Introduction
This article presents a critical interrogation of the value of lived experience knowledge in support work with multiply disadvantaged adults. A person with ‘lived experience’ refers to somebody who has lived through extreme disadvantage or an adverse social or health issue(s) such as homelessness, mental ill-health and/or addiction. They are often considered ‘peers’ who, by virtue of sharing a common experience, possess a unique knowledge and capacity to advise and support others:
“experiential knowledge is assumed to place ‘peers’, individuals who have had experience of what is socially framed as problematic (disability, substance misuse, sex work and so on), in a favoured position to help fellow peers going through similar problematic situations” (Baillergeau and Duyvendak, Reference Baillergeau and Duyvendak2016).
Over recent years in the UK there has been a large-scale adoption of ‘lived experience’ within social policy making and practice (McIntosh and Wright, Reference McIntosh and Wright2018). Embraced within statutory and voluntary social welfare institutions alike, experiential expertise is increasingly being built into service planning and development processes, delivery and evaluation (Bovaird et al., Reference Bovaird, Van Ryzin, Loeffler and Parrado2015). Individual participation on grounds of lived experience is often undertaken on a voluntary basis and includes ‘representation’ (e.g. on boards, panels and advisory groups), involvement in pre-qualifying training (e.g. for health and social care professionals) as well as various forms of formal and informal peer support or mentoring. However, lived experience knowledge is also the basis for salaried practitioner roles within support services, such that there is now a burgeoning lived experience workforce.
Despite a seeming consensus (particularly within the social policy and practice community) about the value of ‘lived experience’, there is parallel academic debate spanning disciplinary boundaries about what ‘lived experience’ actually means and what role it should play within welfare organisations and support services (McIntosh and Wright, Reference McIntosh and Wright2018). The revaluation of experiential knowledge, with its concurrent goal to deprivilege professional ‘expertise’ and empower service users, has been problematised with doubt cast about its inherent value, raising philosophical and political questions about the nature of lived authority and expertise (Blume, Reference Blume2017; Fox, Reference Fox2016). This article contributes to the debate by examining the lived experience ‘navigator’ role in support work with multiply disadvantaged adults – those with interrelated past and present conditions and support needs linked to poverty, offending behaviour, homelessness, ‘street culture’ activities, and substance misuse (Dobson, Reference Dobson2019).
The article draws on empirical research gathered as part of an evaluation of a navigator service operating in two English local authorities. It does not seek to summarise the evaluation findings or the ‘effectiveness’ of this particular service but rather explore broader questions around the value of lived experience in the context of neoliberal welfare reforms (Crossley, Reference Crossley2017; Dobson, Reference Dobson2019). In so doing, the article brings new data to bear on existing empirical and theoretical knowledge. It makes a key contribution to debates about the role of lived experience in support provision for multi-disadvantaged adults by drawing attention to several core tensions: ambiguity around the potential benefits of experiential knowledge in relationship-based work; the positioning of experiential expertise in relation to ‘expert’ knowledge; and the potential risks that the navigator role poses including to navigators’ own mental and emotional health. In drawing attention to these challenges, the article is intended not to discredit the lived experience workforce but rather contribute to efforts to progress, do justice to and further value experiential knowledge (Byrne and Wykes, Reference Byrne and Wykes2020).
The lived experience movement
The importance of ‘lived experience’ or ‘experiential expertise’ has gained in recognition since the 1980s in the UK and other western European countries, although it is closely aligned with self-help and survivor movements which have a longer history, as well as wider philosophical and sociological moves to revalue ‘other’ non-scientific knowledges (Byrne and Wykes, Reference Byrne and Wykes2020; Patrick, Reference Patrick2020; McIntosh and Wright, Reference McIntosh and Wright2018; Blume, Reference Blume2017; Baillergeau and Duyvendak, Reference Baillergeau and Duyvendak2016; Noorani, Reference Noorani2013; Demszky and Nassehi, Reference Demszky and Nassehi2012). The movement to legitimise experience-based knowledge has been driven by a rights framework grounded in critiques of professional power and expertise – historically that which has been more highly valued but also experienced as unhelpful and harmful – and sees experiential knowledge as not just an alternative but a more legitimate and effective source of knowledge. The lived experience agenda positions the knowledge gained from ‘living through’ as a more authentic source of knowing that challenges formal, institutionalised expertise. Although this can infer subjectiveness and uniqueness, it also assumes a ‘typicality’ amongst ‘peers’ amounting to a collective knowledge that, it is argued, is becoming a distinct discipline with its own underlying philosophy and values (Byrne and Wykes, Reference Byrne and Wykes2020; McIntosh and Wright, Reference McIntosh and Wright2018).
