Accessing the community

In one of his many brilliant and powerful blog posts, Mark Neary writes “I wish they would drop this “accessing the community” stuff. Steven is the community. “Accessing” it means that he is on the outside of it, waiting to be given admittance. That reveals a strong attitude – “this is ours and you are not part of it unless we allow you to be””. [11]

A comment in response to Mark’s post reads, “my daughter doesn’t want to “access the community”. She likes going out, when she can choose where and when… She loves company, and chatting to people, but wants little to do with day centres or over-organised activities. The other night, she hid her shoes, because to her accessing the community sometimes means doing things that other people want her to do.”

The phrase ‘accessing the community’ shrieks difference.

We go out.

‘They’ access the community.

It suggests ‘the community’ is somewhere you go, not somewhere you’re already part of.

Somewhere you can ‘access’ as an ‘activity’ or an ‘outing’, depending on your schedule, when (and if) you’re ‘allowed’.

Somewhere you fit into. You’re fitted into.

Not somewhere you belong.

(Extracted from a longer article on Community. Click the link to read the whole thing.)

“where it appears to a local authority that an adult may have needs for care and support, the authority must assess (a) whether the adult does have needs for care and support, and (b) if the adult does, what those needs are.”
Care Act 2014 [1]

The Care Act guidance describes the assessment ‘process’ as “one of the most important elements of the care and support system”, and claims that the assessment “is one of the key interactions between a local authority and an individual, whether an adult needing care or a carer”. [2]

So if it’s such a fundamental part of our social care world, why does the term ‘assessment’ make me go hmmm?

Assessment: the gateway to care and support

The Care Act statutory guidance is clear that the assessment “should not just be seen as a gateway to care and support”. Language matters – and the ‘just’ in that sentence is key, because ultimately its presence confirms that the assessment is a gateway – the gateway – to care and support. And therein lies the first problem. However much the statutory guidance describes the assessment as an appropriate, proportionate, person-centred experience, it also states that “the outcome of the assessment is to provide a full picture of the individual’s needs so that a local authority can provide an appropriate response at the right time to meet the level of the person’s needs”.

As ‘assessors’ we identify, and provide, the ‘appropriate response’. We decide the ‘right time’. We fix the ‘level’. We determine the ‘needs’. And as such we hold the keys to the social care door. The power is well and truly in our hands.

The assessor and the assessed: the dynamics of the power imbalance

“Many people are put off by the idea of an assessment, but it’s not something you should worry about. A social care assessment is not a test you can pass or fail.” Money Advice Service [3]

If only that was true.

Any kind of an assessment is a test, and tests are generally nerve-wracking experiences, particularly when we know the outcome will have a significant impact on our lives. Tests have right and wrong answers. You can pass or fail. Our social care assessment is a test, and the result either opens or closes the door to support. And as such, the power imbalance between the assessor and the assessed is stark. In the world of social care, we call the shots and we control people’s futures. Sounds scary doesn’t it? And it is.

“Steven has been very anxious and destructive all week. It might be the stopping of the medication. It might be anxiety about the house move. It might be that he knows that assessments can turn his life upside down. It was probably all three. I find the pre assessment anxiety unbearable.” Mark Neary [4]

To assess is to judge

The dictionary definition of assessment is “a consideration of someone or something and a judgment about them”.[5] To assess is to judge. As assessors we judge needs, risks, eligibility, capacity, best interests and finances, and the people we assess await our verdict as passive recipients. And regardless of our Care Act duties, we’re quick to walk away if we judge that people’s needs aren’t ‘eligible’, or if their eligible needs are met by family or friends, or if they can fund their own support.

Our decisions are influenced by thresholds and checklists and calculators – not by our principles or our values or our hearts. And as such we’ve detached ourselves sufficiently to think that we have the right to assess and judge people against pre-determined criteria and rules, while we get on with pursuing our own ambitions, building (and breaking) our own relationships, taking our own risks, making our own unwise decisions, living our own lives.

The assessment form: set questions and tick-boxes

“I am struck by the fact that there is no discussion, no talk of what could be changed. There is just the recording of facts, the processing of problems. It’s a tetchy interview, not a conversation”. Hilary Cottam [6]

When our assessment is based on set questions from a generic form, we’re setting the agenda for, and limiting the scope of, our conversations. If we ask questions about personal care needs (managing and maintaining nutrition, personal hygiene, toilet needs etc), we get answers about personal care needs.

Despite the Care Act guidance suggesting that the assessment should be a “critical intervention in its own right”, in reality our assessments are often rushed and usually take place in response to a crisis. As a result, the assessor gleans a ‘snap-shot’ of the person’s life when they’re at their most vulnerable, and all too readily reaches for the standard suite of service solutions to fix the problems they’ve defined. By limiting the scope of conversations and fitting people into the corresponding boxes, we remain in ‘easy to fix’ territory, where our standard home care or residential solutions can be quickly prescribed, or our doors can be closed if not quite enough boxes are ticked.

Assessing needs

“we lose the person in the very process designed to find them.” Liz Sargeant [7]

Our social care assessment is an assessment of need. We focus on what people struggle with and can’t achieve. We see problems, not people. We’re so caught up in screening and assessing and labelling and processing that we believe if we’ve met basic safely and survival needs we’ve done our job and we can move on to the next ‘case’ on our waiting list. But in focusing just on needs (and usually just on basic, functional, personal care needs) we fail to see the bigger picture and fail to really listen to or understand the person and those close to them: those who know the most about what they need the most.

We also fail to talk about what really matters: to have conversations about pursuing hobbies, finding work, developing friendships, building relationships, falling in love, living life. These conversations require a significant amount more time. Time to establish the trust required for the person to tell their story. Time to listen. Time to understand what’s happened to make them who they are now, and what needs to happen to enable them to be who they want to be. Time to explore how we can be most useful. Time to stick around and see the difference. And the reality is that in our current social care system, time is scarce.

But it’s not just time that’s the issue. These conversations also require us to be interested in people and their lives, not just their problems, and increasingly it seems that we’ve just lost interest.

The assessment process

“And after years of these assessments, I know that the final outcome will bear no relation to our reality. The social worker is great, so this is no reflection on her. It’s the knowledge that, (a) it’s a form filling exercise and the form is astonishingly narrow in its reach, and (b), whatever is written is completely at the mercy of Panel. That anonymous bunch of people for whom the £ is king.” Mark Neary [8]

At the end of the day the assessment is just that: a process. A “document and a stage in the IT system that is needed to unlock other stages”. [9] A cog in the social care machine.

The assessment process is our process. The assessment form is our form. It’s completion and approval allows us to progress to the next stage, but it holds little value to the people and their families who are desperate for us to put down our pens, look up from our checklists, listen to what really matters to them and act on what we hear.

All too often the assessment is recorded in great detail for a decision by a manager far removed from the person and their life. And even then, who actually reads the reams of detail poured into the boxes on the form? Maybe the panel – where the assessor has to justify their decision and the associated cost. Maybe the senior manager, conjuring up a response to a complaint. Maybe the judge unpicking events. Maybe the coroner investigating a death. When things go wrong, the assessment is scrutinised, and the assessor in turn becomes the assessed, judged from afar and awaiting a verdict of their own.

Replacing assessments with conversations

I’ll admit it, I’m impatient. I’ve got a short attention span when it comes to endless discussions and deliberations about whether or not we can make a change. I’m the one pushing to ‘just get on with it’, and have a go – after all, what could be worse than the bureaucratic, dehumanising tangle of our existing social care system? But I’ve come to realise that to get from here to there – broken old world to shiny new world – requires small steps, not one giant leap. Once such step is the shift from assessments to conversations.

The theory is good. An assessment is prescriptive and narrow in its reach, whereas a conversation is open-ended. A conversation can be led by the person – with support, where necessary, from their family, friends or an independent advocate. “It can help people to explore their own aspirations, the things they’re good at, the experiences they’ve had, the people they care about and what matters to them, as well as their support needs.” [10] It can be written up on a record with free-text space for reflections, rather than a form with set questions, categories to select and boxes to tick.

And yet, however open and honest these conversations are, they take place within a system full of assessments and tests. Yes we have conversations – but we still judge whether or not people are ‘vulnerable’ enough and their needs are significant enough to meet our entry criteria. We still assess risks. We still determine eligibility. Our assessment forms may have been replaced by conversation records, but we still write for panels, to justify our decisions and their associated costs. And if we decide that people have sufficient needs for us to proceed, we apply a means-test to their finances and determine how much they’ll pay.

I genuinely believe that conversations count, but conversations in social care are nothing more than assessments with a shiny new name if they aren’t accompanied by an associated shift in values and behaviours and relationships at all levels, including nationally. As long as we have a system based on entry criteria and eligibility thresholds and means-tests and risk assessments the power dynamic remains. We are still assessors. We are still judging people. Our function is still to process people through our system – if we permit them to enter at all. We still hold the keys to the social care door.

A better, brighter social care future
“So, let’s embrace our humanity and the humanity of the people we serve… That’s our role. Let’s stop wasting time spending days in the office typing up pages and pages of assessment forms and case notes which no one will read.”

Elaine James [11]
Assessments don’t exist in our better, brighter social care future. There is no place for tests. Instead we build relationships of trust where we recognise and respect people as experts in their own lives. We listen to what they, and those who know them best, say about the support they know they need to get on with living the life they want to lead. We shift the power, so instead of us judging people, we let people judge how we can be most useful – the barriers we can help to remove, the rights we can uphold, the connections we can make, the doors we can open, the opportunities we can bring their way. We respond to people’s stories and their hopes for the future, rather than expecting people to respond to the questions on our forms about what’s wrong.

Without an assessment, we focus instead on the plan. A single plan for a good life well lived, owned by the person and developed in collaboration with a team of people who genuinely care about them. We’re in that team. We’re on their side. We’re by their side. And what matters most to us is what matters most to them.

Compassionate social care requires a compassionate system – right from the top and all the way down. A government that values people and families and communities, and finds a fair and sustainable funding solution for social care. Local authorities that listen to, and are guided by, the aspirations of all those who live within their jurisdiction. Social care departments that work with community groups and collaborate with health and housing colleagues (rather than fighting about how needs are defined and which organisation should step up to meet them). Managers who trust and support their staff. Social care workers who have the time and the motivation to get to know people in their families and their communities, and work out together how things could be better.

So let’s revisit the Care Act, and shift our attention away from the sections on assessing needs and determining eligibility, and back to the start – to the fundamental principle of promoting wellbeing. Let’s reclaim our purpose as social workers of promoting social change and development, social cohesion, and the empowerment and liberation of people [12]. Let’s liberate people from the dehumanising constraints and judgements of the assessment process, and liberate ourselves too. Rather than setting the tests and asking all the questions, let’s focus on the answers, and let’s be part of the solution.

Words that blame: ‘Bed blockers’.

Such a hideous, dehumanising term applied to people who are ‘medically optimised’ and no longer meet the ‘criteria to reside’ but can’t be discharged from hospital for any number of reasons – usually nothing to do with the needs and wishes of the person, and everything to do with failures in communication and coordination in the wider ‘system’.

This is the language of widgets and processes and targets and flow, not of compassion and humanity.

Care.

We use the term all the time.

Care is described in a plan and delivered in a package.

Care has a start date and an end date. It comes in episodes. Time frames. Short-term. Temporary. Intermediate. Respite. Long-term. End-of-life.

Care has a cost. A fee. An invoice. A payment date.

Care has records and logs and notes and charts. Risk assessments. Rotas. Timesheets.

Care wears a uniform.

Care is a task. It’s done to, and for.

Care is a setting. Somewhere to ‘place’ ‘the vulnerable’.

Care is a service. A system. A sector.

Care is for ‘others’.

Care for others
Much of what makes me go hmmm about the term ‘care’ is encapsulated in the Department of Health and Social Care’s latest campaign to recruit more people to work in adult social care.

The campaign is called ‘Care for others. Make a difference’[1].

Let’s break that down.

‘Care for’ suggests ‘do to’. Look after. Protect. There’s no sense of any kind of reciprocity, or relationship, or choice. Care is a paternalistic one-way street. It’s provided and received.

‘Care for others’ perpetuates the ‘us and them’ narrative. The carers, and the anonymous, homogenous ‘cared for’. The helpless who must be helped. ‘Service users’. ‘Residents’. “Inmates’[2]. The separate, different others. Not even acknowledged as people by our Secretary of State for Health and Social Care, just “the most vulnerable in our society”. “Our most vulnerable”[3].

Why not ‘care for people’? Too real? Too human?

Why not ‘care about people’?

And ‘make a difference’? Yes – there’s huge capacity for people working in social care to make a difference, but what about our role in offering and enabling the right environments and connections and support for all of us to get on with living our own unique lives, nurturing our own relationships and making our own difference?

