Expectations and experiences: service user and carer perspectives on the Social Services and Well-being (Wales) Act (summary)

The Welsh Government has commissioned a partnership of academics across four universities in Wales and expert advisers to deliver the evaluation of the Social Services and Well-being (Wales) Act 2014 (hereafter referred to as ‘the Act’).

The Act sets out the Welsh Government vision to produce ‘transformative changes’ in social service policy, regulation and delivery arrangements across Wales. It has 11 parts and is informed by five principles that set out a vision to produce transformative changes in public policy, regulations and service delivery. Aligned to it are structures, processes and a series of Codes of Practice.

This document is a summary of a full report on service user and carer perspectives on the Act, conducted as part of the IMPACT study, the independent national evaluation of the Act. A bilingual introductory film explaining the structure of the study is available on YouTube: Act evaluation film.

The IMPACT study has been running since November 2018. The evaluation examines the implementation and outcomes of the Act through its five principles (and the financial implications of each). These are being evaluated through a consideration of how the Act has impacted on five domains, and is informed by Michael Patton’s (2018) Principles-Focused Evaluation (P-FE) approach which we are using as the framework for the study.

Five principles of the Act, and the five domains of the study

Principles

• Voice and control
• Wellbeing
• Co-production
• Multi-agency working
• Prevention and early intervention

Domains

• Citizens
• Families and carers
• Communities
• Workforce
• Organisations

The domains are where the principles of the Act meet the people or organisations for whom the Act should be having an impact – for individuals in need of care and support, for their carers and family members, for the communities in which they live, for the workforce that supports them, and for the organisations who have duties and responsibilities as outlined by the Act and associated Codes of Practice.

Scope and remit

This report is solely concerned with reporting service user and carer perspectives on the Act, and in particular their expectations and experiences of their care and support under the auspices of the Act since April 2016.

The evidence provided in this report does not claim to be ‘representative’ in any quantitative methodological sense of the word. Whilst we were privileged to hear from 170 participants, this is a small proportion of the total number of service users and unpaid carers in Wales. They are not the totality of experiences of service users and carers in Wales, and it would not be sensible to think that they are.

However, we did not set out to do anything other than gather detailed evidence on the expectations and experiences of the people that are on the face of the Act; those that need care and support and their carers. The evidence provided is personal, it is local, and it speaks to the circumstances and challenges of their lives.

This report considers three specific issues for service users and carers that were raised in the original Welsh Government project specification for the evaluation:

• to what extent they feel that services worked in partnership with each other, were fully integrated and were streamlined to ensure the best possible care was provided to them (covered in Chapter 4);
• to what extent they feel involved in decisions about their care and support (covered in Chapter 5)
• their quality of life and their wellbeing (covered in Chapter 6) (It is important to note that we do not imply any causal links between the ‘activities’ (or process outcomes) and short-term outcomes for people. The circumstances that the data was drawn from are far too complex to make such ‘straight-line’ assumptions of causality.)

Key contexts

It is also important to consider two contexts which are key to understanding the point in time at which this report was written.

COVID-19

The fieldwork was undertaken through the pandemic, 14 to 20 months after the initial lockdown (between May and October 2021), and long enough after the initial arrival of COVID-19 for participants to be significantly impacted by that experience. It is evident through their responses that the pandemic exposed some of the underlying frailties that existed in the system, but it also exposed the significant amount of determination and resilience present within individuals and in families to try to cope at a most challenging time.

It is important to reflect on the nature and tone of the discussions that we held. Many of the people who engaged with us found the experience a very emotional one, speaking from the heart about the difficulties that COVID-19 had placed upon them over and above the everyday, long-term challenges they have faced. These were difficult things to hear, but they were much more difficult to experience, and we are very grateful to those people who took time to share their experiences.

Pressure within the social services system

It is also important to note that the social services system (not least because of additional challenges brought about by COVID-19, but also associated with workforce challenges, some of which are linked to Brexit) is a system under considerable pressure, a situation it has been in for some while.

Respondents reflected on financial pressures impacting social services, and workforce issues such as the pressure on social workers, care workers and support workers. These reflections are anchored in examples where problems and challenges in the broader system had consequences for the day-to-day experiences of care and support.

