Caring for our future Caring for our future: shared ambitions for care and support Summary and key findings, December 2011 Presentation to Secretary of State for Health and Minister of State for Care Services 7 th December 2011 Imelda Redmond, Peter Hay, Jeremy Hughes, Alex Fox, Geoff Alltimes, Dr Robert Varnam and Nick Kirwan THIS IS NOT A STATEMENT OF GOVERNMENT POLICY

Caring for our future 2 Summary We have heard overwhelming support for the need for a new care and support system. To shift from a system that is fast becoming out of date to ways of meeting needs today and is unable to meet future growing needs. We are in unprecedented economic times. Our vision provides a unique opportunity to reform the system in a balanced and responsible way to the taxpayer and to the citizen alike. The cost of doing nothing will be felt by society and by the Exchequer – greater cost pressure on the NHS. Our vision is for a re-engineered care and support system – from a crisis service to a wellbeing service that enables people to live fulfilling and independent lives. This means shifting resources across the health and care system, leaving silo mentalities behind, to change the demand and/or costs curves for social care. It requires a new partnership, which shares responsibility and takes a whole system approach based on empowerment and outcomes. We can only transform the system in partnership – between Government, the sector, communities and families. The White Paper and subsequent legislation are significant developments, but they will not deliver change by themselves. Behaviour and culture change are crucial to make the transformation needed to improve care and support. Legislative changes will take time to bed in, but we can forge ahead with other changes that are not reliant on legislation. Our ask of you – Radical change to the care and support system needs Government to be joined up in its approach to reform. The White Paper needs to set a clear timeline for the legislative and resource changes that are needed to create a modern and sustainable system. Our offer to you – The sector will work with Government and help take forward the changes that are needed to reform the care and support system.

Caring for our future 3 Why do we need to change social care? The current model of social care was forged on post-war thinking: it is failing fast as it becomes increasingly out of date to ways of meeting needs today. It is not fit for purpose. The current law on adult social care is fragmented, out of date and unclear. It causes uncertainty for people working in social care, and confusion for those who use services. There is a dual ‘burning platform’ for action now of local government spending reductions and the NHS QIPP challenge. Based on rationing, with access restricted by eligibility, it has been confined to the people of the highest needs and lowest means. The system perpetuates dependency, where people have to prove they are ‘needy and vulnerable’. Younger adults don’t have control over their life or access to employment and older people are not being fully supported in their wish to stay at home for as long as possible. Outside the State’s offer, consumers with their own resources have not always been able to access information, and not all have been able to exercise a position as empowered consumers. There is a lack of real choice for people about the services they can purchase. This is a model that represents a bad use of resources by some individuals and State alike – it is unfit to meet the needs of a whole population approach. Without reform, costs will spiral because of the impact of demographic change, including people living longer with LTCs, and it will continue to be unsustainable pushing the system to the brink of collapse. People do not understand social care or the distinction with the NHS leaving them confused and unprepared. Services across health and local government are delivered in an uncoordinated way. They are not always personalised or integrated around people’s needs. The system does not have a shared responsibility for delivering outcomes. Risk and reward sharing is not commonplace. Costs and people can be shunted around the system as a result.

Caring for our future 4 The cost of inaction Without a change of direction in social care, there are likely to be significantly costs for society – and the Exchequer – to bear as we move forward: State-funded social care will become increasingly rationed: leading to unmet need and cost shunting to the NHS, through increases in delayed transfers of care and increased demand in primary care. A PSSRU study found that, at the margins, an additional £1 spent on community services for older people saved 30p in hospital services for highly disabled people and 25p for less disabled people. More carers will experience increased stress trying to balance employment with caring roles. A 2001 study found 38% of admissions into care homes cited carer stress as a reason. More people will be unable to live their lives independently: 37% of people said that they did not have the opportunity to do the activities that they wanted to do; 23% did not have enough social contact and 25% did not have enough control over their daily life. Most people are not aware of the costs they may face. 10% of older people will be exposed to costs over £100,000. This can leave people frightened and create anxiety that they will lose their lifetime savings. Disabled people will continue to experience low levels of employment and inclusion in their communities. The costs of burgeoning isolation and loneliness will be felt by the NHS and care systems. The size of the workforce will continue to grow but in such a way that the benefits, skills and linkages with other careers are unplanned. Overuse of residential care and unnecessary hospitalisation creates an additional cost pressure.

