One of the most insidious ways in which institutions maintain their power is through their tendency to blame individuals for institutional failings. This often isn’t intentional: one of the mysteries of institutions and bureaucracies is that systems set up by well-meaning, clever people, to help other people, often act in ways which have the opposite outcome to the outcome which everyone involved intends to have. There is lots of research into why people don’t comply with medication or treatment regimes, but less, I think, into why systems don’t comply with the intentions of the people working within them.
Much like a dystopian sci-fi film in which robots created to serve humankind develop their own ends and take power over their former masters, our public service bureaucracies can override the compassionate, humanising instincts of people who set out in careers to help others, and instead find themselves serving and ground down by ‘the system’. Some of the most value-driven people I’ve met work in mental health, but it’s common to hear them say that their goal for a particular individual is to keep that person out of the very ‘mental health system’ which is made up of them and their colleagues. They see that system as harmful, but feel completely powerless to change it and can only try to evade it, subvert it, or bend its rules.
With this in mind, I’ve been thinking about ways in we (‘the system’), blame people who use services for our system’s failings:
- My patient is non-compliant
If we design systems without talking to the people they are intended to support, we probably shouldn’t be surprised when those people are unwilling to fit themselves into those systems. Despite ‘personalisation’ in social care and a ‘patient centred’ NHS, professionals place people too often in the role of child and themselves in the role of parent. I know that when I’m a patient, this can be an attractively comfortable set of roles: I just want the experts to fix me and I’m less keen on discussing any changes I need to make, to live healthily in future. But this relationship doesn’t work. It doesn’t enable people to avoid illness nor services to have the most effective impacts. It is particularly problematic for people with long term health or support needs, who don’t want to spend years fearing the next crisis. We need to share the responsibility for designing services which offer people the kinds of support, information, training and back up they need when they need it, and which allows people and families in turn to take back responsibility for their own lives.
- This person doesn’t fit our referral criteria
A man with a mental health and substance misuse problem explained ‘dual diagnosis’ to a colleague: “Sometimes I’m drunk and mad, but at other times I’m mad and drunk.” We have designed many of our interventions around a particular label, and built all of the structures of training courses, qualifications, clinical roles, funding streams, service specifications around those specialisms. In doing so, we have ignored the fact that many people with mental health problems self-medicate with substances, and that substance misuse problems can contribute to mental ill health. We have created few parenting support networks and resources which are accessible to parents with learning disabilities, but we are quick to decide that such parents will never be ‘good enough’. We create children and adults services which can’t work together to help someone plan for adulthood so that an individual’s 18th birthday comes apparently as a complete surprise to everyone.
We can’t create specialist services for every possible combination of conditions. Instead, we can recognise that whether people have one, two or more long term conditions, they will generally have the same easily understood goals: to live well in a place of their choice, with people they love and something to do. If we can create services around those universal goals, they can draw in the relevant expertise about particular needs or conditions as and when they are needed. That’s why Shared Lives carers appear to be so successful at helping people to address long-standing health needs, despite the fact that addressing health needs is rarely what they are commissioned to do.
- This person is too angry to engage
Anyone who has followed campaigns like Justice for LB will be aware of the shameful behaviour of some organisations when they have let down people in their care and their families. At a time when humility and empathy were most called for, organisations have behaved in ways that make it hard to believe they are, in reality, just large groups of humans. They have treated bereaved and angry families as communications risks to be managed.
Even in less tragic circumstances, it is too common to see organisations treat people who have good reason to complain without the respect and understanding that would be appropriate to any normal conversation between humans, whilst being quick to point out that the increasingly angry and frustrated individual is behaving ‘inappropriately’. The word ‘appropriate’ is one of the most powerful tools organisations has for defining the terms of a relationship and asserting control. In a very different context, we sometimes expect people with learning disabilities to encounter the limitations of their support services without becoming ‘challenging’, and use the ‘challenges’ they present to justify practices which only increase their frustration, in a vicious circle.
What is ‘appropriate’ behaviour when we have been let down, had our dignity ignored, or even been bereaved? Whilst all organisations have to keep their teams safe and no one should go to work and face abuse, wise organisations recognise that a large bureaucracy populated by people in ‘work mode’ may not be best placed to decide. And recognising and empathising with an individual’s appropriate anger can often be the best way to diffuse it.
I agree. It’s the same in Shared Lives, to much bureaucracy. Shared lives carers are not listened to in most places re the person they care for or cared for.