Care as a ‘setting’
Our practice guidance and public information is full of references to people’s “own home or other care settings”[4]. The phrase ‘own home or’ a care home/residential setting/care setting is used repeatedly in Government guidance, NICE guidelines, Care Quality Commission reports, SCIE resources and public information and advice from local authorities and voluntary sector organisations. These ‘other care settings’ are described as alternatives to people’s ‘own homes’. They’re beds. Units. Schemes. Facilities. Accommodation. Places – placements – for care, not for living. Not home.

Different, separate, other settings, for the different, separate others. Hidden away. A different world.

The care sector
The press release promoting the recruitment campaign references the ‘CARE’ brand, “which symbolises the entire care profession” and “aims to raise the profile of the care sector”. It also identifies key topics for training “on how to maintain good care in the midst of the coronavirus crisis” – one of which is “supporting care at home”. Not because it’s the right thing to do for people. Not because it’s the safest option mid pandemic. Nope, it’s “to reduce pressure on the NHS”.

A brand is undoubtedly low down on the list of priorities for people labelled ‘low-skilled’, working in minimum wage jobs, with zero hours contracts and – right now – struggling to secure adequate protective equipment and tests to stay safe, and woefully over represented in statistics about COVID-19 deaths [5].

And in reality, this brand does not symbolise care in its entirety. It describes a sector in the shadows, the ‘and’ to health, the Cinderella service to the NHS. But it doesn’t reflect the families and friends and neighbours and community groups and voluntary organisations and micro-enterprises who care. Like health is much broader than the NHS, care is not, and cannot be, confined to a ‘sector’.

The narrative of ‘care’
Ultimately care is about people. Us. All of us. But the narrative of care is about them. Others. ‘The vulnerable’ who need to be cared for, in another setting. In another sector. A bureaucratic system, where decisions are made for and about ‘service users’, not by or with people.

The focus on care invariably concentrates on ‘personal care’: managing and maintaining nutrition, personal hygiene, toileting needs – and too often this becomes the focus of care plans. The life and limb care to ensure survival.

It also perpetuates the medical model – focusing on what’s wrong, grouping and labelling people by diagnosis and condition, prescribing solutions and looking after people in institutions. A narrative that convinces many that the answer to the ‘care crisis’ lies in further integration with health.

Prior to COVID-19, social care had little profile, largely absent from public consciousness and political discourse. In the early days and weeks of the UK Government’s response to the pandemic, the sector’s subservient relationship with health was apparent as care homes bore the brunt of the ‘protect the NHS’ message. And as the current crisis evolves, the true cost of those early political decisions is becoming increasingly, and heartbreakingly, apparent to those of us working in or closely with care homes, or who have relatives or friends living, and dying, in them.

Putting social back in to care
The Government’s badge says ‘CARE’. But what happened to the social element? OK so yes, it’s often absent from care plans which focus on personal care at the expense of personal relationships. And it’s increasingly absent from social work teams, as we hot-desk and work from home. But surely one of the glaring messages from the last few months is that we need each other – our families and friends and neighbours and colleagues. So many of us have experienced a loss of connection. An element of isolation. A feeling of loneliness. The absence of touch. The lack of hugs. We’re all hugely aware that there’s so much more to life than meeting our basic needs for food and drink, clothing, shelter and safety. We need to be part of a bigger whole. We need to belong. We need to love, and to be loved in return.

And during the pandemic, alongside the horrifying narrative of institutional care, there’s another narrative of social care. Of an amazing collective, collaborative, community response which demonstrates just how much we do care about one another.

Social care is so much bigger than the Government’s ‘CARE’ brand. As Mark Harvey wrote recently, “social care happens throughout society and communities, in living rooms, on street corners, at work, in colleges and even in the pubs and night clubs across the land.”[6]

We are about one another
In our exhaustive, exhausted use of the term, how often do we actually stop to consider care in terms of caring about, not for?

As we tentatively begin to look towards the future, we need to flip the narrative. Shift from “We care for vulnerable people” to “We care about one another”, or even “We are about one another”[6].

We need to reclaim the term ‘care’ – grasp it back from the realm of commissioners and providers and institutions, own it as an emotion and an action in our homes and our streets and our neighbourhoods – and make sure it has the term ‘social’ right up there with it.

Care is community.

Care is connection.

Care is collaboration.

Care is choice.

Care is listening, and learning.

Care is families and friendships and neighbours and colleagues.

Care is random smiles from strangers on the street.

Care is laughter and kindness and tears and messy and complicated and heart-breaking and joyous.

Care is about all of us, not them and us.

We need care.

We do care.

We are care.

[For footnotes/references please see the original article via the link]

Words that blame: Carer breakdown

Our statutory guidance requires that we offer an assessment “where it appears that a carer may have needs for support (whether currently or in the future)”. That our assessment establishes “not only the carer’s needs for support, but also the sustainability of the caring role itself”. That we determine “whether the carer is, and will continue to be, able and willing to care for the adult needing care” [2].

Yet when someone is no longer able or willing to continue in their caring role, we’re quick to apply the ‘breakdown’ label.

Indeed, the language relating to unpaid carers is dripping with blame. We’re either blaming carers for ‘struggling to cope’ and ‘breaking down’ or blaming the person they care for and about by using phrases like ‘the burden of caring’ and ‘respite’ – which means ‘a pause or rest from something difficult or unpleasant’ [3].

‘Carer breakdown’ (carers aren’t cars!), or carers who are exhausted worried isolated ignored lonely confused angry grieving frustrated abandoned desperate scared just trying to do their best for the people they love – or don’t love – and facing so many too many hoops to jump through, forms to fill in, boxes to tick, phone calls to make, battles to fight.

‘Carer breakdown’, or carers we’ve failed to identify and listen to and support?

In the statutory social care world, we talk about cases all the time. We screen, allocate, assess, manage, transfer and close cases. We carry caseloads. We have active cases and passive cases. We deal with complex/challenging/difficult cases. We record case notes and maintain case records in our case management systems. We hold case conferences and carry out serious case reviews. We learn from case studies and case examples and case file audits and case law.

In the real world, beyond the jargon of social care, if you talk about a case, you’re probably packing for a holiday. Maybe you’re reading a crime novel where there’s a case to be investigated or a mystery to be solved. Or watching the news where there are prime suspects in a case. You might even be defending your case in an argument or a courtroom.

The term case has multiple meanings, but many of them relate either to baggage, or to something we investigate, judge or learn from. When we talk about cases in social care, we’re usually either talking about people with cases (problems to be dealt with) or people as cases (i.e. baggage). In this blog I want to explore the similarities between the social care uses of the term case and its real-world definitions, and look towards a better, brighter future where instead of ‘dealing with cases’, we listen to and work with people.

(Before I get started with ‘case’, the phrase ‘dealing with’ also really makes me go hmmm! A deal suggests an agreement – that two parties agree to something with mutual benefit. We are all in awe of the Wigan Deal[1], perhaps for that very reason – it’s a simple articulation of a win: win scenario. The gesture of shaking hands seals the deal, and indeed the Wigan Deal logo includes a hand shake. But to me the phrase ‘dealing with’ has negative connotations far removed from a shared understanding and mutual benefit. Instead of hands shaking, I think it suggests the hands of power brushing together, having dealt with a person or a problem, and swiftly moving on. It indicates process, through-put and the completion of a task. It symbolises a paternalistic, controlling, transactional approach far removed from the collaborative, relationships-based philosophy so impressively demonstrated in Wigan.[2]

Problems to be dealt with: people with cases
In social care, people have cases, not lives. In our world of referrals and handoffs, we have become detectives investigating these cases. Case records and cases notes are our clues. We piece together scraps of information from our case management systems about the cases we’ve been allocated, to find out who said and did what to who, and when (and maybe – though not always – why). Decisions about futures are taken by managers who judge and authorise based on words on their screens about the past: standard phrases, common terms, boxes ticked, job done.

And all too often we label people’s cases as ‘complex’, or ‘challenging’ or ‘difficult’ i.e. they don’t fit neatly into our standard pathways or services so we’re not sure how to respond.

We like our case studies too. The Care Act statutory guidance contains over thirty scenarios faced by individuals including Deirdre, Brian, Jacinta, Kate, Mr A, Miss Y, Mrs D, Ms P, ‘an older man’, ‘two brothers’ and ‘a resident’. Most of these case studies start with a diagnosis or a ‘condition’ or a label: ‘Beryl was diagnosed with stomach cancer’; ‘Sally is 40 and has a physical disability’; ‘Lynette who has learning disabilities’; ‘Mrs Pascal, who is frail and elderly’; ‘Adbul is a deafblind man’; ‘Isabelle is 15 years old with complex needs’. These two ‘cases’ particularly stand out: ‘Lucille develops a need for a care home placement…’ (a ‘need’ for a care home ‘placement’??) and ‘At the age of 72 years, Ms W, although registered disabled, was an active member in her community…’ (hideous).

Case studies tell us real and imaginary stories to illustrate a principle or explain an approach: evidence to inform our practice. But the irony is that while the professional literature overflows with case studies, all too often we’re failing to listen and respond to the genuine stories of the real people we’re working with every day.

Suitcases, labels, conveyor belts and journeys: people as cases
Local authority social care departments have much in common with airports. Both have queues and gates and labels. There is screening and scanning. Interactions are fleeting and increasingly automated. The clock is always ticking. There is always a ‘journey’.

We have become the baggage handlers. People are our cases.

Our equivalent to the check-in desk is our ‘front-door’, where we ask formulaic questions about cases. If the cases clear this initial stage, we apply numbers and labels to describe them and where they’re going next. The next stage usually involves further screening where, like the staff checking hand luggage at the departure gate, we line cases up and assess them when we’re ready – inducing anxiety in families and friends as we decide whether they meet our entry criteria. Then – if we let them in – we swallow them up into our system. As with the numerous carousels and conveyor belts in airports, there are multiple pathways and processes for us to choose and, as with suitcases, the destination is usually assigned from the start (like Lucille’s ‘need’ for a care home ‘placement’). And like suitcases, social care cases may be mishandled or damaged as they pass through our hands, or sent to the wrong place, or lost completely in our system.

Much of the language we use in relation to cases reflects this processing of people. We ‘screen’ cases (often multiple times). We ‘prioritise’ and ‘allocate’ cases from desktops or work trays or spreadsheets. We ‘handle’ cases and ‘carry’ caseloads. We talk of ‘active’ or ‘live’ cases to indicate people we’re currently working with, and ‘passive’ cases to describe those acquiescent people at the bottom of our review lists. We ‘refer’ and ‘place’ and ‘transfer’ cases and have ‘case transfer protocols’ to describe when we can shift responsibility to other teams or organisations. We ‘manage’ cases – helped (and often hindered) by our ‘case management systems’, with their embedded workflows and process maps to illustrate how far our cases have progressed on their ‘journey’.

And we are actively recruiting social workers as baggage handlers to process people through our system. A quick scan of current job adverts reveals we’re looking for social workers to:

“carry a caseload”
“manage a caseload”
“assess, monitor, evaluate and review cases”
“investigate referred cases”
“carry out effective work in the most complex and challenging cases”
“manage and monitor a workload of complex, specialist and generic cases”.
This, from a recent recruitment campaign for children’s social workers, sums it up:

“Are you a social worker looking to move into screening and referring cases?”

Are you?

So why do we do it?
Of all the words that make me go hmmm (and there are lots!), case is up there at the top of the list. Describing people’s lives as cases is bad enough – but people as cases? In no way would I ever defend the use of the terms client, customer or service user in social care – but at least they imply a human (just about). A case is an inanimate object. Talk of ‘my case’, ‘our cases’, ‘your case’ and not only are you assuming ownership, but the person you’re possessing has become not quite human in your eyes. Something to do things to, rather than someone who just needs a bit, or a lot, of help and support to get on with living their life. And the danger of this dehumanising, othering attitude – conscious or unconscious as it may be – is that objects don’t have wishes and feelings and hopes and rights.

So why do we do it? Why do we describe people and their lives as cases? Maybe it’s to do with professional status: doctors and lawyers have cases so why shouldn’t we? Maybe it makes it easier to manage our ‘workload’ if we label people’s lives as cases that we can solve and write about and learn from and close? Maybe it makes it easier to justify ‘screening’ and ‘handling’ and ‘carrying’ and ‘placing’ people if we call them cases and distance ourselves sufficiently to pretend that it’s ok to pick them up and move them like baggage around our system?

A better, brighter social care future
Despite what the job adverts say, those of us who work in social care don’t join the workforce to process cases through a system. We do so because we believe in human rights, social justice, families, friendships, love. We believe in people. We want to make a difference. We care.

Instead of embracing our values and our passion and our initiative, our current system sucks us in to its structures and processes and hierarchies and rules, and spits out robots reliant on forms and procedures to complete tasks and achieve targets. Our bureaucracies have dehumanised us, and in turn we have dehumanised the individuals and their families we’re here to support.

