Independent information and support services funded by the Scottish Government: review findings

6. Direct Client Support

This chapter looks at findings from the interviews and survey in relation to:

• The experiences of supported people and their carers of looking for information and support.
• Awareness-raising and capacity-building, including community outreach and training and development work.
• Support around applying for a social care budget, assessment and review.
• Brokerage around setting up and managing formal or informal support.
• The use of peer support, peer involvement and community development approaches within projects.

Key Findings

Service user feedback suggests that people tended to have made contact with a SIRD project relatively quickly and easily. Those who had struggled to find independent information or support tended to be living in rural areas or be in the older age group. Unless already in contact with the project, people had most frequently been given information about it by: a social worker; another support or care worker; or family or friends.

Project users were most likely to be looking for advice on which self-directed support option to use or for practical support and assistance in relation to Options 1 or 4. A number of projects were carrying out awareness-raising and community capacity-building work, including outreach work to increase general awareness and understanding amongst the wider public. There was also a range of awareness-raising activity targeting specific groups, such as carers. Overall, projects feel their community-focused awareness-raising work has been useful.

SIRD projects have also been involved in delivering training or personal development sessions or courses for supported people or carers covering self-directed support in greater depth. Other projects have been involved in the delivery of personal development courses, with a focus on supporting people to gain the knowledge, skills and confidence to take control of their own lives and make their own choices.

Many SIRD projects place considerable value and importance on their work to support people through the assessment for, or review of, a social care budget. For those projects delivering what might be described as ‘end-to-end’ support, there was a clear preference for engagement with clients at an early stage. When working with people to prepare for a social work assessment or review, project outcomes tended to refer to trying to reduce clients’ anxieties and make sure that assessments or reviews are well-handled from their clients’ perspective.

A smaller range of projects were involved in supporting people at assessments or other meetings with social work. The approach taken tended to be led by the client: from those who simply wanted a SIRD project representative with them to act as a reassuring presence, to a small number of clients who were looking for project staff to play an active role.

Most projects were providing some form of brokerage support. All of these were working with people with a social care budget in relation to that budget. Most were also offering a community brokerage service for both those with and without a budget. There was a broad consensus across the research participants around the value of this type of work.

For some projects, brokerage was the core of their work and focused on working with Option 1 or 4 clients referred to them by social work. For others, brokerage was the latter phase of a broader package of ‘end-to-end’ support for people with a social care budget which had begun at the information provision or assessment stages.

Option 1-focused support ranged from providing further information and advice around how it works on a day-to-day basis through to support with recruiting and managing a Personal Assistant. There were also examples of projects equipping people with skills or tools which would help them manage their own, sometimes quite complex, support packages.

Many SIRD projects have been working with other members of the community with a social care need who are not eligible for a budget who might benefit from information, advice or support. For most interviewees who did not have a budget, making links into other services and groups, and community-based groups in particular, was often a key reason for being in touch with the project.

For a small number of the projects, the peer support approach has been central. This was a particular focus for user-controlled organisations, reflecting their overall philosophy and approach. This has included assisting with setting up and running a peer support group or network.

Experiences of looking for information or support

In a well-functioning system, anyone looking for information or support would find a possible source of information and support quickly and easily. The feedback from the service user survey (full results for which can be found at Annex 2 to this report) suggests that those who have made contact with a SIRD project have tended to do so relatively quickly after they became aware that they needed information, advice or support.

As set out in Figure 4, the largest proportion of survey respondents, around 1 in 2, had just started looking for information when they made contact with a SIRD project. However, around 1 in 4 people had been looking for information for longer than 3 months and a small number of people had struggled to find the information and support they were looking for. Those who struggled to make contact with information or support services tended to be living in rural areas or be in the older age group; and they also tended to not have easy access to, or be a user of, the internet.

Figure 4: How long looking for information and sup

 

Type of information or support looked for

The survey asked supported people and carers asked about the type of information or support they were looking for when they contacted a SIRD project (Figure 5). ^[9] People were most likely to be looking for advice on which social care budget option to choose or for practical support and assistance in relation to Options 1 or 4, including help with recruiting Personal Assistants (Pas) and with payroll issues. Otherwise, people were looking for a range of information, help and support around deciding what they themselves were looking for and various application, assessment and review processes.