Caring for our future 5 What we heard: the challenges in the current system support the need for change Lack of understanding, planning and preparing: – people do not understand the State offer and, if they do, think that it is unfair because it varies – people do not know what care and support is, how it is different to the NHS and how much it might cost – people do not plan and prepare for the future and there is low encouragement to do so – there is low demand for dedicated financial products to pay for care, which limits the range of products available Lack of information, advice and support adds to confusion: – people lack information and support about how to access services, and how to differentiate between health and care – people lack information about the financial choices they need to make Quality is variable: – confusing variation of the offer around the country – quality markers were abolished but users and providers want them A focus on cost at the expense of quality: – cost is driving LA procurement decisions, not prevention, long term sustainability or quality – a lack of innovation in the market Social care is not valued: – social care isn’t valued by society or by the NHS – the economic contribution to UK plc isn’t recognised Personalisation is not confined to personal budgets: – substantial behavioural and transformational change needed to make personalisation a reality for service users including those people funding their own care Deficit, crisis-based services: – social and community capital barely utilised – it can be difficult for people to design and share ownership of their own services and interventions A focus on the short term, at the expense of long-term sustainability and early intervention: – the pattern of cost and demand traps money at the top end of the system. – there is little strategic commissioning by LAs, rather short term procurement Services do not join up to: – reduce gaps and duplication – provide the right care in the right place at the right time – act preventatively – deliver quality, shared outcomes and person centred care A lack of evidence- on what works for prevention, early intervention, integration: Carers: – carers often feel unsupported and unable to cope increasing risk of hospital admission. – carers and families not involved in decisions about the cared for person Throughout the engagement, we consistently heard strong support for the need to create a new system. People highlighted that the key challenges in the system are :

Caring for our future 6 What we heard: the opportunities in the current system We are seeing the beginnings of a new approach in some places and widespread new thinking: People have taken control over their support plan and money to buy new types of services – achieving better outcomes with the same resources. Councils have shown willingness by creating new ways of working including some who are redesigning local care and support around prevention. Providers have changed their offer to match choices made by people buying care. In some areas people are co-designing new approaches and services. The sector is working together in change through Think Local, Act Personal, to develop resources and identify quality metrics and markers to support commissioning. The sector is signed up to a range of positive outcomes through Adult Social Care Outcomes Framework. Many providers are very committed to providing high quality, sustainable services. Community and personal budgets and opportunities to pool resources and assets. Personal Health Budgets alongside social care personal budgets, represent an opportunity to align health and care goals around an individual’s needs. New/innovative investment mechanisms such as Social Impact Bonds (SIB). NICE social care quality standards. The Commission on Funding of Care and Support offered fresh insight into funding care. There is support for introducing the key proposals particularly a capped cost model as it presents a ‘game changer’ in the way the system operates and people access care. There is recognition of the need for better use of finite resources (including investment capital) very differently to mainstream practice now. The financial services sector is interested in an increased role. Clinical commissioners are largely enthusiastic about the opportunities to collaborate across boundaries to create new models of care that are more responsive and effective There are opportunities to reduce demand via prevention and early intervention and to increase the focus on independence with a move away from residential/institutional care. The Health and Social Care Bill includes a greater focus on wellbeing services and the role of Health and Wellbeing Boards.