There is a better way. In our brighter social care future we talk about, and work with, people, not cases. We’re no longer detectives piecing together clues from notes and records on our system, investigating and solving complex cases. We’ve rejected our role as baggage handlers attaching labels and carrying cases through our gates and on and off our conveyor belts. Our practice is no longer prescribed in manuals and procedures or informed by fictional case studies.

Our new world revolves around building and maintaining connections and relationships and communities, with people rather than processes at its core. Instead of dealing with cases, we work with people. We’ve dropped our jargon and our labels, and regained our humanity and our humility. We listen hard, understand what matters and focus on finding ways to be useful. We’re kind. We’re people, with our own experience and skills and values and ambitions, helping other people with their own experience and skills and values and ambitions to get on with living the life they choose.

Forget those anonymous case studies. We’re telling a different story, and it’s a story we’re proud to tell.

[For references/footnotes please see the original article]

Words that blame: Challenging behaviour

The ‘challenging behaviour’ label is, well – challenging.

The phrase labels the person’s behaviour as problematic, as something that must be controlled or managed so the person behaves more ‘appropriately’. But who defines what is ‘appropriate’?

“Somebody has decided that my behaviour, or the person’s behaviour, needs to be modified. Needs to be improved, mainstreamed, made less extreme. So, there’s a power differential right there, isn’t there? And the person’s agency to behave in the ways that are most comfortable for them is taken away”. Alexis Quinn [4]

‘Problems’ require solutions, and too often having identified ‘challenging behaviour’, our response is to increase medication or restriction or restraint. Separation. Seclusion. The classic medical model of treating and fixing rather than understanding what’s happened to – and what’s happening around – the person.

All behaviour is a form of communication. If I suggest your behaviour is ‘challenging’, I’m either failing to understand – or deliberately ignoring – what you’re communicating, and why. Maybe you’re scared? Excited? Frustrated? In pain? Angry? Bored? Lonely? Hungry? Sad? Maybe something has happened or there’s something going on around you that’s causing you to lash out or to retreat? Maybe it’s my behaviour that’s challenging you?

Even when we do acknowledge the communication element of a person’s behaviour, we still manage to twist this to blame the person, whose ‘challenging behaviour’ is attributed to their difficulty in communicating what they’d like or need – not our failure to meet their communication needs, and in turn their human rights, and our legal duties.

And no, ‘behaviour that challenges’ or ‘behaviours of concern’ aren’t any better, because they’re still loading blame onto the person. And while referring to ‘distressed behaviour’ (hopefully) shifts the focus to understanding the reason for the distress and (hopefully) prompts some wider changes to relieve it, it’s still a label. And anyway, maybe the person isn’t communicating distress at all.

“I can remember meeting an Afro-Caribbean man having treatment on a mental health ward. He told me that one day he was starting to feel better, so he started singing loudly in the corridor. For him this was an expression of joy. But in reserved Britain, staff interpreted this as unusual behaviour and upped his medication.” Claudia Hammond [5]

[4] The problem with behaviour support, Alexis Quinn, Rightful Lives, You Tube, 14 April 2022

[5] D for diagnosis: Ever changing labels, Claudia Hammond, BBC Radio 4, Wed 22 Jan 2020

Co-production is the word of the moment in local authorities, largely because the Care Quality Commission (CQC) assessment framework includes a commitment that ‘coproduction is embedded throughout the local authority’s work’[1].

The assessment framework is designed to help CQC assess how well local authorities are performing against their duties under the Care Act 2014. The Care Act 2014. Legislation that has been in place for almost a decade, based on principles of self-directed support and ‘nothing about us without us’ around for much longer. The Care Act statutory guidance states explicitly that “local authorities should ensure that individuals are not seen as passive recipients of support services, but are able to design care and support based around achievement of their goals”, that “local authorities should actively promote participation in providing interventions that are co-produced with individuals, families, friends, carers and the community”, and that “strengths-based approaches might include co-production of services with people who are receiving care and support to foster mutual support networks.”[2]

You may be surprised that the word ‘co-production’ isn’t on my long list of ‘hmmm’ words. The dictionary definition of the prefix ‘co-’ is “with : together : jointly”, and so “co- is used to form verbs or nouns that refer to people sharing things or doing things together”.[3][4] And ‘production’ means to make or create something. To cause something to happen.[5] So co-production = creating something together. Working alongside. Doing with.

But once we explore the language associated with co-production, it quickly becomes clear that while the meaning of the term couldn’t be more explicit, we’ve largely managed to miss the point in our interpretation.

Alex Fox recently wrote that “strengths-based working and coproduction are inextricably linked.”[6] Both terms refer to working alongside people, with a focus on what matters and a shared role in producing something valuable and valued. Shared power and shared decisions. Mutual trust and respect. A shift from providers and passive consumers – from saviors and ‘the saved’ – to reciprocity and interdependence. To seeing all people as equal human beings with ideas and talents and knowledge and passion and dreams. To creativity and possibility. Connections and relationships.

Working with, not doing to.

Nothing about us, without us.

But over twenty years ago, Edgar Cahn identified that “words like “strength-based” and “asset-based” had been turned into a mantra by social welfare professionals… an obligatory incantation recited to prove that one was in the know.” [7]

“Use of buzzwords certified one as morally pure and appropriately avant-garde. Behind the curtain, though, business was proceeding as usual: preserving one’s turf, creating dependencies, and protecting a livelihood earned by catering to people’s needs, deficiencies and problems.”

Edgar Cahn [8]
In my blog about the term ‘strengths-based’ I wrote that “we throw the term strengths-based around, drop it in to our narrative too easily to put a new shine on our practice, without realising very many of those key elements, without changing very much behind the scenes.”[9]

The words associated with ‘strengths-based’ expose our (mis)interpretation of the approach and reveal the same old power dynamics and divisions that exist ‘behind the ‘curtain’. And if we unpick the language relating to ‘co-production’, we find much the same.

Let me explain what I mean…

Professionals and service users
There are a lot of definitions of co-production out there, and many of them refer to ‘professionals and service users’. ‘Service providers and users’. ‘Professionals and people using services’.

The term ‘professionals’ suggests status and authority and expertise.

The term ‘providers’ refers to delivery, and – well, ‘production’

And the terms ‘users’ and ‘using’ imply an absence of power and agency. Passive receipt. And the inevitable association with exploitation and drugs.

‘Professional’ offers people working in organisations an identity, while ‘users’ remain an anonymous, dehumanised, ‘other’ group.

The powerful and the powerless.

So, we’ve already failed. Instead of working together as equals, our basic definitions imply and perpetuate difference and inequality. Us and them. Instead of a shared role as producers, we’ve built the separation of providers and consumers into our definitions of a term that means the opposite.

These definitions also reinforce stereotypes and stigma by implying that people who draw on care and support aren’t professionals, and that professionals aren’t people who draw on care and support.

And what if you can’t use a service? If you’re not allowed in? If you’re not eligible? Who is ‘engaging’ with you then?

Improving services
The purpose of co-production is invariably described in terms of better services, not better lives. This interpretation confines ideas of co-production – and indeed of social care – to the realm of serviceland and ‘the market’, where ‘care’ is a task delivered in a package, or a destination with no return. The realm of ‘providers’ and ‘users’. Assessments and eligibility criteria. Transactions and institutions.

Of course, there is plenty of room for improvement in services, but this narrow lens ignores the vital, every-day role of people and families and communities in caring for and about each other.

Most care and support is already ‘co-produced’ in our homes and our streets and our neighbourhoods.

People looking out for one another.

Nurturing. Tending. Loaning. Mending.

Webs of support and relationships in local communities.

So, if we’re serious about building better lives and stronger communities, our thinking about co-production must start with people and relationships, not services and institutions. We must recognise and value the love and compassion and energy and potential in individuals and families and communities, and work out together how we can be most useful – as public servants, not as masters – in support of local people and local places.

Engagement
“Engaging customers in coproduction.”

“Engaging people with services.”

“Engaging with users.”

‘Engagement is often described as a ‘stepping stone’ to co-production, a rung on the ladder. But if we’re thinking in terms of ‘engaging’ people, we’re stepping off on the wrong foot.

The dictionary definition of ‘engagement’ is “an arrangement to meet or be present at a specified time and place”[10].

On other words, when can you – over there in your ‘marginalised group’ or your ‘vulnerable population’ – show up (at a time and place convenient for us) to help us?

Not how can we step in to be most effective? How can we step up to ensure sufficient connections and relationships and resources are in place for you to live the life you choose to lead? How can we step back and get out of the way?

‘Engagement’ is something we do to people, at a fixed time, for a fixed purpose. There’s no sense of an evolving, organic, long-term relationship, where trust is built and where genuine, human connections are made.

And if you choose not to show up when we tell you to, we’re quick to slap on a ‘refuses to engage’ label and move on.

There’s also the association of the term ‘engagement’ with battles – “a hostile encounter between military forces”[11] – which may be apt given the language of war that threads through our practice (frontline, duty, officers…) and the exhausting reality of fighting for support – but is obviously not the intention.

Empowerment
“We want to empower our customers…”

“We empower people with lived experience to use their own voice”

“We want to empower our service users to work as equal partners with us.”

Argh.

We – the ‘professionals’ – give you – the ‘users’ – power. If we feel like it. Maybe. Sometimes. Or maybe not.

We see power as ours to give away.

And, by default, to take away.

And you are ‘ours’. We own you. We control you. We’re in charge.

“Empowerment: An illusory gift from professional to a not quite human.”

Mark Neary[12]
We absolutely need to talk about power. We need to be aware of – and honest about – the power we hold in different roles and remove the obstacles to power being shared (including by paying attention to the way our policies and our practice and our language divide and exclude). But by talking about ‘empowering people’ and ‘giving power to people’ we’re further embedding the very power dynamic we are (in theory) aiming to remove.

Voice
The way we talk about ‘voice’ really makes me go hmmm.

There are the dehumanising references to ‘voice’ detached from any sense of a person. “We will actively recruit or involve diverse voices in a meaningful way.” “Advocating for a lived experience voice to be involved…”

There’s the noble act of ‘giving people a voice’. “We will be running events to give disabled people a voice.” “Giving voice to those who often aren’t heard or often don’t engage.”

There’s the generous act of people speaking on behalf of a collective group of ‘others’. “The voice of lived experience”, and – squirm – “the voice of the voiceless”.

And there’s the super kind ‘lifting up the voice of’. “Amplifying the voice of service users”. “We’re strengthening the voice of people who use services.”

Like engaging and empowering, the way we talk about ‘voice’ reveals and perpetuates deep divisions, a sense of superiority and a paternalistic approach.

The focus on voice implies meaningful contributions can only be made by people who can communicate verbally, and also retains the focus on ‘talking’ rather than actually producing something together.

You said we did
“We will empower our residents, listen to their voices and act on what they say.”

You told us some things and we went away and did stuff without you.

Erm – so much for co-production.

Managing expectations
“Managing expectations is crucial.”

“We need to be realistic about what we can offer.”

“We can’t promise the world because we can’t do everything.”

“We need to be careful not to promise too much.”

Ooof. This is not co-production. Where is the trust? Where is the transparency? Where is the connection? Where is the shared vision? ‘Managing expectations’ is a term I’d happily bin – and it certainly has no place anywhere near co-production.

Also – ‘what we can offer’… ‘we can’t do everything’?? Point entirely missed.

Co-production leads, strategies, frameworks, policies etc…
We’re approaching co-production in the way we approach strengths-based working. Recruiting a lead, writing a strategy, sending workers off on a half-day training course and expecting the world to change – without making any effort to change our world.

We’re viewing co-production as an add on. A nice to have, over there, located in a meeting room, led by someone else, while we keep doing ‘the day job’.

But co-production isn’t extra work, it is the work. It’s not something to be confined to the remit of a lead or a board, or constrained by a strategy or a framework or a policy. It’s an ethos and a value-base that should run through everything we do.

It’s “a different imagining of the world we know”.[13]

The core elements of co-production are the very same elements of a better, brighter social care future.

Seeing people with gifts and potential, not problems and needs. As resourceful human beings – not ‘non-human’ resources.

Recognising and appreciating ‘care’ as caring about and supporting each other, not ‘looking after our most vulnerable’. Nurturing relationships and connections, not delivering services.

Promoting reciprocity so people have a chance to ‘give’ as well as ‘get’ support. So people feel needed and valued, not needy and devalued.

And building and sustaining communities and better lives, not institutions and better services.

As I said at the start of this blog, the term ‘co-production’ doesn’t make me go hmmm, but – like the term ‘strengths-based’ – it is too widely misinterpreted and too easily misused.

I think we’re spending too much time talking about the future of co-production, and not enough time co-producing the future.

So, I’m tempted to suggest that we drop both these ‘buzzwords’ from our vocabulary and, as I proposed at the end of my ‘strengths-based’ blog, we focus instead on making sure that one simple question underpins everything we do.

‘What does a good life look like to you and your family, and how can we work together to achieve it’?