Figure 5: What were people looking for....

Making contact with SIRD projects

Projects highlighted two main routes that service users had come through when looking for information or support in relation to social care: referral or signposting from social work services and self-referral.

The largest proportion of survey respondents, around 4 in 10, said they had heard about the SIRD project from a social worker. This echoed the feedback from the SIRD projects that they sometimes received referrals from social workers in relation to clients who were looking to go down the Option 1 route.

In terms of people who had made contact themselves, they had become aware of a SIRD project through a variety of routes:

• Some had accessed information or received support from the project in the past. This occasionally included support in relation to Direct Payments. Some had an existing connection through other work carried out by the host organisation. For example, a small number of the SIRD projects are hosted by organisations that are also support providers.
• Some had become aware of the support the project could offer, including but not exclusively in relation to social care budgets, through the project’s awareness-raising work. This work is discussed further below.
• Others had heard about the project from friends or family, including from members of social or support groups they attended. Friends and family had sometimes attended one of the project’s information sharing sessions. Around 1 in 10 survey respondents had heard about the SIRD project from family or friends.
• Projects with a central ‘high street’ type location reported some ‘passing trade’ from people who had dropped in to find out about what they could offer or to make a social care budget or other enquiry.
• Some had responded to a SIRD project’s leaflets or postcards which had been made available in local venues. Others had found out about the SIRD project through references to their work in local newsletters.

There were a number of other routes through which people had made contact with a SIRD project, including:

• Other voluntary organisations. A small number of projects reported referrals between well-established, locally-based organisations.
• Referrals from health staff. The small number of projects that had received these referrals reported that the roll out of health and social care integration had already led to an increase in the number of referrals they were receiving from health staff.
• A national helpline for carers.
• Former social workers.
• Occupational therapists.

Awareness-raising and capacity-building

A number of projects have been carrying out awareness-raising and capacity-building work focused on increasing levels of understanding about the principles of choice and control and how these apply to social care.

Community-focused information sharing

The work carried out can be viewed as being on a continuum which stretches from:

• Distributing publicity materials or holding information sessions which offer basic information about social care budgets and the principles of choice and control. This has generally been focused on people who currently, or at some point in the future may, require social care for themselves or their family; to
• Single sessions designed to give people facing challenges within the system or at the start of their journey more knowledge and confidence to deal with the immediate issues they face; to
• Courses designed to give people sufficient knowledge and confidence to develop a new way of thinking and generate a step change in their capacity to achieve the life outcomes they wish for.

A number of projects had undertaken outreach work designed to increase awareness of, and understanding about, choice and control amongst the wider public. The range of work undertaken has been broad and has included:

• Giving presentations to community-based groups such as: Women’s Institutes; groups meeting at local places of worship; and older people’s friendship groups.
• Displaying self-directed support-related information on stalls at local community events, such as local gala days.
• Having a physical presence in community-based venues such as doctors’ surgeries or the premises of other voluntary organisations working in the area. One example has been the creation of computer-based ‘community wellbeing points’, in a number of settings, which hold a range of wellbeing-focused information, including in relation to social care budgets.
• Running drop-in information and advice surgeries in local areas where awareness about social care budgets and the principles of choice and control was expected to be particularly low. These tended to be areas of relative socio-economic disadvantage.
• Holding joint outreach surgeries in conjunction with the local social work department.

This work has tended to be undertaken by projects with a single local authority focus and often by projects that already work in the field of information and advice provision across their area beyond the SIRD funded element of their service.

In addition to the general ‘whole community’ focused activity outlined above, some projects have undertaken a range of awareness-raising work with specific groups of people, such as carers. The aim was to reach people with an immediate interest in accessing, or who are already accessing, social care for themselves or their family. This work may involve partners with specific expertise in delivering services to the particular client group.

