used. These comprised in-depth interviews with different stakeholders at the different stages of the research, group interviews, documentary analysis and field-note analysis.

Approach to analysis

We used the framework approach to data management and analysis. This is typically used in applied policy research where there are specific objectives or information needs. As such, frameworks can be data driven or led by a priori issues, or a mix of both. The approach also facilitates systematic data management and allows audit trails of the data management process.

Qualitative data are managed in a theme-by-case matrix, known as an ‘analytical framework’. 82 There are four stages of data management. First, researchers familiarise themselves with the data, and identify themes and key issues. Based on the identified themes and any other a priori issues, an index of themes is constructed, resulting in the analytical framework. Visually, this looks like a matrix or chart, with cases as rows and themes as columns. Data are then indexed according to which theme(s) in the framework they relate to. Finally, the indexed data from each case (e.g. participant, focus group) is summarised onto the chart under the relevant theme(s) (known as ‘charting’).

Where appropriate, we triangulated different sources of data. For example, in stage 1, we used both interview and documentary evidence to help understand organisational and wider contextual issues. When we took interview field notes, we also used these to help inform analysis of data from that interview.

Ethical and research governance review

Before we undertook data collection, the research methods and all documentation were reviewed and approved by the appropriate ethical and research governance committees as outlined in Chapter 1.

Identifying and recruiting case sites

We invited PCTs to participate if they had a NRT that was based in a community setting. When we were planning the research, four PCTs, with whom we had worked in a previous study agreed, in principle, to take part in this study. These case sites reflected different approaches to integration at a strategic and/or commissioning level, different population profiles and different levels of rurality/urbanisation.

However, when the research was funded, one PCT was no longer able to take part because staff in the NRT did not have the capacity to be involved in long-term, in-depth research. In this site, health and social care was integrated at an organisational level, had a younger than average population with high deprivation and was classed as urban. To replace this case site, we wanted to include a site with similar characteristics, but the integrated structure of the PCT was our primary concern.

We identified several PCTs which had a NRT and integrated structural arrangements from benchmarking data that we had collected as part of a previous research study around LTNCS and integration. 50 We approached all of the sites with these characteristics (n = 11) and one of these agreed to participate in the research. Details of the four participating case sites are reported in Table 1.

As Table 1 shows, we chose sites that had different population profiles, different organisational arrangements and different levels of rurality, so that we had possible factors on which to base comparisons. Further information about the case sites and associated structures are presented in Chapter 3.

Identifying and recruiting neurorehabilitation teams

As described earlier, we recruited PCTs with a NRT. This is because in previous research we had identified NRTs as one of the ‘gold standard’ models of integrated service provision for people with LTNCs. 85

In one case site, we involved two condition-specific services provided by the same NHS trust, one for people with multiple sclerosis (MS) and one for people who had experienced a brain injury (BI). This was because the local service manager felt that a single team would not be able to produce the maximum sample size of clients we hoped to achieve for the OC implementation and evaluation (stages 2 and 3). In addition, the two teams were expected to merge during the research period and the service manager wanted both teams to be using the same paperwork.

Our five NRTs, within our four case sites, represented different models of provision. For example, one of the teams was a joint health and social care team, three were based in the PCT but had semi-formal links with social care and one team had no links with social care. In this latter case site, the local authority (LA) declined to be involved with the research. The teams also differed in their relationships with acute services and how they involved service users and carers into their work. A detailed account of each of the teams is provided in Chapter 3.

Stage 1: understanding the service context and identifying outcomes

In this stage we had three aims:

1. to understand the models of integration for adults with LTNCs in each case site

2. to understand the relationship between NRTs and carers

3. to explore and identify the outcomes important to adults with LTNCs.

We used two forms of data collection for this stage of the research: documentary evidence and in-depth, semistructured interviews. We had also planned to collect data via observation of strategic meetings. Data collection for this stage took place between August 2010 and June 2011.

Stage 2: developing and implementing an outcomes checklist for use in practice

Between June 2011 and October 2011, we developed an OC based on stage 1 service user data. In stage 2, the NRTs used this OC as part of their usual assessment procedures.

Stage 3: evaluating the use of the outcomes checklist in practice

In stage 3 we evaluated the use of the checklist to assess its use in practice, and whether or not and how it affected practice. We also wanted to seek feedback from service users with whom the checklist had been used in order to assess its face validity and ascertain whether or not any changes had resulted from the checklist’s use.

Anonymity and identifiers

To maintain the anonymity of participants, each case study site was given a unique identification code (i.e. sites A–D) and no names of local organisations or locations are included. Where we have drawn on local documents, we have not referenced this material directly to protect anonymity.

Staff who participated in the research were also given a unique identification number. We include information about the type of organisation/service they worked for (e.g. social care or NRT) but, to protect anonymity, do not report designation. The site code is included only where this does not risk compromising individuals’ anonymity.

Service users and carers were assigned a unique identification number. In places, we have used plural pronouns to obscure a participant’s gender and thus ensure that their identity is not compromised. In general, where we have quoted a service user we have referred to them by their identification number, which includes a case site reference, and their condition. Where we have quoted a carer, we have used their identification number and their relationship to the person they support. However, where the combination of these could compromise a person’s anonymity, one or more of these labels have been removed.

As described earlier in this chapter, NRTs distributed invitation packs to service users for us and recorded their identification number and name. To ensure that NRT staff are not able to identify participants in this report, and to ensure consistency in format of identification number, we changed all participant identification codes.

Use of quotations

Quotations used within this report are not exhaustive of the issue being discussed but rather are used as illustrative examples of themes that emerged in interviews.

Demographic profiles

The data presented about these draw on the most recent available Neighbourhood Statistics for each of the case areas (PCTs), predominantly based on 2001 census figures (see Appendix 8, note f). 86 Rural/urban classification of the case study areas was based on the Department for Environment, Food and Rural Affairs (Defra) classifications of PCTs from 2009, which were the latest available statistics (see Appendix 8, note g). 83

Organisational profiles

The case sites also reflected different organisational structures at a commissioning and strategic level. To understand the structures, we interviewed 15 commissioning and strategic staff across the four case sites. Table 11 shows the organisational staff who were interviewed.

As described in Chapter 2, we had difficulty recruiting commissioning staff in two of the case sites, so the information provided here triangulates data from documentary evidence and interviews with commissioning, other strategic and NRT staff per case site. As we had worked with three of the case sites before, we were able to reflect on the changes that had taken place in these areas. Where we have done so, we have made it clear that evidence is from previous work.

Staff we interviewed described different mechanisms for working with other organisations, including joint posts and joint boards. Some posts, for example directors of public health, are required to be joint appointments between health and social care. In this chapter, when we refer to ‘joint posts’, we have not reported these statutorily required joint posts.

Neurorehabilitation team profiles

As described in the methods section, each case study PCT had at least one NRT. The teams in the case study areas were different sizes, covered different conditions and had different structures and processes. To understand these, we interviewed 24 staff in the NRTs and four social care professionals who worked closely with the team. Table 13 shows the designation of staff interviewed across the four case sites.

All teams talked about informal/referral links with other agencies including, for example, acute services, housing agencies, voluntary sector agencies and social care organisations. We have not included these ad hoc links in the descriptions of teams. A summary of each team is given below.

Neurorehabilitation teams in case study site A

Two community neurology services within the provider arm of the PCT were studied in site A: a BI team and a MS team. (As reported in Chapter 2, we worked with two teams in case site A to provide a population large enough for us to recruit up to 25 service users per case site for the implementation and evaluation of the OC in stages 2 and 3.) Both were part of a larger community neurology service that included several other specialist teams. They were based in a community hospital and were similar in their service models of integration, in that neither had a social worker employed as part of the team but they maintained close working links with neurology specialist social care practitioners.

The NRT specialising in BI comprised occupational therapists (OTs) (see Appendix 8, note i) and a neuropsychologist. One of the OTs worked as a family liaison officer within the team for some of their contracted hours. A BI specialist social worker, funded by adult social care, used to sit within this team but was no longer in place when we undertook this research. The arrangements between the team and the social worker were informal, with staff linking when they had clients common to both caseloads.

The team supported people within 5 years of their BI, meaning that the maximum length of time a client was supported by the team was 5 years. Clients could receive this ongoing support while they remained motivated to achieve goals. The BI NRT’s composition is summarised in Figure 1. (Dotted lines on figures summarising the teams denote informal working arrangements. Solid lines indicate disciplines that are core/formal parts of the teams.)

FIGURE 1.

Site A brain injury neurorehabilitation team.

The NRT specialising in MS comprised an OT, an OT assistant and a clinical psychologist. The team used a goal-based approach and supported clients for the length of time it took for them to achieve their goals. Similar to the BI NRT, the MS NRT linked with a social worker specialising in MS, a post that was funded by adult social care. This social worker attended team meetings every 4–6 weeks to discuss clients’ social care needs and they also undertook joint visits with NRT practitioners, as appropriate. A MS nurse specialist from the local acute trust also attended these regular meetings. The MS NRT’s composition is summarised in Figure 2.

FIGURE 2.

Site A multiple sclerosis neurorehabilitation team.

In the second year of the study, the community neurology services underwent phased reconfiguration. This resulted in the BI NRT and the MS NRT, along with other community neurology services, merging into a larger, community neurology team comprising OTs, psychologists, a senior nurse, a dietician and a rehabilitation consultant. After merging, the new team also had a designated administrator. Although the reconfigured community neurology services resulted in a non-condition-specific team, specialist pathways (e.g. for BI and MS) were retained. After the reconfiguration, the research team continued to work with those staff who previously comprised the BI NRT and the MS NRT and with service users with BI and MS.

Neurorehabilitation team in case study site B

The NRT in site B was a large interdisciplinary team and provided rehabilitation (up to approximately 12 weeks) for people with any LTNC and those who had experienced a stroke. Most posts within the team were funded by the PCT but one social worker post was funded jointly by the PCT and social care and three support workers were funded by social care. The team comprised a clinical lead, two nurse specialists (one for PD and the other for stroke), OTs, physiotherapists, a speech and language therapist, a social worker, support workers and a sessional dietician. The team also had a designated administration team. In the past, the team had contracts with the local acute trust but these had recently ended. Similarly, a previous service-level agreement for neuropsychology input to the team had ended. The composition of the NRT in site B is summarised in Figure 3.

FIGURE 3.

Site B neurorehabilitation team.

Neurorehabilitation team in case study site C

The NRT in site C was a medium-sized interdisciplinary community team funded by the PCT. It provided long-term support for adults with progressive neurological conditions. Disciplinary input included OTs, physiotherapists, a MS nurse specialist, a PD nurse specialist, a post-diagnostic counsellor and a designated administrator. The team also bought in sessions from a speech and language therapist based in a local acute trust and funded several respite beds in a local care centre.

Social care funded a social care assessor and an OT, both based in local social care services, to attend monthly team meetings to discuss the NRT’s clients and potential for ongoing social care input. NRT staff attended social care annual reviews for their clients and also undertook continuing health-care funding assessments with social workers, as appropriate. Some members of the team ran clinics at the local acute hospital, promoting links with acute staff. The team had also developed a computer-based alert system with the local acute trust so that they were able to provide timely specialist in-reach support and advice, including around discharge planning, when someone with a LTNC had been admitted. The composition of the NRT in site C is summarised in Figure 4.

FIGURE 4.

Site C neurorehabilitation team.

Neurorehabilitation team in case study site D

The NRT in site D was structurally different from those in the other three case sites. It was part of a larger community neurology service that comprised specialist nurses, physiotherapists, OTs, support workers and two care co-ordinators: one for MS and one for stroke.

This neurology service was split into smaller teams of up to four practitioners, covering the disciplines listed above, that were aligned with a generic (health-based) rehabilitation neighbourhood team. The neighbourhood teams provided rehabilitation to adults with any condition and the NRTs provided them with neuro-specific advice, support and training, meaning that NRT staff regularly undertook joint assessments and rehabilitation sessions with staff from the neighbourhood teams. In addition, the NRTs in each neighbourhood retained a client list including people who had experienced a BI and/or who presented particular challenges for service provision. Some staff from the NRT would also visit the local acute trusts on a weekly basis to help with discharge planning for people with LTNCs.

During the course of the research, the neurology service was restructured. Therapists based in the NRT were, after this point, line managed by the neighbourhood team manager and the nurse specialists were managed by the community nursing manager. Thus, after these changes, although members of the NRT were based in the same office, they had different line management structures.

Although social care staff used to be part of the neighbourhood teams, these were withdrawn before the research began and, during the research, there were no formal arrangements for integrating health and social care in practice. The composition of the neurology service/NRT in site D is summarised in Figure 5.

FIGURE 5.

Site D neurorehabilitation team.

We interviewed staff at all levels of this arrangement, but we primarily worked with one NRT, based in a community hospital, which supported and advised two neighbourhood teams about neurorehabilitation and had their own client list of people with LTNCs with ‘complex needs’.

The NRTs, therefore, supported different client groups, had different staff composition, and represented different integration arrangements. Table 14 summarises the differences and similarities in the NRTs.

TABLE 14 - Summary of NRTs’ client type, location, composition, and integration arrangements

Including sessional staff, where relevant.

