Abstract

This paper presents learning and insights drawn from the Fulfilling Lives (FL) programme – an eight-year programme funded through the National Lottery Community Fund (NLCF) and delivered across 12 sites in England. The programme aimed to improve services for people facing multiple disadvantage (MD) and was delivered by 12 partnerships, each led by voluntary sector organisations (VSOs).

The findings were supplemented by interviews carried out with delivery partners, stakeholders and people with lived experience (LE) from one of the 12 projects, Birmingham Changing Futures Together (BCFT). The review and supplementary interviews were conducted as part of a ‘scoping exercise’ designed to help the author shape and refine research questions at the outset of her doctoral study.

The focus of this paper is the involvement of people with LE in the delivery of the NLCF FL programme. The research questions explored the mechanisms used to involve people with LE of MD, the impact that their involvement was found to have on effecting ‘systems change’ and some of the limiting factors to this involvement. The paper sets out the conditions needed to facilitate better involvement and considers what these insights offer for the future design and delivery of services for VSOs seeking to develop their approach to involving people with LE.

Introduction

This paper shares insights and learning about the involvement of people with lived experience (LE) of multiple disadvantage (MD) in a flagship programme, Fulfilling Lives: Multiple Need (later changed to MD), funded by the National Lottery Community Fund (NLCF). The eight-year programme (2014–22) aimed to improve services for people facing MD and included an explicit commitment to the involvement of people with LE in its design and delivery, alongside a stated ambition of effecting ‘systems change’.

The programme was launched in 2013 with an overall investment of £112 million and was delivered across 12 sites in England. At each of these sites, a voluntary sector organisation (VSO) lead partner was responsible for bringing together stakeholders to design a localised delivery model that would contribute to achieving the overarching outcomes of the programme (see Box 1). Across eight years of delivery, more than 4,000 people facing MD were supported. Based on a cost–benefit analysis, the national evaluators of the programme reported an annual saving to the public purse of £7.3 million (CFE, 2019).

Original aims and principles of the Fulfilling Lives (Multiple Need) programme

Aims

  1. ‘People with MN are able to manage their lives better through access to more person centred and co-ordinated services.

  2. Services are more tailored and better connected and will empower users to fully take part in effective service design and delivery.

  3. Shared learning and the improved measurement of outcomes for people with MN will demonstrate the impact of service models to key stakeholders.’ (Adamson et al, 2015: 4)

Principles

  1. ‘Taking a whole person approach: address the whole combination of factors that affect the person in a way that is simple and straightforward for individuals to navigate with a single access point.

  2. Is asset based: assumes that people can improve their own circumstances and life chances with the right support.

  3. Engages service users themselves in every aspect of the design and delivery of services.

  4. Ensure that all the agencies providing elements of this service are providing a tailored, holistic and connected service.

  5. Better co-ordination of provision, between those delivering services (both statutory and voluntary sector) and those commissioning services.’ (Adamson et al, 2015: 4, emphasis in original)

This paper presents key learning from the programme of particular relevance to voluntary and community sector (VCS) leaders and practitioners who are considering involving people with LE in the design and delivery of MD services. The paper now sets out the approach to the study and defines key underpinning terms and concepts. The findings are then set out: the mechanisms employed on the programme to involve people with LE, the impact of this involvement and the limiting factors experienced. Finally, the paper explores the recommended conditions needed to facilitate the effective involvement of people with LE and suggests steps that VCS leaders and practitioners working in the field can take to create these conditions.

Approach

The review of the NLCF FL programme was intended to inform and refine research questions for my doctoral study. In what was designed as a ‘scoping exercise’, the aim was to identify what was understood about the mechanisms used to involve people with LE in ‘systems change’ alongside any emerging enabling or inhibiting factors that had been experienced. It was an opportunity to reflect on whether planned research questions would add significantly to existing knowledge, or whether they required further refinement before study commenced in earnest.

A grey literature review of the national learning and evaluation reports produced by the NLCF FL programme – with a particular focus on those from Birmingham Changing Futures Together (BCFT), the location of my doctoral study – was completed. A title scan of learning and evaluation outputs (n=340) accessed via the NLCF FL evaluation website (www.fulfillinglivesevaluation.org) was completed. Of these, 32 were identified as relevant to the inquiry and were read in full. A thematic analysis was undertaken, identifying key themes that emerged in relation to the involvement of people with LE in the programme.