“Community is more than a simple matter of geography. It is about how people connect with each other, the power of relationships and reciprocity, whether based on common interests, friendship, or the giving and receiving of support. These networks of informal ties are what make up the many and diverse communities each of us benefit from.”

Paul Burstow [1]

Back in 1946, Sir William Beveridge – architect of the Welfare State – “voiced his concern that he had both missed and limited the power of the citizen and of communities… he was increasingly aware that communities rather than distant, cold and hierarchical institutions, are often much better at identifying needs and designing solutions. [But] Beveridge had designed people and their relationships out of the welfare state. He realised too late that he had made a mistake.” [2]

Despite Beveridge’s acknowledgment of the importance and power of communities, institutions continue to dominate our approach. Rather than recognising the strengths and opportunities in communities, too often neighbourhoods and networks are written off as part of the problem (think ‘sink estates’, ‘no go areas’, ‘hard to reach’ communities), and services and ‘settings’ remain our default solution.

Instead of ensuring people can participate and can draw on ‘community-based support’, we’ve created a system that isolates and removes people from communities in the name of ‘care’.

However, more and more of us are now accepting what Beveridge realised all those years ago. We know that if we’re going to ensure everyone can live the life they choose to lead, we have to dismantle our institutional approaches and focus instead on working in and alongside communities, sustaining human networks of support.

But this dismantling takes much more than closing large establishments. As Alex Fox observes, “throughout these changes and improvement programmes, and their ‘task and finish groups’, the asylum remains unseen: its assumptions, its relationships, its power dynamics and its abhorrence of love.” [3]

Paying attention to how we communicate about ‘community’ helps to shine a light on these ingrained attitudes. So, let’s take a look at the current narrative, explore what it exposes, and consider where we need to focus our attention if we’re really going to put communities at the heart of social care.

Institutions
“If you can’t get up at 3am and microwave yourself a burrito, you’re living in an institution.”

Open Future Learning [4]

If we’re going to shift away from the dominance of institutions, first we need to be clear about what we mean by the term.

The Equality and Human Rights Commission defines an institution as “residential accommodation where:

residents are isolated from the broader community
residents live together with people other than those with whom they have chosen to live
residents do not have control over their day-to-day lives and over decisions that affect them, or
the interests of the organisation itself tend to take precedence over the residents’ individualised needs or wishes.” [5]
While we generally associate institutions with ‘care settings’, the isolation and lack of choice and control mentioned in this definition can be just as much a feature of life for people ‘living in the community’.

“Institutions are made as much of thoughts, beliefs and organisational practices as of bricks and mortar.”

Colin Goble [6]

As Neil Crowther writes, “we tend to think of institutions and institutionalisation as about being in a place. But institutionalisation is really about the dismantling of the self, through the dismantling of its scaffolding: not respecting or upholding routines and rituals, familiar people and things, one’s own bed, the clothes one wears, the food one eats, the places one can go, the television one watches or the music one listens to. This may be more likely in congregate care facilities, but it can also happen outside of them where risk averse policy and practice, or life and limb care pays no attention to personhood, identity and autonomy.” [7]

‘The community’
‘Community’ is like a magic word in serviceland.

Toby Lowe suggests the term “has a strange power to it. It conveys a sense of togetherness and positivity. It speaks both of solidarity and homeliness.” But he observes, “you will, almost never, hear people say what they mean by “community”.” [8]

Dictionaries define ‘community’ as “the people living in one particular area or people who are considered as a unit because of their common interests, social group, or nationality”. “A group of people who are similar in some way.” A “sense of having something in common.” [9][10]

Community is about people who share something. Indeed, the word derives from the Latin for common. A common geography, history, experience, culture, characteristic, identity, interest, profession…

There are numerous wonderfully diverse and eclectic communities. And yet we talk about ‘the community’, not communities. Singular. Homogeneous.

And in the same way we think of institutions in terms of buildings, we refer to ‘the community’ in terms of a place.

There’s no sense of people or relationships.

Of the feeling of community.

Of being welcome.

Of belonging.

Accessing the community
In one of his many brilliant and powerful blog posts, Mark Neary writes “I wish they would drop this “accessing the community” stuff. Steven is the community. “Accessing” it means that he is on the outside of it, waiting to be given admittance. That reveals a strong attitude – “this is ours and you are not part of it unless we allow you to be””. [11]

A comment in response to Mark’s post reads, “my daughter doesn’t want to “access the community”. She likes going out, when she can choose where and when… She loves company, and chatting to people, but wants little to do with day centres or over-organised activities. The other night, she hid her shoes, because to her accessing the community sometimes means doing things that other people want her to do.”

The phrase ‘accessing the community’ shrieks difference.

We go out.

‘They’ access the community.

It suggests ‘the community’ is somewhere you go, not somewhere you’re already part of.

Somewhere you can ‘access’ as an ‘activity’ or an ‘outing’, depending on your schedule, when (and if) you’re ‘allowed’.

Somewhere you fit into. You’re fitted into.

Not somewhere you belong.

Living in the community
“I hope Nigel will be so embedded in his community that there will always be people who’ll look out for him, love him and care for him after I’m no longer here. That’s what every parent wants.”

Baroness Sheila Hollins’ son Nigel, who has a learning disability, “lives independently in a flat near his family with support from a personal assistant” and “people see Nigel in the shops, cafe or train station. He has a life in the community.” She stresses that “returning people from inpatient units to communities “will never work until people understand it’s not about a building and a staff team, or rotas and procedures, but about putting somebody like Nigel at the centre of the plans”. Professionals should understand that what people need to live their life is to belong [in communities].” [12]

How many older people and disabled people ‘living in the community’ are really living, with genuine choice and control over their lives?

How many people ‘living in the community’ are really known, needed, and included in communities, experiencing a feeling of belonging, not just fitting in?

Community living skills
College courses for young autistic people and people with a learning disability are designed to “equip [learners] with the essential skills for living which will enable them to remain within their local community” and “take part in community life.” Care providers offer “services that help people develop their capacity to live in the community” and “enable them to gain the skills for living in the community”. ‘Reablement teams’ aim to “work with people to help them acquire or regain the skills and confidence to live successfully in the community”. And the Care Act guidance mentions helping people to “develop or regain the skills of independent living and active involvement in their local community.” [13]

All this suggests, once again, that some people are not already seen as part of communities, and will only become part of ‘the community’ if they complete the course or accept the service (which “can be accessed via a referral from the service user’s care coordinator” and “requires a risk assessment and a health and social care needs assessment”) and gain the skills to be allowed in.

So much for inclusion.

So much for human rights.

Prevention
The Care Act guidance states that “local approaches to prevention should be built on the resources of the local community”. That assessments should seek to understand how people’s “needs may be prevented, reduced or delayed by others within the community, rather than by more formal services”, and help “a person with lower needs to access support in their local community.” [14]

Despite the guidance emphasising that “prevention should be seen as an ongoing consideration”, there’s often a strong emphasis on prevention being something that happens ‘before’ social care, when people have ‘low-level’ or ‘ineligible’ needs. The way we talk about ‘community’ is similar. Angela Catley notes “the sense that social care is something (tasks?) that happens when ‘community’ ‘prevention’ ‘resilience’ 🤢& strong gatekeeping has failed. Rather than the support people get to live a full life… in their community, using their strengths etc😟” [15] And Alex Fox observes that “while ideas for prevention and early intervention are based on the belief that the boundaries can be redrawn, not erased, they themselves rest on familiar assumptions about the divide between community-based citizens and the subjects of service land, rather than removing that divide.” [16]

If we are going to remove this divide, we need to tell a different story.

A story that places social care at the heart of communities, and communities at the heart of social care.

That recognises community not just in terms of place, but also as the relationships between people. As participation and inclusion.

That appreciates we all have much to give, and so much more to gain.

And that articulates the role of local authorities – as Fredric Seebohm envisaged back in 1968 – as “[reaching] far beyond the discovery and rescue of social casualties, [to] enable the greatest possible number of individuals to act reciprocally, giving and receiving service for the wellbeing of the community”. [17]

As Mark Harvey suggests, “you wouldn’t be surprised if you found that paragraph in the Care Act now”.

Fredric Seebohm’s recommendation is echoed by Social Care Future’s articulation of social care as helping to “weave the web of relationships and support in our local communities that we can draw on to live our lives in the way that we want to, whatever our age or stage in life.”

This vision “recognises people who draw on social care being both givers and receivers of support to and from their community. It is about people caring about and supporting one another, rather than invoking ideas of ‘vulnerable people’ being ‘cared for’.” [18]

So, let’s stop talking about ‘the community’ as if it’s a place for us to signpost people to ‘before social care’, train people to have the skills to enter, and ‘allow’ people to ‘access’ from the confines of serviceland. And instead let’s talk about communities where we look out for one another, and each play our part in creating communities where everyone belongs.

“We want to be part of our communities, helped where we need it to connect to people and things that give our lives meaning and purpose – relationships, friends, family, work, leisure – and to share our gifts and talents. Social care must help remove barriers and offer assistance beyond traditional services to support such an ordinary community life.”

Social Care Future [19]

[For references/footnotes please see original article]

Words that blame: Complex

Complex cases. Complex individuals. Complex health conditions. Complex lives.

Real lives are complex. Messy. Rainbow coloured crayon scribbles on crinkled and torn pages. Stuff happens – or doesn’t. Too much. Not enough. Stops. Starts. Loops back. Dead ends. Creeping, miniscule shifts. Rapid, devastating changes. Balancing. Juggling. Waving. Falling. Drowning.

Real lives don’t fit the straight lines of our ‘system’, the black and white boxes on our forms. Our processes and pathways require a single label at the start. One ‘primary support reason’. One ‘service user group’. Go.

Too many labels = too many boxes ticked = too many pathways = too many professionals = too many conversations = too many options = too much time = not enough time = not enough options = ‘complex’.

And then often, ‘too complex’.

Of course, ‘complex needs’ is the classic. We’ve even built complexity into the term ‘complex needs’, as the multiple references in the Care Act statutory guidance illustrate. “Multiple and complex needs”. “Highly specialised and complex needs”. “Less complex needs”. “More complex needs”. “Particularly complex needs”. “Higher or more complex needs”. “Complex ongoing healthcare needs”. “The most complex needs”. “Multiple complex needs”. “Complex SEN and care needs”. “Complex health and care needs”. “Complex care needs”. [6]

The guidance contains several case studies, including ‘Isabelle’ who ‘is 15 years old with complex needs’ and Maureen who “is 72 years old.. with complex care needs’. We don’t find out what their needs are, just that they are ‘complex’.

Like ‘challenging’ and ‘vulnerable’, ‘complex’ is a meaningless term – used repeatedly to convey – well, what exactly? Yes, people’s lives may be complicated, but people’s basic needs are simple. Somewhere to call home and to belong. Someone to love, and to be loved in return. Something to do. Something to look forward to.

Stop using labels as excuses.

I suggested at work recently that ‘customers’ wasn’t the right word to use to describe people we support in adult social care. The colleagues I was with had a different view – extolling the virtues of the customer experience, customer service and the benefits of viewing colleagues as internal customers, and the conversation moved on. So, I thought it would be helpful to use this blog to gather my thoughts and be better prepared in future to explain exactly why referring to people as ‘customers’ in this context makes me go hmmm.

A person who buys goods or services from a shop or business
“People do not shop for human services and they certainly don’t shop for a life.”

Simon Duffy [1]
Think ‘customer’ and you automatically think transaction: buying and selling. Indeed, the dictionary definition of a customer is “a person who buys goods or services from a shop or business”[2]. Customers consume. Money changes hands. But fundamentally in social care our business is good lives, and good lives are built – not bought. You can’t purchase friendships, relationships, hobbies, jobs or love. You can’t buy purpose, ambition, happiness or hope.

Choice
The term customer implies choice. As customers we choose whether to buy and how much we’re prepared to pay. We browse a range of products, compare prices, get quotes, read reviews. We make snap decisions or take our time. If we’re not happy we cancel our order, take our purchase back, get a refund.

More often than not ‘customers’ of social care don’t choose to come to us in the first place, but they’ve exhausted all other options, tried everything else and social care is their last resort. Often their lives are falling apart. And once they approach us, we’re the ones who choose, through our assessment and our eligibility criteria, what type of support to offer and indeed whether we can even ‘help’ at all. We present a limited range of services as our solutions to ‘fix’ problems – our choice, imposed on our ‘customers’.

Custom
Customers give shops or business their custom. And custom can also refer to a personalised or individualised approach – custom-made or custom-built – the opportunity to design your own. But customised usually means exclusive and therefore expensive and unattainable. Most of the time as customers, although we have choice, we don’t have a say in design.

And often this is the case in social care too. For all our talk of ‘co-design’ and ‘co-production’, all too often ‘involvement and engagement’ is a tick-box exercise to validate a decision already taken or a plan already approved.