Team characteristics	A1	A2	B	C	D
Conditions covered	BI	MS	All LTNCs (including stroke)	Progressive neurological conditions	BI and any complex LTNC client
Team base	Community hospital		Separate office	Separate office	Community hospital
Number of staffa	3	3	20–23	7–10	2–3
Number of disciplinesa	2	2	8	5	4
Social care integration	When share a client	Formal – attendance at monthly meetings	Integrated into team	Formal – attendance at monthly meetings	None
Acute care integration	None discussed	Monthly meetings with MS nurse specialist	Recently ended	Acute-based clinic	Discharge assessments
				In-reach work
				IT neuro-alert system

Service processes and outcomes

Interviews with service users for stage 1 of this research focused on desired outcomes. However, participants’ experiences of the NRTs and how the ways they worked helped clients achieve desired outcomes also arose during these interviews. Carer interviews focused on experience of NRTs, including the NRT’s approach to including carers.

A total of 35 people with a LTNC were interviewed across the four case sites. Table 15 provides demographic details of the people we interviewed.

Thirteen carers were interviewed. Table 16 describes the carer sample.

The ways in which teams worked, or the way services were delivered, frequently affected service users’ perceptions of whether or how outcomes might be achieved.

A holistic approach to support, where people felt that the team saw the whole person, was highlighted as beneficial and was particularly evident in the accounts of service users in the BI NRT in site A and the NRTs in sites B and C. The ‘whole person’ ethos of these teams meant that they could apply their specialist knowledge to work in personalised, flexible ways that also promoted self-management in their clients.

Someone with MS in site C described how she had lost confidence before the NRT became involved and helped to sort out issues ranging from incontinence to mobility and housing issues. In site B several service users described how the team would identify functional and home-based issues, but these were broadened to the wider environment and the client’s personal goals, for example to provide help in accessing leisure activities and enabling psychological and employment support. One man with a BI, for example, described how memory loss had caused him anxiety and he saw overcoming this as the key to improving other areas of his life. The team had helped him with household tasks, such as cooking and shopping, and encouraged practical strategies for improving his memory in a variety of situations. Team support extended to benefits advice, helping him acquire new skills to improve future employment prospects via the job centre, and accompanying him to pursue leisure and exercise activities. Through the team being encouraging but not too directive, and demonstrating to him where and how he had made progress, he had regained confidence in himself, felt more in control and reassured that the NRT could offer support in new areas when, and if, necessary. This view was common across the teams that adopted a holistic approach to service user problems.

Linked to this, effective co-ordination of services and joined-up working within the team was often seen as key to finding solutions to problems which could be multifaceted. An interviewee in site A described how the BI team had arranged for a social care assessment, helped him find assistance with domestic tasks and assisted with his application for equipment. For someone with PD, living alone and with limited mobility, having the team in site C to help co-ordinate her care was key to maintaining her independence.

They really are good. They do fill a gap between a GP and a Consultant’s knowledge, and life in general, which can be very negative for people.

SU24C, PD

Providing information about services and support was fundamental to better care co-ordination and self-management and this was something that the specialist knowledge of team members enabled. Specialist knowledge included both knowledge about LTNCs and knowledge about services and support in a local area.

Once someone was accepted as a client, ease of contact with the NRT was a characteristic of all teams, and was particularly valued in promoting independence and confidence. Although an interviewee with motor neurone disease (MND) in site D saw the NRT relatively infrequently, he knew that he or his wife could contact them at any time if any concerns arose. A service user in site A particularly valued the way he could express his concerns to staff in the BI team and talk about his situation. Having someone who he felt understood his situation and condition to talk to, or to just listen, was important.

I think what it is, that you talk to people from the [BI Team] and you can talk to them about how you feel, what’s happened, what’s happening, what you want to do about the future, what’s gone wrong in the past and all that sort of stuff and just . . . and not get at all emotional about it.

SU7A, BI

A team’s positive attitude and encouragement could, in turn, generate confidence and self-esteem in service users themselves.

Because they believe in you. They give you that feeling that they believe I can do it, so, I can do it.

SU9B, condition withheld by participant

However, this was balanced by teams managing expectations around outcomes which helped service users remain realistic in their goals. Personalised discussions around goals, and teams offering practical strategies and solutions to help achieve these, were appreciated by service users. For example, the nurse specialist from the team in site C taught a service user with MS some useful techniques for dealing with complex mobility problems and how to break tasks down into smaller, more manageable components. In parallel, the OT accompanied her to view suitable new accommodation, relieving some emotional stress.

Having a responsive team that worked flexibly and accommodated individual and family needs as much as possible, helped carers as well as service users. The way teams were able to work in people’s own homes and the local environment was viewed as crucial in providing context to rehabilitation that had benefits for service users and carers. Where work around wider social and autonomy issues was incorporated, carers saw the benefits to service users in mood and confidence, but also in providing support to themselves. For example, accompanying service users to activities such as swimming provided carers with a break, and generated new topics of conversation.

Teams’ attitudes shaped the relationship with carers. In some instances, this could foster a supportive relationship that encouraged confidence in carers as well as service users. In contrast, one carer felt she was seen by the NRT in site D solely as someone to whom greater responsibility could be transferred while her own needs were ignored. Her feelings of emotional and social isolation were intensified and affected her capacity to cope with her caring role. However, this experience was seen as reflecting institutional rather than individual attitudes and the resource pressures the service was experiencing.

The time-limited input of most of the NRTs was also seen as a result of stretched resources and as a barrier to effectively monitoring changing needs or identifying new solutions. This was particularly relevant where LTNCs were fluctuating or progressive over time and carers needed advice and reassurance. Even an annual review would be helpful:

[about an annual review] . . . just to see and there may be nothing, but just that being aware that they are aware; that they still know we are here and that would be a nice feeling, I think.

Ca3B, husband of service user with MS

The ongoing contact with the NRT in site C was especially valued:

I think the thing that, sort of, helps you working with them is that you know, at the moment, they are available and you know that all it takes is a simple phone call. It’s not a long, protracted process of going to the GP, who then refers you onto somebody else. There are no gatekeepers to the service. They are freely available.

Ca2C, husband of service user with MS

Organisational-level (macro) influences

Although organisational staff noted some factors that influenced integration in practice, they primarily discussed barriers and facilitators to organisational integration. Several factors were identified as affecting management and commissioning integration but the dominant themes were (a) the culturally distinct nature of health and social care, (b) the role of macro-level structures and processes, and (c) the motivations of individuals.

In sites A, C and D, organisational staff described the culturally distinct nature of health and social care as being a barrier to integration: different political agendas, different financial systems, different approaches to care, and different commissioning structures all made integration difficult. In site B, commissioning staff were not available for interview, which may have reflected the organisational upheaval in both health and social care at the time of our research. Therefore, it was difficult for us to ascertain whether or not organizational staff considered cultural distinctiveness an issue in this case study site. In sites A and C, there were joint commissioning units, both of which included senior staff from health and social care and oversaw joint commissioning streams. Despite this, commissioning staff in the joint units noted the cultural separateness of health and social care in relation to commissioning but also more broadly.

I think in the NHS there’s still this . . . sense of all commissioning is, is that you have some contracts with some providers and you manage those, and that’s commissioning, and then you decommission something and you buy something else. Whereas I’m always at pains to say, ‘well, that’s part of what we [local authority commissioning] do, but actually, in some ways, the bigger and more important bit of what we do is bring that . . . overall leadership to how we meet the needs of the people of [County]’.

OS4C, social care

This demonstrates that even where there is some structural integration at the commissioning level, this can be undermined by the cultural heterogeneity in how ‘commissioning’ is viewed between health and social care.

The role of structures and processes featured strongly in the accounts of many organisational staff of factors that influenced integration. Structures that hindered integration at the organisational level included separate finance and accountability systems. Structures that facilitated integration included joint posts between the PCT and the LA or neurology-specific commissioning networks. Collaborative commissioning and pathways were also valued as a means of promoting integration. In site B, for example, commissioning collaborations were well established across tertiary and secondary care. However, collaborative commissioning for primary care neurorehabilitation was weaker and tended to be provider led. Although there were aspirations for collaborative commissioning of community neurorehabilitation, this was hindered by slow development and difficulties in gaining commitment from others, particularly within the current climate of restructuring.

Organisational flux in both health and social care had negatively affected structural integration arrangements between organisations in sites A and B. Joint forums and structures that had previously facilitated integrated commissioning had ended following the latest NHS restructuring. This restructuring made it difficult to identify appropriate partners or left gaps in forums that had previously supported integration. For example, in site B, the LIT, originally set up to implement the NSF for LTNCs and provide a forum for integration, had been suspended:

Now those meetings have come to a grinding halt, again, because there’s so much crisis at the upper levels, and key personnel are missing. So all the personnel who I said would have absolute responsibility, and there were four of them, are no longer with us, so we have got this huge hole at a strategic level at the moment.

OS2B, social care

Participants also reported process issues that acted as barriers and facilitators to integration at the organisation level. For example, having clear, shared objectives and plans, and tangible outcomes to work towards were viewed as facilitating integration at the organisation level. Individual motivations and personal/professional relationships played a role in integration for some participants. Understanding the motivations, processes and structures of different organisations was noted by organisational staff in sites A, C and D as being important when working with other agencies.

Developing relationships, facilitated by colocation and regular meetings, was central to promoting and maintaining integrated working. Indeed, senior organisational staff in sites A and D suggested that relationships between agencies were a greater influence on joint working than were integrated structural arrangements such as contracts or pooled budgets. This partly reflects the sentiment expressed by practitioners in sites A and C, where good working relationships between agencies were argued to facilitate joint working across boundaries.

Practice-level (micro) influences

Neurorehabilitation team practitioners also outlined factors that helped or hindered integrated working. Evidence from practitioners can be grouped into service and person-level factors. Service-level factors are those that are rooted in how the service system is organised and delivered (e.g. referral pathways). Person-level factors are those that arise from motivations of individual people (e.g. developing good relationships).

In site A, aspects of the service system were often cited as facilitating or impeding integration. These included bureaucratic referral processes between health and social care, and waiting times for social care assessments, both of which created delays for people with LTNCs in getting access to services. Other factors that could create difficulties when clients were referred to other services were other services’ limited understanding of LTNCs, the wider service landscape for people with LTNCs, and the different roles and responsibilities that different services and professionals adopted.

The lack of integrated client notes, eligibility criteria for services in social care, different legal responsibilities and different approaches to care between health and social care staff were all seen to impede integrated working in this site. Building relationships with staff across sectors was seen as a way of countering these system limitations. Team meetings were viewed as useful opportunities to share information within teams and also, when staff from other sectors or agencies joined the meetings, between services. Being co-located could promote increased joint working, allowing longer-term integrated approaches to service provision to develop.

The NRT in site B was formally integrated between health and social care. Although based in the PCT, a social worker and several rehabilitation assistant roles were funded by social care, as described in Chapter 3. The social worker was the NRT lead for social inclusion and this role was seen to be essential in enhancing a holistic team perspective as well as providing a link with social care and other relevant services. However, despite the formal integration between health and social care in the NRT, staff still felt there was an absence of integration in other respects. For example, administration procedures and information technology (IT) systems remained separate and different contractual arrangements for health and social care staff within the team led to a perceived divide.

Practitioners also cited a number of factors that influenced the success of how this large, multidisciplinary team integrated within itself. For example, co-location, team meetings, open communication, supportive team culture and joint goal setting were helpful factors for team integration. Having a multidisciplinary clinic situated in a local health and social care centre was a valued integration arrangement, providing access to a range of disciplines for service users and practitioners alike. Similarly, having regular, interdisciplinary work-based training within the team was felt to facilitate integrated working by promoting a holistic view of care:

It’s very much presenting the whole person back [as] an individual case study, and how the individual elements affect the outcome of what we’re doing and the goals that we’re working towards and whether they’re achieved or not achieved.

NRT9B

Roles within the team reflected its integrated approach. For example, as well as the social worker role, the band 5 assistant practitioner/senior therapy assistant had competencies in a range of disciplines. The assistant practitioner worked alongside bands 3 and 4 rehabilitation support workers, employed by either the PCT or social care, in implementing integrated treatment plans. It was felt that having different employing organisations had not been a problem as posts were backed by what were believed to be robust service-level agreements and competency frameworks. However, team integration could be hindered when responsibilities to the team were restricted due to being line-managed outside the team, as in speech and language therapy and dietetics, or when heavy caseloads of individual therapists made it difficult to work actively alongside the team in an interdisciplinary way.

Negative factors influencing integration between the team and the wider service landscape were also highlighted. Sometimes these related to inadequate service provision with which the team could integrate. For example, neuropsychology input had been lost due to a service-level agreement ending and access was now dependent on funding approved by the treatment and advisory group on an ad hoc basis. Intermediate care services were primarily focused on older people and lacked capacity and expertise around people with LTNCs. Integration with other services was also argued to be influenced by poor information sharing between services, waiting lists, and time-limited input of service provision. It was felt that rotating staff between services (as had happened some years previously) could go some way to achieving a better understanding of different ways of working and approaches to rehabilitation. However, close working and good relationships with individual practitioners and services, established over time, facilitated integration with the wider service landscape.

Practitioners in the NRT in site C cited several barriers and facilitators to integration between health and social care, including having culturally different approaches to practice, a lack of resources in social care causing delays, having separate IT systems and paperwork, and not having a social worker in the team. Having good relationships with social care was seen as helpful, and the maturity of the team had facilitated this. In a similar way to site A (where formal service integration did not exist), joint working across boundaries by front-line practitioners had developed over time.