The lived experience movement has a critical quality in its struggle to contest dominant social responses and modes of knowledge provided by established professional groups, such as doctors, probation officers or social workers in favour of service users as experts of their own needs (McIntosh and Wright, Reference McIntosh and Wright2018; Baillergeau and Duyvendak, Reference Baillergeau and Duyvendak2016). Work to strengthen the status of experiential knowledge is undertaken therefore with the goal of moving marginalised and disempowered groups, and the recipients of welfare services, from passive and subjugated subject positions to active and empowered citizens who have a meaningful role in the decision making which affects them. The revaluation of life experience is therefore fundamentally political and pursued as an empowering movement that has the potential to rebalance and redefine relationships of power (Baillergeau and Duyvendak, Reference Baillergeau and Duyvendak2016; Fox, Reference Fox2016):
“Involving experience-based knowledge in the course of policy is in many aspects a kind of revolution against the usual political order. Experience of local actors and their knowledge not only relativizes, but questions the authoritative knowledge of experts and policy makers. At the same time, the involvement of experience based knowledge means the involvement of new actors in the course of policy making, and their struggle for recognition” (Demszky and Nassehi, Reference Demszky and Nassehi2012: 172).
In welfare support and care provision, the valorisation of lived experience entails a move away from ‘top down’ interventions and ‘old knowledges’ delivered by statutory agencies and professionals to more ‘innovative’ or ‘creative’ models including those where service users actively participate in service design and delivery (Gough, Reference Gough2017). In turn, knowledge about ‘what works’ to effect positive change becomes more democratic, diverse and plural in nature.
Peer support grounded in experiential knowledge has come to be viewed as a key element of this shift and central to recovery strategies for offenders, drug users, and people with mental health problems (Feansta, 2015; NEF, 2013). Studies suggest that peer support can help personal recovery through components of shared experience, role modelling, providing social support, and increasing attendance/interest in treatment thereby offering benefits over that achieved through traditional care (Barker and Maguire, Reference Barker and Maguire2017; Bailie and Tickle, Reference Bailie and Tickle2015). Lived experience practitioners are also considered ‘change agents’, vital for transforming the organisational systems that fail to adequately support those with experience of multiple disadvantage (Byrne and Wykes, Reference Byrne and Wykes2020; McIntosh and Wright, Reference McIntosh and Wright2018; CFE Research, 2020; MHCLG, 2021).
The growing commitment to lived experience both politically, ideologically and in practice is articulated by advocates as a progressively oriented shift and celebrated as indicative of progressive knowledge entering the neoliberal mainstream. In this sense, the increasing status of lived experience represents a successful “acting-back against neoliberalism” (Dobson, Reference Dobson2019). Yet as Appiah (Reference Appiah2020) has noted: “if lived experience was once viewed as a way to speak truth to power, power has learned to speak ‘lived experience’ with remarkable fluency”. Indeed, it has been argued that the rights-based lived experience agenda has been successfully co-opted by the (economic) requirements of a neoliberal welfare state such that lived experience might be seen both as a “manifestation of protest” and a “management resource” (Noorani, Reference Noorani2013; Pilgrim, Reference Pilgrim, Bell and Lindley2005). Critics highlight, for instance, how service user involvement initiatives are closely tied to ‘third-way’ political projects that seek to enlist active citizens as a means of legitimising state governance strategies but without the meaningful engagement of users and survivors, thereby undermining political activist efforts. It is claimed too that knowledge grounded in experience is commonly construed as ‘secondary’ or an ‘add-on’ serving a merely complementary or tokenistic role to that of professional experts (Meriluoto, Reference Meriluoto2018; Corcoran and Grotz, Reference Corcoran, Grotz, Hucklesby and Corcoran2015). Such competing motivations – activism and austerity-driven savings – have been identified elsewhere within social policy reform including with regard to personalisation (Flemig and Osborne, Reference Flemig and Osborne2019).
In this context, the growth of lived experience roles might be understood as a component of the parallel expansion of the non-professional workforce within welfare services. These ‘new professions’ which, according to Crossley (Reference Crossley2017), have been “smuggled into public services” under the austerity agenda provide a cheaper alternative to the recruitment and training of more established and often registered public-sector professionals. The participation of those with lived experience might therefore not only work to promote social justice but also their inclusion within a precarious, low-pay and often non-unionized labour market (Voronka, Reference Voronka2015). The employment of unqualified professionals in a context of diminishing public welfare provision is said to be indicative too of a broader trend towards de-professionalisation across the criminal justice, and health and social care workforce in which ‘attitude’ over specialist knowledge is privileged. In this context, professionals such as social workers experience a weakening of their status as the demand for their expertise diminishes, together with a narrowing of their remit. This brings with it reduced opportunities for work with adults and in the general provision of welfare support (Malin, Reference Malin2017).