Document structure

Chapter 2 outlines the approach and methodology. Chapters 3, 4 and 5 present the findings: on how service users and carers have experienced the provision of social services (Chapter 3); on multi-agency working (Chapter 4), and on voice and control (Chapter 5). Chapter 6 provides a discussion on the impacts on well-being, and Chapter 7 draws conclusions from the evidence presented herein.

Approach: principles-focused evaluation

The study follows Michael Patton’s Principles-Focused Evaluation (P-FE) (The GUIDE. New York: Guilford Press) an approach for the evaluation of principle-based initiatives in environments he describes as becoming ‘…ever more complex’ (2018, p.4).

There are three central questions in a P-FE evaluation (2018, pp.27-29):

1. To what extent have meaningful and evaluable principles been articulated?
2. If principles have been articulated, to what extent and in what ways are they being adhered to in practice?
3. If adhered to, to what extent and in what ways are the principles leading to the desired results?

Mindful of this complexity, the rationale for using a P-FE approach is to ensure that there is an appropriate and robust framework in place within which the primary and secondary data will be analysed. The P-FE approach involves both the collection of evaluation data about the process of implementing principles-focused initiatives, and the results. The expectations and experiences of those who receive care and support, and their carers, is a key part of this data collection, and the focus of this report.

Data collection

Data collection used a mixed methods approach with three distinct strands: a Wales-wide bilingual on-line questionnaire, qualitative data collection via interviews and focus groups, and a closed Facebook Group.

It is important to note that the data collection took place during the COVID-19 pandemic, between May and September 2021. Anecdotal evidence from gatekeeper organisations highlighted the issue of potential research burden on prospective participants with the target population receiving high numbers of requests to take part in interviews and surveys over the past 18 months

Prior to the pandemic, qualitative data collection had been intended to take place largely face-to-face. However, lockdown restrictions at the time of commencing data collection meant that all face-to-face data collection was suspended and instead moved online or via telephone.

Table 2.1 provides the total number of social care service users and carers who engaged with the study (n=170).

Data analysis

Data analysis was an iterative process; using thematic analysis, the development of the coding framework was undertaken by the authorial team for this report, and included a series of discussions to review, iterate and refine.

The evidence from service users and carers provides insights into people’s experiences of a social care system undergoing considerable pressures (i.e., workforce issues and budgetary constraints), pressures that preceded the implementation of the Act and have been exacerbated during the COVID-19 pandemic. These insights about the system highlight the challenges of implementing principles-based public policy (i.e. ‘The Act’) in a context where historical resourcing and institutional practices issues come face to face with the strains and constraints of the current times. 

There are penetrating insights from service users and carers about barriers to accessing services, financial considerations rationing service delivery, and implications of workforce churn for continuity of care and relationship-based practice. Looking across the evaluation data there were numerous examples where the ambition and improvement agenda of the Act was not the experience of respondents. For several respondents there was no discernable change in the experience of care and support, and for some, things were more difficult, including limited availability of early intervention and prevention support.

Some respondents had little to no knowledge of the Act, which meant that they were not fully aware of what the Act has to ‘offer’ before they began to access care and support. Others still experienced the delivery of social services as operating from a ‘tick box’ culture in performance reporting and accountability. There were also experiences of carer assessments falling short when it came to facilitating the follow up provision of care and support. Gaps and shortfalls in service availability were raised. Service users and carers spoke of having to manage alternative interpretations of the principles and entitlements under the Act, with a contrast between their views and those of staff within social services. Notable is the negative impact for wellbeing of these encounters with social services.

Whilst not the dominant story, from this evaluation data there were also positive encounters with social services, and stories of improvements. This was the case for some carers who recounted positive outcomes in carer assessments and the implications for feeling recognised, supported and empowered. Experiences of social services being flexible in instigating service adaptations during the pandemic were noted positively, for example the delivery of online and remote support. Some respondents commented about their experience of social services being open and responsive, and that this had been different since the implementation of The Act. There were examples of respectful interactions with social care staff, and from some respondents an empathic consideration of the stresses experienced by the social care workforce.