Practitioners in site C also referred to within-team integration. For example, practitioners described how adherence to different professional cultures within a team could pose difficulties in practice but that flexibility to go beyond one’s own professional role could promote integration.

I think you’ve got to appreciate that we all do work very different[ly] and we are different healthcare professions, and sometimes our roles will blur, but that is good, but it’s all about knowing in that team where they cross and you discuss that.

NRT3C

As in site B, one practitioner in site C was instrumental in promoting and maintaining a dynamic approach to integrated, interdisciplinary service provision. In line with data from the other case sites, this team argued that other services’ confusion about and/or poor knowledge of the wider service landscape for people with LTNCs hindered integration and co-location facilitated it.

Site D practitioners cited barriers and facilitators to integrated working in relation to social care and wider local services. A lack of clarity in the service pathway around roles and responsibilities between the locality team and the community neurology team was felt to cause delays in service provision and inhibit the development of integrated approaches to service delivery. One NRT practitioner described how visiting social care colleagues had promoted awareness of the NRT and what they could provide, which in turn had helped the two services to work together. Understanding each other’s responsibilities was also seen as important in building working relationships with social care, and NRT staff felt that this could be facilitated by joint visits.

Participants indicated that, when meeting with other services, it was important to have an independent chairperson, a strong agenda and a proactive approach to problem solving to ensure that all parties worked together. Clear communication between the NRT and neighbourhood teams was seen as essential to promoting integration more generally, as were being co-located, having case meetings with the clients, and maintaining regular e-mail contact across services and sectors.

In summary, common themes that influenced integrated provision in practice emerged across sites. The lack of an integrated IT system, different paperwork, lack of knowledge around LTNCs and services, and unclear roles and responsibilities all hindered staff on the front line from working as closely as many of them wanted. Factors that facilitated integrated provision included co-location, building of personal/professional relationships across boundaries of profession, service and sector, and having clinical/practitioner leaders around integration who could promote innovative means of overcoming barriers and developing systems for closer joint working.

Finally, while factors can be roughly grouped into ‘person level’ and ‘service level’, these were by no means independent of each other:

I think that’s important, ‘cause you can have your strategic level [integration], but if the ground force don’t speak to one another and work together and pull the stops out for one another, then you’ve got nothing.

NRT6B

Macro- and micro-level relationship influences

Relationships between different levels of the organisations could affect whether or not and how integration was achieved. Some team members felt that decisions made at senior levels, particularly around structural arrangements, did not really affect their practice; they just continued to try to provide the support that people with LTNCs needed and to work with colleagues across different services and sectors. However, it was acknowledged that some decisions did affect integrated working. For example, in one case site, health and social care organisations had had a partnership agreement in which social workers had been co-located with health-care staff. This had recently changed as a result of structural/commissioning decisions, meaning that the organisational and personal–professional relationships between health and social care staff were fragmented.

Furthermore, NRT staff discussed the how the impact of financial decisions (i.e. cuts) about other services might affect their work and the services that people with LTNCs were able to access. For example, in site A, statutory funding had been withdrawn from several resource centres that had provided day-opportunity services. This meant that these avenues to support were highly rationed, resulting in NRTs having to try to provide some of this support or clients having to go without.

Practitioners felt that senior managers/commissioners supported NRTs’ approaches to integrated service delivery. Indeed, senior managers and commissioners often identified the NRTs as examples of excellent service delivery models. Despite this, however, practitioners noted that no systems were in place to extend these models of integrated provision to the rest of the PCT or LA. Furthermore, practitioners felt that they had little real influence on decisions that were made at more senior levels, even when specific structures were in place to hear their views. Where it appeared that practitioners and existing integrated models had influenced wider service design and integration, practitioners argued that this was because these had simply been aligned with the PCT’s or LA’s existing priorities.

Personal comfort outcome domain

Outcomes within the personal comfort domain included a range of areas relating to functional capabilities and physical and emotional health. These were:

• personal hygiene

• safety/security

• desired level of cleanliness of home

• emotional well-being

• physical health.

Social participation outcome domain

Social participation outcomes relate to all and any parts of a person’s social world, including their relationships inside and outside their families and their day-to-day activities.

There were originally five categories within this domain:

• access to mainstream leisure activities

• access to support in parenting role

• access to support for personal secure relationships

• access to advocacy and peer support

• citizenship.

Economic participation outcomes

This domain covered outcomes that were primarily framed around being able to work or acquire skills and education to enhance people’s economic positions. These were:

• access to paid employment as desired

• access to training

• access to further/higher education/occupation

• access to appropriate training for new skills.

Autonomy outcomes

Outcomes within this domain incorporated issues around supporting autonomy:

• access to all areas of the home

• access to locality and wider environment

• communication access

• financial security.

Lower-level outcomes

At their most basic, outcomes could address needs around, for example, functional mobility or washing and dressing, that, as reported in Chapter 3, were often captured in the functional-oriented outcome assessments that teams used in their current procedures. These may be viewed as the ‘building blocks’ on the basis of which the sorts of outcomes included in the three domains we identified can be achieved.

Intermediate-level outcomes

Interviews with people with LTNCs underlined that the outcomes, as envisaged by Harris et al. ,3 were important. By focusing them at the ‘intermediate level’, they were able to incorporate the lower-level outcomes and, at the same time, identify the ‘higher-level’, less tangible outcomes that people wanted to achieve.

Higher-level outcomes

We identified five higher-level outcomes in the accounts of people with LTNCs. These were independence, choice, control, normality and self-esteem.

Achieving independence was key for many people. It was an overarching outcome, to which aspects of autonomy in particular, but also elements of personal comfort and economic and social participation, contributed. For example, one service user described his independence as the most important thing to him and he had developed techniques in washing and dressing, or used aids and equipment, to prolong his independence as far and for as long as possible.

Maintaining his physical health so that he could continue to drive and do as much for himself as possible was important. Preserving this independence, in turn, underpinned his emotional well-being.

Choice and control were themes that ran throughout discussions of all categories of outcomes. For example, this could lead to people buying their own equipment so that they had greater choice, not only in the type but also in the timing of access to equipment. Financial insecurities and reliance on benefits could threaten people’s feelings of being in control or having choices in their lives. Maintaining control of available options in different spheres was important. Someone with MS talked about how being able to get out into her garden was really important to her, especially as she was limited in her opportunities to get out into the wider environment. Making the garden accessible, by installing a ramp and conservatory, had had a positive psychological impact on her feeling of exercising choice.

A recurring theme in narratives was the idea of feeling ‘normal’. This could refer to a sense of what felt ‘normal’ for them or ‘normal’ in terms of other people’s perceptions. Performing everyday household tasks, maintaining familiar family routines and relationships, driving, and returning to work were all bound up with a sense of who people once were and regaining ‘normality’. For many, it was also important how they appeared to other people. They did not want to appear ‘a fool’ or ‘a cabbage’ (SU35B, stroke) because of communication difficulties and wanted to walk well to avoid social embarrassment. For these people, there was a stigma attached to appearing different. In addition, maintaining their roles as parents and friends, or participating in mainstream leisure interests, were social activities seen by themselves and, they argued, by others, as defining normality:

So it’s getting used to, and I’m wanting to be the calm, casual, for someone to walk in and see me dealing with my kids ‘He’s normal, he’s all right, he can do that, he’s absolutely fine.’

SU16B, BI

Many of the outcomes discussed were an integral part of people achieving confidence in themselves and an associated feeling of self-worth or self-esteem. Personal care was important in this respect; being able to wash and dress one’s self was linked to personal dignity. For one man, his ability to wash and dress himself or go to toilet was variable, and on a bad day he felt that ‘all pride ha[d] gone out the window’ (SU19B, condition withheld to protect anonymity). It was important that he could make small steps in progress in his personal care. Employment, whether for its own sake and/or as a means of avoiding dependence on benefits, could also be a route to regaining people’s sense of self-worth. Participation in voluntary work provided similar support to those unable to contemplate paid work.

Exploring these different levels of outcomes throughout service user interviews helped to inform our understanding of meanings, hierarchies and inter-relationships. Figure 7 illustrates the complexity of the inter-relationships between the different levels of the outcomes.

FIGURE 7.

Example of inter-relationships between different levels of outcomes based on service user interviews.

Using the outcomes checklist

Not all members of staff in the NRTs used the checklist. Table 20 gives a breakdown of which staff used the checklist, by site.

Although these findings may reflect the different NRT compositions across the case sites, it is interesting to note that not all professions within the NRTs in sites A, B and C used the checklist. Possible reasons for this are discussed later in this chapter.

Evidence from the CRAs indicated that some of the outcomes were not discussed with clients during assessments. In particular, we found several checklists that did not record information about the ‘safety and security’ outcome in sites A and B, about the relationship outcomes in sites B and D and about the education and training outcomes in all case sites. In most cases, staff had noted on the checklist that these outcomes were not relevant for the client. It is not clear from the CRA alone whether clients or staff decided whether or not an outcome was relevant. In one instance, where the client had experienced a recent bereavement, the practitioner recorded that it was inappropriate to ask about relationship outcomes at the time of assessment (site B). Interviews and focus groups with NRT staff explored these issues in more detail and findings are reported later in this chapter.

All checklists allowed space for notes so that NRTs could include additional information. The depth and type of detail recorded varied across all checklists. Some checklists contained little or no detail, while others contained information about, for example, the client’s specific difficulties and concerns, goals set to help achieve outcomes, referral information, actions taken or planned, and further assessment that might be required. There were no discernible patterns to the depth and type of detail recorded by case site team.

Summary of care record audit findings

The CRA demonstrated that use of the checklist varied across teams. All teams did use the checklist but some of the outcomes were listed as ‘not relevant’ and some outcomes were considered too similar. Interviews and focus groups with staff explored their use of the checklist and their views on its value and potential. The next section presents these findings.

Following procedures

Initially, it had been agreed that the OC would be used with new clients and clients re-referred during the previous 6-month period. However, we modified procedures in response to pressures that teams were experiencing and the apparent difficulties in recruiting clients who met the research criteria. For example, during the first few months of implementing the checklist in site B, many clients attending the triage clinic did not need further input from the NRT or did not meet research eligibility criteria. To accommodate these challenges to recruitment, first, we offered all teams the option of also using the OC at review, or for new episodes of care with existing clients. One team in site A, and the teams in sites B and C agreed to this. However, only the site C team implemented this option. Although the site D team did not agree to using the checklist for reviews, it became apparent from data collected in stage 3 with service users that it had been used in review for one client. In site B, the team continued to use the checklist with new and re-referred clients. Second, we offered all sites the opportunity to extend the implementation period. Teams in sites B and C agreed to this, and the time period for using the checklist was extended for 4 months beyond the original 6-month recruitment period. The teams in sites A and D declined this extension.

Although there was an understanding that the checklist could be used more than once with each client, all sites limited its use to a single completion. However, it could act as an aide memoire to follow up additional needs with clients at future visits:

I think it made me think, ‘Oh, I haven’t really asked him about where he gets support from a peer point of view from.’ And I was able to ask him that, like, the second time I saw him, rather than it eventually coming up in conversation.

NRT2A(2)

Staff chose to use the checklist in different ways. Some dedicated a whole session with a client to using the OC and, in one case, this was reported to have taken 2 hours. It was more commonly reported that the checklist took 10 to 15 minutes to complete. The majority of staff used it alongside their existing tools, to supplement assessments, while on a few occasions it was completed after visiting a client.

Views on the process and format of the outcomes checklist

The teams in sites B and C seemed to find it easier to use the checklist than teams in A and D. In B and C, a factor cited as helping to facilitate use of the checklist was their team administrator, who reminded staff about the checklist before client visits. All teams commented how the compulsory paperwork for their initial assessments was already lengthy and had to be given priority. At one point, the site C team had to suspend their use of the checklist temporarily as they were forced to undertake other paperwork for the Commissioning for Quality and Innovation (CQUIN)-related commissioning exercise.

The format of the OC was modified slightly in sites B and C to reflect that, although an outcome might be important to someone, it might not be something they wanted help with at that particular time. Otherwise, the format was generally liked, found easy to use in practice and helped to take the service user through the process of discussing issues they might want to resolve. The comments box was useful in providing the opportunity to give more detail. The NRT in site C suggested that it might be used to record more explicitly whether and how service users wanted to address outcomes. The team felt that this would be more in-line with the self-management approach that underpinned the way outcomes were defined.

Some staff found it useful to use the commentary explaining the parameters of different outcomes when using the OC in practice. However, it became evident that not everyone referred to these parameters when undertaking assessments.

Views on individual outcomes

Discussions about individual outcomes focused on areas where outcomes on the checklist differed from current practice.

Views on outcomes overall

While there were similarities between many of the outcomes on the checklist and those in teams’ existing assessments, it was generally felt that the checklist’s approach was different. Knowing that these outcomes were a formulation of what is important to people with LTNCs and were derived from service users themselves, was important. Teams in three of the four sites commented that the OC made them think more about outcomes than their current assessment process, limited the assumptions they made about people, their needs and their preferences, and helped them to ask more in-depth questions. The issues covered and the way outcomes were worded helped staff and service users open up discussions about otherwise difficult or neglected areas. Teams in sites B and C, in particular, commented on how they liked the phraseology, which encouraged a more person-centred style of questioning with an emphasis on self-management and how people felt about issues. For example, ‘desired level of household cleanliness’ reflected whether or not a person felt happy and in control of their household situation, rather that just that the house was clean.