As well as its association with trade, custom also means a traditional way of doing things – “something you usually do”[3] – the way we usually respond to a particular person, or in a particular situation. The larger the organisation, the less responsive it is to individual circumstances and preferences. While the local cafe may be able to respond to requests for no onions or extra sauce, the high-street chain can’t alter the make-up of their pre-packed sandwiches.

So, while we may aspire to a personalised, co-designed approach to social care, the scale and bureaucracy of local authorities means that all too often, as with tailored clothing or made-to-measure furniture, such an approach remains out of reach for the majority.

Power
A customer has buying power. Customers usually have an equal position with the supplier in negotiations, and often a superior one because ultimately they can change their mind and walk away. ‘Customers’ of social care have no such power. All our noble talk of empowering people just reinforces the stark truth that we hold the power and see it as ours to give away.

Journeys and pathways
“Now that we are the customers and the culture is one of business, we have normalised the idea that for every problem there must be a service.”

Hilary Cottam [4]
Much time and effort is spent on understanding and ‘mapping’ the ‘customer journey’, but ultimately the pathway is our design, and the result is often a linear process diagram – from ‘front-door’ to assessment to eligibility determination to plan to approval to service. And despite this one-size-fits-all road map, the reality of our systems is a complex tangle of processes and referrals requiring procedures and factsheets and navigators and advocates to interpret it. And the reality of people’s lives is a complex tangle too. Most people’s lives don’t run in straight lines, and everybody’s life is different. Process maps only work in social care when we focus on problems, label people by need or diagnosis, fit them into the associated box and prescribe the corresponding service. Customers may go on journeys, but people live lives.

Customer service and the customer experience
Those who defend the use of the term customer do so in part because of its association with customer service – the ‘customer experience’. Good customer service is about good relationships. Responding quickly. Being friendly and helpful. Building trust and respect. Listening to feedback and continually learning, developing and improving.

In adult social care we may have some way to go in adopting these principles, but if we continue to believe that by referring to people as customers we’ll somehow magically assume those same values and behaviours, we might as well give up now.

Customer satisfaction: how was it for you?
Businesses use feedback forms and satisfaction surveys to understand customer experience. In adult social care we often do the same, with set questions and boxes to tick. We also determine satisfaction through endless performance measures showing response rates and ‘journey’ times. We hold customer forums, where we invite a token group of ‘service users’ to tell us what matters to them, often with an agenda shaped by what matters to us. We include compliments in newsletters and investigate complaints. But as with our social care assessments, we’re asking the wrong questions and as a result, although we may learn something about our ‘service’, we learn very little about the difference we’ve made to people’s lives. Maybe that’s deliberate? Because if we were having genuine, interested conversations with people, and if we knew we’d really helped, the results would be immediately obvious, and we wouldn’t have to rely on surveys and statistics at all.

Consumer rights
Consumer law protects our rights when we buy goods or services, and we can get help if we’re treated unfairly or if things go wrong. And of course, in social care we respect and protect human rights. In theory anyway. But the reality of our social care sorting office means that decisions are made with one eye on the clock and the other eye on the budget. And as such can we genuinely say that our actions protect people from (and don’t subject people to) inhuman or degrading treatment? That people aren’t detained without good reason? That we uphold people’s rights to family and home life? Rights and social care is a whole other (as yet unwritten) blog, suffice to say that complaints about broken washing machines are in a very different league to complaints about broken lives.

Internal customers
So, what about that last thread of the argument in favour of the term customers – that our colleagues in other teams and departments, not to mention our partners in other organisations and agencies, are also our customers? This idea doesn’t relate to trade, as we have no goods to sell, so once again we mean relationships and the virtues of customer service. However as discussed above, ultimately the term implies buying and selling, and by perpetuating its use we are maintaining a system where our trade is people and our transactions are hand-offs and referrals. By continuing to perceive fellow employees as customers, the inference of transaction and process remains. Whereas talk of colleagues or partners, and immediately you think of collaboration and of a team.

‘Our’ customers
Ultimately the term ‘customer’ is yet another distancing and dehumanising label – just like ‘service user’, ‘client’ and ‘case’. By describing people as customers, we gather them into a homogenous group ‘over there’, not like us. And not just any group, but a group whose identity is defined solely by their relationship to us as consumers of our services: ‘our customers’.

A better, brighter social care future
“Ultimately, we cannot be customers of relationships.”

Alex Fox [5]
In our new social care world, people are not passive recipients of generic services but active participants in shaping their lives.

In this better, brighter social care future, we as social care workers acknowledge we don’t have all the answers, but we do at least start asking the right questions, recognising people as experts in their own lives, and focusing on what needs to happen next for them to achieve what matters most. We reject our part in the business of processing ‘cases’ and walk away from our role as brokers of home care hours or residential care beds. Instead of facilitating transactions between customers and providers, we help people to see themselves and those close to them as a key part of the solution, not the problem.

Instead of ‘dealing with’ a generic group of customers, distinguished only by the service they consume, we are liberated from the constraints and bureaucracies of our current system and have sufficient time to get to know people and work with them and their families and communities. Our ‘customers’ become providers themselves. Employers, providing jobs for others. Employees, providing goods or services to customers of their own. Homeowners, providing space in their houses in return for companionship and support. Volunteers, providing experience and skills – and learning new ones too. People, providing friendship and laughter and wisdom and smiles and love.

And if people do need to purchase support to help them live the life they choose, we work with them and their families not just to explore a range of options, but to design and influence and create the solutions they know will work for them. A genuine, co-designed choice, not just the same old service offerings from the much-thumbed pages of our tired directories.

In this new world we don’t need standardised journey maps and process diagrams to tell us which way to go next, because we listen to people’s views about the direction they’re keen to take and the destination they’re aiming for. We support them to find the route that will work best for them. We help remove the obstacles in the way. We don’t need monthly forums to improve our generic services and maintain our dehumanising institutions, because we have conversations every day about improving individual lives and supporting communities to thrive. And we don’t need surveys and statistics to determine satisfaction because we know people and their families well enough to know when they’ve achieved what’s important to them – and we keep working with them until they have.

In our better, brighter social care future, our focus has shifted from transactions to relationships. We have all moved on, from consumers or providers or brokers of services to citizens and collaborators and colleagues with genuine choice and control. Equals, all bringing our own experience and expertise and responsibility, and working together to build, and maintain, and live good lives.

[For footnotes/references please see original article]

Words that blame: Difficult

“What starts as a note stating I cried in an appointment, becomes a letter that details a “difficult appointment”, which takes flight as a descriptor of me as a “difficult person”, which ultimately leads to a doctor I only just met describing me as “difficult – as expected.” Wren [7]

Tricky discussions. Feedback we find hard to hear. People experiencing tough times. Difficult conversations and difficult situations quickly morph into just plain ‘difficult’… and yes, it’s pretty much a catch all term for all the other blaming words and phrases listed here too.

Difficult case. Difficult service user. Difficult customer. Difficult patient. Difficult family.

Labels stick.

[7] Mental Health Clinical Notes: The Curse of the Paper-Self, Wren, Psychiatry is driving me mad, 22 August 2021

There are some words that automatically make me go hmmm, and several that really make me squirm. But, as I wrote in my original ‘why language matters’ blog post, the language of the social care world is so deeply entrenched that we don’t often think about the true meaning or impact of the words we use, or question why we continue to use them. And I’ll admit I hadn’t thought too much about the term ‘discharge’, until I heard Glyn Butcher talk about what the word means to him [1].

So, this blog is a reflection from us both, about what the word ‘discharge’ represents, and why it’s a word that makes us both go hmmm…

[⚠️ Trigger warning. Includes references to suicide and suicidal thoughts.]

Discharge.

It’s one of those words we hear, and we read, and we use a lot in relation to social care.

At a national level, the term dominates the discourse.

There’s the narrative of blame in the media. Social care blamed for ‘delaying discharges’ and the ‘increased pressures on our NHS’. ‘The population’ blamed for ‘ageing’ and for having ‘increasingly complex needs’. And ‘vulnerable patients’ blamed for ‘blocking beds’.

A narrative fuelled by campaigning organisations, with repeated calls for the government to ‘fix social care’ to ‘relieve pressure on the NHS’.

And a government response focused on ‘rolling out’ and ‘scaling up’. On ‘integration’ and innovation’. ‘Data’ and ‘technology’. ‘Virtual wards’ and ‘hospital at home beds’. An expansion of “services to keep vulnerable out of hospital.” A £500 million Adult Social Care Discharge Fund “to help free up hospital pressures and reduce strain on NHS”. “£1.6 billion to improve hospital discharge arrangements.” Funding to “prioritise those approaches that are most effective in freeing up the maximum number of hospital beds and reducing bed days lost.” Funding to “boost general adult social care workforce capacity… where that will contribute to reducing delayed discharges.” “A concerted focus on supporting discharge of those with particularly complex care needs… to free up hospital capacity.”[2][3][4][5][6]

While the national lens focuses on “freeing up beds”, not building better lives, and on ‘patients’ (specifically “the most vulnerable, frail and elderly patients” [7]) not people, the ‘operational’ vocabulary is one of transactions.

Discharge pathways. Discharge services. Discharge models. Discharge to assess. Discharge planning. Discharge procedures. Discharge decisions. Early supported discharge. Safe discharge. Timely discharge. Delayed discharge.[8]

The language of process and flow. Production lines. The health and social care sorting office.

One out, one in.

But underneath this dehumanised and dehumanising language, there are human beings. And I’d like to share what the term discharge means to one amazing human being – my pal Glyn.

“The word discharge sends shudders through my body, through my mind. I associate it with loss.

I spent 25 years in a [mental health] service trying not to get discharged because to me discharge meant abandonment, to me it meant being alone. My family was in mental health, my benefits were in mental health, my housing was in mental health, all my friends were in mental health, so why would I want to leave? Even hospital care – my friends were in there. So I fought against being discharged every single day so it wouldn’t happen to me, because I didn’t want to feel alone. On a Friday night when all the services were closed, I’d be stood on a bridge saying ‘I’m going to kill myself’ so the police would come and lock me back up and put me back through the front door again.

People are entrenched in services for decades. So, what does discharge feel like? It feels like people are taking away something from you that is normal, like eating and breathing. If someone decides they’re going to take something away from you, what are you going to replace it with? People don’t know what to fill it with, so they create more problems in their life to get back in. The point is they have to fill it with something.

The word discharge makes me shudder. I can feel the blood draining from my body. I feel sick in my stomach if I hear the word, and I experience flashbacks from past experiences of being discharged and the total emptiness I felt inside. I feel naked, alone, lost and abandoned. I lose all hope. The voices I hear and my suicidal thoughts intensify. That’s the power of language. That’s the power the word discharge has on me.

I associate being discharged with being inadequate. You are discharged from the army for doing wrong. Discharged from a job because you cannot do the work.

Being discharged means I’m on my own.”

The dictionary definition of discharge is “tell (someone) officially that they can or must leave a place or situation”. “To throw off or deliver a load, charge, or burden”. “Something that is emitted” (like sewage). [9][10]

The term “implies execution and completion of appointed duties or tasks”. Indeed, it originates from the late Latin term ‘discarricare’ (unload) and Old French ‘descharger’, becoming a Middle English term meaning ‘relieve of an obligation’.[11]

As Glyn says, “the focus is all on what you’re leaving, not what you’re going to”.

On the benefit to the service, not the person.

On what’s ending, not what’s next.

And there’s often an undertone of options being exhausted, and responsibility relinquished.

‘We have nothing more to offer you.’

‘There is nothing more we can do.’

Job done. Get out. The end.

With no acknowledgement of how frightening those words can sound and how lonely that reality can feel to the person – and to any people close to them – with no idea what the future holds.

Instead of the relentless and oppressive narrative of ‘discharge’, our focus needs to change to ‘going home’.

And yes of course there is already the mantra of ‘home first’. But that’s still ultimately a process full of pathways, where ‘home’ = your “usual place of residence”, where you are “discharged to be assessed”. Where the attention is on ‘transfer of care’, on “helping people get out of hospitals and into social care support”. On people “being cared for in the best place for them”.[12][13]

On getting care, not getting a life back – regardless of age or stage.

‘Going home’ doesn’t mean being ‘placed’ in a ‘bed’ or a ‘care setting’.

It means going (back) to a place that feels like home.

It means finding, or returning to, the place where you feel you belong.

[For references/footnotes please see original article]

“We want to empower our customers…”

“We empower people with lived experience to use their own voice”

“We want to empower our service users to work as equal partners with us.”

Argh.

We – the ‘professionals’ – give you – the ‘users’ – power. If we feel like it. Maybe. Sometimes. Or maybe not.

We see power as ours to give away.

And, by default, to take away.

And you are ‘ours’. We own you. We control you. We’re in charge.

“Empowerment: An illusory gift from professional to a not quite human.” Mark Neary[12]

We absolutely need to talk about power. We need to be aware of – and honest about – the power we hold in different roles and remove the obstacles to power being shared (including by paying attention to the way our policies and our practice and our language divide and exclude). But by talking about ‘empowering people’ and ‘giving power to people’ we’re further embedding the very power dynamic we are (in theory) aiming to remove.