The evaluation data points to areas where improvements could be made, and this includes in the ongoing training of staff about the Act, public communication of information about the Act, and ensuring this information is relevant to a diverse group of service users and carers and is available in a range of accessible formats. The need for the provision of accessible information, communication, and support was particularly pertinent amongst service users with sensory loss. Service gaps were identified in areas such as support for individuals with children in leaving abusive relationships, specialist services for children, and support for Black, Asian, and Ethnic Minority people. Moreover, attending to systemic issues (resources, staffing, institutional performance reporting) and managing the consequences of staff turnover for relationship-based practice are pressing areas that emerge.

Multi-agency working places an emphasis on partnership and integration in the delivery of services for individuals with care and support needs. The Act envisages that improvement in wellbeing outcomes for people will in part be achieved through better co-ordination and enhanced collaboration between public bodies, including local authorities and the NHS, the third and independent sectors, working together through and across regional partnerships.

Overall, there was a shared perspective on the importance of agencies not only working well together with each other, but also with the people in receipt of care and support. Yet, across the interviews and focus groups, there were frequent experiences of a lack of effective multi-agency working within and between local authorities, and between different sectors. In particular, poor multi-agency working practices between social services and health featured heavily in the accounts of participants.

Further, despite a significant value placed on third sector support, it was felt these services are not fully recognised by statutory services, which is especially problematic given that there were a number of positive examples of third sector support cited by participants.

As demonstrated, an absence of effective multi-agency working in the provision of care and support was the norm rather than the exception for the service users and carers we heard from. Their evidence focused on issues of variation like disparities of care and support between local authorities and other agencies, differing interpretations of the Act, and delayed information sharing. Ineffective working, communication and information sharing between and within local authorities, and between and within sectors, were all identified as issues to the detriment of service users and carers. For example, disruptions to the continuity of care when moving between local authorities, and repeating information and experiences to multiple professionals, leading to feelings of frustration and distress.

Whilst there were few positive experiences of multi-agency working, aspects seen as supporting effective multi-agency working included the introduction of dedicated transition workers for those moving between children and adult services, and single-point of access teams.

Having a strong voice and real control is central to the Act as it optimises everyone’s opportunity to achieve well-being and an appropriate level of independence. Under the Act, everyone has a right to be heard as an individual and as a citizen. Citizen engagement is a central theme of the Act and advocacy has an important role to play in underpinning the wider requirements of the Act in terms of well-being, safeguarding and prevention. It can assist people with expressing their views and making informed choices.

The Act posits that to have voice and control, an individual must be able to feel that they are a genuinely equal partner in their interactions with professionals. It is a principle of the Act that a local authority respond in a person-centred, co-productive way to each individual’s particular circumstances.

Individuals and their families must be able to participate fully in the process of determining and meeting their well-being outcomes through a process that is accessible to them. The process must ensure that people are empowered to express their needs and are able to participate fully as equal partners. This must include enabling an individual to indicate if they want to have someone supporting them when weighing up options and making decisions about their wellbeing outcomes.

Participants identified two principal issues. They identified ways in which they were sometimes able to, but more often unable to, exercise voice and control. Secondly, they recognised mechanisms and approaches that are a means for achieving voice and control. One of these key approaches is another of the fundamental principles of the Act; co-production.

Overall, there were challenges for service users and carers when it came to realising the prospects offered by the principle of voice and control. For some people, there was an ability to be heard and to influence largely driven by the work of individual social workers rather than being supported by the ways in which systems operate, or through mechanisms like Direct Payments which were reported by some to work effectively in giving them greater control.

However, for the majority of respondents, their experience was one of much greater frustration. They identified barriers around a relatively ‘tokenistic’ approach to listening; power imbalances between themselves and professionals; the need to chase social services for support and recognition; and around cultural insensitivity. These all served to militate against the full experience of voice and control.

In respect of mechanisms for achieving voice and control, the range of legislation and rights available to Welsh citizens, the complaints process, the availability of Direct Payments, and the role of co-production as a principle of the Act were identified as means to achieving voice and control. It has to be said, however, that shortcomings in the implementation of all four were identified.

The Act outlines that realising voice and control means that an individual must be able to feel that they are a genuinely equal partner in their interactions with professionals. There is some evidence that service users and carers felt that their experience was moving towards this, but in terms of genuinely being able to exercise voice and control, this remained very much a work in progress.