Such awareness-raising work has usually been built around delivering a single information session focused on providing basic information about social care budgets and other support, and then highlighting the assistance projects can offer anyone wishing to explore their options further. Others have used an alternative approach, running a series of information events covering different issues around social care, such as benefits and transport, and targeted at specific groups, for example parents of children with complex needs, into which people can dip in and out depending on their particular interests and needs.

A number of the projects have made use of volunteers to help support their awareness-raising work. Those projects reported particular benefits associated with involving people with lived experience in presentations and other outreach work. Not only was this approach seen as improving the quality and accessibility of the information and advice being offered but it may also have helped build the skills and confidence, and by extension the capacity, of the volunteers.

Overall, projects have reported that the community-focused awareness-raising work they have done has been useful. At its simplest this has been about a generally increased level of knowledge about self-directed support as the norm within local communities. Projects sometimes noted the potential for this knowledge to ‘ripple out’, for example by people who had found out about self-directed support suggesting that family members explore their options. The projects have reported that a small number of ‘new’ clients they are working with have come to them because a family member found out about self-directed support through their outreach work. Projects noted that such work could reap benefits going forward, with people being aware of their options if and when they or someone close to them needed them in the future.

As a counterpoint, many of the projects reported being struck by the very low level of awareness of the right to social care choice and control amongst members of the public.

Although generally positive, some projects did experience challenges in delivering their outreach work. These included:

• Projects working regionally or nationally finding it difficult or burdensome to provide appropriately locally tailored information given the variety of policy and practice in different areas. These projects noted the absolute importance of ensuring that any information they share reflects the local context and local eligibility criteria in particular.
• Where groups of people with a common interest, but living in different local authority areas, are brought together it can highlight the differences in the support available to them. This, in turn, can cause upset or even distress to those who feel they are at a disadvantage because of where they live.
• One of the national projects with a client group specialism reporting that its most natural partner organisations were sometimes reluctant to work with it around social care budgets. Their concerns related to the risk of raising expectations amongst people which could not then be met through the social care resources and arrangements in their areas.
• Projects which were intending to make a significant use of volunteers or the peer support approach in their outreach work sometimes struggling to find enough people willing and able to get involved. This was generally seen as a function of the smaller than anticipated numbers of people they were working with around assessment or the management of a social care budget. Projects tended to be optimistic that this approach would become easier to resource as the numbers of people going through the assessment process, and in particular choosing Options 1 or 4, increase over time.

Although the general awareness-raising activity may reap benefits in the future, there is limited evidence of its impact to date. Many of the projects carrying out this type of work felt that it had been of limited success, particularly relative to other work strands. A number were planning or hoping to spend less time on this activity going forward and to focus on the type of direct client work set out below.

Provision of basic information about self-directed support

Although a relatively small proportion of their overall workload, many of the projects do offer basic information, and receive and respond to initial queries. A number of projects reported receiving general enquiries about social care budgets, eligibility and what someone should do if they wished to apply for a social care budget. These early enquiries may or may not then lead on to someone looking for further information and support (of the type discussed further below).

SIRD projects which form part of a wider information and support-focused organisation sometimes reported that these initial queries may come in through general advice line or drop-in routes. If further advice or support is requested, they would then tend to be referred to the SIRD project team.

Training or personal development courses

A number of SIRD projects had been involved in the delivery of training or personal development sessions or courses covering choice and control in greater depth for supported people and carers.

The training sessions tended to be focused on the information that someone planning to apply for a budget, or who already has a social care budget, might want and need to know. They were sometimes run as single sessions or alternatively formed part of a wider package of training which might cover choice and control, the relationship between social care budgets and welfare benefits, and other issues relevant to the client group, including topics such as transport, self-management and self-care.

The picture has been mixed for regional or national projects which have sometimes found it difficult to get local authorities to engage with them, including to take up offers of client-group focused training for social work staff. This may have been because services simply do not have the time for client group-specific training. As noted earlier, it may also be that the client groups the SIRD projects are supporting are not yet the focus of the local authority’s choice and control related work.

An attempt by one project to set up a national peer support network also proved very difficult, both in terms of recruiting peer supporters and in terms of the project resourcing work across the country.