Caring for our future 7 Our vision for care and support During the course of the engagement, we have started to build a picture of the care and support system we collectively want to see. Our vision is for a re-engineered care and support system - from a crisis service to a wellbeing service that enables people to live fulfilling and independent lives. This means shifting resources across the health and care system, leaving silo mentalities behind to change the demand curve for social care. It requires new partnerships, which share responsibility and take a whole system approach based on empowerment and outcomes. For individuals, carers and families, our vision would mean: I can understand the system Social care is everyone’s business I only need to tell my story once I am in control and the services I need join up around me I am not defined by my care needs I feel responsible, not put upon My home and neighbourhood supports me to live the life I want to I can plan my life – to help me live my life so I can delay or avoid the need for care I know where to go for help Technology is an enabler in my life I am a socially engaged citizen I can access employment and volunteering I can design my own intervention or service I can connect with friends and make new ones I know how much I have to pay and can afford to/ have support to pay I know the best way to use my financial resources

Caring for our future 8 The elements we need in the system to support our vision…(1/2) The system: targets coordinated interventions at key risk and transition points to help people plan for future care and support needs and to help prevent people developing care needs. It encourages people to plan and prepare by increasing awareness of the system and enabling a greater range of affordable financial products shifts the balance of resources away from a focus on crisis only to universal based services which prevent people from needing formal care. This includes a universal offer for information, advice and care navigation, which helps citizens to plan (including financial planning) as well as to access services and build community capacity where it is lacking is clear about individuals’ entitlements to formal care and support and enables people to take responsibility for maintaining their health and wellbeing supports people to make better choices earlier about their housing options, as well as aids and adaptations to help people to live in their own homes for longer. This includes incentivising new care and extra care housing solutions should support people to regain their independence as quickly as possible when they first need care and support. Commissioning should: – be for the whole population across health, social care, housing, education with Health and Wellbeing Boards holding commissioners accountable for achieving these joint outcomes; – embrace commissioning for outcomes. This includes reducing inequalities, redesigning local systems and end-to-end care pathways around individuals, and ensuring funding is pooled where partnership working is required to meet mutual outcomes; and – be designed and delivered in partnership with providers as well as service users and carers.

Caring for our future 9 The elements we need in the system to support our vision…(2/2) Where people do need ongoing care and support, the care and support system should: – embed person centred care at its heart whatever the care setting or need: supporting individuals and carers to achieve the outcomes they want – helps people use their own financial resources better – recognise and support carers to care effectively and to pursue life chances of their own – support people and carers to realise employment opportunities – deliver high quality care, within a clear quality framework where providers aim for excellence and focus on continual quality improvement – provide advocacy for those who need it to help them achieve their outcomes – provide clear, transparent information to individuals about the quality of the care they are receiving (and buying) to help people, carers and families make informed choices – be delivered by a great workforce, with the skills and compassion needed to treat people with dignity and respect at all times – look to the future not just the now, taking a whole area approach to people’s needs integrated across health, care, housing and universal services – have shared culture, values and strong leadership to lead transformational change. A shared responsibility with professionals working alongside people to make the most of their gifts, skills and assets to support each other to avoid, or delay, the need for formal care and to help each other to live independently It should empower individuals and communities to find their own solutions, helping people, carers and families to build resilience, maintain networks and navigate and connect within their local community to live well and independently Care and support is sustainable and valued by society, as a great place to work and for its contribution to UK plc

Caring for our future 10 How to achieve the vision: the most important things the Government needs to do Champion and lead the case for change in social care Implement Law Commission recommendations – Law reform essential to wipe away a legislative framework that doesn’t embody our shared vision or ambitions. – Clarification on entitlement for users and carers critical Introduce a capped cost model with associated means test changes – A ‘game changer’ which brings significant opportunities to improve engagement with the system, information and advice, and incentives for prevention Signal recognition of a long term financial commitment – The sector is willing to take new responsibilities to alter costs, demand and quality (and can only do so in partnership with the NHS and housing. But it cannot do so in a zero sum game. Increased resources are needed for the medium term. Nationally consistent threshold for eligibility for care – National consistency will help simplify the system, to improve planning and preparing – It will take away one of the key aspects of the system that people consider unfair – But removing the postcode lottery of access must not take way postcode control of care and budgets Change the default in legislation so people must opt out of a personal budget – To accelerate progress on personal budgets and overcome professional resistance Enable personal budgets and personal health budgets (and other funding streams) to be combined Introduce universal entitlement to information, advice and care navigation – People need to understand how to access social care and where to find information, advice and support to help them make choices about the care and support they need including how it could be paid for. – So that services can more often be the last option discussed, not the first Clarify the market shaping role of local authorities – Signal that local authorities should work with local partners to keep people from developing a care need. For those who do Local Authorities have responsibility to ensure there is sufficiency of care and support services available of good quality to meet demand from all who require care. – Greater transparency throughout the system, with clear statements required on both the demand for services (JSNA) and supply, clearly explained to local people. Set out clear and shared vision for joined up services and align incentives – Champion the importance and benefits of building better services that are joined up around the needs of local people and communities