The outcomes were viewed as comprehensive and relevant to the types of clients that the teams supported. However, some felt that having only one outcome explicitly covering physical functioning or cognitive skills did not enable detail about these issues to be recorded and did not match teams’ current assessments for achieving this. This research did not aim to replicate teams’ current functional assessment tools but rather a checklist to enhance current assessment processes. However, some staff reported that the overall emphasis of the checklist marginalized their professional input:

So you . . . you only give one question for physical health and functioning . . . And you think, oh, right, Physio, one question, okay, we know where we are [laughs] . . . But yeah, you’ve repeated quite a lot of social roles, family roles, community, in quite a lot of questions.

NRT5C(2)

In site D, management of medication was often a key reason for referral, and symptom and medication management inevitably were a priority. NRT staff expressed the need for more specific outcome measures around these areas, while in other teams it was felt that such outcomes could be inferred in the checklist’s ‘physical health & functioning‘ or ‘personal decision-making’ outcomes.

There was agreement that outcomes needed to be explored at all levels. Teams in sites B and C felt that the outcomes, as listed on the checklist, were addressed at the right level to start a useful discussion. Staff generally liked the way that they were not too prescriptive. Staff in site C felt that if the checklist had focused on higher-level outcomes, for example about choice and control or self-esteem, it might have been more difficult to achieve meaningful action, although they would have generated interesting discussions. In contrast, staff in site D felt that the outcomes as framed with the OC were more appropriate for use by social care teams during personal support planning. For them, outcomes as formulated in the checklist did not give the capacity to look at lower-level ways of building up functioning to achieve goals.

Fit of outcomes to professional practice

Where there was a divergence in overall views on outcomes, this generally reflected the differences between the teams. The teams in sites A and D experienced more challenges using the checklist than those in sites B and C. For example, the team in site D that practiced a more medical, clinically focused approach gave priority to detailed physical and psychological assessments. Although they tried to carry out holistic assessments with a wider focus, much of their work was around symptom and medication management. They felt that the checklist created a problem by giving the wrong impression of the type of support they could offer or, if acknowledging that support was outside their remit, a problem of signposting to other services when they were aware that clients would not meet eligibility criteria for social care. In addition, the OC encouraged the type of ongoing support that was difficult for the team to provide. Management pressures required them to discharge people from the service and deal with discrete episodes of care.

The BI NRT in site A had used the checklist on only two occasions, but felt that outcomes fitted in with their practice and could add value to their current assessments. However, it was difficult to justify the time needed to use it, especially when there were staffing pressures in the team. The MS NRT felt that their assessments already covered most of the outcomes and, if not directly, issues would probably come up in discussions. Hence, for them, the OC added nothing to their existing practice.

The teams in sites B and C were more open than teams in sites A and D to exploring how the checklist could add value to, and be used in, their existing practice. Interestingly, both site B and site C teams commented that they felt that more ‘impairment-based’ teams would struggle with using the checklist because of their narrower approach to assessment and care planning.

The way that individual practitioners within teams viewed the checklist also differed. Some practitioners thought that the outcomes were skewed towards social issues and that the checklist was, thus, irrelevant to their practice. Others felt that the OC, by capturing their team’s overall approach, was a valuable addition to assessments, even if some of the outcomes were outside their individual professional roles and skills.

Only site B employed a social worker as a member of the team whose remit was to work within the team and provide the lead on social isolation. This person was the only social care practitioner across all case sites to work with the team’s assessment paperwork and directly use the OC. In site A, a social care practitioner was interviewed to discuss her views on the checklist content and format, though she had not had the opportunity to use it in practice. Social care practitioners who worked closely with the NRT in site C were also invited to give their views on the checklist and explore how it might fit with their current practice, though none responded.

The social care practitioners we interviewed felt that the OC was comprehensive, reflecting the issues that should be covered from a social care perspective. They were concerned that some social workers might not understand the interconnectedness of some of the outcomes for people with LTNCs. They argued, for example, that cognitive problems tended to get overlooked and misunderstood by non-specialist social workers. Furthermore, funding in social care tended to dictate prioritising areas of ‘personal hygiene and care’ and ‘safety and security’, with a focus on critical need. Dealing with longer-term issues, such as family relationships or access to employment or training, demanded ongoing support but opportunities to provide this type of support were limited. Hence, to work towards the outcomes on the checklist, social care would need to liaise with or signpost to other agencies.

The differences we identified between teams in sites A and D and those in sites B and C may be explained by factors such as the degree of interdisciplinarity in the teams, staffing pressures and organisational changes experienced by teams.

Organisational and strategic factors affecting teams use of the checklist in practice

The current climate of financial constraints and reorganisation also influenced views about the outcomes and the ability of teams to help clients achieve outcomes and meet people’s needs. There was a discussion in site C about how OTs roles were changing, less time could be spent with clients and there was pressure to focus on the key elements of their role. As mentioned earlier, staff in site D commented on the way in which clients would not meet criteria for social care and this concern was echoed in other teams. Staff in all sites felt that the economic climate was driving the way services could respond to clients’ needs, not just within their own service and across social care but also in terms of benefits and employment. For example, being called for benefit reviews caused anxiety for clients because they were worried about the possibility of being forced into unsuitable employment. Service users and staff were concerned that information about service users striving to be positive about self-management and community involvement could be detrimental for service users in benefits claims. Furthermore, service users’ access to and participation in, for example, transport and exercise schemes was becoming increasingly difficult. Staff in site B described how all available exercise schemes incurred costs to clients that had to be a major consideration in discussions about what the team could facilitate. Moreover, funding of local transport schemes was becoming more problematic, especially in relation to specialised transport for people with mobility difficulties. Participation was curtailed and support from voluntary organisations experiencing cutbacks in their service meant that helping clients achieve outcomes was increasingly difficult.

Strategic-level reorganisations had had less impact on front-line practice in sites B and C than in sites A and D. In site A, amalgamating several teams was causing internal upheavals and staff changes created insecurity and a more inward focus on specific roles and responsibilities. These service changes created pressures that made it difficult to use the checklist:

But maybe in, kind of, 6 months’ time or a year’s time, when we’ve merged and things are more settled . . . [edited] this won’t seem as an extra imposition.

NRT2A(2)

In site D, the merging of the provider arm of the PCT with the acute trust had been accompanied by major reorganisation of the community neurology service. It was felt that the drive to develop community neurology services at a higher commissioning level had been lost and, coupled with a reduction in team staff, those remaining were forced to narrow their focus and felt under pressure to concentrate on what was perceived as core business:

All those things that would be lovely to do are just not going to happen now, are they, at all?

NRT1D(2)

Impact of using the outcomes checklist

All teams welcomed the evidence-based nature of the checklist and that outcomes were derived from service users’ views of what was important rather than being from a clinicians’ or organisational perspective. In addition, several staff felt that the way outcomes were framed helped teams achieve a more person-centred and holistic assessment:

It’s really very much their opinion on their health and life, rather than our opinion. And I think again, you know, some people are better at that than others, at seeing people holistically or seeing people in a box. And I think this really hands it back over to the patient to say, ‘What do you feel about that. I can see you are having problems with your hand, but how do you feel about it?’

NRT15B(2)

One person in site C commented that, although the team had worked hard in developing a generic, holistic assessment over the last 2 years, the OC had identified issues that had not been raised when using their usual assessment documents.

Staff suggested that the checklist could help service users to think about their lifestyle and understand how specific therapeutic input could be beneficial in the context of their life. In site B, where staff frequently worked with people recently discharged from hospital, using the checklist could help clients adjust and focus on the reality of functioning in their home and wider environment, and move on from the sorts of rehabilitation goals they would have worked towards in hospital.

Staff in site B also commented how, for them, using the OC made the whole assessment process smoother and fairer. The checklist made sure that everyone had an equitable assessment, each outcome had been addressed and all staff were aware whether the service user wanted something done, whether it could be done within the team, or whether they needed to signpost to another service.

Difficulties encountered in using the OC were often around time and capacity pressures, especially in sites A and D. Generally, it was felt that there was duplication in the issues covered within teams’ current assessment tools. For some, this made using the checklist a time-consuming chore that added little value, especially in site D where they felt that their main focus should be around clinical, functional and environmental adaptation issues. Others acknowledged some duplication but saw this as positive in that the checklist approached issues in a different, more holistic way.

All teams commented that the initial assessment was not always the most appropriate time to use the OC. This was partly due to time pressures but also because staff felt it might be important to establish a therapeutic relationship with their client before delving deeper into what might be considered sensitive areas. As discussed earlier, staff in site D felt that the OC gave the wrong impression of the type of the support they could offer and might raise unrealistic expectations, not just because the issues raised were outside their remit, but because no services were available to help.

The ways in which the OC could be used in the future were discussed with teams. It was agreed that it would require some changes to fit in with requirements of teams’ current paperwork. Interest in incorporating it into team practice varied across sites. This partly reflected differences in capacity or opportunity to establish and present a business case for developing their service. Teams in sites B and C viewed adapting the checklist as a potentially useful exercise in further developing their service in a direction that was consistent with the aims of their team and could influence commissioners. The teams in sites A and D viewed the outcomes they had to achieve as a service as being dictated by commissioners. Securing continued funding for their service was dependent on achieving these outcomes.

There were several common suggestions across the sites about how the checklist might be used in the future.

• Assessment: Sites B and C saw it as a useful addition to a suite of assessment tools. Staff in site C suggested that a service user self-rated ‘before and after’ component, based on higher-level outcomes of, for example, self-esteem and choice and control, might help demonstrate an extra dimension to their team’s work.

• Ongoing review: Staff in site B and from the BI NRT in site A felt that the checklist could be useful as a working document to be used throughout the team’s support of a client and in providing a final check of the team’s input.

• Training: There was widespread agreement in sites A, B and C that it could be used in training junior and newer staff and could also help existing staff develop interview skills and a holistic approach to assessment. This was seen as potentially helpful for teams that were more impairment led, to prompt a wider personal and holistic approach. In addition, it was felt to be thought-provoking, to encourage reflection and to provide confidence in addressing issues: ‘I think it is really good for – maybe particularly for junior and newer staff members, because it does give you all these questions that, if you can’t answer, you haven’t asked the questions’ [NRT2A(2)].

• Audit/benchmarking: One of the teams in site A and the team in site D saw the checklist as possibly working as an audit or benchmarking tool to check against whether or not their existing assessment paperwork was working on the issues rated as important to people with LTNCs.

Overall, as we have seen, sites A and D felt that the OC did not work for them. Although some staff in site A saw value in some of the outcomes that currently they did not cover (e.g. access to advocacy and peer support, and personal decision-making), changing their practice and assessment tools was not a priority at the current time. In both sites, there was a sense of multiple pressures (including staff pressures and organisational changes) on teams. This seemed to have an impact on their ability to contemplate innovation for current practice:

‘Cause I think, at the moment, this is just one other thing that we have to do, and we’re trying to meet these targets and we’re trying to fill in all these forms and we’re trying to get our waiting list down, when we’re under pressure for more clients because, you know, staff levels have reduced. I think this just came at the time when this was just another thing. Or that’s how it felt to me, anyway, and it just didn’t, unfortunately, register. However bad I felt for not doing it . . . it just didn’t register on my list of priorities.

NRT2A(2)

By contrast, the team in site B was keen to incorporate the checklist into their assessment process. Staff felt that they would need to keep their own more clinical sections, but saw value in integrating the checklist into their assessments to ensure equity and a focus on what service users wanted.

The NRT in site C was keen to see the OC developed as a validated assessment tool. Staff saw the potential to provide a good outcome measure that more effectively captured their work as a team and could thereby influence commissioners:

So we desperately, desperately need something that captures what we do, because nobody’s asking us, commissioners don’t really know what we do . . . And we were really hoping that this would carry on to be developed to do that.

NRT1C(2)

Summary of staff interview findings

Teams encountered a number of challenges using the checklist including staffing and caseload pressures, changes to service structures and remit, and competing demands of other compulsory paperwork. While it did not work for teams in sites A and D, teams in sites B and C felt that the checklist had potential and fitted in with their practice. Across all sites, it was felt to have value as a benchmarking and training tool. There were contrasting views about each individual outcome and whether they complemented, added to, or duplicated themes and issues in teams’ existing assessment paperwork. There was reluctance to raise certain outcomes with clients. This could be because it was not deemed to be within the staff member or team’s remit, because the outcome was a sensitive area, or because there was an absence of corresponding support and provision to help the client achieve the outcome. Some outcomes were viewed as particularly helpful and were seen to add to teams’ existing assessments.

Overall, a number of factors affected the extent to which these outcomes could be meaningfully assessed in practice. The next section describes service users’ view of the outcomes, and whether or not they capture the key issues they want to be addressed.

Views on individual outcomes

Although some people could not remember their assessment, we showed all participants the checklist during their interview. This meant that they were able to comment on the relevance of the outcomes for them and their feelings about being asked about the outcomes.

Did the checklist cover participants’ main issues of concern?

We asked people what their main issues of concern were at the time of the interview and if they felt the checklist covered these issues.

