Is this the way to treat people with Learning Disabilities?

There is little space in these prison-like hospitals to be a social worker
An adults’ social worker reflects on how it feels to visit a person with learning disabilities who is cared for a long way from home.

By an adults’ social worker

It’s a break in the usual routine of an adults’ social worker to visit a person with learning disabilities who is cared for a long way from home, ‘out of county’. A long car or train journey provides unusual time to sit and think. In my early days of social work these journeys were filled with anticipation for the highly specialised place I would find at the other end, with their fees of between £3000 and £6000 a week.

But this anticipation has faded with a series of, at best, underwhelming visits. These days I mostly wonder why there is nowhere closer along my route of up to 300 miles that is deemed able to meet the needs of the person I’m going to see.

Arriving at the final destination provokes a variety of feelings. If the visit is to a secure hospital, the towering electric gates provide a stark reminder of the containment occurring within. My own depersonalisation, as I am instructed to leave ‘contraband’ in a locker (the list is so long I leave everything), is an echo of the depersonalised world of the patients. The use of the word contraband itself is a symbol of the institutionalised setting, the parallel with prison is no coincidence.

There is precious little space in these hospitals to be a social worker. You’re shepherded into a meeting room and the patient arrives at a carefully planned time to participate in the part of the meeting professionals feel is appropriate for them. Families may also have made the long journey to attend. Each professional presents a report. The psychiatrist, psychologist, nurse and occupational therapist are the staples. There may be a hospital social worker, but they tend to be spread thinly.

‘What really happens here?’

I want this person to be back in their community. Some have ‘lived’ in these hospitals for 10 years or more. Professional expertise about them has faded from their home community team and been transported here, to these people, in this room. Families, though, are my experts of choice. The rich history of the person (not the patient) is ingrained in the family’s hearts and minds. Their knowledge is no dusty archive, no mishmash of paper files and notes across multiple computerised systems.

In these meetings, I am me, a lowly social worker among the high brow medical professionals in the room, often the sole representative from my local area, grappling with these reports and my gut instinct. To what extent can I confidently challenge the psychiatrist’s view? Or the psychologist’s?

What I want is to spend time on the ward. Talk to the people who really know. Spend time with the person, the health care assistants, the cleaners. What really happens here? I need health colleagues from my community to be here, engaging with their peers in this private hospital, meaningfully probing how their work with the person is leading to a life back in their own community.

There should be no pecking order, I know, and I should not describe my social worker role as lowly. I am secure in my social work practice, but I am not a psychiatrist and the truth is that in this room, and others like it, they wield the power. I will discuss the meeting with my local psychiatry colleagues in our next multi-disciplinary team meeting when I return, but really this person needs their home community psychiatrist looking this one in the eye, taking the lead. Owning their care, and their return.

‘A very different agenda’

The government’s Transforming Care policy, launched in the wake of the Winterbourne View scandal, is working towards closing beds in hospitals and moving people into the community. The premise of our conversation around this table should be that we are all working together to achieve that. However, as the 7 Days of Action report, A Trade in People, recently pointed out, only NHS beds are being closed, the private sector has spotted this and is moving in to fill the gap.

One US-based healthcare company, for example, has been snapping up hospitals for people with learning disabilities in the UK. This seems quite a niche interest for this organisation, but a look at their website offers some clues about this. It states that they ‘build or acquire high-quality hospitals in rapidly growing markets, then invest in the people and equipment needed to allow each facility to thrive and become a dominant healthcare provider’.

I will forgive myself, then, for being distracted in the meeting by thoughts of how this aggressive ambition of market dominance can be reconciled with Transforming Care, my own role and this person’s life and human rights. How can I wield the power here, in the face of contradictory corporate intentions, to get this person home? I don’t want to doubt the professionalism of the people around the table, but these are not my colleagues and we are ultimately not on the same page. Their paymasters have a very different agenda.

‘Step up to the plate’

We file out. I hope I’ve helped move things along, challenged where I should. I’ll hang around for a while. See the person on their own. Try to get into the ward itself. Have a chat with the staff who support hands on, day in day out. I’ll meet the family in more familiar surroundings, another time. Then I’ll go back to my team, urge commissioners to source the accommodation and support the person needs. I won’t let it drop.

But it’s not enough. Under Transforming Care we now have Care and Treatment Reviews, but we all need to step up to the plate, all of the time. Let’s not kid ourselves that we’re commissioning care in these private hospitals (where are the commissioners, the contracts, the holding to account, do we even know what we’re paying for here?), we’re stumbling into this for want of the will to do better in our communities. And the private sector know it.

