A Social Perspective on Distress for Parent Carers

For our other courses the Insider’s Guide and the Looking After You courses, we have sort of, it sort of dawned on us that what we are doing is interventions that support people’s mental health (Manager, Amaze)

So it’s a pretty clunky rhetorical device to push the agency of the term ‘therapist’ from individual psy experts on to the diffuse and disparate set of practices, people and settings of a community and voluntary sector organisation. But herein lies the essence of informal care practices. They challenge conventional notions of expertise and accepted hierarchies of care and knowledge12 and where interventions don’t need to be standardised, evidence-based technologies of a given professional field but rather they can be, organic, needs-driven and constituent of relationships themselves. They can be advocacy, or they can be listening to people, helping them to fill in a form, all the while carefully thinking about how other practices inside and outside of that organisation could be useful and how to best link people to these. The technological paradigm has seen a colonisation of human experiences by medical and psychiatric language. However, meaningful practices of care do exist beyond these colonies. They reside in the material possibilities and relationships that people experience in places like Amaze.13 Grant14 suggests that some non-expert spaces can provide care practices better than those of the psychological or medical professions but to a degree that rather misses the point. This false dichotomy of expert/non-expert minimises the inherent expertise in the everyday care practices that happen in community and voluntary sector organisations like Amaze. Take the quotes below from two of the managers at Amaze:

Yeah. I mean, I think, and parents say this to us again and again in lots of different contexts that there’s something about having contact with the service that it’s about genuinely understanding where they are and what life is like for them and not pushing it away do you know what I mean—not sort of let’s pretend this isn’t happening or let’s gloss over that or let’s imply that you’re making a fuss or you know that, we always try to never do that sort of judging or pushing away or like you are making too much of this or you know why are you seeking a label for your child (Manager, Amaze)

...and I have often think with the calls it’s about kind of summing up what parents have said and saying you know that you know this is what you want you know (Service Manager, Amaze)

What is happening here is what often happens in the most useful statutory psychological care practices—that is, those that eschew the fetishisation of technologies, techniques and change projects in favour of focussing on the encounter—encounters that are non-judgemental, empathic and understanding, where a form of social solidarity is developed between someone who has reached out for help and others who are in a position to respond. Where our organisational therapist can transcend even the most empathic professional, however, is in opening up a range of diverse responses to the person who has reached out. Their care practices are varied, multifarious, informal and often ad hoc. However, taken as a whole, they open up a diversity of beneficent experiences, practices and opportunities, some of which are experienced therapeutically,13 others as more pragmatically helpful. These sites make possible the ‘everyday work of recovery’ that accounts for why so many of the people we talked to said that Amaze had helped their mental health more than anything else they had experienced.

If care practices—and that ultimately has to be our focus, rather than professional expertise or staid inflexible knowledge paradigms—are only talked about in terms that are not appropriate to their specificities, then they will be submitted to rules and regulations that are alien to them.15

If we only recognise the formal channels of care and use the conceptual coordinates, we have to evaluate their effectiveness. If we try to apply these to informal settings, then we will almost certainly miss the care practices in these spaces. Care, whether silent and implicit or visible and tangible,16 can best be understood as sets of disparate practices17 that are choreographed into a pattern that people sometimes experience as useful and meaningful. If we want to know about the nature of fluid innovative care practices, then there is a need for methods that are sensitive to this fluidity.18 The utility of an organisation like Amaze is that it implicitly understands well-being not as a set of entities to be acquired or as internalised qualities of individuals but instead as relational practices of specific times and places.19 This is an organisation run by parent carers for parent carers, and rich forms of knowledge accrued and negotiated between them arises out of the everyday practices of caring for a child with complex needs. And these knowledges implicitly recognise the social codes, habits, instruments, needs and ways of making sense20 that resonate so powerfully with other parent carers who reach out for help.