Other projects have been involved in the delivery of personal development courses, over a series of weeks or months. These have often followed existing personal development methodologies that have proved effective elsewhere in work with carers and people with a disability or with long term conditions. Their focus is very specifically on supporting people to gain the knowledge, skills and confidence to take control of their own lives and make their own choices. Being able to make their own choices around the use of their social care budget and then, working with others if preferred or necessary, to make those choices happen is at the heart of this approach. It is also an approach which places self-directed support firmly within the broader range of challenges and opportunities which people may encounter.

The different groups for whom these personal development courses have been run include: young people at the point of transitioning to adult services; people with learning or physical impairments; and carers of children, young people or adults with significant care needs.

A number of projects have highlighted the importance of maintaining contact with people who have been on one of their courses and who might welcome or need support in the future. This has sometimes been done by making people aware that they could also receive one-to-one support as they address social care or other challenges in the future. Another approach has been to facilitate mutual support between course ‘graduates’, for example through a Facebook forum or meet up sessions.

A small number of projects have done work that they describe as ‘one-to-one coaching’, which may be seen as an individualised version of the personal development work delivered by others, or as an earlier phase of the work described in the following sections.

Support with applying for a budget, assessment and review

Many of the SIRD projects place considerable value and importance on the body of work they have been doing to support people through the assessment for, or review of, a social care budget.

Early contact work

A number of the projects were involved in supporting clients through the early stages of their engagement with the social care system and into the process of application and assessment.

There were a number of key aspects to this early work:

• The explanation of the choice and control principles and process to clients. This might involve talking people through each of their four options. Projects generally stressed the importance of framing these early conversations around local eligibility criteria and ensuring that they did not raise expectations that were unlikely to be met.
• Initial discussions with clients about how they feel their lives could be improved and supporting reflection on what they really want from the process.

Sometimes clients reported that this initial stage included discussion of their rights within the social care system. Examples included carers being told about their rights to a carer’s assessment and siblings of disabled children about their right to a young person’s assessment.

For projects delivering what might be described as ‘end-to-end’ support, throughout the whole self-directed support process, there was a clear preference for engagement with clients at this early stage. A number of projects, and some client interviewees, highlighted the value of being in contact before an assessment has been carried out and, in particular, before the supported person has made a decision about their social care budget options. It was also suggested that early contact with an independent information and support service might help avoid some of the misunderstandings which can lead to later disputes.

Preparation for social work assessments

Projects were seeking to achieve a number of outcomes when working with people to prepare for a social work assessment or review. In particular, they sought to:

• Reduce service users’ feeling of being alone and isolated. This was often connected to building a supportive relationship with service users and giving them a feeling that there is someone ‘on their side’. Projects sometimes noted that the nature of the client/social worker relationship can make it difficult to develop this type of connection.
• Make sure that assessments or reviews are well-handled from their clients’ perspective. This included ensuring that service users were able to voice all of their concerns and raise all of the issues that were important to them. Older people were identified as particularly unlikely to raise issues or to as more likely to minimise some of the challenges they were facing, and this could affect their eligibility for support.

In practical terms the focus of the assessment preparation phase sometimes included the SIRD project being involved in:

• Development of plans to ensure that all the issues that service users wanted to highlight would be covered by the assessment process.
• Reflecting on service users’ previous experiences of assessment or other meetings with social workers or other relevant professionals.
• Focusing on coping strategies for service users who can find such meetings challenging, for example because emotionally-charged issues are being covered and there is the potential for disagreement or conflict.
• Working, in a number of instances, with service users to develop what might be termed a ‘shadow assessment’ or a ‘shadow care plan’. These might be used either as a prompt for further discussion or be presented to social workers to be used as a formal part of the assessment or review process.

Working with service users to consider the outcomes they would like to work towards in advance of social work assessments was sometimes a particular focus of projects working with people with learning difficulties, people on the autistic spectrum and the families of children with complex needs. Many of these service users already had a social care budget but were coming up to a review, or were in the process of applying for, a budget and there was a clear expectation that they would receive funding.