Wellbeing, in many ways, is the unifying principle at the heart of the Act. The Act provides a focus on the wellbeing of people who need care and support and carers who need support, on rights and entitlements, and on empowering people to have a new relationship with social services.

Wellbeing underpins and connects all of the other principles, linking through from the role that early intervention and prevention can play in promoting wellbeing, to how people can be empowered by information, advice and assistance and by being involved in the design and operation of services.

In many ways, however, the point is to identify what can be learned about the implementation of the Act, and what else might need to be done to move closer to the aspiration that it has for the five principles, through people’s reflections on wellbeing.

Participants in this study identified some positive well-being impacts relating to their contact with social services, but more ways in which their experiences led to negative impacts.

The pandemic clearly played a key role in shaping people’s feelings about their wellbeing, whether as a service user or carer. That is not to overlook the issues that exist within the ‘system’ that many of them reported, but it is to recognise that from their perspective, COVID-19 served to ‘reveal’ and bring to the fore some of the underlying pressures that were impacting on wellbeing that existed before the pandemic.

It is overly simplistic to draw straight-line connections between people’s self-reported well-being, and their experiences with social services; it is much more nuanced and complex than that as our P-FE framework and approach recognises. However, it is important to note that the evidence provided here offers an insight into what people thought about their well-being, and the role that social services can play in trying to support and improve it, as envisaged by the Act.

Very many hours of social care and support are provided on a daily basis across Wales to people in need of that care and support and their carers. This study has tried to capture and understand the extent to which the Act’s principles are driving the experiences of those service users and carers.

Many of those services were being delivered and experienced in line with the aspirations laid out by the legislation. However, there is ample evidence from this study that the experience of service users and carers was sub-optimal. There are a number of significant structural factors that help to explain this, not least of which are the global pandemic, budgetary pressures and growing demand, challenges over workforce sustainability, and the relative ‘newness’ of the Act. This point about the relative ’newness’ of the Act was made in passing by some service users and carers, but was reflected on extensively by the workforce, see the Process Evaluation report. It has been brought in here as a point of connection between the two datasets.

Answers to key questions

In moving towards conclusions at this stage of the study, in the following section, we have brought together the three areas of focus for this report from the Welsh Government’s specification, and then mapped these against the questions from Patton’s P-FE framework that are germane to the evaluation approach.

To what extent do people feel that services have worked in partnership with each other, were fully integrated and were streamlined to ensure the best possible care was provided to them? (P-FE questions 2 and 3)

An absence of effective multi-agency working in the provision of care and support was the rule rather than the exception for service users and carers who participated in the study. They reported variations in the way in which agencies work together, and in their view, this often meant that some people did not have access to services and support that others were receiving.

In particular, poor working practices between social services and health featured heavily in the accounts of participants, and despite a significant value placed on third sector support, it was felt these services are not fully recognised and valued by statutory services.

Acknowledging the overlap with issues around voice and control below, service users and carers expressed a desire to be more involved in multi-agency decision-making, and be informed with information and guidance about their care and support. This has not often been the experience of our participants, on the whole, respondents spoke of experiencing a lack of meaningful involvement when multiple agencies were involved in their care.

Participants were clear in their view that they want professionals to more confidently relay and explain information to them, especially when those professionals are working in close partnership with each other.

Respondents also noted the importance of continuity in the relationships that they have with professionals in social services and their partner organisations. They identified the difficult consequences that follow from staff turnover, and the negative impact that losing trusted relationships has for meeting their needs and maintaining good communications.

In respect of multi-agency working therefore, much remains to be done. There is evidence from service users and carers that the challenges of moving to new ways of working remotely under a situation of considerable stress precipitated by the pandemic has stalled, and in some places reversed, some of the progress towards the co-location and integration of professional multi-agency teams that was being made.

To what extent do people feel involved in the decisions about care and support? (P-FE questions 2 and 3)

Typically, service users and carers identified challenges when it came to realising the prospects offered by the principle of voice and control and being involved in decisions about their care and support.

Some participants noted that they had an ability to be heard and to influence, and where this occurred, it typically centred on good structures in place locally (around Direct Payments and taking control of employment relationships for example) or was down to excellent social work practice.