[12] Parley Vouz Health & Social Care? (An A to Z of Carespeak), Mark Neary, Love, Belief and Balls

“Engaging customers in coproduction.”

“Engaging people with services.”

“Engaging with users.”

‘Engagement is often described as a ‘stepping stone’ to co-production, a rung on the ladder. But if we’re thinking in terms of ‘engaging’ people, we’re stepping off on the wrong foot.

The dictionary definition of ‘engagement’ is “an arrangement to meet or be present at a specified time and place”[10].

On other words, when can you – over there in your ‘marginalised group’ or your ‘vulnerable population’ – show up (at a time and place convenient for us) to help us?

Not how can we step in to be most effective? How can we step up to ensure sufficient connections and relationships and resources are in place for you to live the life you choose to lead? How can we step back and get out of the way?

‘Engagement’ is something we do to people, at a fixed time, for a fixed purpose. There’s no sense of an evolving, organic, long-term relationship, where trust is built and where genuine, human connections are made.

And if you choose not to show up when we tell you to, we’re quick to slap on a ‘refuses to engage’ label and move on.

There’s also the association of the term ‘engagement’ with battles – “a hostile encounter between military forces”[11] – which may be apt given the language of war that threads through our practice (frontline, duty, officers…) and the exhausting reality of fighting for support – but is obviously not the intention.

[10] Engagement, Merriam-Webster dictionary

[11] Engagement, Merriam-Webster dictionary

Words that blame: Frequent flyers

We blame people for not responding, for not doing what we ask, for not being where we want them to be. And we blame people for being too present. For ringing up too often. For coming back too regularly. For asking too much. ‘Frequent flyers’. ‘Revolving door customers’. ‘High intensity users’.

Behind these derogatory labels are human beings with hopes and fears and worries and aspirations and fluctuating needs for care and support. Are we really listening? Are we really meeting people’s needs and supporting them to get on with living their lives? The fact they’re coming back again and again suggests not. So, who exactly is to blame here?

Most social care departments have a ‘front-door’: a single access point where people seeking support first contact their local authority. In theory this makes it easier for people to contact us. A single phone number. A sole email address. One doorway. One way in. In reality, channelling everyone through a single point of entry makes it easier for us to screen and triage, to signpost people towards someone else’s door or refer them on to another part of our system – often with its own front door.

Instead of multiple doors into teams in communities – close to people’s lives and their own support networks, and close to others offering support – our centralised front door is separate. It’s removed from neighbourhoods, reliant on people coming to us rather than us making the effort to get closer to them. Call the single phone number and more often than not you’ll get a recorded message. Email the sole email address and you’ll probably get an automatic reply acknowledging receipt. Join the queue. We’ll add you to our waiting list. You’re not really welcome here.

The frontline.

It’s a place where opposing armies face each other in war and where fighting happens.

It’s the military line or part of an army that is closest to the enemy, formed by the most advanced tactical combat units.

It’s an area of potential or actual conflict or struggle. [1]

It’s the term we attribute to the people who work at the core of health and social care.

In this blog I’ll explore why the term ‘frontline’ and the associated language of war in the social care narrative makes me go hmmm… and why it has no place in our better, brighter social care future.

A place where fighting happens
Ironic, isn’t it, that we use the term frontline – so imbued with aggression and conflict – to describe people dedicated to sustaining and enhancing life?

Or maybe not, when so much of our current social care world does resemble a battleground.

Where often it feels we spend more time defending our budgets and processes than people’s human rights, and more time fighting with, than for, individuals and families.

More time ‘on duty’ than meeting all our statutory duties.

More time creating barriers and boundaries than crossing them.

The term frontline suggests invasion. Assault. Attack. It’s an all too accurate reflection of the power dynamics at play. The judgement involved in our assessment and eligibility determination. The threat of the review. The fear of budgets being cut, and support being removed.

Authority and control sit with the ‘professionals’ on the frontline, while ‘service users’ are the passive recipients of decisions made about them, and services delivered to them.

Often of course the power is even further from people seeking or drawing on support, as in reality it doesn’t sit with ‘frontline’ workers, who are caught in the crossfire, defending their decisions to panels and the decisions of panels to the people seeking support. Who are the passive recipients of ‘innovation’ and ‘transformation’, battered by an onslaught of change imposed by above. Who are constrained by perpetual process and bureaucracy, and defeated by impenetrable IT systems.

Opposing sides
As well as reflecting the battlegrounds and barriers in our current system, the use of the term ‘frontline’ perpetuates and reinforces the idea – and reality – of ‘them and us’, of opposing sides. The people on the frontline are professionals. Key workers. Carers. Heroes. On the other side: ‘service users’, ‘the vulnerable’, ‘the cared for’, ‘those’.

“…we will continue to express our gratitude and admiration for all adult social care professionals, wider local authority teams and unpaid carers who do so much important work, each and every day, to care for the most vulnerable in our society.”

Department of Health and Social Care [2]
Even definitions of coproduction refer to “professionals and people who use services” [3] or just “professionals and users” [4] – alongside references to sharing power as equal partners.

The ‘professional’ label offers people working in social care an identity, while people drawing on support remain an anonymous, objectified, dehumanised group.

This distinction also reinforces stereotypes and stigma by implying that people who draw on social care support aren’t professionals, and that professionals aren’t people who draw on social care support.

Frontline heroes
“I want to thank carers for all they do to look after our loved ones. Throughout this pandemic, they have gone above and beyond to protect our parents and grandparents… This exceptional career choice is tough but rewarding, and I would urge anyone who is thinking of a career in care to come forward and join this heroic workforce.”

Boris Johnson [5]
“Any new settlement must recognise the extraordinary sacrifices made by the social care workforce throughout the pandemic to care for elderly and vulnerable people with utmost professionalism and often at great personal risk.”

House of Commons Health and Social Care Committee [6]
Like soldiers on the frontline of war, during the pandemic people working on the social care ‘frontline’ have been identified by the government and the media as heroes.

As with ‘professional’, this label gives care workers an identity, but at the expense of the people they support, whose identity is in turn diminished, and whose contribution and sacrifice is seldom acknowledged.

Like the ‘vulnerable’ label frames (and blames) the person as the problem and deflects attention from the politics and policies and prejudice and power dynamics that cause and perpetuate vulnerability, the hero label shifts the focus from long term failures to properly support and reward people who fulfil these roles, and more recent failures to provide the protective equipment and workplace environments and working conditions to keep workers safe.

“Where language tells us health care workers were frontline soldiers, reality tells us individuals were scapegoated and thrust into battles with little help or support from the ones handing out proverbial medals.”

Hiba Ansar [7]
The military metaphors also extend to unpaid carers, who are often collectively referred to as an ‘army’. As with the hero label, there’s the implication of bravery and sacrifice – that battling is part of the role, not the result of decades of failures to adequately fund and reform social care.

Invisible heroes, a hidden army and the forgotten frontline
“Care workers have been the invisible heroes throughout the pandemic. They’ve been on the frontline giving their all while looking after older and disabled people.”

Caroline Abrahams [8]
‘Invisible heroes’. A ‘hidden army’ of carers. Campaigns to gain recognition and reward for people working in paid and unpaid roles in social care frequently suggest care workers are invisible or hidden. But an estimated 1.25 million people in England are employed in ‘direct care’ roles, and 1 in 8 adults are unpaid carers [9][10]. Not hidden or invisible, more like overlooked and forgotten.

“So, please stop referring to us as hidden carers. We are seen and heard every day. We’re not hidden, just conveniently ignored”.

Mina Akhtar [11]
However, most attempts to raise the profile of the ‘forgotten frontline’ bring us back once again to the ‘them and us’ narrative. From Jo Brand’s reference to the “hugely demanding, arduous, sometimes repetitive, often boring, thankless nature of the work that care workers do” [12], to Unison’s description of “the day-to-day challenges of caring for vulnerable people” [13], the TUC’s reference to “emotionally and physically draining” work [14] and multiple references to the “burden” of caring, all too often this narrative involves blaming and dehumanising people drawing on social care, further eroding their identity.

“The truth of the matter is that the low status accorded to care workers derives from the low status accorded to people who draw on care and support and in turn to supporting people to live their lives. Reinforcing such thinking helps no one”.

Neil Crowther [15]
A better, brighter future
‘Frontline’ is a term that doesn’t belong in our better, brighter social care future. It suggests and reflects division and conflict. It perpetuates a power dynamic we need to move beyond. It divides us into the protectors and the protected. Saviours and the saved. Carers and the cared for.

We need to be on the same side. Our battles should be for better lives, for human rights and social justice and against process and bureaucracy – not with each other.

We need to let down our defenses. Be open about our vulnerabilities. Recognise each other’s value, and our collective strength.

We need to stop fighting each other. Start looking out for one another. Be curious, not furious. Build trust, not walls.

In our better, brighter future, caring is a relationship, not a task or a service.

In our better, brighter future, people working in social care have the status and support they deserve, because people drawing on social care have the status and support they deserve.

We are all human. We are all equals. We need to drop the labels and cross the barriers they reflect and perpetuate.

We’re better together, and we can make our social care future better, together.

[For references/footnotes please see original article]

“Adult Social Care aims to maximise people’s independence.”

“The purpose of social care is to enable people to live an independent life.”

In 2006 the United Nations Convention on the Rights of Persons with Disabilities (CRPD) recognised the equal right of all disabled people to live independently and be included in the community, with choices equal to non-disabled people.

There’s no mention of ‘independent living’ in the Care Act 2014 though – a missed opportunity to explicitly incorporate the CRPD right into domestic law. And the associated statutory guidance dismisses the term as “relatively abstract”, suggesting the focus on wellbeing and the “outcomes that truly matter to people” is clearer.

Maybe this focus is clearer. But the guidance does state that “the concept of ‘independent living’ is a core part of the wellbeing principle” and that “supporting people to live as independently as possible, for as long as possible, is a guiding principle of the Care Act”. [1] As such, references to ‘independence’ feature prominently in statements about the purpose of adult social care.

But when we pay attention to the way we use the term, it’s obvious that we’re not all thinking or talking about the same thing.

In practice, independence is often understood in terms of the dictionary definition of “not relying on other people or needing help or money from anyone else”. As people “taking care of themselves”. [2] [3]

We “promote independence to build self-reliance and to minimise the need for high end care.” We “maximise the independence of individuals so that they are able to do more for themselves.” We “want you to stay well and independent for as long as possible, so our support isn’t needed.”

“When I say I want independence my social worker tells me she will end my social care package then I will have independence.”

Julie Sharp [4]

This narrative implies that drawing on support equates to loss of independence.

It’s far removed from the concept of independence equating to choice and control, where “independence is not linked to the physical or intellectual capacity to care for oneself without assistance; independence is created by having assistance when and how one requires it.” [5]

As Michael Oliver explains, “in advancing the idea of independence, professionals and disabled people have not been talking about the same thing. Professionals tend to define independence in terms of self-care activities such as washing, dressing, toileting, cooking and eating without assistance. Disabled people however, define independence differently, seeing it as the ability to be in control of and make decisions about one’s life, rather than doing things alone or without help.” [6]

“Independent Living does not mean that we want to do everything by ourselves and do not need anybody or that we want to live in isolation. Independent Living means that we demand the same choices and control in our every-day lives that our non-disabled brothers and sisters, neighbours and friends take for granted. We want to grow up in our families, go to the neighbourhood school, use the same bus as our neighbours, work in jobs that are in line with our education and abilities, start families of our own. Just as everybody else, we need to be in charge of our lives, think and speak for ourselves.”

Dr Adolf Ratzka [7]

Getting back to normal
The concept of independence as self-sufficiency is perhaps most obvious in relation to ‘reablement’. “The reablement approach supports people to do things for themselves.” “Reablement is a service designed to help you restore your independence and your confidence and ability to look after yourself. The aim is to help you to do as much as you can for yourself, rather than someone doing things for you.”

The dictionary definition of reablement is “the job or activity of helping people return to normal life again after a period of being ill or in hospital”. [8] (emphasis added)

And reablement is described on the NHS website as “temporary care to help you get back to normal and stay independent… a type of care that helps you relearn how to do daily activities, like cooking meals and washing… A team with a mix of people from the NHS and social services will help you do the things you need to do to stay independent. This might include getting dressed, preparing a meal, or getting up and down stairs. They might care for you at first, but will help you practise doing things on your own.” [9] (emphasis added)

Colin Goble writes that “from this perspective, which remains the dominant one in our society, disabled people are dependent because their bodies, senses or minds are somehow ‘defective’ and don’t allow them to function independently. In short, they are ‘not normal’, and a return to normality, or some approximation of it, becomes the goal of rehabilitation practice”. [10]

He observes how our “professional interventions” use “scales and tools” to measure people’s “performance against ‘normative’ standards”, and how we develop programmes to reduce the gap between where people are on the scale and what is considered ‘normal’.