The issues people reported covered a wide range of topics and reflected those identified in stage 1 interviews with service users and, therefore, the outcomes included on the checklist. When asked if they were able to place their issues within categories on the OC, people were able to find a category where they could fit the things that were important to them. However, some felt that their main concerns could fit into more than one category because these affected many areas of their life. Several people with MS, for example, explained that fatigue had an impact on whether or not they were able to achieve several of the outcomes and so could be included in any one, or all, of them, with one person suggesting that it should be a category of its own on the checklist. Outcomes people talked about explicitly also reflected the higher-level outcomes we described in Chapter 5, such as the importance of feeling ‘normal’ and being independent.

We also asked people if they were or would be happy for the team to raise the topics on the OC. Everyone we interviewed said that they were or would be happy for the team to raise any of the outcomes on the checklist with them because of their levels of expertise and one also suggested that it was because she felt she had developed a good relationship with the team over several years. However, as mentioned above, some people did express some hesitancy in talking about some of the issues, such as intimate relationships and financial security, unless the latter was about benefit entitlements. This was primarily because they viewed such outcomes as being outside the remit or expertise of the team. As described in Chapter 3, at least two of the teams (B and C) saw these issues as very much part of their remit and regularly assessed needs/goals around these issues.

Even where they felt reluctant to talk about an issue, the people we interviewed still felt it was important to include it on the checklist and in assessments because the issue might be important to other people with LTNCs. It was suggested that including these issues in assessments opened a door for clients who might want to talk about it later.

People we interviewed were happy to raise issues with the team or for the team to raise the issues. However, they thought it was useful if the team asked about areas clients might overlook, think were outside the remit of the team or miss because of poor memory. When asked whether she, or the team, raised issues during assessments, one client responded:

It’s half and half. If I don’t mention something that I’ve mentioned before, they’ll sort of ask how things are, which I think this is where the checklist is going to come in handy. If I’ll ask them to come, and it’s because I’ve got a specific problem, and then I’ll raise the issue, and so it’s, sort of, a mixture of both of us, really.

SU43C, MS

This, therefore, made the checklist useful for reviews. Those participants with whom the checklist had been used in reviews felt that many of the issues included on the checklist were similar to issues that they discussed in earlier meetings with the team. However, they felt that using the checklist would make certain that pertinent issues were raised at each assessment.

Impact of checklist use

The people we interviewed described the different interventions and actions the team took after their assessment. However, we are unable to attribute these to using the checklist in the assessment. These issues might already have been addressed, and the same actions might have resulted when using their usual assessment processes, albeit at different timescales (see staff analysis). Nonetheless, participants thought that it would be useful to use the checklist to ensure that all of clients’ key issues are sure to be covered in assessments.

Overall view on checklist

All those interviewed said that the OC would cover all of their concerns at the time of interview, with some going as far as to say that there was ‘nothing missing’ from the checklist (SU39B), that it ‘covers everything’ (SU36A, MS; SU45C, MS) and that it ‘covers life’ (SU47D, MS). One person we interviewed, who had worked in care services, suggested that the checklist covered all the things that were important to consider when planning care provision (identification number excluded to protect anonymity).

Participants agreed that the checklist covered the things that were important to them but that the importance or emphasis they placed on each of the outcomes might change over time, based on changes in their condition and/or other circumstances.

We specifically asked participants to identify anything missing from the checklist, and although they thought everything would be covered, two people suggested that some key issues for them should be made more explicit on the OC. They suggested, as is discussed above, that fatigue should be an explicit issue in the ‘physical health and functioning’ outcome and that assessing need for help in completing benefit application forms should be explicitly included in the ‘financial security’ outcome.

The way that the outcomes were worded were thought particularly relevant to service users, with one person saying that ‘. . . it seems like it’s been written for me’ (SU39B). Those who talked about the level at which the outcomes were pitched felt that it was appropriate; including the lower-level outcomes would increase detail and so would be ‘off-putting’, and using the higher-level outcomes would allow too much variation in how they were interpreted. However, some participants did suggest that the outcomes on the checklist, when viewed together, were all about promoting independence.

People with LTNCs who we interviewed in this stage of the research, therefore, not only understood the elements that contributed to the level of outcome that we used for the checklist, but were also able to see, unprompted, the contribution of these outcomes to those we identified as higher-level outcomes, such as independence, choice and control.

Some clients expressed confusion about who provided support or referred them on to other service providers. One person, who described being in contact with nine professionals from different service sectors, suggested that a more co-ordinated approach to service provision would be helpful:

. . . they are very good in their own ways, but you don’t necessarily know what everyone is doing . . . I would like to go to one person and say, ‘Right, you’re in charge of me,’ . . . they’re all doing their own thing, but if they co-ordinated it you might be able to improve the overall service.

SU36A, MS

Thus, clients recognised the important of professionals and services working together – an observation that supports more integrated provision for people with LTNCs.

One of the participants also suggested that the checklist could be used to improve communication and enhance co-ordination of care:

I think the checklist covers everything that people will be likely to want to discuss. I think it’s good to have it because you can – it focuses your mind on what you need to talk about. I think it’s good for the [NRT] to have a copy because, if somebody – if it’s not the same person coming out to you at the same time, every time, they will know what’s been discussed and what have been issues and what haven’t been issues before. So it gives better continuity, and if this was taken up nationally, if you moved to another area and you were working under another [NRT], you wouldn’t, in a way, be starting right from the word go with a new set of people, which would make it quite helpful.

SU43C, MS

Summary of service user interview findings

Although we cannot ascertain whether or not the checklist directly influenced care, those we spoke to about their experience of being assessed using the checklist demonstrated that it held face validity, and potentially could be a useful tool as part of assessing their care needs.

Discussions with people with LTNCs at this stage of the research reiterated the importance of most of the outcomes included on the checklist. For this sample, some of the outcomes in the social and economic domain did not have the same importance as they did for the sample in stage 1. Nonetheless, service users who we interviewed in this stage were keen for these to remain on the checklist because they recognised that they would be important for other people or, indeed, to themselves in the future.

It was clear from interviews with service users (at both stages of interviews) that although these outcomes were discussed separately, they were very much intertwined. Service user participants explained how the different outcomes affected each other. For example, physical health and functioning might be important for people because this allowed them to wash and dress themselves, feel safe, get into the wider environment and maintain their social and family relationships and roles. Meanwhile, maintaining social relationships might be an important outcome for people to achieve because this ensured that they were able to contribute to the wider community, maintain emotional well-being and financial security. Service users also described how the different levels of outcomes, as outlined in Chapter 4, were inter-related.

A social model of disability

Using a social model of disability as the theoretical underpinning for this research placed people with LTNCs at the centre of identifying important outcomes and allowed us to apply a progressive approach to the conception of outcomes. This service-user led, rather than professionally or organisationally driven, method was particularly useful because it highlighted issues of importance to people with LTNCs, some of which were not routinely asked about in assessments and many of which were not included in established outcome measures used to evaluate service provision. By taking a wider social view of outcomes rather than focusing on functional status outcomes, our work helped to illuminate a crucially important issue. It reinforced that by adopting a holistic, interdisciplinary approach to assessment and support, NRTs could promote desired outcomes (with, where necessary, the support of family, friends and services) despite the potential deterioration of service users’ physical and/or cognitive conditions.

However, this approach also highlighted some issues that were viewed as being outside the remit of some of the teams. As outlined in Chapters 3 and 4, there were different types and levels of integration across the NRTs and this influenced their ability or readiness to assess some of the outcomes included on the checklist. Some NRTs were required to focus on ‘core’ business as a response to organisational change and funding pressures. This meant that outcomes other than those about physical health and functioning and emotional well-being were not prioritised, which might be seen as antithetical to the concept of integrated service provision. As outlined in Chapter 6, two of the teams that adopted a particularly interdisciplinary approach to service provision felt that, although they might not be able to intervene around specific issues themselves, it was nonetheless important to assess the whole range of outcomes included on the checklist and to provide relevant information about referrals and to contact details for other services, as required. The importance of multidisciplinary teams in delivering good outcomes to service users is also highlighted by Petch et al. 103

We have shown how the different outcomes service users identified are inter-related; achieving one outcome can have a positive impact on achieving other outcomes and different levels of outcomes. Thus, commissioners need to understand these inter-relationships to be able to plan effective services for people with LTNCs.

Use of the case study approach

Case studies are useful for dealing with complexity in a ‘real-life context’,76 and their use here was a key strength of the study. This approach allowed us to explore, in-depth, the complexity of the organisations in which the services we studied were embedded. The diversity in each of our case sites was also a key strength. Diversity is important for quality in qualitative research,105 and our case sites were especially diverse in the models of NRTs and the approaches to integration. These differences meant that we were able to explore how the feasibility of using the checklist varied according to different models and approaches, and the influences these differences exerted.

Recruitment of organisational staff (stage 1)

We faced difficulties recruiting commissioning staff in some case sites, in both health and social care. In sites A and B, this resulted in a gap in our understanding of the NHS commissioning arrangements and structures. In site D, a similar gap in our understanding resulted due to adult social care declining involvement in the research. We have drawn on other sources of evidence (e.g. interviews with other organisational staff and documents) to redress this gap. However, we acknowledge that our understanding of the commissioning aspects of the organisations in case sites A, B and D might not be complete. As a result, the macro-level decision-making structures within which the teams operated might not be fully described.

Identifying the outcomes (stage 1)

In stage 1, we aimed to identify the outcomes important to those with LTNCs, and our approach to this was guided by earlier SPRU outcomes research. 3 However, an immediate challenge we faced was understanding the evidence behind these outcomes. First, it was not entirely clear how Harris et al. 3 had drawn upon the outcomes identified by Qureshi2 in order to produce their outcome framework. Second, there was little evidence about the meaning and parameters of the outcomes categorised within Harris et al. ’s3 outcomes framework.

At first, this presented difficulties as we had intended to use this framework as a guide when identifying the outcomes with our sample. However, it also presented us with the opportunity to develop the outcomes according to the meanings attached to them by participants in this study. Therefore, the outcomes identified were largely service-user driven and meaningfully rooted in their experiences of what they considered important in their lives. This is a major strength of the study.

NHS engagement with the research

Although all case sites and NRTs had agreed to take part, there was poor engagement from some of our case sites. This was mostly during the implementation stage, and was characterised by periodic non-response to telephone messages and e-mails, and a reluctance to try new ways of using the checklist. Non-response to telephone calls and e-mails was experienced across all sites at some point and we suspect that this partly reflected the issues of staffing pressures and service changes we discussed in Chapters 4 and 6.

The reluctance to use the checklist was most prominent in sites A and D. This was likely because they felt that it just did not work for them, along with other service pressures. In sites B and C, reluctance to use the checklist was episodic and appeared to be linked to service pressures. When these pressures alleviated, their engagement with the research resumed. They had a sense of ownership of the checklist and were keen to try different ways of using it.

Organisational change and instability at the service level may also have made it difficult to engage with the research. For example, in sites B and C, where engagement with the research was largely unproblematic, the teams were stable and experienced no changes to their service during the research period. In sites A and D, where engagement with the research was challenging, both teams were undergoing substantial change during the implementation stage of the research. It is possible that unstable periods of NHS reorganisations at the service level, among other issues, can create an environment that is not compatible with exploring new ways of working or engaging with research.

Similarities and differences between the teams suggest other factors that may also have influenced NHS engagement with the research. First, the teams in sites B and C were both large, whereas the team in site D was small, and the teams in site A were small before merging. Larger teams with more staff may facilitate interdisciplinarity (which was evident for teams in sites B and C), and enable them to deal with staff absences more easily than smaller teams. Second, the ‘closeness’ of the managers to the team may have played a role. The team managers in sites A and D played an overarching role, overseeing a number of teams. In sites B and C, the managers were part of the team and used the checklist. Teams in sites B and C also had designated administrators who were seen as integral members of the team. They played an important role in the day-to-day management of the research at the case sites; for example, they managed the documents and reminded staff to use the checklist and distribute invitation packs.

Recruitment of service users for the care record audit and stage 3 interviews

During the implementation phase, we intended to recruit up to 25 service users per site for the CRA. The purpose of the CRA was to monitor the use of the checklist and identify any difficulties in using it. The number of service users recruited for the CRA was much lower than we expected. Only two were recruited for site D, and the highest number we achieved was 10 for site C. The low numbers recruited in sites A and D (three and two, respectively) may reflect the difficulties they had in using the checklist, the limited number of times they were able to use it, and their generally low level of engagement with the research. The low numbers across all of the case sites may also reflect low numbers of eligible participants. Indeed, during the implementation phase, some teams noted that many of their referrals were clients with poor cognitive abilities who did not fulfil our eligibility criteria, and so they were not given an invitation pack.

We did attempt to maximise recruitment by asking teams to extend the implementation period and extend the sample by using the checklist in reviews as well during initial assessments. However, only the NRTs in sites B and C agreed to the former and sites C and D agreed to the latter. Neither of these methodological changes increased recruitment substantially enough to achieve the numbers we originally aimed for. Despite these difficulties, the CRA allowed us to monitor use of the checklist and enabled regular contact and meetings with the NRTs during implementation, which allowed us to explore any difficulties encountered in using it.

For the stage 3 interviews with service users, we had intended to recruit a maximum of five participants per site. Poor recruitment was again observed in sites A and D (n = 1 per site). We almost reached the target in site B (n = 4) and exceeded it in site C (n = 6). However, this did not affect our ability to explore the face validity of the outcomes. There were consistent messages in our data from those interviewed, suggesting that we achieved data saturation through the sample across the four case sites.