A series of ‘scene-setting’ interviews with 17 key staff, stakeholders and people with LE who had been involved with the BCFT programme then took place. Using semi-structured interviews to understand how closely their personal reflections mirrored the findings from the literature review, this process also added depth and richness to the data. Interview transcripts were analysed to draw out key themes.

There are notable limitations to the study. The grey literature review was confined to the NLCF FL programme and did not include comparative data from similar programmes or projects. Similarly, the focus on Birmingham, necessary for the purpose of scoping and scene-setting for the ongoing study, means that findings were at a limited scale and should be approached with some caution.

Key terms and concepts

MD was defined at the outset of the NLCF programme as a combination of three or more of the following experiences: homelessness, poor mental health, involvement in the criminal justice system and substance misuse (Adamson et al, 2015). The Making Every Adult Matter (MEAM Coalition, 2018) consortium highlights that people facing MD are frequently failed by systems, perpetuating and exacerbating the problems they face. This is often a result of disjointed service provision, compounded by the ‘perfect storm’ of reduced funding and increased need across public services (Ghate et al, 2013).

‘Whole-system’ approaches to address such complex social issues have become a prevalent rhetoric in public policy over recent years (McGuire, 2006; Ghate et al, 2013; Hobbs, 2019). The literature defines a system as distinct from an organisation by its interconnectedness and interdependency. Systems therefore incorporate multiple individual organisations that interact (Ghate et al, 2013) and have collaborative capacity and collectively shared objectives (Hobbs, 2019). Systems are described as complex, adaptive, fluid and dynamic (Obolensky, 2010) and, in the public service context, are often geographically located, aimed at addressing local need. In the context on the present study, systems change was defined by the NLCF FL evaluators as follows:

Systems are formed of the people, organisations, policies, processes, cultures, beliefs and environment that surround us all. The systems that surround people with multiple needs are particularly complex and have often failed to provide individuals with the support they need. The programme sees a successful ‘systems change’ as a change to any of the elements above that is beneficial to people with multiple needs, sustainable in the long-term (is resilient to future shifts in the environment) and is transformational. (Moreton et al, 2018: 7, emphasis added)

One identified ‘condition’ of whole-systems change (Lowe and Plimmer, 2019) is the active involvement of people who the system seeks to support. While terms used to describe these individuals can be fluid and interchangeable, people with LE are broadly understood to be ‘individuals or groups who share a common experience of social and health issues’ (Barker and McGuire, 2017: 598).

The involvement of people with LE was an explicit ambition of the NLCF programme. The 2016 Annual Report (Moreton et al, 2016: 31) stated that ‘one of the core principles of the Fulfilling Lives (Multiple Need) programme is that partnerships engage service users in every aspect of the design and delivery of services’. As I go on to discuss, partnerships across the 12 sites applied this principle in a variety of ways and in the BCFT programme this was primarily through the deployment of experts by experience (EBEs) as volunteers, and the employment of people with LE as paid mentors. In both instances, individuals were required to have personal, recent, LE of MD.

Key findings

Mechanisms for involving people with LE

The literature highlighted the involvement of people with LE as a central facet of programme delivery embraced across all 12 sites, albeit in different ways. Across the programme there was evidence of the involvement of people with LE as volunteers, paid members of staff, ‘researchers’, ambassadors and, at a national level, members of the National Experts Citizens Group (NECG) – a separately funded workstream of the programme, aimed at influencing policy at a national level.

In Birmingham, people with LE had been integrally involved in the design of the delivery model at the outset. The foci of involvement within this model was the ‘Lead Worker / Peer Mentor’ (LWPM) workstream, led by a homelessness charity. This workstream involved people with LE working alongside frontline key workers as part of outreach delivery teams and was centred on improving engagement with beneficiaries.

The service provided personalised support to individuals facing multiple and complex needs … it did this by assigning each of them a Lead Worker to navigate the landscape of services available to service users while helping them to manage their needs related to homelessness, substance misuse, [and] offending behaviours. Some clients also had access to a Peer Mentor, a person with lived experience of facing similar multiple and complex needs, who guided them on the path to a more fulfilled life. (Kibberd, 2019)

Operational between January 2015 and July 2019, frontline staff (lead workers) worked alongside paid peer mentors, recruited for their LE of MD. In total, 24 peer mentors were employed and 323 people were supported by the service. A social cost–benefit analysis conducted during the period from January 2015 to June 2019 found that the LWPM programme created net social benefits equivalent to £3.22 million, demonstrating that for every £1 invested there was a £1.11 social benefit (Kibberd, 2019).