Despite a seeming consensus in policy and practice, or what Meriluoto (Reference Meriluoto2018) calls a “participatory dogma”, ‘lived experience’ itself remains an ambiguous and contested term with robust evaluative evidence of its benefits scarce (Eddie et al., Reference Eddie, Hoffman, Vilsaint, Abry, Bergman, Hoeppner, Weinstein and Kelly2019; Wincup, Reference Wincup2019; Bailie and Tickle, Reference Bailie and Tickle2015; Fletcher and Batty, Reference Fletcher and Batty2012; Scourfield, Reference Scourfield2010). There is confusion for instance around the term ‘peer mentoring’ with no consensus regarding its definition and great diversity in the ways in which it is delivered. Further, reviews of the literature within the criminal justice, mental health and housing fields commonly highlight a lack of good quality research evidence regarding the efficacy of mentoring and have suggested that it is at best ‘a promising but not proven intervention’ (Jolliffe and Farrington, 2008: p.9, cited in Wincup, Reference Wincup2019). What is often missing too in claims around the efficacy of lived experience support is theoretical understanding of why and how it might be effective; little is known about the micro-dynamics of the practice (Wincup, Reference Wincup2019; Buck, Reference Buck2018).
In what follows, we explore these tensions and debates about the value of lived experience with reference to empirical research gathered as part of an evaluation of a lived experience navigator service for multiply disadvantaged adults.
The Research
The article draws on empirical data collected as part of a commissioned evaluation of a large-scale programme managed by a national third sector organisation and designed to support adults facing multiple disadvantage – those experiencing combined problems of homelessness, an offending history, problematic substance or alcohol misuse, and/or mental ill-health. The article draws on data collected in relation to a ‘navigator’ service that operated in two local authorities as part of this wider programme.
Reflecting the definition of the word ‘navigator’ as a person who steers a ship, the navigator role is aimed at directing people to the care they need. The service discussed here was conceived therefore as a ‘no service service’ with the intention not to replicate provision or provide a service directly but rather to facilitate better access. This was seen as essential in the context of a service landscape where welfare organisations’ processes and procedures – including inflexible appointment systems, conditional access requirements, exclusive service thresholds and cultural intolerance of challenging behaviours – are often inimical to the successful engagement of those with multiple support needs (McCarthy et al., Reference McCarthy, Parr, Green and Reeve2020).
Aimed at initiating a ‘system change’ in how multiply disadvantaged adults are supported, emphasis was placed on navigators operating differently to more traditional support workers. The intention was for navigators to work flexibly and responsively to assist users to access services by advocating on their behalf and co-ordinating a personalised package of support. They had small caseloads to provide the freedom to work intensively with individuals over long periods of time including through relapse if necessary. Navigators did not require professional training or qualification for the role and most (all in one local authority area) were appointed on the basis of having had prior ‘lived experience’ of homelessness, addiction and/or involvement in the criminal justice system, and a sense that they would be able to use this knowledge effectively (Byrne and Wykes, Reference Byrne and Wykes2020; Baillergeau and Duyvendak, Reference Baillergeau and Duyvendak2016).
The evaluation was undertaken by a team of researchers at Sheffield Hallam University and received full ethical approval from the institution’s Research Ethics Committee. The article reports on data collected during three phases of fieldwork between 2016 and 2020. In total over 32 semi-structured qualitative interviews were undertaken with 27 individuals involved in the delivery of the service including: ‘navigators’ (n=seven), ‘lead navigators’ (n=four), service managers (n=three) and professionals from partner organisations (n=13). Five participants (two service managers, one lead navigator and two professional ‘stakeholders’) were interviewed twice (during two different phases of fieldwork). Staff changes over the period of the evaluation meant that some people were only interviewed in one round of fieldwork. Only four interviews were carried out with service users as research into the service user perspective was undertaken by peer researchers within the organisation and did not form a core part of our evaluation. The limited data from recipients of the navigator service impedes a full understanding of the value and effects of lived experience support. Instead, the paper draws attention to a range of questions primarily from the perspective of the policy and practice community.