However, a number of projects also worked with people who might not have been eligible for a social care budget, to look at their future plans and hopes. The focus of this work was often around the types of community-based activities and support which might be available. These issues are discussed further below under accessing community-based services. They highlight the added value that SIRD projects have brought by working with those without social care budgets.

Support at assessment or review meetings

A smaller number of SIRD projects are also involved in activities which could be described as “independent advocacy”: making sure people’s voices are heard throughout the SDS process; enabling people to make informed choices; and upholding people’s rights (Evaluation Support Scotland 2015a).

Some projects were involved in supporting people at assessments or at other meetings between them and their social worker. Service users gave a clear sense of what such support might involve, including:

• Helping them put their points across.
• Making sure everything relevant is discussed and intervening where that does not happen.
• Taking minutes of meetings to ensure that reports of assessments are accurate, and progress is followed through.
• Where necessary, reminding social work staff of their legal and practice obligations.

The approach taken by projects at this stage tended to be very much led by the client they were supporting. At one end of the spectrum, clients sometimes simply wanted a SIRD project representative to be there to act as a reassuring presence. This was also sometimes connected with having someone who could confirm their understanding of what had been discussed and any commitments or decisions that had been made. Both projects and clients reported that SIRD project representatives might attend an assessment or review meeting but play no active part in it. Even where this was the case, those who had asked a project representative to be present described that simple presence as invaluable, suggesting that having someone there who they considered to be wholly ‘on their side’ had given them the confidence to articulate what they were hoping to achieve and the type of support they were looking for.

At the other end of the spectrum, and less usual, a small number reported that they were looking for project staff to play an active role in their meetings with social work. This included speaking on their behalf and replying to questions where necessary.

Although a number of the SIRD projects are offering support through attending assessment or review meetings, it was not a role that all projects felt able to play. Some felt that they were not funded to deliver this type of advocacy work, although they believed it was important.

Ongoing support and assistance

For many service users, projects offered ongoing contact throughout the process of application, preparation for assessments, finding out whether a budget had been made available and then deciding how to use it. Projects sometimes noted that clients could find the ‘waiting and chasing’ which could be involved in applying for a social care budget difficult and at times very stressful.

Projects have looked to alleviate those pressures by:

• Monitoring the progress of applications, which sometimes included contacting social workers.
• Helping to arrange meetings required between their client and their social worker.
• Answering queries that the client may have as they are going through the process, including helping them understand written communications about their application.

This support has sometimes also extended to considering whether to challenge the outcome of the assessment or review and then providing ongoing support through that process. In occasional cases it has included providing support around making a formal complaint about how the social care assessment had been carried out or other aspects of the service received from social work.

Brokerage – setting up and managing support

Brokerage should be understood as providing service users with the support and assistance they need to put in place and manage the arrangements which will enable them to live according to their choices.

Projects’ involvement in brokerage includes:

• Identifying the sources from which clients might plan and access the care or support they need, and explaining, exploring, and supporting the steps they need to take to do so. This may include impartial information, advice and practical support and assistance with recruitment, employment and payroll issues.
• Identifying the sources from which service users might access a range of other non-social care budget-related support and activities, including community resources and informal support. ^[10]
• Once service users have decided on the sources from which they wish to access such support, providing them with assistance to do so.

A majority of the projects were providing some form of brokerage. This generally applied to support around spending their social care budgets and accessing services in the community that did not have to be paid for - what might be termed non-budgetary assistance and support.

There was a very broad consensus around the value of this type of work which spanned across the projects, their clients, local authorities and key stakeholder interviewees, and included a small number of SIRD projects that do not currently offer brokerage services, but which felt they were required in their area. The latter projects were often keen to explore whether they might be able to offer this type of service in the future.

For some projects, brokerage was the predominant focus of their work. These were focused on working with people who were referred to them by social work services once an assessment had been carried out and the client had chosen Option 1 or Option 4. For other projects, brokerage was the last phase of a broader package of ‘end-to-end’ support which had begun at the information-provision or assessment stages.