The second key mechanism employed in Birmingham was the ‘Every Step of the Way’ (ESOW) workstream, originally envisaged as a ‘user empowerment programme that trains, supports and facilitates service users to become experts by experience, volunteers and peer mentors’ (Adamson et al, 2015: 16). Opportunities for ‘experts by experience’ (EBEs), as they were known, to get involved through the ESOW project included engaging with senior stakeholders through meetings, focus groups and consultation events and supporting the redesign of services through co-production. EBEs also had the opportunity to speak at conferences and get involved in campaigns raising awareness of MD (Revolving Doors Agency, 2021). In total, 171 EBEs volunteered with the programme over the eight years (Bennett, 2022).

Interestingly, across all reports (both nationally and in Birmingham), and indeed reiterated through the interviews, was an implicit assumption that the involvement of people with LE was a ‘good thing’. There was nothing to suggest that this was questioned or challenged. Indeed, significant value was attached to their contribution, expressed by one interviewee in the following way:

‘[I]f you’re to achieve systems change on any level, it needs to involve the viewpoints of everybody – that has some kind of experience within that field, you know. Someone who’s experienced homelessness or multiple disadvantage will be able to talk about those issues from a personal perspective. They can see it from a different angle from someone who just goes off and designs something on paper, you know? … And without that blend of lived experience, the experiential stuff around the table at the same time, you’re only getting a myopic view on a particular issue.’ (Stakeholder)

In summary, the mechanisms employed across the programme supported a LE contribution across four areas, which I categorise as support, voice, expertise and awareness (see Table 1). The extent to which this was achieved, and the limitations experienced, will now be explored.

Table 1:

Mechanisms of the involvement of people with LE across the NLCF Fulfilling Lives programme

Support Voice Expertise Awareness
Mechanisms Paid and volunteer peer mentors/peer support workers providing one-to-one support to current service users ‘Expert by experience’ attendance at local strategic meetings Initial involvement in NLCF programme design at the local level Conference attendance/delivery;

‘story-telling’ – people with LE sharing stories at a variety of forums
Paid and volunteer ‘system navigators’: supporting clients to access services Involvement in the recruitment of service delivery staff National policy development (through the NECG) and involvement in local policy development through participation in consultation Involvement in public awareness campaigns
Peer-led research MD service design/development at the local level (co-production events, focus groups and so on) Awareness raising across statutory partners (the police, health and housing) of issues facing people experiencing MD

Sources: Adamson et al (2015), Murphy et al (2015), Moreton et al (2016; 2018), CFE (2019), Kibberd (2019), Revolving Doors Agency (2021) and Bennett (2022).

Impact of involving people with LE in the systems-change agenda

In a report produced by the national evaluators entitled The Role of Lived Experience in Creating Systems Change – Evaluation of Fulfilling Lives: Supporting people with multiple needs (CFE, 2020), the impact of the involvement of people with LE was explored. The report concluded that people with LE contributed to ‘systems change’ in the following ways:

  • raising awareness and getting MD on the agenda – through awareness-raising campaigns (via online content, podcasts, radio interviews and so on), improving people’s awareness of, attitudes to and understanding of MD;

  • gathering evidence and providing insights – through peer researchers (who it is felt are able to garner more honest answers from people being interviewed; some also acted as ‘mystery shoppers’ within services);

  • influencing the design and delivery of policy and services – including through consultations, permanent positions on boards/committees and volunteer and paid roles (summarised, CFE, 2020: 10–12).

An earlier evaluation by Moreton et al (2018) found evidence that peer mentors ‘challenged traditional service protocols’ and ‘are more willing to assert the rights and needs of beneficiaries’, and through modelling this behaviour were beginning to ‘influence changes in culture and practice’. This evaluation also summarised the impact of peer mentoring on:

  • beneficiaries (offering hope, helping them to engage with services, building trusting relationships, offering creative solutions, having someone to comfortably discuss relapse and having someone who they find it harder to make excuses to);

  • staff teams (additional capacity and skills, increased capacity to offer emotional support to beneficiaries and help them to participate in social activities, bridging the gap between staff and beneficiaries, increased access to different networks and contacts, and fresh perspectives);

  • peers themselves (progress with their own recovery, new skills and confidence, and opportunities to gain work experience and employment) (Moreton et al, 2018).

