Adult Social Care Glossary, v 0.6

Any action that prevents or delays the need for you to receive care and support, by keeping you well and enabling you to remain independent.

“‘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