The majority of respondents, however, felt stymied by the number of barriers they encountered around:

• ‘tokenistic’ approaches to listening
• power imbalances between themselves and professionals
• the need to chase social services for support and recognition
• cultural insensitivity

These issues were exacerbated by shortcomings identified by service users and carers in being fully able to access the rights available to Welsh citizens enshrined in legislation, complaints not being taken forward to their satisfaction, challenges in the ways in which Direct Payments operate, and the ways in which potential benefits associated with co-production had not yet been realised.

Overall, there were few who reported that being listened to allowed them to exercise control over their care and support in the ways that the Act envisaged. For many, however, this was not the case, and they felt a long way from the vision proposed by the Act. A matrix of structural barriers, and too little power sharing, around issues of co-production for instance, led to people feeling that their voice was not heard. From the data collected for this report, questions emerge about whether the current practices supporting the voice and control principle, on the whole, are leading to the desired results.

What impact has the legislation had on the quality of life and the well-being of those who receive care and support and carers who receive support? (P-FE question 3)

It is important to recognise the central role that well-being plays in the ‘life’ of the Act, and the complex structural and interpersonal factors that influence well-being. Any changes to well-being will take a very long time to become visible in population-level data. However, participants in this study identified relatively few positive well-being impacts linked to their experiences with social services. As with elsewhere, where these positive impacts occurred, they were often down to good relation-centred care and support, practised by excellent social workers and social care workers.

Factors reported to impact negatively on well-being included the perceived lack of empathy shown to service users and carers, leading to a series of undesirable feelings; frustration, distress, feeling helpless, isolation, stress and perceptions of being a burden. Peer support groups were notable in the positive role that they have reportedly played to bolster and maintain service users’ and carers’ wellbeing.

Demands associated with undertaking caring relationships were also identified as a material factor impacting negatively on wellbeing. The constant need to juggle caring responsibilities alongside work and family pressures was reported to be challenging, and feelings of being ‘boxed-in’ in part due to shortages in the paid workforce, also impacted on how people felt about their well-being.

The wellbeing impacts experienced by service users and carers in this study, are not commensurate with the vision laid out in the Act. At this stage and based on the evidence provided by service users and carers, it is not possible to conclude that the principle of wellbeing, and everything associated with it, is leading to the results that the Act desired.

Implications

This closing section brings together some of the evidence in order to consider the implications of this dataset. These perspectives serve in the place of formal recommendations, given that it is too early to provide these. They are an insight into the most important implications of this data.

Twelve statements and a commentary on each are provided below. The statements are paraphrased from quotations from study participants. They are an amalgam of perspectives from multiple service users and carers, and should not be seen as ‘universal’. They do not apply to everyone in every circumstance, but they do speak to elements within the dataset. They reflect the evidence provided in the sense that there are some elements of positivity, but with much that is negative.

The commentary that accompanies the statements relates each back to the Act, its principles, and its implementation, thereby making connections with the key questions under our P-FE approach.

Closing comments

This is a complicated picture. The evidence of the many people who have not had positive experiences cannot formally ‘represent’ all of those in receipt of care and support. What it does, however, is suggest powerfully that the ‘journey’ towards the full implementation of the Act is not yet complete.

The system clearly needs to work more effectively to fully realise the potential of all of the principles working together in harmony. Given the additional challenges that the pandemic has brought, the principles have never been more important for people to hold onto. Similarly, they have never exerted such influence, despite the enormous pressures brought about by COVID-19, the principles still feel relevant and resonant to service users and carers.

Some service users and carers, however, are growing increasingly impatient for change. Recognising and valuing this is now key to the work to further embed the Act and its principles.

Authors: Mark Llewellyn, Sarah Wallace and Sion Tetlow (Welsh Institute for Health and Social Care, University of South Wales); Fiona Verity (College of Human and Health Sciences, Swansea University)

Views expressed in this report are those of the researchers and not necessarily those of the Welsh Government.

For further information please contact:
Joseph Wilton
Email: research.healthandsocialservices@gov.wales

Media: 0300 025 8099

Social research number: 16/2022
Digital ISBN: 978-1-80391-738-2