Interviewees from the BCFT project expressed similar agreement in the importance of involving people with LE in the systems-change agenda. This was described primarily as enabling different voices to be heard and different perspectives to be understood and ensuring that a diverse range of individuals contribute to the understanding of how things can be done differently to improve outcomes. People with LE of system failures were seen as uniquely placed to ‘lift the lid’ on the realities facing people accessing services. The LWPM service, in particular, was felt to have resulted in better engagement and better outcomes for people experiencing MD, primarily because the individuals employed were able to successfully build trust with clients due to their deep understanding of the issues that they faced.

It is worth pausing here to reflect on how these reported impacts stacked up against the NLCF definition of what constitutes ‘systems change’ detailed earlier. It could be argued that few (if any) of the reported impacts can claim to meet the threshold of long-term sustainability and transformation, and can – at best – be described as localised systems flex. The implications of this are important, as it speaks to how we – as VSO leaders and practitioners – set our expectations around what is, or is not, possible to achieve. That is not to say we should limit our ambition, but we perhaps must think more critically about what we mean when we talk of ‘systems change’.

Limiting factors/barriers

Despite clear commitment to involving people with LE across programme delivery, and the noteworthy impacts captured through national and local evaluations, several limiting factors were consistently highlighted. These were observed across periods of time (prior to involvement, during early involvement and once involvement was embedded) and at individual and organisational levels (see Table 2).

Table 2:

Limiting Factors

Pre-engagement Initial engagement Embedded engagement
Individual level Lack of information, training and support.

Lack of clarity about ‘the ask’.

Lack of tailored recruitment and induction processes.
Tokenistic involvement.

Lack of a feedback loop.

Stigma

Inaccessible language.
Risk of burnout and risk to recovery journey.

Unequal power dynamics – perceived value of experiential knowledge; inability to challenge.

Glass ceiling and limited progression routes.
Organisational level Organisational culture/resistance to change.

Staff/organisational ‘unpreparedness’ to work with people with LE.

Lack of clarity about opportunities.
Top-down policy and practice.

Lack of clear pathways for volunteering, employment and progression.
Lack of evidence to support the embedding of LE involvement (lack of buy-in).

Lack of organisational resources to support ongoing involvement.

Sources: Moreton et al (2016; 2018; 2021), CFE (2019; 2020), Revolving Doors Agency (2019), Welford et al (2021) and Bennett (2022).

Prior to involvement at an individual level, a lack of adequate preparatory information, training or support had a detrimental impact on ensuring involvement was meaningful. Often, and particularly for people being asked to volunteer, there was a lack of clarity about what the ‘ask’ was, leading people to be unsure about why they were being asked to get involved.

For those being recruited into paid roles, the induction process – if not adjusted to take account of the fact that for many peer mentors this was their first foray into the workplace for some time – could be an intimidating experience. This barrier was reiterated by one of my interviewees:

‘It’s great saying “we want to involve people with lived experience” but if you don’t have the mechanism within the organisation to support those people, don’t be surprised if there are then issues that lead to you having to end that person’s involvement; or else actually, you are employing people with lived experience that haven’t worked before, or who have worked very little, so don’t expect them to just walk in and do your e-learning courses, or – sorry to say it – as basic as it is, even know how to use a computer. So, it’s things like that, at a micro level, that are just assumed or taken for granted.’ (Delivery partner)

At an organisational level, prevailing organisational cultures, perceived as resistant to change and perpetuated through inflexible policies and procedures, presented barriers. Linked to this was a lack of (existing) staff ‘preparedness’ to work alongside people with LE as professional peers. This played out in some interesting ways, with one of my interviewees from Birmingham describing her experience:

‘So, when we first started people who had been at [organisation], women especially, been there for multiple years, and all of a sudden we start to see people going to the kitchen and go to the toilet with their handbags tucked under their arms. Lots of people left. They didn’t like to think, uh, they’re working with a bunch of ex-junkies. Umm yeah. Lots of people left, they thought it was wrong. They didn’t want to be associated with it.’ (Person with LE)