Interviews lasted around one hour, were recorded with the consent of the participants and fully transcribed. Although local factors impacted on the operation of the navigator service within the two different local authority areas, analysis of the interview data did not follow a case study approach. Instead, data was brought together within a broader thematic analysis underpinned by principles associated with critical realism. This approach assumes that a full understanding of the role of the lived experience workforce cannot be arrived at through engagement with empirical data alone (inductive reasoning). Rather, prior theoretical ideas guided the analysis and were in turn shaped and revised or ‘adapted’ by the empirical evidence (Layder, Reference Layder1989). My ‘findings’ therefore represent theoretically informed explanations about the effects of the lived experience workforce; how experiential knowledge works to produce certain outcomes. Reflecting the fundamental nature of qualitative research, these claims are intended to be theoretically rather than empirically generalisable (Mason, Reference Mason2018).
The ‘value’ of experiential knowledge
This section begins the discussion of the research findings by exploring the value of experiential knowledge within the care labour market and in navigators’ work with service users.
Some of the navigators in our study had limited educational capital and had been away from the labour market for a considerable time before being employed as a navigator (although several had experience in peer mentor roles). Working as a navigator therefore offered participants – some of whom had few employment options due to a lack of qualifications and work experience as well as a criminal record – access to a different form of capital. Their ‘lived experience’ became reconfigured as a personal resource; that which had been devalued – their past experiences and knowledge – was harnessed as an “asset” and a commodity for exchange (Voronka, Reference Voronka2015; Gough, Reference Gough2017):
"…their problems then become their skills, so what was problematic before, all them skills, all them assets, that’s what makes them a decent navigator. It’s flipping it on its head ” (LN4 Footnote 1 )
Navigators were seen not simply to possess ‘lay’ knowledge but considered a skilled practitioner or a “professional ex-” (Brown, Reference Brown1991). This enabled individuals to move, sometimes cautiously, from a devalued and marginalised identity to a more positive social identity in which they were recognised as competent, knowledgeable and highly regarded (Boddy and Wheeler, Reference Boddy and Wheeler2021; Ehrlich et al., Reference Ehrlich, Slattery, Vilic, Chester and Crompton2019):
“I’m a product of the lived experience route, I’ve got my own experiences of the criminal justice system, the mental health services, to a degree homelessness, I did sofa surf and I had my own addictions through cocaine and cannabis. I would have been a beneficiary five years ago…so taking that step to paid employment with [service], it was an anxious time for me but I’d been told that I was ready for it…a person like me doesn’t get that many opportunities to work for a council” (N7)
As well as the benefits of the role for navigators themselves, our research revealed shared assumptions about the value of navigators’ experiential knowledge for service users. Lived experience was considered a powerful tool for facilitating user engagement and relationships of trust on the grounds of shared understandings of e.g. having lived through a particular physical, mental or social condition and associated challenges. Lived experience was identified by interviewees as privileged knowledge enabling a more fundamental empathy and connection, commonly described as an ability “to relate”:
I’ve got a lot of lived experience so I can sometimes say to certain beneficiaries I’ve been where you are. I’ve maybe not been street homeless but I’ve had substance misuse issues as a young man and a lot of them like that, cos you can relate and that really breaks down barriers (N1)
Support on this basis can be understood as emblematic of a sense of equality, solidarity and reciprocity between navigator and service user that others have identified as important in support work more generally (Boddy and Wheeler, Reference Boddy and Wheeler2021; Fox, Reference Fox2020). Experiential knowledge was also felt to retain an authority that credited navigators with a greater “respect” placing them in a more favourable position (than other front-line practitioners and professionals) to motivate user engagement and positive change. In this sense, experiential knowledge was positioned not only as a supplement to professional knowing but sometimes counter to that expertise (Dawney, Reference Dawney2013). Closely related to this, navigators were also understood to perform the part of ‘role models’ or “beacons of hope” (Ehrlich et al., Reference Ehrlich, Slattery, Vilic, Chester and Crompton2019), an embodiment of proof that it is possible to overcome adversity:
I think they have more respect for somebody that’s got that lived experience rather than someone who’s just been to college or read it in a book or been on a course or whatever cos they know where they’re coming from…they know they’re not talking to, I suppose a beneficiary would call it a do-gooder. They’re talking to someone who’s been there (N6)
Some however questioned pervasive assumptions about the inherent value of experiential knowledge and its status as a prior superior to professional knowledge or a pre-requisite for being a ‘good’ navigator. One participant pushed back on the value of self-disclosure for instance, describing instead an ‘ex-smoker syndrome’ whereby lived experience or inappropriate disclosure (Phillips et al., Reference Phillips, Fowler and Westaby2018) can generate negative effects (Corcoran and Grotz, Reference Corcoran, Grotz, Hucklesby and Corcoran2015). She explained her choice to not disclose her own past in recognition that her experience does not necessarily have relevance to another’s journey. For this participant, lived experience has a unique quality (and so is not representative) and does not act as a qualification for effective support:
"…you can see people warming to it but then you can almost watch as time goes on that people become slightly resentful, and there is that ex-smoker type thing, if you’ve met an ex-smoker you don’t want to smoke around them cos they can be the harshest judge…I’ve been through services myself but I never disclose that cos my journey’s my journey, it’s not anybody else’s and what is important to me may not be relevant to other people ” (P1)
Echoing this sentiment, Blume (Reference Blume2017) has noted that one person’s experience can only become a resource for another if both can identify with each other, and identities are multiple and complex.