For some people it’s literally a one-off for a, you know, key bit of signposting or information or whatever but a lot of people I would say will dip in and out over the years on that trajectory, on that journey you know when, when things go up and down or they come across new things that they need to know about or get support with and, and then we have a sort of smaller minority that are, sort of, are in quite regular contact, as it were (Assistant manager, Amaze)

Here the role of parent carer is understood as a journey where a range of informal and formal care practices have been oriented around the different parts of that journey. And the key is that what this journey looks like and the range of care responses that have been developed are fluid, variable and responsive to those needs. This might be giving some information or signposting; it might be doing things that save a parent carer time and energy; it may mean listening to them on a telephone helpline when they are at the end of their tether and in crisis, or helping them to fill in a form; it may be advocating and supporting them in meetings where they sense their knowledge is not given the same value as others. It may be, as in this example, a form of advocacy which is complex, demanding, multistakeholder and seemingly intractable:

So, the volunteer will arrange a suitable time for the parent to meet to find out what the issues are for the parent so for example it may be that the parent really doesn’t know what to do, communication with the college has broken down completely, the young person’s been excluded from college but the parents feel sort of that it’s because of that young person’s say special needs or disabilities that haven’t been taken into account, haven’t been supported properly so then the volunteer will unpick what that situation was, ask the young person maybe if they’re able to describe exactly what happened, unpick how that was and then try and facilitate a good a sort of meeting with the college, with the parent and with the young person trying to support the young person to say it from their perspective, trying to then also support the parents to keep calm around it and to you know but also encourage the college staff not to be defensive but open and in the long term you know facilitate that young person going back to college and you know and being happily sort of involved so that, that’s something that reason (Project Manager, Amaze)

The scenario above is complex but representative of the kinds of work done and reveals a subtle and nuanced care practice that results from a range of actions—helping a young person to express himself or herself from his or her perspective; working out how the young person’s complex needs have not been taken into account and thinking through ways to address this; facilitating a meeting of parties where communication has broken down, supporting parents to remain calm and supporting school staff to be open and receptive in the face of institutional challenge to their practices; and then facilitating and supporting a longer- term transition for the young person. Responding to such complex circumstances requires not only flexibility, fluidity and expertise, but also multiple forms of knowledge, and knowing and appreciating that supporting someone who is in distress and has reached out can require care practices that are complex sets of embedded relational and material activities. On another level for some parents, such a set of complex circumstances and work isn’t what they require when they reach out. For some their experience could be described as beneficent in the sense that, rather than being characterised by curing, healing and medicine, it is characterised by communitarianism and connectedness, support, compassion and benevolence:

If you ask the parent’s feedback on the event you know number one for

what they liked about it was just that they were with other people in the

same position (Manager, Amaze)

For many of the parents who reach out to organisations like Amaze, it isn’t deep-seated trauma that needs to be worked through, nor negative thoughts or feelings that need to be challenged via a mechanistic therapy, nor indeed rampant neurotransmitters that need to be culled. The issue at hand for people who have found themselves ensconced in the often individualising, pathologising, and sometimes helpful mental health system is that the problems they face are, on the whole, practical, social, relational and financial. What was clear from the accounts of the parents was that they needed support, advice, information and companionship. They needed to be respected and listened to and have their knowledge privileged in the various consultation processes that they found themselves party to. They needed greater financial support, flexible employment opportunities and meaningful respite. For these we need a different type of therapist, a therapist oriented towards looking outside rather than solely inside the parent carers’ internal world.

Psy practitioners have things that people won’t find anywhere else; they have tools, theories and paradigms, and techniques that can impact upon people and help them. The thing is—so do other people who are not psy professionals. Normal people, untrained in psy techniques and whose care practices are unburdened by the need to buttress their professional status, pay mortgages and build careers. They too bring empathy, understanding and non-judgemental social spaces, and they also bring grounded, practical support and expertise to formulate forms of care that address the real sources of people’s suffering.

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