During the early stage of involvement at an individual level, ‘tokenism’ – involvement not based on principles of genuine co-production or co-design, or perceived as ‘tick-box’ exercises – was consistently identified as limiting the efficacy of involvement. This was particularly prevalent for those involved as volunteers. As a delivery partner from the Birmingham project described: “[Y]ou’ve got a thing that says, right, we are looking at how experts by experience influence the system, and lots of people say ‘yes, we want an expert, come to our board, look everybody we’ve got an expert’ … and then, I am not sure what happens after that” (delivery partner). In a similar vein, a lack of consistent feedback – particularly when people were asked to give their time, knowledge and expertise to an activity and were subsequently left in the dark as to what happened as a result – risked eliciting despondency and a reluctance to get involved in future activities.

For both volunteers and employees, inappropriate and inaccessible language, and ‘top-down’ policy and practice development, posed a continued barrier to their effective involvement. The frustration this caused was reiterated by the people with LE who participated in my interviews and was a clear bone of contention, as one interviewee explained:

‘Even down to being in meetings, like everybody used to go to Core Group back in the day, and there’d be like all these professionals sat round [the] table, and they all seemed to be competing to use the most complicated word, or you know, sound the most intelligent – and I said one day to [worker]: “I’m going. I’m going.” And she said: “Why are you going?” And I said: “Cos they’re talking shite; I don’t know what they’re talking about.” Right, so we ended up having another meeting and we [EBEs] all came in talking street and this, that and the other, and they didn’t have a clue what we were talking about. And we said: “This is what the experts feel like, you know.”’ (Person with LE)

At an organisational level, there was a lack of clear pathways between volunteering, employment and promotion opportunities. It was not clearly identified how, and why, roles and opportunities existed and it was challenging to support these without organisational buy-in and an associated organisational framework.

For established volunteers or paid staff with LE, a different set of potential challenges emerged. Of particular importance was a high risk of burnout due to the sheer level of the ‘ask’ (be that as a volunteer or as a paid member of staff) and the knock-on effect of this on their own recovery. This risk was further compounded where a lack of organisational resource was in place to support people’s involvement over the longer term.

The perceived inequity of power dynamics between people with LE and those who deliver services and/or make decisions about services surfaced. At an individual level, people employed sometimes felt unable to challenge or highlight problems within the ‘system’ or within the organisation for fear of jeopardising their employment status – an evident paradox, given that the overall driver for their being employed in the first place was to do just that.

A further way that this power imbalance was observed is best described as the ‘glass ceiling of lived experience’. This was evident in two ways. First, the extent to which experiential knowledge held by people with LE was valued. While the rhetoric across the programme was that experiential knowledge was vital to inform and influence change, the reality in some projects was that this was confined largely to influencing frontline delivery (often achieving small-scale ‘systems flex’) rather than at a strategic level.

‘I think the main barrier as far as I can see is that people with lived experience are not seen as an answer to anything at a higher level in that decision-making role. There is no value seen for somebody that lived 20 years homeless coming onto a board, or a policy meeting and sharing their story. You know what I mean?’ (Delivery partner)

Second, there was a lack of progression routes for people with LE in the workplace, and a tendency for organisations to want to keep those individuals by and large within designated LE roles. While people in these roles (and this barrier did mainly relate to paid roles) may possess a range of skills and attributes outside of their LE of MD, these could often be overlooked:

‘So yes, I do think it’s a good thing that organisations recruit people with lived experience. But, there’s another problem, which is about a kind glass ceiling for the people who get jobs through their lived experience. And then it’s kind of difficult for them to move up. So, they get stuck in fairly kind of like lower-paid roles.’ (Person with LE)

Finally, at the organisational level, a lack of evidence to support the assertion that services are better designed when they are co-designed with people who have LE created barriers to organisations fully embracing and adopting new ways of working.

Creating the ‘conditions’ for involving people with LE

This review sought to identify the mechanisms by which people were involved in the FL programme and the key barriers and facilitators to this involvement. This section summarises the suggestions synthesised from the papers and reports reviewed (Murphy et al, 2015; Moreton et al, 2016, 2018; CFE, 2019; 2020; Revolving Doors Agency, 2019; Welford et al, 2021; Bennett, 2022) and the interviews conducted. It presents these recommendations as steps needed to ensure the ‘conditions’ to support the effective involvement of people with LE are met.