Work around clarifying or challenging assessment outcomes

The focus of much of the brokerage activity has been on working with people taking Option 1 (and to a much lesser extent Option 4), to set up and then manage their package of care and support. However, many projects reported that early work has sometimes been required before the set-up phase.

Projects highlighted that their brokerage work often encompasses significant elements of advocacy, including around initial challenges about the size of the social care budget awarded or, as noted above, whether a client is entitled to a social care budget at all.

Although the number of service users involved overall was sometimes relatively low for individual projects, both projects and service users identified this as a key area in which support is required. For example, one carer for an adult child with mental health issues was clear that they would not have been able to challenge social work’s decision to not award a budget without ongoing support from a SIRD project. They described feeling undervalued and defeated by the system but being given the strength to continue in their caring role by the support and understanding they had received from the SIRD project.

Other early work was around seeking to clarify the package that had been offered and any expectations social work services have around how the package is to be used. The types of issues that projects reported seeking clarification around included:

• The monetary value of their client’s budget. In particular, it was reported that some local authorities only set out the social care budget as number of hours of support. ^[11]
• The acceptable parameters for any spend other than for purchasing support or care hours.
• The requirements and arrangements associated with agreeing and reporting spend.

Otherwise, for a small number of projects, and as also described by some client interviewees, the first stage had been to have a conversation around the outcomes the client wished to achieve. On a small number of occasions, projects and clients reported that these conversations - or at least ‘good conversations’ - had not been part of the assessment process.

Setting up and day-to-day management of a social care budget

The survey and service user interviews highlighted some of the challenges people can face when taking Option 1 or 4. For many, the recruitment and management of Personal Assistants ( PAs) as employees is an entirely new process and one which they can find daunting. A number of the projects have been offering support around preparing to go down the Option 1 route. This has tended to focus on:

• Providing further information and advice around how Option 1 works on a day-to-day basis. There was often a focus on legal requirements associated with being a PA employer, such as National Insurance and pension obligations. This element sometimes included a peer support element (these approaches are discussed further below).
• Discussing the options which might be available locally around the recruitment of PAs. This occasionally included providing a list of PAs working in the area.

A smaller number of projects provided direct support around employing PAs. This most commonly involved: assisting clients with recruitment, for example drawing up job descriptions and adverts and assisting with the placement of adverts; supporting PA employers in shortlisting and interviewing PAs; and providing example employment contracts. Projects which did not provide this type of recruitment-related support sometimes referred people on to other third sector organisations which were able to offer help.

Similarly, while a small number of the projects were able to offer in-house payroll services, ^[12] most made suggestions for third sector or other providers which offer payroll services. Where an in-house payroll service was available, projects stressed that clients were made aware of their other options.

Projects which are involved in helping people set up their support packages also tended to offer ongoing support around the management arrangements. The types of issues with which projects had helped clients included: dealing with issues around holiday cover or holiday and sickness entitlements; helping make arrangements when the client had an extended period in hospital; and dealing with problems with a PA’s performance. In one of these latter cases this included a project supporting someone who had decided that they needed to dismiss their PA.

There were also examples of projects equipping people with skills or tools which would help them manage their own, sometimes quite complex, support packages. One example was the provision and setting up of a software package for tracking of the delivery of care, ongoing spending and progress against outcomes.

Although much of such ongoing support has focussed on employment issues, the other issue on which projects sometimes continued to work with clients was around alternative uses of their support budget, in other words spend not associated with employing a PA. The focus here tended to be on the types of activities on which the budget could be spent. Examples included whether the budget could be spent on gym or sports club memberships or to enable someone to go to an event or on a short break. Projects reported that these can sometimes be difficult and challenging conversations, with the onus placed on their client to convince social work that the spend is reasonable. However, as with many other aspects of this review, there were reports of very positive joint-working between social workers, the SIRD project and, critically, the client themselves.

Advocating and supporting people to challenge decisions

As noted above, there were reports of very positive, constructive and supportive relationships between people supported by a SIRD project and their social work service. However, a significant amount of the work of projects has involved working with, and advocating on behalf of, clients in some way unhappy with the social care process or decisions that have been taken. For some projects, this has come to constitute the majority of their work or has formed a much greater proportion of the work than they had anticipated when applying for SIRD funding.

