“Our minds attach labels to things in the surrounding world, and we interpret those labels as discontinuities. If things have different labels, then we expect them to be a clear line of demarcation between them. The universe however, runs on processes rather than things, and a process starts as one thing and becomes another without ever crossing a clear boundary. Worse, if there’s some apparent boundary, we are likely to point to it and shout ‘that’s it’ just because we can’t see anything else worth getting agitated about…
If we were less obsessed with labels and discontinuity, it would be much easier to recognise that the problem is not where to draw the line, it is that the image of drawing a line is inappropriate…
Even such obvious distinctions as alive/dead or male/female turn out, on close examination, to be more like a continuous merging than a sharp discontinuity.”
From The Science of Discworld by Terry Pratchett p56.
How relevant for the convoluted mess that is our attempt to make sense of mental health. There is no clear line between healthy and sick, or even sane and insane, competent and incompetent, normal and abnormal, functioning and impaired.
Why do we try to draw these lines?
We are seeking clarity about madness and pain. That’s not a bad thing. Our conceptual frameworks are primitive but the need for them is valid.
We need to be able to identify incompetence when it puts others at risk.
We also use labels as a way to limit access to resources. There’s a number of beliefs that come into play here, such as the ‘deserving poor‘, or the ‘genuinely mentally ill Vs the worried well‘. There’s a fear that any truly valuable resource will be consumed by the selfish who’s needs are lesser. I’ve encountered this belief many times. When the resource is money there’s sense to being concerned about exploitation and corruption! But when the resource is a bed in a suicide prevention clinic, or a support group for bereaved parents, you wonder how many who don’t need or deserve support are going to want to spent their time like this.
These beliefs are worth examining because the ideal of fair distribution of resources which is noble and appropriate, has a dark side which is gatekeepers and access difficulties. Whatever means are set up to ensure fair distribution are at risk for becoming the horrific hoops people have to jump through to get what they need. Unfairness, corruption, structural oppression, and inequality abound in such systems.
Getting back to a practical example: where I live a new scheme came out a while ago where a doctor could help anyone who had a mental illness access a number of sessions with a psychologist every year. It was astonishingly popular. Despite all the concern about people not asking for help and the power of sigma preventing people from connecting with services, thousands of people went to their GP, asked for help, were diagnosed and put on a care plan and went to see a psychologist. The budget for the project blew out.
We have a number of options at this point. The path chosen so far was to restrict the number of appointments each person could have every year. Restrict allocation of the resource. Everyone gets less. It’s been a bone of contention since, a glaring contradiction between public health announcements telling people to seek help, and massive feedback that 10 sessions of support a year is hugely inadequate for many people who are struggling.
There are other ways to balance budgets for projects like this and we see these often in public health. Restricting access is a common one- erecting more filters to prevent people regarded to be at lower risk or need or more able to meet their support needs independently from accessing the resource. The NDIS operates in this way, meaning that a whole army of support workers are now administration workers whose job is to help vulnerable clients tick enough of the right boxes to qualify for assistance.
Filters are valuable but they are also risky. They erect barriers to resources and are never elegant enough to ensure that the most vulnerable are not inadvertently screened out. As an example of that, consider the hundred of people we have living on our streets who do not have the basic financial support of welfare because the process of accessing it – proving their identity, having a fixed address of some kind for correspondence, and navigating the paperwork is beyond them or judged by them as too harmful to their mental health.
Hand in hand with filters is often the use of expertise. We set up systems whereby those with professional expertise (ie competence) apply the filters, to ensure the right people are accessing the resources. This approach often creates valuable fail-safes. It helps to limit self serving behaviours by those who would benefit from creating dependence on resources and by those wanting to access more than their fair share. It can reduce waste where resources are squandered on a first come first served basis, rather than an allocation of need. It can also provide valuable guidance for those in need so they do not ricochet between different resources trying to find what is helpful.
The dark side of expertise is gatekeepers. People who have the power to deem you unsuitable and block your access. Again, systemic inequality is a huge risk, and the harder it is to become a gatekeeper, the more unlikely that gatekeepers themselves will have much in common with the most vulnerable members of society whom they are intended to facilitate access for. Across these gulfs – race, gender, culture, region, diagnosis, experience – we see that diversity is the stumbling block. A homogenous group of gatekeepers will prioritise access for those people they most identify with, empathise with, and understand. The minority, who are often the most vulnerable simply due to being in a minority, find that gatekeepers all too often erect access barriers and exclude rather than champion. As an example, trans young people locally can greatly struggle to access mental health services. The gatekeepers to these services (doctors, hospital registrars etc) frequently have an uninformed and prejudiced idea of what it is to be trans, and deny access based on these ideas. The very diversity that underlies the need is also the factor that makes access to resources such a challenge.