Recruitment of individuals from ethnic minority groups

Although one of our case sites had a large BME population in one area of the PCT, our recruited sample of staff and service users included few individuals from ethnic minority backgrounds. For the service user sample, it is possible that this reflected the NRT’s caseloads at the time of recruitment.

Understanding and assessing outcomes

Although working towards closer alignment, current NOFs remain separate, with one each for the NHS,54 adult social care55 and public health. 56 In identifying indicators that can measure improvement in services and reflect closer working, there have been efforts to move away from process measures. For example, the NHS and Adult Social Care NOFs have complementary indicators relating to quality of life for people with long-term conditions. However, the current NOFs are still seen as representing a hybrid of different levels of outcomes, some of which ‘are not outcomes themselves but rather outputs on the pathway to desired outcomes’. 67 This continued focus on improving the processes of care that are considered to be linked to health outcomes has been argued to undermine the professed aim, ‘to recalibrate the whole of the NHS system so it focuses on what really matters to patients and carers . . . the delivery of better health outcomes’. 106 Furthermore, the different types and levels of outcomes that constitute the NOFs make delineating cause-and-effect relationships between intervention/service and achieving outcomes, difficult. 67 Types of outcomes and relationships between services and outcomes need to be clear. Beginning with an understanding of what outcomes service users and carers want, underpins the task of designing and evaluating services around service user-driven outcomes.

Ways of gauging people’s experiences in relation to integrated care are widely recognised as problematic and underdeveloped. The NHS Future Forum report on integration recommended that new patient experience measures must be developed to evaluate patients’ experiences across whole journeys of care. 48 However, it was acknowledged in recent guidance that it would take time to produce a robust, long-term approach to measurement. 68

This research contributes to the development of that approach. Before commissioners and policy-makers can begin to assess service quality in relation to service users’ experiences of integrated care, there needs to be a clear understanding of the sorts of outcomes that people want and the types of service that are most effective in delivering those outcomes. In this project, we aimed to identify what people with LTNCs want and to see if those outcomes could be assessed in practice. Our research was set in a particular model of service delivery. In terms of contributing to unravelling cause-and-effect relationships, we were able to define outcomes derived from service user perspectives and definitions. It was also possible to draw conclusions around the feasibility of assessing outcomes of integrated care within these services, but inferences about how different models of integrated health and social care can affect outcomes are more speculative.

From both the current research and our earlier work on integrated services for people with LTNCs,1 we know that integrated NRTs frequently feel that they have difficulty in formally demonstrating to commissioners the ‘added value’ that their particular ways of working engender. Conventional outcome measures only partially reflect what such teams strive to achieve, tending to overlook broader social issues and the sorts of concerns, such as a sense of empowerment or self-worth, which are important to service users. Where teams work in an integrated way, identifying the outcomes that service users want and defining and formalising them into a checklist could help to reflect better what integrated teams do and offers the opportunity to develop an outcome tool for assessment.

The findings from this research suggested that:

• Many of the outcomes that are important to service users with LTNCs are not addressed in validated ‘outcome measures’.

• This has implications not only for service users’ experiences of the type and quality of care delivered, but also for those commissioning care in identifying priorities for investment.

Outcomes assessment in practice

All services endeavour to achieve equity in practice, but this may be compromised or interpreted in different ways. For example, we identified divergent approaches to exploring clients’ needs, and views differed about whose responsibility it was to identify clients’ needs beyond the strictly ‘clinical’. For some staff, identification of needs depended on clients assuming some responsibility for raising needs during assessment; they felt that staff should raise broad topic areas and then be led by the client. Other staff preferred to raise specific issues and directly ask clients if these were a particular concern for them.

Reluctance on the part of staff to raise particular issues was linked, in part, to concern about raising clients’ expectations when corresponding service support was absent. Staff across all case sites noted how services were contracting or disappearing and some saw discussions around, for example, exercise classes, skills training or relationship therapy as potentially raising service user expectations when there were no services available locally to offer support.

People with LTNCs also described these different approaches to raising concerns or problems in assessments; that staff sometimes raised issues directly and sometimes left it to clients to raise them. Although some service users were reluctant to discuss particular issues or saw some issues as being outside the team’s remit, there was, nonetheless, a consensus that staff should raise all outcomes on the checklist during assessment. This would help to limit the chance of outcomes being missed due to poor memory or service users’ lack of awareness of how the team might be able to help. Even if not every outcome was a priority for service users at the time of assessment, people with LTNCs suggested that raising every outcome opened a door to discussions that might be needed in the future.

We know that the outcomes on the checklist are important to service users because these were the key issues arising from our stage 1 interviews with people with LTNCs and are built on research undertaken by Qureshi2 and Harris et al. 3 with different groups of adults. It is important, therefore, that these outcomes are raised at assessment by staff so that clients’ needs are not missed and that clients receive an equitable assessment.

In the context of long-term conditions, support to maintain a level of functioning or participation is important. NRTs frequently worked with service users to maintain, rather than being able to improve, activities. Conventional outcome measurement tends to focus on pathways to recovery and rarely accounts for the potential deterioration associated with long-term conditions. Moreover, taking time to explore the range of meanings service users attribute to outcomes, rather than relying on service definitions and staff perceptions, is important. For example, although ‘safety and security’ might feature in NRTs’ assessments, in existing paperwork it has tended to be addressed in terms of limiting risk, falls assessment and providing aids and adaptations. The parameters of the service user-defined outcome were more wide-ranging and included feelings of vulnerability, as well as a need to balance safety and security against a desire for independence.

Our research indicated the following:

• Equity of assessment can be compromised if practitioners do not raise each outcome.

• Service availability may affect whether or not outcomes are assessed.

• In the context of long-term conditions, assessment of service user outcomes must account for potential fluctuation and/or deterioration over time.

• Understanding of and meanings attributed to individual outcomes by service users may differ from conventional staff or service-derived outcomes.

Innovation and integration

Services in health and social care have been required to respond to policy imperatives around innovation and integration promoted by successive governments. Evidence suggests that, most recently, commitment to such initiatives tends to have been overtaken by the demands of major structural reorganisation. Organisational change can lead to a loss of, or hiatus in, established professional roles and relationships that can affect attitudes to innovation and undermine the ability of front-line services to embrace change. This can have an impact on capacity to consider new ways of working within the immediate, and across the wider, service context.

The findings from our research suggested that:

• Restructuring of health and social care services fractures existing integration arrangements.

• Instability resulting from restructuring affects services’ scopes to innovate around integration.

Organisational staff interviews

You are being invited to take part in a research study being conducted by researchers from the Social Policy Research Unit at the University of York. This study is funded by the National Institute for Health Research. It has been reviewed and approved by [name of local PCT R&D office] Primary Care Trust Research and Development Office, the [name of REC] and the Association of Directors of Adult Social Services.

Before you decide whether you wish to take part or not, it is important for you to understand why the research is being done and what it will involve. Please read the following information carefully and take your time to decide whether you wish to take part.

What is the purpose of the study?

These interviews form part of a research project that focuses on levels and type of organisational and service integration. The research concentrates on the support provided by an integrated community team in your area and the outcomes that people who use this service expect from receiving this support. However, we are also interested in the wider context in which this team works and the mechanisms in place in your PCT area that enable services and practitioners to work together to provide continuity of care.

We are interested in learning about your experiences of working in [PCT name] and hearing your opinions about whether and how service integration is developing locally in general and for neurological services specifically.

Why have I been contacted?

You have been identified as playing a central role in services locally for people with long-term neurological conditions and/or in planning/delivering integrated approaches to service provision.

What are the benefits of this research?

The information you provide will be invaluable in identifying the issues, including facilitators and barriers, to the provision of a seamless service for people with long-term neurological conditions.

Will my taking part in this study be kept confidential?

Your involvement in the study, and the information that you provide, will be kept confidential. A personal identification number will be used throughout the research for each participant and all data will be anonymised. Data will be held in accordance with the 1998 Data Protection Act and University of York Ordinances.

There are rare circumstances where the researcher is required to disclose someone’s participation to a third party. However, this will only happen if the researcher is extremely concerned about the participant’s well-being. We will not tell the third party anything that was said in the interview unless it is directly related to the reason we were concerned.

Will taking part in this study affect my employment?

No, taking part in the research will not affect your employment in any way. Similarly, if you decide not to take part your employment will not be affected in any way. It is up to you whether or not you decide to take part and your decision will be kept completely confidential.

What will taking part involve?

If you would like to take part, you will need to complete the response form and return it to me in the enclosed freepost envelope. Please retain this information sheet.

I will then contact you to answer any questions you may have and to arrange a mutually agreeable time and place to conduct the interview.

On the day of the interview there will be further opportunity for you to ask questions and raise concerns. If you are still happy to go ahead, I will ask you to complete a consent form (a copy of which will be given to you for your records).

Note for the attention of REC – For telephone interviews, the following paragraph will replace the underlined paragraph above – it will not be italicised.

If you are happy to go ahead, I will send you a consent form. Please read and initial in the box after each of the four statements if you agree to them, then sign and date it and return it to us at the Freepost address: LTNC Team, Social Policy Research Unit, University of York, FREEPOST YO378, Heslington, York, YO10 1GY. Once we have received the form and signed it, we will return a copy to you and will contact you to conduct the interview. On the day of the interview there will be further opportunity for you to ask questions and raise concerns and if you are still happy to go ahead, the interview will be conducted.

The interview will take approximately 45 minutes and give you an opportunity to describe your views fully. It will be audio-recorded (with your permission). Recordings will be destroyed when the research is complete.

If you do decide to take part, you are still free to withdraw at any time and without giving a reason.

What if I choose not to take part?

Participation in this research is entirely voluntary. If you choose not to take part, just complete the top half of the response form indicating your choice and return it to me in the freepost envelope so that I do not contact you again. You do not have to provide a reason or complete the demographic form, but doing so would enable me to understand your reasons for declining to participate which might help when planning future studies. (Note: your reasons will be recorded anonymously. )

If you have any questions or would like more information, please contact [name of researcher] on [telephone number] email [email address].

Thank You.

What is the purpose of the study?

These interviews form part of a research project that focuses on levels and type of organisational and service integration. The research concentrates on the support provided by the [name of integrated community team] and the outcomes that people who use the [name of integrated community team] expect from receiving this support. However, we are also interested in the wider context in which this team works and the mechanisms in place in your PCT area that enable services and practitioners to work together to provide continuity of care.

We are interested in learning about your experiences of working [in/with] the [name of integrated community team] and hearing your opinions about whether and how service integration is developing in general and for neurological services specifically. We would also be interested to hear about the methods the team uses for monitoring outcomes for your clients.

Why have I been contacted?

You have been identified because you work with or in the [name of integrated community team].

What are the benefits of this research?

The information you provide will be invaluable in identifying the issues, including facilitators and barriers, to the provision of a seamless service for people with long-term neurological conditions and to help understand how the [name of integrated community team] works.

As you know, we will be talking to people who use the [name of integrated community team]. The information they provide will be used to develop an outcome checklist covering issues that people with neurological conditions tell us are important to them.

The information that you provide will be crucial when it comes to developing the outcome checklist for use within your everyday practice with new clients.

Will my taking part in an interview be kept confidential?

Your involvement in the study, and the information that you provide, will be kept confidential. A personal identification number will be used throughout the research for each participant and all data will be anonymised. Data will be held in accordance with the 1998 Data Protection Act and University of York Ordinances.

There are rare circumstances where the researcher is required to disclose someone’s participation to a third party. However, this will only happen if the researcher is extremely concerned about the participant’s well-being. We will not tell the third party anything that was said in the interview unless it is directly related to the reason we were concerned.

Will taking part in an interview affect my employment?

No, taking part in the research will not affect your employment in any way. Similarly, if you decide not to take part your employment will not be affected in any way. It is up to you whether or not you decide to take part and your decision will be kept completely confidential.

What will taking part involve?

If you would like to take part, you will need to complete the response form and return it to me in the enclosed freepost envelope. Please retain this information sheet.

I will then contact you to answer any questions you may have and to arrange a mutually agreeable time and place to conduct the interview.

On the day of the interview there will be further opportunity for you to ask questions and raise concerns. If you are still happy to go ahead, I will ask you to complete a consent form (a copy of which will be given to you for your records).

Note for the attention of REC – For telephone interviews, the following paragraph will replace the underlined paragraph above – it will not be italicised.

If you are happy to go ahead, I will send you a consent form. Please read and initial in the box after each of the four statements if you agree to them, then sign and date it and return it to us at the Freepost address: LTNC Team, Social Policy Research Unit, University of York, FREEPOST YO378, Heslington, York, YO10 1GY. Once we have received the form and signed it, we will return a copy to you and will contact you to conduct the interview. On the day of the interview there will be further opportunity for you to ask questions and raise concerns and if you are still happy to go ahead, the interview will be conducted.

The interview will take approximately 45 minutes and give you an opportunity to describe your views fully. It will be audio-recorded (with your permission). Recordings will be destroyed when the research is complete.

If you do decide to take part, you are still free to withdraw at any time and without giving a reason.

What if I choose not to take part?