The types of issues which projects, survey respondents and client interviewees raised included unhappiness or disappointment with:

• The pace of the application, assessment and decision-making process.
• How clients feel they have been treated and, in particular, the extent to which they feel listened to and believe that their views and wishes have been taken into account.
• Either being told they are not eligible for any social care budget or feeling that the social care budget they have been given is insufficient to meet their needs.
• Being unable to spend the budget on things that they feel will make a significant difference to their quality of life.

Given the varied local contexts, pace of self-directed support implementation and social care arrangements across local authorities, it is unsurprising that some projects reported more issues, or a different range of issues, than others. SIRD projects tended to note that they are not quick to judgement and will often seek further information on their client’s behalf. This sometimes meant that, once the situation had been fully explained to the client, they did not wish to take any further action. In particular, a number of projects highlighted that it would not be in the best interests of their clients to encourage them to challenge decisions when it was clear (based on local eligibility criteria) that the decision would not be overturned.

However, many SIRD projects reported that there are occasions on which a service user does wish to challenge social work practices or decisions and looks for their support to do so. This might involve: chasing up progress; writing or supporting the client to write letters; supporting a client to make a formal complaint; challenging social workers’ understanding of the relevant legislation, or established practice in their local authority area, where this appears to fall short.

As with other aspects of their work, some projects offering end-to-end support expressed frustration about the late stage at which they sometimes become involved. By the time someone comes to them the relationship between that person and their social worker may already be tense. They generally felt that, had they been able to intervene earlier, this situation, and the often-considerable stress or distress the service user was suffering, could have been avoided or been less.

Projects felt that work to challenge social workers can be difficult and is highly skilled, with the potential for conflict constantly present, and that conflict might potentially be damaging to a client’s interests. Projects referred to their own understanding of the challenges facing social workers, including delivering services at a time of huge financial pressure, as being key to achieving positive outcomes. It was also seen as essential to focus on the rights of the clients as stated in legislation and expressed in practice when supporting any challenge.

A small number of SIRD projects reported experiencing difficulties because of their work in challenging the practice or decisions of individual social workers or social work teams. They felt that relationships with some social work staff, and especially with middle management, were poor as a direct consequence.

Accessing community-based services

Although much of the SIRD projects’ work has been with people around applying for or managing a social care budget, many have also been doing other community-based work. This has tended to focus on connecting people into groups and services within the community. Projects may have been doing this work with people who have a social care budget and with those who do not. For those without a budget, particularly reference to older people, this was sometimes articulated as working with people who might not yet need a formal support package but who might do so in the future.

The preventative focus of this type of work was often highlighted, including in relation to ‘postponing’ the point at which a formal and potentially costly support package might be required. However, it is also notable that around 1 in 5 of the survey group (all of whom have a social care budget) were also looking for help in accessing other services.

For many interviewees who did not have a budget, making links into other services and groups, and community-based groups in particular, was often a key reason for being in touch with the project. The initial connections had sometimes been made through projects’ awareness-raising and other outreach work, such as visiting lunch groups or other community-based events. Very often, someone attending this type of event, including carers, had suggested the project might be able to help someone known to them.

Alternatively, the person attending the event may themselves have been looking for support or might have been interested in having a conversation about choice and control. These conversations did not always lead on to any social care budget-related advice or support but generally led on to a conversation about other community-based social opportunities or support options.

In terms of non-budget related assistance, the support being looked for and received included:

• Arranging introductions into, and sometimes initially accompanying people to, social or support groups or events. These events included older peoples’ lunch groups, craft groups, and walking or sports groups. People who had made these new connections sometimes referred to feeling less isolated and much more a part of their community, and some referred to a general improvement in their health and wellbeing.
• Supporting people to set up their own social groups or events and being available to provide ad hoc advice once the groups are up and running.
• Accessing training or employment-related support. For example, a young person and their carer have been working a project around ways of travelling to and from a local college, an example of projects working with young adults around independent living skills.
• Supporting someone to have changes made to their property which helped maintain their mobility and independence.
• Referring or signposting carers to counselling and other support designed to preserve their wellbeing.
• Also primarily for carers, providing information and advice around a range of issues such as welfare guardianship and power of attorney.