Principles

  • Adopt the principles of co-production in all activities, summarised as ‘equality of access and contribution; genuine, ongoing involvement; and flexibility and openness throughout’, and ensure staff are trained in co-production practice and that organisations have a good understanding of what ‘good’ co-production looks like.

  • Ensure that there is a clear communication loop and that people with LE understand the changes that have been made as a result of their input, or when changes have not been delivered why this is the case.

  • Understand and recognise the reasons why people do (or do not) want to get involved; and ensure that an appropriate balance between the ‘giving’ and the ‘take-away’ is built into the opportunity.

  • Check that volunteers and staff do not feel exploited and monitor potential risk of harm.

  • Involve a diverse pool of people with LE, with consideration given to their individual journey and in particular the proximity of their LE.

  • Continuously seek to demonstrate the benefits of organisations involving people with LE beyond the boundaries of a particular organisation or programme.

Preparation

  • Gain organisational ‘buy-in’ to the involvement of people with LE – with a stated aim to sustain and embed expert involvement, shifting thinking and practice at individual, organisational and policy levels.

  • Develop organisational policies and procedures that are flexible and actively support the involvement of people with LE to enter (and remain in) the workforce.

  • Underpin this with workforce training to ensure existing staff teams understand better how to support people with LE to get involved as volunteers and/or paid members of staff.

  • Support people (existing staff and those with LE) to understand what is meant by ‘systems change’ so that they are able to better appreciate the impact of involving people with LE.

  • Offer a range of opportunities, with clear parameters, to give people choice about what they get involved in.

  • Ensure clarity of role and purpose, and careful integration with key-worker teams.

Progression

  • Offer ongoing training, practical help and support, particularly for peer mentor roles, but also in preparation for people being involved in recruitment processes, consultations, meetings or other activities.

  • Provide space, and support, for people with LE to meet and share experiences; offer access to pastoral and emotional support and ensure that people with LE have a key organisational contact who they trust.

  • Provide support that helps peer mentors to understand professional workplace boundaries and to navigate organisational procedures; develop work-related transferable skills.

  • Develop clear progression pathways so that people can move from volunteering into employment.

  • Provide a wide range of employment opportunities and options, including roles outside of services supporting people with MD, and offer further opportunities for progression within the workplace.

  • Recognise that the skills, attributes and knowledge of people with LE extend beyond that LE.

Areas for further exploration

The impetus for undertaking this ‘scoping exercise’ on the NLCF FL programme was to help refine research questions for a doctoral study – and it certainly achieved this. The findings have ignited particular interest in: the role of the paid ‘peer mentor’; the progression (or lack thereof) beyond being a worker with LE; and the value put on ‘experiential knowledge’ and the appropriation/commodification of this knowledge within organisations. These are issues touched upon, but not explored in any depth or through a critical lens.

Similarly, an exploration of the longer-term impact of the involvement of people with LE was limited. As previously noted, the ‘systems change’ impact could at best be described as ‘systems flex’, with arguably little of this pointing to long-term transformational change. There remains a pressing imperative to better evidence and demonstrate the impact of this approach to effecting long-term system improvement in services supporting people facing MD.

Conclusion

The findings presented in this paper bring together learning from an eight-year programme and offer an important contribution to the knowledge and understanding of the ways in which people with LE of MD can be effectively involved in the design and delivery of services. The findings also provide insight, albeit to a lesser extent, into the impact this involvement can have on the systems-change agenda in the field of MD.

An appreciation of the potential impact of the involvement of people with LE, the pitfalls or limiting factors to be alert to, and a better understanding of the optimum conditions needed to facilitate better involvement, are helpful to VSO leaders and practitioners working in the field of MD and beyond.

Funding

This work was supported by the NIHR School for Social Care Research’s Individual Research Career Development Award.

Acknowledgements

With thanks to my PhD supervisors from the Institute for Community Research & Development (ICRD) at the University of Wolverhampton – Dr Jane Booth and Dr James Rees.

Conflict of interest

The author declares that there is not conflict of interest.

References