In setting up systems of distribution of resources with the aim of fairness, we need to be wiser. First we should always explore and uphold the option of self referral wherever we can. What would happen if anyone could access a psychologist, to return to the initial project I mentioned. Would it truly be a financial disaster as hundreds of thousands of people self referred? How do we know this?
What about if we added to the budget for the psychologists all the money we are currently spending on the experts facilitating access? The thousands of GP appointments to assess mental health and set up care plans.
What about if we also decided that we would spend less money telling people to ask for help and more money making sure help was there when people asked for it? Add a chunk of anti stigma campaign and educational campaign money to the pot too. Perhaps if the help was more accessible and more reliably helpful we’d find people would tell each other about it and save us the bother.
How is the budget looking now? How is the access looking? Is it choked by the less needy or full of the vulnerable? Are the resources going where they are really needed, generally speaking? Are we erring on the side of risking allocating to some who could do without, or risking some who need not being able to access? This a similar question to one we ask in the structure of our judicial system – given the imperfect nature of all systems, is it better for some innocent people to be punished, or some guilty people to go free?
We don’t need to stop at self referral. But it’s such a powerful tool and so often overlooked. It’s the nature of governing bodies to want to govern, to assume that more regulation and restriction is what they are here to do and to reach for those tools over and over again in service of admirable values and goals such as fair distribution. But it is also the nature of systems to be flawed, and of all policy and law to have unintended consequences. Wisdom is in assuming flaws and exploring how to mitigate them, assuming there will always be bad unintended consequences and watching for them as they unfold. Trying to set up utopias on paper can be high risk for nightmare realities for those we intend to protect. Self referral is part of self regulation, a need and capacity of all species and all too often overlooked in policy and governance which starts with the assumption of incapacity and then tries to meet the need on individuals or communities behalf. On a personal level, self regulation is experienced as ‘freedom‘, one of the primary universal human needs, and often a key need obliterated by the current operating of our high needs mental health supports.
There are people exploring this idea in practice, for example suicide support services that allow self referral. Part of the difficulty with enacting policies like this is they outrage our sense of the way things should be done – our culture of experts and assessments is well embedded in mental health. They also reallocate many people within the system, making many gatekeeping roles redundant and moving our experts into roles of resources themselves or facilitators. It’s not always a comfortable change.
Another way we can respond to our basic supply and demand problem with access to psychological services is to explore the demand in more detail.
- Why is there so much of it? Can we do anything to reduce the need?
- Is any part of the demand an unintended consequence of a policy or public health approach that we could change? For example, are our mental health public education campaigns accidentally making people feel inadequate to navigate life challenges themselves? Are our attempts to ensure fair distribution of welfare causing severe psychological distress?
- What is the demand actually for? What combination of needs are people accessing this resource to meet? Could some of them be adequately – or better – met by other resources or in other ways? Could the resources be delivered in a different way and still meet needs? Are the needs being adequately met by the resources or are the resources false satisfiers creating the illusion of meeting the need but actually only increasing it?
So, for example, are many sessions being used up as people try to find a psychologist with whom they have a good fit, or conversely are people too afraid to waste the sessions and are staying with psychologists they are poor fit with and getting less out of the sessions? We could change the structure to address this if it’s an issue, for example better supporting networks to help people find psychologists with interests in the areas in which they are struggling, creating a different time and fee structure for first appointments, creating opportunities for people to see psychologists work, videos, or writing before choosing one, and so on.
Would some people be happy in group settings? These are usually less expensive and have greater reach, they also add in access to peers. What kinds of models do people want? A group run by a facilitator is very different to a group designed to be clinical treatment, as is a peer based group. Online and face to face have differences also.
Are some people primarily bringing community needs – such as loneliness, into psychology sessions where they cannot be met? What other formal resources can we create for these people?
We can celebrate the success of a service without having to erect access barriers. Creatively engaging the challenge of budgeting resources opens so many opportunities for diverse, meaningful community development. Exploring the beliefs we bring to service design and delivery can give us so much scope to see where good intentions founder and to be part of better systems.
So often I’ve found that when unpacked, the ideas we have about the scarcity of resources come from a very limited perspective. The things that people need, the things that really matter, are not in short supply. Love, compassion, respect… These things are not used up or diminished by being shared. We do not need to be in competition over them. There are a thousand ways a community tells its members they are valued, and that’s as it should be, a thousand different ways people hear that best. So often the question people are really asking when they turn to our carefully guarded, expensive mental health resources are ones of worth. Does anyone care if I kill myself? Does my pain count? Am I worthy of compassion? Am I loved? It is very dangerous to ask questions like these of such a fallible and broken structure as the mental health system.
When designing services and governing resources it’s worth keeping in mind that most of us will have moments when we will need to ask such questions of our community, whether we are made vulnerable through tragedy, illness, or our own mistakes. We all need a community that answers ‘yes, you have value’. If it is about drawing a line, we should all be on the inside of it, dignified and human.
Sarah K Reece 