As such, Jenny Morris writes – quoting Simon Brisenden – “disabled people are victims of an: “ideology of independence. It teaches us that unless we can do everything for ourselves we cannot take our place in society. We must be able to cook, wash, dress ourselves, make the bed, write, speak and so forth, before we can become proper people, before we are ‘independent’”. [11]

Reducing ‘care package’ costs
“Where progress to greater independence is achieved, we will look to reduce services accordingly.”

The Reclaiming our Futures Alliance of disabled people suggest that “the language of independent living has been appropriated by Government and public bodies to justify the cuts they are making… It is common practice for essential support to be removed from Disabled people through social care assessments under the justification of “helping” them to “improve their independence”. [12]

It’s hard to disagree when adult social care strategies mention ambitions to “increase service user independence to reduce the financial value of care packages”, “encourage independence [to] enable lower cost care packages” and maximise independence “to reduce the need for costly interventions” and “minimise costs to the taxpayer”.

The promotion of independence to ‘manage demand’, not to ensure wellbeing and the “outcomes that truly matter to people”.

Living independently ‘in your own home’
We generally imply that living in ‘your own home’ equates to independence, and that any support you draw on in ‘your own home’ will ‘allow you to remain independent’.

“Home care, or domiciliary care, is support provided in the person’s own home to allow them to stay independent for as long as possible.” “Small devices can detect and monitor your movements passively and can help you live independently in your own home.” “Supported living allows people with disabilities or mental health to maintain independence within the community.”

This equates independence with living ‘in the community’ as opposed to an institution, but not with people’s rights to liberty, autonomy, dignity, privacy, participation, and inclusion.

How many of the people supported to ‘live independently’ in their own home can control who comes through their front door, and when? Can eat what they feel like eating, and when they feel hungry? Can choose what time to go to bed and who shares their bed? Know who is monitoring their movements?

And, whether we interpret independence in terms of self-determination or self-reliance, too often ‘living independently’ equals secluded lives – a reality far removed from the Article 19 directive that disabled people should have access to the “assistance necessary to support living and inclusion in the community, and to prevent isolation or segregation from the community.” [13]

We may make sure people have ‘equipment to help with daily living’ or ‘four calls a day’ for ‘personal care needs’, but it’s unlikely life feels good if your only conversations are with Alexa or with a paid worker you’ve never seen before and may never see again. If the only time you’re touched or held involves ‘washing and dressing’ and ‘feeding’ and ‘moving and handling’.

It’s hard to realise or remember who you really are and why you really matter if you have no one in your life to affirm your identity and value, and nothing to do to give you any sense of meaning or purpose.

“When the first lockdown started and many were talking about how hard it was being stuck at home, not being able to do the things they enjoyed doing, or not being able to see friends and family, I remember thinking that it didn’t feel that different for me. Actually I felt more a part of society than normal, because everyone was experiencing a life more like mine, unable to lead the lives they wanted to lead.”

Anna Severwright [14]

For as long as possible
“Social care aims to help older and disabled people to stay as independent as possible for as long as possible.”

The “as long as possible” qualifier from the Care Act guidance is frequently repeated in references to the aims of social care.

This implies that at some point living in your own home will not be possible, and that a ‘placement’ in residential care is inevitable, regardless of whether it’s what you choose – a narrative far removed from the United Nations Convention on the Rights of Persons with Disabilities (CRPD) Article 19 requirement that disabled people “have the opportunity to choose their place of residence and where and with whom they live on an equal basis with others and are not obliged to live in a particular living arrangement”. (United Nations, 2006)

“Once again, just to bang on about this one more time, this right is about choice, not a particular kind of accommodation or ‘independent living skills’ or living alone or without support. It’s about disabled people having the same choices as non-disabled people about where you live and who you live with, and having access to the services you need to enable you to live there and be included in the community. It’s a right that has at its core a desire to tackle institutionalisation and the segregation and isolation of disabled people.”

Lucy Series [15]

Given the varying interpretations and how harmful they can be, I believe we need to think carefully about how helpful the language of independence is in relation to the overall purpose of social care.

I’m absolutely not advocating that we abandon the principles of independent living articulated in Article 19. However, I think we’re more likely to make these principles a reality if we talk instead about people having equal choices, and control over any assistance they require. About participation and interdependence. About all of us living in the place we call home, with the people and things we love, in communities where we look out for one another, doing the things that matter to us.

We don’t need to talk about independence to ensure that the principles of autonomy and inclusion are at the heart of what we do. We just need to talk about people leading the lives they choose to lead – then work together to make that a reality for everyone.

References

[1] Care and support statutory guidance, Department of Health and Social Care, Updated 28 March 2024

[2] Independence, Collins Dictionary

[3] Independent, Collins Dictionary

[4] When I say I want independence… Julie Sharp, Twitter, 25 April 2024

[5] ‘Independence’, Jenny Morris, 22 September 2014

[6] The politics of disablement, Michael Oliver, Macmillan, 1990.

[7] Independent Living and Our Organizations: A Definition, Dr Adolf Ratzka, Independent Living Institute, May 1997

[8] Reablement, Cambridge Dictionary

[9] Care after illness or hospital discharge (reablement). NHS

[10] Dependence, independence and normality, Colin Goble, in Disabling barriers – enabling environments (pp. 41-46), John Swain et al, Sage, 2004.

[11] ‘Independence’, Jenny Morris, 22 September 2014

[12] Independent Living for the Future, Reclaiming our Futures Alliance, Inclusion London, June 2019

[13] Convention On The Rights Of Persons With Disabilities (CRPD), United Nations, 2006

[14] Whose social care is it anyway? From permanent lockdown to an equal life, Social Care Future. (2021)

[15] A stupid question about supported living, Lucy Series, The Small Places, 18 February 2015

“‘Prevention’, along with ‘integration’ and ‘innovation’ is one of the most used and abused terms within public service reform.” Alex Fox [1]

Last Wednesday I was in York for a ‘Curious about… prevention’ session organised by the Curiosity Partnership.

And I am indeed curious about prevention, and it’s most definitely on my list of words that make me go hmmm…

In local authorities we have prevention officers, prevention workers, prevention teams, prevention services, prevention agendas, prevention strategies and prevention policies.

But what exactly do we mean by prevention in relation to social care, and what is it that we’re trying to prevent?

Stopping something from happening

Back in 1961, Lydia Rapoport wrote that “the concept of prevention, borrowed largely from the public health model, is often used in a distorted and confusing manner in the social work framework”[2]. And though the term is used ubiquitously sixty years on, “there remains a lack of common understanding and consistency in approach to prevention, which is perhaps unsurprising given the absence of a single definition and the wide range of interventions and objectives.”[3]

The dictionary definition of prevention is “the act of stopping something from happening or of stopping someone from doing something.”[4]

The ‘People at the heart of care’ white paper suggests that “prevention in social care is about encouraging people to be more proactive about their health and wellbeing”[5].

A more helpful definition is provided in the 2018 ‘Prevention is better than cure’ policy paper, which states that “prevention is about helping people stay healthy, happy and independent for as long as possible. This means reducing the chances of problems from arising in the first place and, when they do, supporting people to manage them as effectively as possible.”[6]

But this document, and many others on prevention, focus heavily on preventing ill health, disease and “people becoming patients”.

No one disputes that preventing problems and crises occurring is better than picking up the pieces and fixing things when they do. Prevention is better than cure. But this narrative means that prevention is still largely seen as being the realm of health and public health.

Preventing the need for care and support

“People who use services don’t want to be divided into the fixable and the not-fixable”. Sue Bott [7]

The duties relating to prevention in social care were introduced in the Care Act 2014. The Act requires all local authorities to prevent, reduce or delay the need for care and support and the associated statutory guidance makes it clear that “wellbeing cannot be achieved simply through crisis management; it must include a focus on delaying and preventing care and support needs, and supporting people to live as independently as possible for as long as possible.”

There are multiple references throughout the guidance to preventing “the development of needs for care and support”, “care and support needs”, “other needs from developing”, “needs emerging across health and care”, “carers from developing needs for support”, “an escalation in needs for care and support”, “a person’s needs from progressing”, “the development of needs in individuals”, and “future needs”.

But “care and support needs” is a tricky old phrase, isn’t it? Don’t we all need – and thrive due to – the care and support we all draw on? But the way the guidance refers to “those with care and support needs”, and “those people who may benefit from preventative support” perpetuates that sense of ‘them and us’ – those who need care and support and those who don’t, those with and without eligible needs, and those whose needs can – and can’t – be prevented.

“It sounds like you are dividing disabled people up into two groups of problems: those who can be prevented and those, like me, who can’t.” Disability rights activist [8]

The narrative around prevention often includes other tricky terms too, like ‘independence’ and ‘resilience’ – invoking and perpetuating the sense that ‘self-sufficiency’ and managing on your own is the goal.

Reducing the demand on services

Like the Care Act 2014 and the associated statutory guidance, the ‘People at the heart of care’ white paper includes references to preventing “people developing needs for care and support” and “future care needs”.[9]

The white paper also explicitly refers to preventing “longer-term demand” and “people from requiring social care in the first instance”, and this framing of – and case for – prevention is common. A basic trawl of recent strategies and other papers about prevention revealed lines like:

“unless we reduce demand and prevent need escalating, service provision in its current form will become unsustainable”
“we need to use preventative approaches to reduce the demand on services and reduce costs”
“the current social care and health system is unsustainable and will buckle under the weight of demand unless we urgently re-engineer our services to promote healthy choices, protect health, prevent sickness and intervene early to minimise the need for costly social care and hospital treatment”
“we need preventative strategies that mitigate or defer the need for costly interventions”.

As well as linking the ‘prevention agenda’ to cost savings, this narrative perpetuates the framing of social care as a service. As a destination. And as something to be avoided.

“when people are unwell, we need to help them stay independent in their own home for longer, avoiding a move into hospital or the care sector”. Duncan Selbie [10]

Delivering prevention

“To prevent needs emerging across health and care, integrated services should draw on a mixture of qualified health, care and support staff, working collaboratively to deliver prevention.” Care and support statutory guidance [11]

There are multiple references in the Care Act and the statutory guidance to the “provision of services, facilities or resources” to prevent, reduce or delay people’s needs for care and support. It’s ironic given the legislative shift from ‘providing services’ to ‘meeting needs’ that prevention is still described in terms of a service, to be delivered by ‘qualified staff’. And as such we have a new menu of ‘low-level interventions’ to pick from, including social prescribing services. Befriending schemes. Falls prevention classes. Reablement support. Still commissioning and delivering a service to passive recipients. Doing to and for ‘customers’, not with and by citizens.

The door to serviceland

“In the🌎 of #socialcare why is all talk of strengths, community, connection, contribution – firmly linked to ‘prevention’ (keeping peeps away from the🚪to serviceland?) Once peeps are through that door it’s all needs, needs, needs…strengths & contribution no longer important🤔” Angela Catley [12]

Despite the Care Act guidance emphasising that “prevention should be seen as an ongoing consideration and not a single activity or intervention”, in practice there’s a strong emphasis on prevention being something that happens ‘before’ social care, and once people have passed through the door to serviceland, they are ‘beyond prevention’.

Prevention teams and prevention workers often sit separately from social work teams, embedded within and knowledgeable about local communities and local sources of support. Building relationships and connections and community capacity. And then referring people on to ‘assessment and care management’ teams if their needs are ‘too high’ or ‘too complex’. The Care Act guidance helps perpetuate this thinking by advocating for “access to preventative support before a decision is made on whether the person has eligible needs” [13].

If we go back to the definition about prevention being “about helping people stay healthy, happy and independent for as long as possible”, there’s an implication that if you have ‘eligible needs’, the focus on health and happiness and independence is out the window. And although the Care Act 2014 suggests that care and support plans should include “advice and information about.. what can be done to prevent or delay the development of needs for care and support or of needs for support in the future” [14], more often than not plans focus on services to keep people alive rather than support to enable people to thrive.

Flipping the narrative

“’Prevention’ and ‘early intervention’ are both terrible pieces of language. Let’s start talking about the role social care can play, when organised well, in generating & helping us all to maintain our health and wellbeing.” Neil Crowther [15]

The way we view and communicate about prevention perpetuates a focus on systems and service delivery, not people. On reducing demand and cutting costs. On needs and eligibility. On assessment and division.

So, what if we flip the narrative? If we must talk about prevention, then let’s stop talking about preventing needs or reducing demand or delivering prevention services. Let’s focus instead on preventing people from living in places that don’t feel like home to them. From missing out on opportunities to build new relationships and to keep existing ones. From losing connection with their neighbourhoods and communities. From living lives without hope or any sense of purpose. From feeling like they’re not listened to, not heard, not understood. Left out. Left behind. From losing choice and control over their lives. From having their rights denied. From getting a service rather than a life, and from being denied the chance to live the life they choose to lead.