Participation in this research is entirely voluntary. If you choose not to take part, just complete the top half of the response form indicating your choice and return it to me in the freepost envelope so that I do not contact you again. You do not have to provide a reason or complete the demographic form, but doing so would enable me to understand your reasons for declining to participate which might help when planning future studies. (Note: your reasons will be recorded anonymously. )

If you have any questions or would like more information, please contact [name of researcher] on [telephone number] email [email address].

Thank You.

What is the purpose of the study?

We are looking at services in your area that co-ordinate care for people with neurological conditions. We want to know how far they are able to meet people’s needs. The research is looking at the support provided by the [name of integrated community team] and what people who use the [name of integrated community team] expect from receiving this support.

We are interested to hear about the type of goals you might want to achieve and how the team supports you in working towards them.

Why have I been contacted?

You have been sent this pack because we understand you receive support from the [name of integrated community team].

What are the benefits of this research?

The information you provide will help us to understand what teams like the [name of integrated community team] can offer people with a neurological condition. This information will be used to develop a checklist of issues that staff need to think about when they are supporting you. The checklist will be about issues that people, who use community teams like the [name of integrated community team], have told us are important to them.

The checklist will be used by the team to make sure that they are thinking about the things that are important to their clients. We also hope that it can be used to show the benefits that teams like the [name of the integrated community team] can have on the lives of people with neurological conditions.

Will my taking part in this study be kept confidential?

Your involvement in the study, and the information that you provide, will be kept confidential. Everyone who takes part will be given a personal number so that they cannot be identified and all information provided will be anonymised. We will hold all data in line with the 1998 Data Protection Act and University of York Ordinances.

There are rare circumstances where the researcher is required to disclose someone’s participation to a doctor, nurse or other health care professional. However, this will only happen if the researcher is extremely concerned about the participant’s well-being. We will not tell the professional anything that was said in the interview unless it is directly related to the reason we were concerned.

Will taking part in this study affect my care?

No, taking part will not affect your care or the services you receive in any way. Likewise, if you decide not to take part, your care will not be affected in any way. It is up to you whether or not you decide to take part and your decision will be kept completely confidential.

What will taking part involve?

If you would like to take part, you will need to complete the response form and return it to me in the freepost envelope. Please keep this information sheet.

I will then contact you to answer any questions you may have and to arrange a time and place that suits you, to conduct the interview.

On the day of the interview, you will be able to ask more questions and raise any concerns. If you are still happy to go ahead, I will ask you to complete a consent form (and give you a copy of it to keep). The interview will take about 45 minutes and give you an opportunity to describe your views fully. It will be audio-recorded (with your permission). Recordings will be destroyed when the research is complete.

If you do decide to take part, you are still free to withdraw at any time and without giving a reason.

What if I choose not to take part?

Taking part in this research is entirely voluntary. If you choose not to take part, just complete the top half of the response form indicating your choice and return it to me in the freepost envelope so that I do not contact you again. You do not have to give a reason or complete the demographic form, but doing so would help me to understand why you did not want to take part, which might help when planning future studies. (Note: your reasons will be recorded anonymously. If you have decided not to take part, please do not give your name. )

If you have any questions or would like more information, please contact [name of researcher] on [telephone number] email [email address].

Thank You.

What is the purpose of the study?

We are looking at services in your area that co-ordinate care for people with neurological conditions. We want to know how successful they are at meeting people’s needs. The research focuses on the support provided by the [name of integrated community team] and what people who use the [name of integrated community team] expect from receiving this support.

We want to hear your views on how well you feel the [name of integrated community team] work with you and what things about the team are important to you.

Why have I been contacted?

You have been contacted because we understand you support someone who is a client of the [name of integrated community team]. This person has suggested that we contact you to hear your point of view.

What are the benefits of this research?

The information you provide will help us to understand what teams like the [name of integrated community team] can offer people with neurological conditions and those who support them. This information will be used to develop a checklist of issues that staff need to think about when they are supporting you and the person you provide care for. The checklist will cover the issues that people who use community teams like the [name of integrated community team] have told us are important to them.

The checklist will be used by the team to make sure they are thinking about the things that are important to their clients. We also hope that it can be used to show the benefits that teams like the [name of the integrated community team] can have on the lives of people with neurological conditions.

Will my taking part in this study be kept confidential?

Your involvement in the study, and the information that you provide, will be kept confidential. Everyone who takes part will be given a personal number so that they cannot be identified and all information provided will be anonymised. We will hold data in line with the 1998 Data Protection Act and University of York Ordinances.

There are rare circumstances where the researcher is required to disclose someone’s participation to a doctor, nurse or other health care professional. However, this will only happen if the researcher is extremely concerned about the participant’s well-being. We will not tell the professional anything that was said in the interview unless it is directly related to the reason we were concerned.

Will taking part in this study affect the support I, or the person I care for, receive?

No, taking part will not affect the support you, or the person you care for, receive in any way. Likewise, if you decide not to take part, the support that you or the person you care for receive will not be affected in any way. It is up to you whether you decide to take part and your decision will be kept completely confidential.

What will taking part involve?

If you would like to take part, you will need to complete the response form and return it to me in the freepost envelope. Please keep this information sheet.

I will then contact you to answer any questions you may have and to arrange a time and place that suits you, to conduct the interview.

On the day of the interview, you will be able to ask more questions and raise any concerns. If you are still happy to go ahead, I will ask you to complete a consent form (and give you a copy to keep). The interview will take about 45 minutes and give you an opportunity to describe your views fully. It will be audio-recorded (with your permission). Recordings will be destroyed when the research is complete.

If you do decide to take part, you are still free to withdraw at any time and without giving a reason.

What if I choose not to take part?

Participation in this research is entirely voluntary. If you choose not to take part, just complete the top half of the response form indicating your choice and return it to me in the freepost envelope so that I do not contact you again. You do not have to give a reason or complete the demographic form, but doing so would help me to understand why you did not want to take part, which might help when planning future studies. (Note: your reasons will be recorded anonymously. )

If you have any questions or would like more information, please contact [name of researcher] on [telephone number] email [email address].

Thank You.

What is the purpose of the study?

We are looking at services in your area that co-ordinate care for people with neurological conditions. We want to know how far they are able to meet people’s needs. The research is looking at the support provided by the [name of integrated community team] and what people who use the [name of integrated community team] expect from receiving this support.

The [name of integrated community team] and some of their clients have helped us to develop a new checklist that covers issues staff need to think about when supporting their clients. We have been working closely with the team to find out the best ways to use the checklist. They are now using it as part of their everyday work. The checklist is held in clients’ care records. As researchers, our role is to monitor how practical it is to use this checklist as part of the team’s everyday work. To do this, we are interested in looking at the care records held by the [name of integrated community team] to see how the checklist is being used. We also want to know what may need to change so that it works better and if using it affects how the team supports you.

Why have I been contacted?

You have been contacted because we understand you have recently been referred to the [name of integrated community team]. As a new client, the [name of integrated community team] will be using the checklist with you as part of their usual support and assessments. We would like to monitor your care records held by the [name of integrated community team] to help us assess how practical it is for the team to use the checklist as part of their everyday work.

What are the benefits of this research?

The checklist will be used by the team as part of their everyday work to make sure that they are considering things that are important to their clients. The information you provide will help us to understand how the checklist can work in practice and if it covers the issues that are important to you. We also hope that it can be used to show the benefits that teams like the [name of the integrated community team] can have on the lives of people with neurological conditions.

Will my taking part in this study be kept confidential?

Your involvement in the study, and the information that is collected, will be kept confidential. However, a member of the [name of integrated community team] will know you are involved because they will prepare your care record ready for us to look at when we visit the team’s headquarters. The person who prepares your records will be required to keep your involvement in the study confidential. We will ask a member of the team to prepare the care records for us so that we only see information about the checklist and we do not see any records of clients who are not involved in this research.

Everyone who takes part will be given a personal number so that they cannot be identified. All data will be anonymised. Data will be held in accordance with the 1998 Data Protection Act and University of York Ordinances.

Will taking part in this study affect my care?

No, taking part will not affect your care or the services you receive in any way. Likewise, if you decide not to take part, your care will not be affected in any way. It is up to you whether or not you decide to take part and your decision will be kept confidential.

What will taking part involve?

If you would like to take part, you will need to complete the consent form and return it to me in the freepost envelope. Please keep this information sheet.

This consent will only enable the researchers to see your care records held by the [name of integrated community team]. We do not need to see, and will not be able to access, your records held by any other organisation or professional, including for example, your GP notes, hospital notes and/or social care notes.

Once the researchers have received your consent form saying that we can access your care records held by the [name of integrated community team], the researchers will visit the team’s office and monitor the use of the checklist in your records every month for three months. We have a list of questions that we need to answer when we look at the checklist in your care records. We will only collect information from the checklist in your records that relates to these. These questions are included at the end of this information sheet.

Although we will do all we can to avoid it, it is possible that the research team may see information not relevant to the research while observing your records. Any information observed in this way will not be collected, recorded or used by the research team.

If you do decide to take part, and you have any questions or concerns during the time we will be looking at your care records, please do contact the research team using the contact details below. If you consent to take part, you are still free to withdraw at any time and without giving a reason. Just let us know, and we will stop reviewing your care records.

You will see that the consent form also asks if you are willing to be contacted in the future about taking part in an interview. This interview will be about your experience of staff using the checklist with you. If you say that you would be happy for us to contact you in the future about this, you will need to include some contact details but need do nothing more at this stage. We will not contact everyone who has agreed to this but if we do contact you, we will send you an information pack, similar to this one, that will explain what taking part in an interview will involve.

What if I choose not to take part?

Participation in this research is entirely voluntary. If you choose not to take part, just complete the decline form and return it to me in the freepost envelope. You do not have to give a reason or complete the demographic form, but doing so would help me to understand why you did not want to take part, which might help when planning future studies. (Note: your reasons will be recorded anonymously. If you have decided not to take part, please do not give your name. )

If you have any questions or would like more information, please contact [name of researcher] on [telephone number] email [email address].

Thank You.

What is the purpose of the study?

We are interested in learning about the experiences of staff using the outcome checklist, developed earlier in this project and based on views of service users and carers, as part of routine practice with new clients in the [name of integrated community team]. We want to hear your opinions about how this worked in practice, barriers and facilitators to its use, and whether it has had any impact on your practice or the practice of the team more widely.

Why have I been contacted?

You have been identified as being a member of the [name of integrated community team] and as having experience of using the outcome checklist in practice.

What are the benefits of this research?

The information you provide will be invaluable in understanding the factors that influence the feasibility of using these types of checklists in practice and to identify factors that may make their implementation successful.

The information that you provide will be crucial when it comes to developing the outcome checklist for use in other community based teams that are co-ordinating care, within and across services and sectors, for people with neurological conditions.

Will my taking part in an interview be kept confidential?

Your involvement in the study, and the information that you provide, will be kept confidential. A personal identification number will be used throughout the research for each participant and all data will be anonymised. Data will be held in accordance with the 1998 Data Protection Act and University of York Ordinances.

There are rare circumstances where the researcher is required to disclose someone’s participation to a third party. However, this will only happen if the researcher is extremely concerned about the participant’s well-being. We will not tell the third party anything that was said in the interview unless it is directly related to the reason we were concerned.

Will taking part in an interview affect my employment?

No, taking part in the research will not affect your employment in any way. Similarly, if you decide not to take part your employment will not be affected in any way. It is up to you whether or not you decide to take part and your decision will be kept completely confidential.

What will taking part involve?

If you would like to take part, you will need to complete the response form and return it to me in the enclosed freepost envelope. Please retain this information sheet.

I will then contact you to answer any questions you may have and to arrange a mutually agreeable time and place to conduct the interview.

On the day of the interview there will be further opportunity for you to ask questions and raise concerns. If you are still happy to go ahead, I will ask you to complete a consent form (a copy of which will be given to you for your records).

NOTE for attention of REC – For telephone interviews, the following paragraph will replace the underlined paragraph above – it will not be italicised.

If you are happy to go ahead, I will send you a consent form. Please read and initial in the box after each of the four statements if you agree to them, then sign and date it and return it to us at the Freepost address: LTNC Team, Social Policy Research Unit, University of York, FREEPOST YO378, Heslington, York, YO10 1GY. Once we have received the form and signed it, we will return a copy to you and will contact you to conduct the interview. On the day of the interview there will be further opportunity for you to ask questions and raise concerns and if you are still happy to go ahead, the interview will be conducted.

The interview will take approximately 45 minutes and give you an opportunity to describe your views fully. It will be audio-recorded (with your permission). Recordings will be destroyed when the research is complete.

If you do decide to take part, you are still free to withdraw at any time and without giving a reason.

What if I choose not to take part?

Participation in this research is entirely voluntary. If you choose not to take part, just complete the top half of the response form indicating your choice and return it to me in the freepost envelope so that I do not contact you again. You do not have to provide a reason or complete the demographic form, but doing so would enable me to understand your reasons for declining to participate which might help when planning future studies. (Note: your reasons will be recorded anonymously. )

If you have any questions or would like more information, please contact [name of researcher] on [telephone number] or email [email address].

Thank You.

What is the purpose of the study?

We are interested in learning about the experiences of staff using the outcome checklist, developed earlier in this project and based on views of service users and carers, as part of routine practice with new clients in the [name of integrated community team]. We want to hear your opinions about how this worked in practice, barriers and facilitators to its use, and whether it has had any impact on your practice or the practice of the team more widely.

Why have I been contacted?

You have been identified as being a member of the [name of integrated community team] and as having experience of using the outcome checklist in practice.