One participant made the point that many frontline workers have ‘lived experience’ even if they are not employed to provide support on that basis and might not publicly disclose that experience. This reflects others’ research that ‘lived experience’ is often not confined to ‘peer’ support workers and that experiential knowledge, albeit undisclosed and unacknowledged, informs many professionals’ practice (Phillips et al., Reference Phillips, Fowler and Westaby2018; Gray et al., Reference Gray, Davies and Butcher2017; Oates et al., Reference Oates, Drey and Jones2017). This highlights how ‘expert knowledge’ lacks uniformity and those working in professional roles often possess a ‘hybrid identity’ which is central to their practice. Expert knowledge cannot necessarily therefore be neatly juxtaposed to that of lived experience (Baillergeau and Duyvendak, Reference Baillergeau and Duyvendak2016; Fox, Reference Fox2016).
Another participant in the research pointed to a prevailing ideology that the views of those with lived experience count as “absolute gospel” (P3) but argued that such an assumption needs challenging. Here, we see experiential knowledge construed as “a solid base of pure knowledge”, “self-evidently important and real” (McIntosh and Wright, Reference McIntosh and Wright2018) and assuming the characteristics of what Dawney (Reference Dawney2013) calls ‘objectivities’ – values, ideas and knowledges that are unquestionable. It was suggested instead that different knowledges (professional or experiential) are more or less valuable depending on the context in which they are deployed. This echoes the work of Baillergeau and Duyvendak (Reference Baillergeau and Duyvendak2016) and Blume (Reference Blume2017) who question the “intrinsic value” and “inherent authority” of experiential knowledge, asking instead what aspects of experiential knowledge should be appreciated. Operating in the form of objectivities or ‘gospel’, experiential knowledge risks the kind of ‘co-opting’ cautioned above. Indeed, it might be employed as a resource to provide justification for prevailing governing regimes; justification that is difficult to challenge (Meriluoto, Reference Meriluoto2018).
From the perspective of the small number of users interviewed during the evaluation, the disclosure of navigator’s lived experience was not spotlighted as the key ingredient that influenced their positive experience of navigator support. Rather, their personal qualities and style of working, which included a non-judgmental, responsive and respectful approach – one regarded as different from their previous experiences with professionals – was paramount. This echoes the evidence from a large body of work on what ‘good’ support with vulnerable groups looks like (e.g. Lee and Donaldson, Reference Lee and Donaldson2018; Buck, Reference Buck2018; Parr, Reference Parr2015), which has been theorised and understood through different frameworks including recognition theory (Boddy and Wheeler, Reference Boddy and Wheeler2021) and ethics of care (Bond-Taylor, Reference Bond-Taylor2017):
‘He treats me as a person, a normal person. He treats me as a friend. I like it because I’m treated normally, not treated like I’m fucked in the head, like talked down to, talked to like a child…I do daft things but I’m not a child…[navigator] talks to me with respect and I talk to him with respect” (Service user)
Navigators’ lived experience was, however, an important factor underpinning their empathy for (and sense of respect for) service users – thereby countering a deficit and stigmatising focus or a commonly encountered “professional misrecognition” (Boddy and Wheeler, Reference Boddy and Wheeler2021). Yet these data raise the question of whether lived experience is a necessary element of ‘good’ support as well as if and how the disclosure of lived experience – in the telling of recovery journeys – confers better relationships with service users (Phillips et al., Reference Phillips, Fowler and Westaby2018).
Responsibilisation: Positioning lived experience knowledge
This section moves on to a critical consideration of the role of experiential expertise in relation to that of professional practitioners. Attention is given to the way in which the navigator role developed in a way that might be seen as representative of ‘responsibilisation’ or the shift of responsibility away from the welfare state to other social actors – in this case, people with lived experience (Peeters, Reference Peeters2019).