And let’s prevent people from being treated like a widget or a cog in the system, a case on the conveyor belt of social care. Prevent hand-offs and people having to tell their story multiple times. Prevent a focus on one-size fits all processes and pathways rather than on people and personalisation. Prevent people waiting. Prevent people being labelled, blamed, and excluded through the words and phrases we use to communicate with and about them. Prevent stigma and othering. Prevent people being left out of conversations and decisions at all levels. And prevent a focus on outputs rather than outcomes.

But even better, let’s drop the term prevention completely, and focus instead on what it is that we want to promote and to grow and to flourish. A sense of belonging. Friendships and relationships. Love. Liberty. Identity. Meaning and purpose. Equal rights and equality of opportunity. Active citizenship. Interdependency and reciprocity. Connected communities.

Hope.


REFERENCES

[1] A new health and care system, Alex Fox, Policy Press, 2018

[2] The Concept of Prevention in Social Work, Lydia Rapoport, Social Work, Volume 6, Issue 1, January 1961, Pages 3–12

[3] Prevention in social care, Social Care Institute for Excellence, May 2021

[4] Prevention, Cambridge dictionary

[5] People at the Heart of Care: adult social care reform white paper, Department of Health and Social Care, 2021 (updated 18 March 2022)

[6] Prevention is better than cure: our vision to help you live well for longer, Policy paper, Department of Health and Social Care, 5 November 2018

[7] Sue Bott, Disability Rights UK quoted in Ditch prevention!, Alex Fox, 15 March 2012

[8] A new health and care system, Alex Fox, Policy Press, 2018

[9] People at the Heart of Care: adult social care reform white paper, Department of Health and Social Care, 2021 (updated 18 March 2022)

[10] Better health for all: a new vision for prevention, Duncan Selbie, UK Health Security Agency, 5 November 2018

[11] Care and support statutory guidance, Department of Health and Social Care, 19 January 2023

[12] “In the 🌎 of #socialcare…, Angela Catley, Twitter, 28 February 2018

[13] Care Act 2014

[14] Care Act 2014

[15] Prevention and intervention are both… Neil Crowther, Twitter, 4 November 2022

A series of blogs about words that make me go hmmm would not be complete (and it is far from complete!) without a post focusing on ‘the v word’.

While it’s by no means a new term in the world of social work and social care, during the COVID-19 pandemic the word ‘vulnerable’ has been used ubiquitously – and I know I’m far from alone in feeling very uncomfortable about how the label continues to be used.

To explain more, here are ten reasons why ‘vulnerable’ makes me go hmmm…

1. It’s meaningless

When we refer to ‘vulnerable people’, most of the time we don’t explain who we mean, why we’re suggesting people are vulnerable, or what they’re vulnerable to. It’s a nebulous term used to label individuals and groups, and as such it’s pretty meaningless.

Last summer, then Health and Social Care Secretary Matt Hancock said that “from the earliest days of this crisis, we recognise that people in social care were uniquely vulnerable.”[1] Putting aside the exasperating reference to ‘in social care’, what does that phrase ‘uniquely vulnerable’ in the context of the pandemic actually mean?

A quick Google search reveals that the following people and places have all been described as ‘uniquely vulnerable’ to COVID-19:

People living in urban slums.
Women and girls.
Los Angeles.
Rural communities.
Refugees and asylum seekers.
The US economy.
Farm workers.
Small businesses.
Hammersmith.
Disabled people.
9/11 heroes.
People living with schizophrenia.
People experiencing homelessness.
Black Americans.
Windsor.
Pregnant women.
Support staff in schools.
People in prisons.
Babies.
The US.

2. It’s othering

The vulnerable label distances and divides.

Vulnerable people. Vulnerable families. Vulnerable communities.

Carers and the cared for. Protectors and the protected. Heroes and the vulnerable.

Them and us.

We may not be explicit in who we mean when we apply the label – but we don’t mean ‘us’. We’re talking about different, separate, others.

Those who are vulnerable.

Frequently we combine the term with additional labels to further distance: ‘vulnerable service users’, ‘vulnerable clients’, ‘vulnerable customers’, ‘vulnerable cases’.

Often, it’s used alongside or interchangeably with other objectifying labels like ‘the disabled’ or ‘the elderly’.

This categorisation means any sense of individuality and personhood is lost as people are grouped together and classified as ‘the vulnerable’.

3. It’s dehumanising

As this small selection of recent headlines demonstrates, not only do we ‘other’ people through our use of the term vulnerable, we also dehumanise them.

It seems copy editors in particular have taken to dropping any sense of humanity. So now we don’t even refer to vulnerable people, or vulnerable groups – just ‘vulnerable’.

4. It’s possessive

“The measures we have taken during this pandemic have always been to protect our most vulnerable.” [Department of Health and Social Care [2]]

Often, we add the possessive ‘our’ alongside the vulnerable label, extending the protective, paternalistic power dynamic and further legitimising decisions made about people, not by or with them.

Our vulnerable service users. Our vulnerable customers. Our vulnerable residents.

We’re in charge. We know best.

5. It’s excluding

Our welfare system is based on demonstrating sufficient vulnerability to qualify for help. Our services are for ‘the vulnerable’. We care for ‘our most vulnerable’. If you don’t tick the right boxes, you’re either not vulnerable enough – or the wrong kind of vulnerable – to be eligible.

How many people are we failing by not recognising and responding to their vulnerability?

How many people are we excluding?

6. It’s stigmatising

Weak. Feeble. Frail. Fragile. Ailing. Weedy. Doddery. Sickly. Helpless.

These are all synonyms for the term vulnerable – a term so frequently applied to social care ‘service users’. A blanket term that defines individuals and groups – eliciting assumptions and judgements, and stifling conversations, curiosity, choice.

Not only does this stereotype people who draw on social care, but it also stereotypes social care workers and social care in general as ‘looking after vulnerable people’ or ‘caring for the vulnerable’ – rather than a broader definition encompassing good lives, human rights and social justice.

Vulnerable has become a term with negative connotations, a label to distance yourself from. And yet as human beings we are all vulnerable. Being open and honest about our vulnerabilities allows us to connect with each other as equal human beings. To build trusted relationships. To let people in to see who we really are, not what we’re pretending to be.

Not only does our use of the term vulnerable stigmatise people, it also stigmatises vulnerability.

7. It’s paternalistic

“Our social care workforce has shown such courage in the last year caring for our most vulnerable during one of the most challenging periods many will ever experience.” [Department of Health and Social Care [3]

When we label individuals or groups as vulnerable, we’re removing any sense of agency from people. The term suggests helplessness and it promotes and perpetuates a protective approach, which further removes choice and control from people.

During the pandemic, the government and media have repeatedly referred to ‘protecting the vulnerable’. Local authorities describe their role in ‘caring for vulnerable residents’. Social workers “support and protect some of society’s most deprived and vulnerable people” [4]. Social care workers ‘care for our most vulnerable’. Unpaid carers ‘look after vulnerable relatives’. Voluntary and community organisations justify their existence and behaviour as ‘helping vulnerable people’.

Use of the term legitimises and even celebrates ‘doing to’ – illustrated during the pandemic with the focus on the ‘brave heroes’ who have ‘looked after’, ‘protected’ and ‘cared for’ ‘the vulnerable’.

8. It’s blaming

“The broad definition of a ‘vulnerable adult’ referred to in the 1997 Consultation Paper Who decides?, issued by the Lord Chancellor’s Department, is a person: “who is or may be in need of community care services by reason of mental or other disability, age or illness; and who is or may be unable to take care of him or herself, or unable to protect him or herself against significant harm or exploitation.” [Department of Health and Social Care [5]]

Despite the Care Act 2014 shift in terminology away from ‘vulnerable adult’ to ‘adult at risk’, this definition – or similar – is still very prevalent in our policies, papers and practice.

Vulnerable adults are ‘unable to take care of themselves’ and ‘unable to protect themselves from abuse’. Adults are vulnerable due to age, disability, or mental health problems.

Vulnerability is inherent, due to individual characteristics.

Broken people. Broken families. Broken communities. Broken lives.

Replacing the term with ‘adults at risk’ was a deliberate attempt to move away from this blaming narrative. To acknowledge that people are not intrinsically vulnerable, that we are all vulnerable at times, and that vulnerability is the result of external factors. Situations and circumstances. Politics and policies and prejudice and power dynamics.

We haven’t moved far.

The deficit-based, medical model is alive and kicking.

By labelling people as vulnerable, we’re suggesting there’s something wrong with them. We’re blaming people rather than recognising the external factors that make people vulnerable.

We’re not only failing to see people as unique individuals with pasts and futures, gifts and goals – human beings with human rights – we’re also failing to acknowledge or attempt to change the situations or circumstances that create vulnerability.

And during the pandemic, there’s been a distinct undercurrent of blaming ‘the vulnerable’.

“Boris Johnson speaks of ‘heavy heart’ as Christmas is sacrificed to protect the vulnerable” [Daily Telegraph headline [6]]

9. It’s dangerous

The vulnerable label is dangerous.

It suggests difference. Them, not us. Others. Those.

Its blanket use suggests individuals and groups are not quite so human. Not quite so visible. Not quite so valuable.

Its blanket use leads to blanket responses.

Who do we not save?

“Medically, very difficult decisions will need to be made, about who will get treatment and who will not… When these decisions are made not on the basis of medical judgement, but rather on the basis of ingrained, discriminatory attitudes about whose life has more value, that is when we have a societal problem” [Sanchita Hosali [7]]

Our use of the term also suggests an inevitability to abuse or to death, precluding too many questions, too much scrutiny.

“When a vulnerable person is murdered, or abused, or dies from Covid in a care home or avoidably in hospital because of the failure of medical professionals, the term already implies that it was at least in part because it was harder to protect them”. [Neil Crowther [8]]
“I’m sure we will see a high mortality rate in care homes sadly because this is a very vulnerable group.” [Chris Whitty [9]]

Herd immunity.
The Clinical Frailty Scale.
Blanket do not resuscitate orders.
Hospital discharge guidance.
Delays in testing.
Lack of adequate personal protective equipment.
Staff shortages / agency staff working across multiple sites / lack of sick pay.
Visiting restrictions.
Congregate living.
A very vulnerable group.

10. It makes people more vulnerable

“the national focus on ‘vulnerability’ and the ‘needs’ of people has created a division in which the skills and strengths of millions of people are overlooked in a way that also puts their mental health and wellbeing at risk”. [Community Catalysts [10]]

For all the reasons outlined above, I firmly believe that labelling people as vulnerable makes people more vulnerable.

It’s othering and dehumanising. Possessive and paternalistic. Excluding and stigmatising. Blaming and dangerous.

We are all vulnerable in different – and similar – ways. Our vulnerability makes us human but does not – and should not – define us. The blanket labelling of people as vulnerable erodes individual identity, removes choice, limits independence and legitimises doing to, not with. It also turns our attention away from addressing the attitudes and practices and policies and institutions that create and perpetuate vulnerability.

So, what term should we use instead?

I’m not suggesting that we stop talking about vulnerability. Far from it. But what I am calling for is an end to the discriminating and patronising use of the term. That we stop the lazy, blanket application without reason or context.

“If I put you in a room with a lion, you would be vulnerable.” [Anna Severwright [11]]

Changing our language and removing the vulnerable label is not about denying vulnerability. It’s about challenging the decisions and actions that enforce and reinforce vulnerability.

It’s about acknowledging our common humanity and celebrating our diversity.

It’s about shifting the narrative from ‘them and us’, to all of us.

“The opposite of othering is not “saming”, it is belonging. And belonging does not insist that we are all the same. It means we recognise and celebrate our differences, in a society where “we the people” includes all the people.” [john a powell [12]]

References

[1] Health and Social Care Secretary’s statement on coronavirus (COVID-19): 8 June 2020, Department of Health and Social Care, 9 June 2020

[2] More restrictions eased for care homes, Press release, Department of Health and Social Care, 10 May 2021

[3] New award to recognise exceptional practice in adult social care workforce, Press release, Department of Health and Social Care, 19 May 2021

[4] Developing your career – Social work, The Open University

[5] No secrets, Department of Health and Social Care, 20 March 2000

[6] Boris Johnson speaks of ‘heavy heart’ as Christmas is sacrificed to protect the vulnerable, Daily Telegraph, 19 December 2020

[7] The fight against Covid-19: Whose life counts? Sanchita Hosali, The British Institute of Human Rights, 2 April 2020

[8] A ‘larger us’ or ‘them and us’, Neil Crowther, Community Catalysts

[9] Coronavirus will affect everyday life for ‘really quite a long time’ Professor Whitty says, ITV News, 22 April 2020

[10] Valuable and vulnerable, Community Catalysts

[11] Opinion: we are so much more, Anna Severwright, Community Catalysts

[12] Us vs them: the sinister techniques of ‘Othering’ – and how to avoid them, john a Powell, The Guardian, 8 November 2017