What are the benefits of this research?

The information you provide will be invaluable in understanding the factors that influence the feasibility of using these types of checklists in practice and to identify factors that may make their implementation successful.

The information that you provide will be crucial when it comes to developing the outcome checklist for use in other community-based teams that are co-ordinating care, within and across services and sectors, for people with neurological conditions.

Will my taking part in a group interview be kept confidential?

The research team will keep your involvement in the study, and the information that you provide, confidential. Similarly, your colleagues involved in the group interview, will be required to keep your involvement in the study, and the information that you provide, confidential unless you decide between you that some information can be shared with other team members to aid learning and development.

There are rare circumstances where the researcher is required to disclose someone’s participation to a third party. However, this will only happen if the researcher is extremely concerned about the participant’s well-being. We will not tell the third party anything that was said in the interview unless it is directly related to the reason we were concerned.

A personal identification number will be used throughout the research for each participant and all data will be anonymised. Data will be held in accordance with the 1998 Data Protection Act and University of York Ordinances.

Will taking part in an interview affect my employment?

No, taking part in the research will not affect your employment in any way. Similarly, if you decide not to take part your employment will not be affected in any way. It is up to you whether or not you decide to take part and your decision will be kept completely confidential.

What will taking part involve?

If you would like to take part, you will need to complete the response form, indicating that you are happy to take part in a group interview, and return it to me in the enclosed freepost envelope. Please retain this information sheet.

I will then contact you to answer any questions you may have. I will contact all members of the [name of integrated community team] who have agreed to take part in a group interview and arrange the interview for a time that suits the most people.

On the day of the group interview there will be further opportunity for you to ask questions and raise concerns. If you are still happy to go ahead, I will ask you to complete a consent form (a copy of which will be given to you for your records).

The group interview will take approximately one and a half hours, but no more than two hours and give you an opportunity to describe your views fully and discuss your opinions with your colleagues. It will be audio-recorded (with the permission of everyone participating). Recordings will be destroyed when the research is complete.

If you do decide to take part, you are still free to withdraw at any time and without giving a reason.

What if I choose not to take part?

Participation in this research is entirely voluntary. If you choose not to take part, just complete the top half of the response form indicating your choice and return it to me in the freepost envelope so that I do not contact you again. You do not have to provide a reason or complete the demographic form, but doing so would enable me to understand your reasons for declining to participate which might help when planning future studies. (Note: your reasons will be recorded anonymously. )

If you have any questions or would like more information, please contact [name of researcher] on [telephone number] email [email address].

Thank You.

What is the purpose of the study?

We are looking at services in your area that co-ordinate care for people with neurological conditions. We want to know how far they are able to meet people’s needs. The research has focused on the support provided by the [name of integrated community team] and what people who use the [name of integrated community team] expect from receiving this support.

In an earlier part of the research, people told us the most important things they want from a service like the [name of integrated community team]. The information was used to develop a checklist of issues that staff need to think about when they are supporting clients. Staff in the [name of integrated community team] have been using this checklist and we have been working with them to see how useful this is.

We are now interested in hearing the views of clients with whom the checklist has been used.

Why have I been contacted?

Some time ago, we contacted you about monitoring the use of the checklist in your care records held by the [name of integrated community team]. When you agreed to this, you also said that you might be willing to take part in an interview. We are contacting you now because we want to hear about your views about the team using the checklist with you.

What are the benefits of this research?

The information you provide will be helpful in understanding whether the checklist has covered the issues you feel are important and if you think the team dealt with these issues for you. We also hope that it can be used to show the benefits that teams like the [name of the integrated community team] can have on the lives of people with neurological conditions.

Will my taking part in this study be kept confidential?

Your involvement in the study, and the information that you provide, will be kept confidential. Everyone who takes part will be given a personal number so that they cannot be identified and all information provided will be anonymised. We will hold all data in line with the 1998 Data Protection Act and University of York Ordinances.

There are rare circumstances where the researcher is required to disclose someone’s participation to a doctor, nurse or other health care professional. However, this will only happen if the researcher is extremely concerned about the participant’s well-being. We will not tell the professional anything that was said in the interview unless it is directly related to the reason we were concerned.

Will taking part in this study affect my care?

No, taking part will not affect your care or the services you receive in any way. Likewise, if you decide not to take part, your care will not be affected in any way. It is up to you whether or not you decide to take part and your decision will be kept completely confidential.

What will taking part involve?

If you would like to take part, you will need to complete the response form and return it to me in the freepost envelope. Please keep this information sheet.

I will then contact you to answer any questions you may have and to arrange a time and place that suits you, to conduct the interview.

On the day of the interview, you will be able to ask more questions and raise any concerns. If you are still happy to go ahead, I will ask you to complete a consent form (and give you a copy of it to keep). The interview will take about 45 minutes and give you an opportunity to describe your views fully. It will be audio-recorded (with your permission). Recordings will be destroyed when the research is complete.

If you do decide to take part, you are still free to withdraw at any time and without giving a reason.

What if I choose not to take part?

Participation in this research is entirely voluntary. If you choose not to take part, just complete the top half of the response form indicating your choice and return it to me in the freepost envelope so that I do not contact you again. You do not have to give a reason or complete the demographic form, but doing so would help me to understand why you did not want to take part, which might help when planning future studies. (Note: your reasons will be recorded anonymously. If you have decided not to take part, please do not give your name. )

If you have any questions or would like more information, please contact [name of researcher] on [telephone number] email [email address].

Thank You

Example consent form

Example consent form (PDF download)

Example response form

Example response form (PDF download)

Example demographic form

Example demographic form (PDF download)

Demographic information

• Designation.

• What their role involves.

Organisation

• Organisational structure.

• Organisational aims around.

  • Integration.

  • Long-term neurological conditions.

Integration

• Integration strategy/policy.

• Progress towards.

  • Integration.

  • Long-term neurological conditions.

• Facilitators to integration.

• Barriers to integration.

• Suggestions for promoting service/organisational integration.

Service landscape (statutory and non-statutory organisations/services)

• Organisations/services working in an integrated way.

  • Within sector.

  • Across sectors.

• Organisations working towards integration locally.

  • Within sector.

  • Across sectors.

• Levels of integration.

  • Which services.

  • Which staff.

Impact for service users of an integrated approach to service provision

• Positive impact.

• Negative impact.

Structures/processes that could improve integrated working

Identification of:

• other key contacts

• relevant meetings

• documentation.

Demographic information

• Designation.

• What their role involves.

What do they know of PCTs/Local Authorities

• Integration strategy/policy.

• Progress towards:

  • integration.

• Facilitators to integration.

• Barriers to integration.

• Suggestions for promoting service/organisational integration.

Service landscape

• How their service fits into the wider landscape for people with LTNCs and their carers.

• Members of team:

  • disciplines.

• The extent to which the team is integrated/promotes integrated working practices.

  • Work with other teams/services within the same sector.

  • Work with other teams/services and organisations on other sectors.

  • Nature of arrangements for integrated working (formal, informal arrangements, etc.)

Views on impact of integration

• On their practice.

• For their clients.

• For carers/family members of their clients.

Current methods of assessing outcomes of their service

• What processes are in place for assessing outcomes of their service?

  • Who is involved in assessments?

  • What assessment tools are used?

  • How often are they undertaken?

  • How are assessments stored?

Identification of:

• other key contacts

• relevant meetings

• documentation.

Outcomes generated by previous research (ask following questions about each outcome in the list below)

• Is this important to you?

• What kind of things are important about [the outcome]?

  • In what ways?

• What other things about [the outcome] are important to you?

Personal comfort outcomes

• Personal hygiene.

• Safety/security.

• Desired level of cleanliness of home.

• Emotional well-being.

• Physical health.

Economic outcomes

• Access to paid employment as desired.

• Access to training.

• Access to further/higher education/occupation.

• Access to appropriate training for new skills.

Social outcomes

• Access to mainstream leisure activities.

• Access to support in parenting role.

• Access to support for personal secure relationships.

• Access to advocacy/peer support.

• Citizenship (being involved in decision-making).

Autonomy outcomes

• Access to all areas of the home.

• Access to locality and wider environment.

• Communication access.

• Financial security.

Does the [name of team] help you achieve these outcomes?

• In what ways?

Prompt: Carer for interview?

Demographic information

• Relationship to service user.

• Any other carers.

• How long been a carer.

Role in supporting [service user]?

Experience of working with the [name of team] to support service user

• How do you think the team sees you?

  • (e.g. recipient of support in their own right; integral team member; co-provider of services)

• What is it about the way the team works that makes you think that?

  • (e.g. practical arrangements for working with team)

• How would you like to be seen by the team?

  • Why?

What factors help/hinder working with a team like this?

Demographic information

• Designation.

• What their role involves.

Experience of using the outcome checklist

• Have they completed it for any new/re-referred clients?

• How often did they use it?

• What types and level of information did they record?

Procedures

• Were they able to follow procedures the team developed for use of the outcome checklist?

  • If not, why not?

  • What could be done to overcome these issues in future?

• Was the format easy to use in practice?

  • If not, why not?

  • What could be done to overcome these issues in future?

• Were there any other difficulties in using the outcome checklist?

  • What were these?

  • What could be done to overcome them in future?

• Were there any benefits to using the outcome checklist?

  • For clients and/or their carers/family members?

  • For the interviewee?

  • For the team?

Impact

• Did any actions arise as a result of using the outcome checklist?

  • If so, what were they? Why?

  • If not, why not?

• Are they aware of any changes in practice related to integration/care co-ordination as a result of using the outcome checklist in routine practice?

  • In their practice?

  • In the practice of the team?

• Would it be something you would recommend to other similar teams to use?

  • If yes, why?

  • If no, why not?

    • What would need to change?

Experience of receiving support from the Community Integrated Team

• Benefits of receiving support from this particular team.

  • Reasons for this view.

• Negatives of receiving support from this particular team.

  • Reasons for this view.

How they feel the Community Integrated Team works with?

• Them.

• Their carers/family members.

• Other disciplines.

• Other teams/services within the same sector.

• Other teams/services and organisations on other sectors.

Level of integration evident in team’s practice

• Within team.

• Within sector.

• Across sectors.

Whether they were aware of the staff using the outcome checklist

Whether the outcome checklist covered the issues they felt were important to them and to their families/carers

Staff interviews: description framework

Staff interviews: organisational structures and integration framework

Service user interviews: description framework

Neurological diagnosis

Age

Gender

Ethnicity

Level of mobility

Lives alone?

Service user interviews: outcomes framework

During the analysis process, we added additional charts for each of the higher-level outcomes we identified: (Independence, Choice, Control, Normality, Self-esteem) and for process-related outcomes.

Staff framework: stage 3

Service user framework: stage 3

Development of outcomes checklist: issues to discuss with teams

The outcomes checklist will consist of a list of ‘outcomes’ (i.e. issues which service users have told us are important to them). The same set of outcomes will be used in the checklist for the four case study sites, but the format of the checklist and how it is used can be tailored to meet the requirements of the team. Possible issues to consider when developing the outcomes checklist are described further below.

Using the checklist and recruiting clients

The aim of this research is to develop an outcomes checklist and to explore the feasibility of using this in everyday practice.

Over the past year, we have been speaking to people with LTNCs, who use teams like yours, to find out what is important to them. From their accounts, we have developed a checklist of outcomes that people with LTNCs say are important. We are now asking you try out this checklist in practice. At the same time, the research team will monitor client records to see how the checklist is being used in practice.

We are asking you to:

1. Use the checklist in practice with your new/re-referred clients that fulfil the criteria listed below.

2. Pass out recruitment packs to these clients so that the research team can monitor their records and see how the tool is being used in practice. (We need to recruit up to 25 clients.)

This document tells you how to use the outcome checklist and recruit clients to the study.

In the week of the 17 October, you will receive a PDF copy and hardcopies of the outcomes checklist and client recruitment packs. We would like you to start using the outcomes checklist and handing out recruitment packs as soon as possible after you receive them. We will send you 25 recruitment packs and copies of the outcome checklist in the first instance. We will send you more later if needed.

The role of the research team in this phase of the study

We will contact you each month to find out how many clients have received recruitment packs, and their ID number. If we have not received a response from the client after three weeks, we will ask you to give that client a reminder recruitment pack. We will prepare and send this to you.

We will visit case sites each month, starting mid-November 2011, and monitor the records of those clients who have agreed for us to do this (see table below). We will let you know in advance whose records we will need to see when we visit. When we visit, it is important that we do not see details of clients who are not involved in the research.

Later, we’d like to talk to you about your experiences of using the checklist. We will be in touch with your team about this in Summer 2012.

If you have any questions or concerns about how to use the checklist or recruiting clients, please don’t hesitate to contact the research team.

[contact details removed]

Example outcomes checklist

Example outcomes checklist (PDF download)

Initial assessment forms

For all sites, we obtained copies of the initial assessment forms used with clients, as well as additional documentation used. We provide a brief description below of each team’s initial assessment form. This description does not include the basic personal information prompts (e.g. diagnosis, consultant name, etc.) on the form, or issues/domains assessed through other documentation used by the teams (e.g. measures, quality-of-life scales, difficulty/ability checklists).

Other documentation used in assessment

In addition to the initial assessment form, we also obtained copies of other documentation used by the teams in clients’ assessments. Brief descriptions are given below for each site.