It was widely acknowledged that the label of ‘navigator’ – alluding not to the direct provision of a service but rather to the job of steering individuals through the welfare landscape thereby enabling access to the services they need – was misleading. Rather than a ‘no-service service’, role expectations gradually (and inevitably) expanded such that navigators did provide a non-professional – yet skilled, demanding and complex – support service. ‘Navigation’ was, in fact, intensive, relationship-based practice wherein ‘the relationship’ was at the centre of the provision, and itself acted as an intervention and vehicle for recovery (Parr, Reference Parr2015).
This expanded role – which meant that navigators were providing a range of practical and emotional support to service users, many of whom had multiple chronic (physical and mental) health problems and social needs – brings with it the question of how lived experience knowledge should be positioned in relation to professional expertise. These questions were brought into even sharper relief in our research because navigators primarily operated on an outreach basis (on the streets) which required lone working as well as independent assessment and decision-making about the right response to specific but often complex problems or situations without the support of co-located professionals (in contrast to lived experience workers who may be located within institutional settings). Regular training was provided for navigators therefore and stakeholders praised navigators’ wide-ranging practice knowledge. Yet the quote below betrays the complexities and contradictions at the heart of navigator provision which echo previous work around the responsibilisation of volunteers in care and welfare provision (Verhoeven and Van Bochove, Reference Verhoeven and Van Bochove2018). The quote points to both a need for experience and training but also an acknowledgement that ‘upskilling’ potentially shifts responsibility from professionally trained practitioners to unqualified navigators, indicating an unease about how far navigators should be willing to take on tasks traditionally carried out by professional practitioners:
“if we were just navigators you’re navigating into services, but before you’re doing that you’re dealing with a lot of emotional stuff, so it’s easier to deal with if you’ve got a lot of experience. The answer to that is to upskill your staff in certain areas – housing, mental health, drugs – but this is where the problem comes. People are saying are we support workers or are we navigators? The idea of the scheme is that you’re navigated to the service that can professionally help them, you shouldn’t have to be dealing with that stuff” (N2)
Another navigator similarly welcomed the provision of regular training but acknowledged that this did not equate to the specialist education of probation officers, mental health nurses or social workers, most of whom are university educated and in possession of scientific and/or clinical knowledge and particular methodologies:
“We’re always on training, we’ve just finished dual diagnosis training. That doesn’t make you an expert though. You can be out of your depth” (N7).
An absence of professional training or qualifications among navigators is not a problem in and of itself, and professionalisation is not necessarily desirable. The latter risks diluting designated lived experience roles and the first-hand understanding they offer (Byrne and Wykes, Reference Byrne and Wykes2020). Furthermore, it is the skills mix and plurality of knowledges (combining lived practice and professional expertise) that has the potential to offer service users equally helpful but diverse forms of support (Fox, Reference Fox2016). Non-professional status also often leads to relationships defined by less pronounced power differentials, something regarded as advantageous (Manthorpe et al., Reference Manthorpe, Martineau, Moriarty, Hussein and Stevens2010).
Integrating the lived experience workforce instead relies on clear role boundaries and effective collaboration across professional and non-professional roles, as well as a clear distinction between the forms of knowledge applied by each group of workers (Baillergeau and Duyvendak, Reference Baillergeau and Duyvendak2016). While we did see evidence of effective multi-agency working in which (e.g. mental health) professionals supported navigators with guidance and advice, and facilitated entry to specialist treatment, a key dimension of the responsibilisation of navigators was a blurring of the line between qualified and non-qualified duties. Navigators could often feel out of their depth and overwhelmed by the volume and diversity of work they were involved with when trying to support their clients, over whom they had considerable influence. It is arguably the case that navigators were afforded too much responsibility (Scourfield, Reference Scourfield2010). Furthermore, the navigator service, at times, inadvertently prohibited efficacious collaborative working by enabling key statutory welfare services (in particular, adult social care and probation) to withhold or withdraw services, something fundamentally at odds with the intended desire to better meet users’ needs and secure their right to services (Boddy and Wheeler, Reference Boddy and Wheeler2021). This was because the support provided by the navigators came to be seen as an invaluable and additional service welcomed by local partners operating in an under-resourced welfare environment. This shifted responsibility away from the statutory sector and arguably placed disproportionate responsibility and a significant weight of expectation on to the navigators:
…we’ve took so much pressure off probation cos you hear all the time, probation workers have got massive caseloads and it’ll be ‘are they engaging with you? Ok, I don’t need to see them this week’ so you’re taking that element away from them as well, even high-risk offenders (LN4)
I’ve got one who’s IPP [Imprisonment for Public Protection] and will be seen all the time by his probation officer but he engages well with me so she’s happy to do a phone call with him once a week and see him another week. So us are saving money there (N6)
It is important to consider this finding in the context of neo-liberal reforms defined by a reduced role for the state and a diminished welfare support system. It might be argued that the increasingly popular navigator model exacerbates trends that have fundamentally changed the way the state provides services and, in turn, the social contract between the state and citizens (Lobao et al., Reference Lobao, Gray, Cox and Kitson2018; Crossley, Reference Crossley2017). One participant explained how a recent proliferation of grant-funded navigator services ostensibly represents a shift away from austerity with an insertion of cash into front-line services. She explained however that these services delivered largely by an untrained and unqualified workforce do not alleviate a growing need for higher-level specialist care for adults with complex needs, particularly within mental health and adult social care (Manthorpe et al., Reference Manthorpe, Cornes, O’Halloran and Joly2015). In this sense, the growth across welfare sectors of navigator-type services might arguably represent a cheaper, insufficient substitution for specialist care, a process also emblematic of de-professionalisation (Malin, Reference Malin2019).