Caring for our future 11 How to achieve the vision: the most important things the Government and the sector need to do in partnership (1 ) Put in place a universal offer for information, advice and care navigation for citizens balancing national and local information – Government working with external partners to develop a coherent and comprehensive information, advice and navigation service to support life planning (including financial) as well as accessing care services for both state and self funders – Joint government and financial services campaign to highlight importance of planning for care needs. Information and nudges to help financial decisions Sharing responsibility for improving the system – Forge a strong network of existing bodies to collect and disseminate evidence-based best practice and develop shared approaches, behaviour and practices – Includes developing and sharing market information & intelligence on supply, demand and customer insight to support and facilitate a responsive market place, commissioning and service offer – Embed continual quality measurement and improvement across the care system Shift to an approach which focus on building on individuals’ and communities assets – Linked to responsibilities and rights. Incentivise a population-level behaviour change towards planning (including for people who are not eligible for state support) with navigation support universally – Support community building and asset assessment to build resilience, networks and connections within local communities Mainstream housing and planning into care planning – Incentivise people to invest in preventative measures including technology in their homes – Future proof design of new homes and neighbourhoods to enable independent living Re-balancing the social care market – A new shared approach to encourage an innovative and preventative market which makes use of technology and supplements specialist services for those unfortunate enough to reach crisis point

Caring for our future 12 How to achieve the vision: the most important things Government and the sector need to do in partnership (2) Strengthen the social care quality framework and build a system based on quality not cost – Improvements and new elements to be built around the four pillars of transparency and accountability, essential standards of quality and safety, sector led improvement and a clear definition of high quality Develop integrated and transformational leadership underpinned by a quality workforce – Strengthening capability cross sector to lead transformational change across health and social care – Embrace an approach to leadership development that supports integration, transformation and quality as organising principles – Focus on recruitment and retention, developing career progression and improving the image of social care. Up-skilling staff so quality defines the relationships which sit at the heart of care. Develop shared outcomes measures, based on user/ carer experience – Make data on services transparent to support choice and empower individuals and communities to challenge use of resources, expose poor practice and drive up quality – Align outcomes frameworks and develop joint outcome indicators across health, care, housing, employment… – Expect all providers to tackle isolation Pilot direct payments in residential care – maximise opportunities to extend choice and control for people over their care services – Opportunity to explore shared approaches along with the risks, impacts and opportunities Striking an appropriate regulatory environment for financial products – Government, FSA and financial services work together to build right environment for financial products

Caring for our future 13 Our ask of you and our offer to you Reform will not happen over night. But incremental change will only be achieved when we have a clear, shared vision of the transformational end point we are striving to reach. The Caring for our future engagement should be the beginning of a joint venture towards transformation. Change will be achieved through combining the effect of changing the legislation and bottom up change, directly from communities. Our offer to you The sector is ready to work with Government on the changes for the White Paper and legislation. We are also ready to press ahead now with the changes that are needed that are not reliant on legislation – the culture and leadership of the sector To continue to embrace and promote reform not retrenchment Our ask of you Champion the need for radical change in social care Champion reform across Government and work with other Government departments to play their part in delivering and funding the new system Set out in the White Paper a clear timeline for the legislative and resource changes that are needed to create a modern and sustainable system