In addition to the types of support outlined above, a small number of projects had been working with small groups of people who have traditionally struggled to access social care funding, to look at ways they could pool their resources and, through coming together, could access support or other opportunities. Examples of the types of things these small pooled budgets have been spent on include photography lessons and home furnishings. This type of pooling of budgets, including to put together workable support packages, has been a focus of some of the work being carried out by projects with Innovation Fund funding.

It was also clear that for some people simply being able to make contact with one of the projects - and in particular being able to speak with someone who is known to them and who is aware of their life circumstances - gave a sense of reassurance and helped reduce feelings of social isolation. A significant majority of non-budget holders reported that they were still in contact with their SIRD project. Around 4 in 5 survey respondents also said they were still in touch although some of these were in receipt of ongoing support around Option 1.

Peer support and peer involvement

Peer support or involvement should be understood as people using their own experiences to help and support each other. It aims to help both those giving and receiving support.

Projects’ involvement in peer support work included: helping to set up and support peer groups or networks; involving people with lived experience in delivering awareness-raising or training courses; and setting up a Community Brokers approach, in which peer mentors support others to access community-based services.

For a small number of the projects, the peer support approach has been central to their SIRD work, particularly for user-controlled organisations, reflecting their overall philosophy and approach. Other projects have included peer support elements within the broader work they have been doing. It was sometimes an approach which projects had expected to use more widely but found challenging.

The type of work that has been carried out includes:

• Assisting with setting up and running a peer support group or network. The ongoing support offered might include: arranging meeting venues and travel arrangements; arranging speakers for meetings based on areas of interest identified by the group; and supporting members to access the technology required to participate in events or discussions. Choice and control has often been one of the main issues groups have wanted to focus on. However, feedback from members of one of these groups made clear that the social aspect, including being able to spend time and talk with those with similar lived experience, was truly valued.
• Helping to set up ongoing mutual support networks between those who have attended a personal development or other training courses. This included course ‘graduates’ supporting or hosting ongoing on and offline communities. Facebook has been an important mechanism for this work, with some well-functioning and well-used Facebook groups.
• Developing an email network which allows people to post questions and concerns anonymously and receive answers or other support from network members.
• Involving people who have been through the social care budget application and assessment process, in particular people with experience of Option 1, in delivering focused awareness raising or training sessions.
• Involving ‘graduates’ of personal development courses as future contributors.
• Training and supporting people with lived experience around speaking to working groups, committees or commissioners about their social care and other life experience.
• Setting up a Community Brokers system, with former clients, and in particular people who are or have been carers, supporting others to access community-based activities and support.
• Employing peer educators.
• Using peer support approaches to deal with the risk to young people at the time of transition from child to adult services that their social networks will fray and they will become dependent on parents and other adults in their family for their social lives.

More generally, a number of projects noted that it is important effective peer support approaches obtain adequate funding, and that they cannot be delivered at no cost. Irrespective of the skills and commitment of those involved in delivering peer support, funding will always be needed for their set up and day-to-day running. Also, a number of projects noted that many of those willing to take on a peer support role had attended one of the training or personal development courses or had otherwise received help and support from the project. In essence, therefore, SIRD funded activities had become the recruiting ground for peer support work.

As noted above, some projects have found the setting up and running of peer support approaches challenging. For example, one project had hoped to create a group of Option 1 Mentors, people who had been through the set up and running of Option 1 and were prepared to share those experiences with others and support them in their journey. However, until very recently they simply had insufficient Option 1 clients to make this approach sustainable. They now have a small group with experience of Option 1 and are testing peer support approaches with some of them. Other projects reported being unable to recruit sufficient people to take part in peer support work; this was sometimes related to the relatively small group of people with lived experience within a particular client group.