Navigating ‘risk’
This final section builds on the suggestion that navigators are being ‘responsibilised’ to discuss the implications of this in terms of the co-opting of navigators in the management of high-risk populations, and the risks posed to a navigator’s own recovery and mental health.
Navigators were regularly supporting individuals who not only had high level needs but could present a high level of risk too – including those supervised through multi-agency public protection arrangements (MAPPA) for the management of violent and sexual offenders:
We’re taking MAPPA 3s, MAPPA 2s, most high-risk people in society, but we’re managing it and we’re risk assessing it and it’s doing all right. We’ve just had somebody who’s got out of prison for 20 years who stabbed his wife 16 times in front of his children, and I know people turn round and go is that [navigator service]…some of them are massively risky (LN1).
Working with potentially dangerous offenders meant that navigators were involved in negotiating and operating with different frameworks and concepts of ‘risk’ (Corcoran and Grotz, Reference Corcoran, Grotz, Hucklesby and Corcoran2015). Participants described working within the confines of the service’s own formal risk assessment processes, and we did not uncover any incidences of navigators’ personal safety being compromised or navigators feeling unsafe. It appeared to be the case however that participants also made subjective assessments of risk and, in so doing, rejected dominant models of risk management as part of their wider practice ethos (Corcoran and Grotz, Reference Corcoran, Grotz, Hucklesby and Corcoran2015). Navigators often voiced an alternative view of risk, one informed by their own experiential knowledge and their relationships of trust with service users, which generally led to a greater tolerance of ‘risky’ behaviour:
…she’s kicked off in front of me, she’s carried on, she’s threatened to hold me hostage and all sorts, but I’m still there…whereas other services have, while she’s been working with us, just gone ‘no that’s enough’, she’s been evicted twice cos they’ve had enough of the threats and stuff but we’ve been there through it all (N6).
This reflects a fundamental desire at the heart of the lived experience movement to operate a different way of working with multiply disadvantaged adults, one that works on a less conditional and more inclusive model of support. Nevertheless, the research findings suggests a potential paradox within the work of navigators, arising in part from the processes of responsibilisation that have already been noted. Although they were not officially part of statutory offender management regimes, navigators worked closely with statutory partners in the criminal justice system (e.g. the police and probation) and were assimilated into formal and informal monitoring mechanisms of offenders in so far as they acted as an extra pair of eyes, maintaining contact, supporting and reporting on users’ behaviour:
We try and work together but they are really left picking up the pieces, we drive the first bit along with them and then they are left to keep on with those weekly visits [as part of Integration Offender Management] (P2)
While the issues associated with responsibilisation discussed above are of pertinence here, so too are ethical and political questions about the co-opting of the lived experience workforce. A key driver of the lived experience agenda is the counter narrative experiential expertise provides to established – often statutory – systems and professions, and the power implicit therein. Navigators potentially risk compromising their own (oppositional) welfare philosophy the more they operate within established practices and mainstream discourses of e.g. risk and justice (Buck, Reference Buck2019). This is a finding that resonates with wider debates about the increasing role of the ‘independent’ third sector and the volunteer workforce in the management of offenders (Gough, Reference Gough2017; Corcoran and Grotz, Reference Corcoran, Grotz, Hucklesby and Corcoran2015). In our research, navigators described a battle to retain their practice ethos, one based on independence, the acceptance and respect of users, and being “on their side”. This position was understood as in conflict with that of key statutory services defined as having “an agenda” i.e. the police and other ‘enforcement’ agencies:
We don’t want to be seen as enforcers otherwise they won’t engage with us. So it’s that real fine balance… we can’t be seen to be doing that [enforcement] cos it’s just not what we’re about (N2)
The navigator role also presented an emotional risk to service users that had the potential to thwart their own recovery journeys. As noted above, navigation is fundamentally a type of relationship-based work in which navigators are involved in long-term, close relationships with extremely vulnerable service users who have high level and complex needs. The work is high-intensity and emotionally exhausting, with frequent exposure to traumatic events which has potential consequences for navigators’ own mental health (Lemieux-Cumberlege and Taylor, Reference Lemieux-Cumberlege and Taylor2019). The ‘emotional labour’ (Hochschild, Reference Hochschild1983) that the work entailed for navigators, some of whom were still on a recovery journey themselves, put them at risk of experiencing setbacks. This required a significant degree of on-going support from management staff:
"you’re employing people who are on the edge of breakdown basically, they’re either going to go back into their mental illness or they’re going to start taking drugs or alcohol again and it doesn’t mean they’re on the verge of it all the time but actually that’s where they’ve come from… So spotting somebody on the downward slope and picking them up again really early is really important and managing that in a very strong way is important” (SM1)
We heard reports that some service users had died whilst on navigators’ caseloads. These deaths took a significant emotional toll and required resilience and support to enable navigators to cope with the loss and temper feelings of failure:
“You really need to be mentally tough to do this kind of work cos these people are very poorly some of them. We’ve recently lost a beneficiary in the last few days” (N5)
“…my first six months I had a beneficiary that passed away, we did a lot of good work with him, he was getting on and his health deteriorated and he passed away unfortunately. That was very hard, my resilience was down at that time, I was thinking what am I actually doing this for if people are still dying, what’s the point and I had a very bad wobble” (N7)
Our research suggested that management staff did their best to offer regular, formal and informal support and training to navigators in an organised and professional manner, which was praised highly by navigators. Yet despite the emotional demands of the work, navigators did not have a framework of support equivalent to professional (e.g. clinical) staff in similar roles. Access to specialist clinical supervision, combining professional education and training with practical experience, is understood as essential in mental health and social work for enabling practitioners to manage complex relationship-based work, cope with the emotional demands of their work and negotiate difficult decisions, including around self-disclosure (Baillergeau and Duyvendak, Reference Baillergeau and Duyvendak2016). It is through clinical supervision that front-line professionals are provided with emotional protection (Dunlop et al., Reference Dunlop, Woods, Lovell, O’Connell, Rawcliffe-Foo and Hinsby2021; Eaves Simpson et al., Reference Eaves Simpson, Robinson and Brown2018). This raises the question of whether the involvement of those with lived experience, especially in outreach work with highly vulnerable adults, might be empowering for navigators but also has the potential to leave them in an emotionally precarious position (Scourfield, Reference Scourfield2010).
Conclusion
Appreciation of the potential benefits of the lived experience workforce for social policy and practice is growing, with an appeal that traverses ideologicalboundaries. This article seeks to further our understanding of the value of experiential expertise through a critical engagement with data drawn from research carried out with those delivering a navigator service for multiply disadvantaged adults. The article speaks back to the extant literature by illustrating and elaborating some key tensions, opportunities and challenges inherent in the lived experience movement. In particular, the article has drawn attention to the complex and ambiguous part that lived experience plays in forming and strengthening relationships between service users and support workers, including the question of when and how navigators should disclose and discuss their own lived experience (Phillips et al., Reference Phillips, Fowler and Westaby2018). The discussion also drew attention to the positioning of experiential knowledge vis a vis that of traditional and professional expertise. This latter issue brought to the fore questions around the extent to which lived experience workers are being ‘responsibilised’ to meet the demands of a precarious and under-resourced welfare state (Verhoeven and Van Bochove, Reference Verhoeven and Van Bochove2018). As the paper illustrates, this also brings with it potential risks to both established professionals and navigators themselves. Our research indicates that including lived experience workers in the delivery of care and support for multiple disadvantaged adults is a precarious process that may lead to staff being overburdened and emotionally challenged outwith the frameworks of support that come with professionalised care work.
The paper draws on a relatively small body of data and does not claim empirical generalisability, but the research findings nevertheless raise important questions that require further exploration if lived experience knowledge is to be employed both effectively, safely and in a socially just manner. Indeed, we need to understand more about how lived experience roles ‘work’ in practice with multiply disadvantaged adults. This is imperative if lived experience professionals are to be valued as a distinct workforce with appropriate training, support and recognition.
Competing interests
The author(s) declare none