First published 3rd August 2017 in Community Care

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About This Blog

This series of blog postings takes a multi-disciplinary approach to social policy, bringing together ideas from psychology, economics, neuroscience, philosophy and related subjects to inform policy makers and other professionals about how we might think in new ways about the individual and society . There are some easy ways to read it:

• Very Easy – Just read the blog titles: Most blog title are propositions that the blog content attempts to justify. Just reading the names of the blogs in order from first to last will provide an overview of the approach.

• Quite Easy - Just read the text in bold. This brings out the main points in each posting.

• Easy - Just watch the videos. This is easy but can take a while. The running time of each video can be seen in the caption above it. Hover over the video to see the controls – play and pause, large screen, and navigate around.

• Harder – Read the whole blog. Useful if you are really interested, want to learn, or want to comment, disagree with the content, have another angle or whatever. The blog is not being publicised yet but please feel free to comment and I will try to respond if and when I can.

The blog attempts not to be a set of platitudes about what you should do to be happy. In fact, I would like to distance myself from the ‘wellbeing marketplace’ and all those websites/blogs that try and either sell you something or proffer advice. This is something quite different. It takes as its premise that there is a relationship between wellbeing, needs and control in both the individual and society. If needs are not being met and you have no control to alter the situation, then wellbeing will suffer.

While this may seem obvious, there is something to be gained by understanding the implications of this simple idea. We are quite used to thinking about wellbeing in terms of specifics like money, health, relationships, work and so on, but less familiar with dealing with the more generic and abstract concepts of need and control.

Taking a more abstract approach helps filter out much of the distraction and noise of our usual perceptions. It focuses on the central issues and their applicability across many specifics that affect how we think and feel.

The blog often questions our current models of the way we think about the human condition and society. It looks at the things we all know and talk about – decisions and choices, relationships and loss, jobs and taxes, wealth and health but in a way in which they are not usually described. It tries to develop a new account, that draws on a broadly based understanding of what we now know from science, culture and common sense.

If you are looking for simple answers you will not find them here. This is not because the answers are complex. It is because the answers are not necessarily what you expect.

If you are looking to explore in some depth the nature of wellbeing and how it is influenced by what you can control, and what others can control that may affect you, then read on. Playing through some of these ideas into the specifics of policy, at the level of society and the individual, will take time but I hope you will see the virtue of working from first principles.

When walking through any landscape different people will see different things. A geologist might see an ice-age come and go, forming undulations in its wake. A politician might see territorial boundaries. Somebody else may see a hill they have to climb together with the weight of their back-pack.

Taking a perspective of wellbeing and control is different from how we normally look at the world. It's a deeper look at why and how things happen as they do and the consequences on wellbeing. It questions the relationship between intention and outcome.

We normally see and act through the well-worn habits of our thoughts and behaviours as they have evolved to deal with things as they are now. We mainly chose the easy options that require the least resource. As a survival strategy this generally works well, but it also entrenches patterns of thought, behaviour and emotion that sometimes, for the benefit of our wellbeing, need to be changed. When considering change, people often say ‘well, I wouldn’t start from here’. And that’s the position I take. I am not starting from the ways things are or have evolved, but from the place they might have been had we known what we know now and had designed them.

The blogs argue that, in an era of specialisation, we have forgotten the big picture – we act specifically and locally within the silos of our specialised education and experience. We check process rather than outcomes. We often fail to integrate our knowledge and apply it to the design of our social and work systems (as well as our own thoughts and behaviours).

To understand society we first need to understand the individual and to this end, a psychological account of how we feel, think and behave based on notions of wellbeing and control is proposed. And not in an abstract airy-fairy kind of way, but as a more or less precise theory that forms the basis of a predictive and testable computational model. The theory is essentially about how, both as individuals and society we manage multiple (and often conflicting) intentions in real time within limited resources. I call this model 'the human operating system'. This is like a computer operating system except that it is motivated by emotions, modulated by reason and is expressed in the language of mind and its qualities of agency and intentionality.

Just as in the mathematics of fractal geometry, complex structures can emerge from simple rules. The explanation given of the interplay between emotions, physical bodily states, thoughts and behaviours shows how much of the complexity in the individual can be accounted for by a set of relatively simple rules. This can be modelled using a system of symbolic representation and manipulation involving intentions and priorities operating in a complicated and changing environment.

The language and models that we use to understand the individual can also be applied to organisations and other structures in society. Through an understanding of what makes for wellbeing in the individual we can also understand what makes for better wellbeing in society generally. The focus, therefore, is on understanding the individual and then using that understanding to inform how we might think about other structures in society and how all these structures relate to each other from the point of view of wellbeing, shifting patterns of control and the implications for social policy.