THINK LOCAL ACT PERSONAL (TLAP) – WRITTEN SUBMISSION (ASC0054)

Table of Contents

SUMMARY

INTRODUCTION

THE INVISIBILITY OF SOCIAL CARE

BETTER SUPPORT FOR UNPAID CARERS

PUTTING CO-PRODUCTION AT THE HEART OF CARE

SUMMARY

Think Local Act Personal (TLAP) is a national partnership working to promote personalisation and community-based approaches across social care, health and housing. We are making this response to the House of Lords Adult Social Care Committee inquiry into adult social care. We believe it presents an important opportunity to highlight current problems holding back a personalised approach, but more importantly, to share our experience and thinking on how things can change for the better based on what is already known.

“Don’t we all want to live in the place we call home, with the people and things that we love, in communities where we look out for one another, doing what matters to us?” (Social Care Future vision)

The Committee is right to identify the root of the problem as a social care system that is poorly understood, difficult to access, and which provides a mixed experience for those who receive it. Until there is a better appreciation of its essential role there is little chance that it will command sufficient public and political support to occupy its proper place in society. Collective effort is required to raise its profile and the way to do this is by creating a shared understanding of purpose based on a clear vision. The vision must be grounded in the realities and aspirations of ordinary people’s lives and turn on its head the prevailing idea that social care is for the ‘vulnerable’ to one that sees it as a vital public service most of us will need at some point in our lives. A system that is visible, regarded as fair and which works for people within and across generations.

We believe the vision developed by Social Care Future, provides a vision capable of building widespread support. Whilst TLAP’s Making it Real framework, adopted within CQC’s new Assurance framework, can act as guide to translating this vision into shared action.

The social care White Paper provides welcome impetus for the unfinished business of the Care Act. In laying out a plan for the next three years it recognises that it will take longer to meet the aspiration of ‘people at the heart of care’. This is commensurate with the scale of the task given current pressures and distance to travel before personalised support is experienced by people at scale. But we are not starting from scratch and plenty that must be put into action today if we are to realise the vision in the future. Good practice and knowledge does already exist in how to enable people to self-direct their support; how to commission different things differently to support people’s wellbeing outcomes as opposed to purchasing standardised packages; how to support unpaid carers that recognises but doesn’t exploit their contribution; how to harness the reservoir of support that exists in communities.

Above all, we have co-production- a way of working with proven power to transform how people think, decisions are made and people act. This is a way of working that allows the knowledge, experience and ideas of people who draw on care and support and unpaid carers to be brought together on an equal basis with those who work in the system. If we get better at co-production we will get better at putting people not only in the heart care but more in control of it too. These are the points we elaborate in our response to the inquiry. This goes hand in hand with developing a positive image of social care so that is not seen as a last resort but an intrinsic part of the social fabric that people know about, support and draw on when they need it.

All what we say is grounded in the views of the people with lived experience that inform all TLAP’s work through our National Co-Production Advisory Group (NCAG) and wider networks. We hope that the inquiry will find what we have to say helpful in formulating its recommendations.

INTRODUCTION

This response from Think Local Act Personal (TLAP) has been developed with the involvement of people who draw on care and support from the National Co-Production Advisory Group (NCAG), incorporating feedback from the TLAP Board. It draws heavily on what we said to the Department of Health and Social Care as part of the consultation for the social care White Paper, People at the Heart of Social Care.

We have provided a response to each of the 21 questions. There is considerable overlap between some of the questions which means there is some repetition in our response. Some of the questions are long and not easy to get to grips with. In future we recommend that proposed questions are tested out beforehand with people who draw on care and support which TLAP/NCAG would be happy to support.

An overarching point that we would make is we do not believe that we can raise the profile of social care (to make it more visible) so that it commands better funding and respect without clarifying its definition and purpose. This should be based on the central concepts of wellbeing (quality of life), choice and control, and independent living. There is a compelling need for a more ambitious and inclusive vision of social care such as the one that has been developed by Social Care Future, a growing social movement, and for the role that Making it Real[1] can play in helping organisations and places translate the vision into practice.

Both were developed through co-production with people who draw on care and support and unpaid carers and their widespread adoption would do much to remove the invisibility of social care and support the shift required to a more human and person-centred approach to social care. Social Care Future has undertaken useful research into the potential impact of the vision on public perception[2].

They could also help create a ‘big conversation’, with proper public consultation and engagement on the purpose of social care; its interface with health; and the balance of responsibility between individuals and their families, communities and the state. How to hold this conversation could draw on the experience of agreeing social care reform in Germany and Australia’s Every Australian Counts[3], which led to the establishment of their National Disability Insurance Scheme. EngAgeNet, a national network of older designed to ensure the voice of older people in policy making is heard, has produced a model of ‘mature conversations’ intended to enable safe and honest local discussions about potentially difficult issues around care and support, including between younger and older generations[4].

In this way we should strive to build support and understanding so across and between generations social care is seen as ‘everybody’s business.’

THE INVISIBILITY OF SOCIAL CARE

1. One of the fundamental challenges facing adult social care is that it is ‘invisible’. Do you agree? What do you think explains this?

1.1.                     It is less a case of social care being invisible (for example, it was a significant issue in the last two general elections), but as the Committee recognises adult social care is poorly understood by the public and by many people who receive it. Visibility is poor, if continuing with the metaphor.

1.2.                     A historical perspective helps us understand the present. Social care didn’t clearly stand out as one of main pillars of the post-war welfare state settlement, unlike the NHS and education, which is at the root of its partial invisibility to the public eye. A long shadow is still cast by the Poor Law, with support couched in terms of the neediest, based on highly selective entitlement. Social care is too often portrayed as the junior partner to the NHS, primarily there to clear beds.

1.3.                     The above images perpetuate a narrow view of social care’s purpose, often as support for older people and how to pay for care in care homes. These are important issues, but are not the totality of what social care is now and what it should be in the future. Paternalistic terms, such as ‘protecting the vulnerable’ or ‘involving service users’ are in common use, reinforcing a perception of dependency and that social care is for ‘others’. This is heightened when social care hits the news usually as a result of scandals such as discovery of institutional abuse or neglect.

1.4.                     Social care can be perceived as invisible to the many people who could benefit from it but don’t know what support is available for them. Limited public understanding is compounded by virtue of many people (typically older people and their families) bumping up against social care at times of crisis, frequently not understanding that it is not free and there is both a means and needs test to pass. Assessments are complex, often invasive, and frequently perceived as unfair. Prior to needing support the majority of the public will have no contact with a social worker, unlike a doctor or nurse. The lack of parity of esteem with free at point of delivery NHS health service means there is much less visibility and understanding of the part played by social care in not just keeping people well, but the broader role councils play in public health and prevention.

1.5.                     There is still stigma attached to seeking help with generalised low expectation. People’s actual experience is often at odds with the requirements and expectations contained in the Care Act 2014 around wellbeing, rights to independent living, and choice and control. Feedback during our discussion with NCAG members was that too often people only go to social care when they are ‘desperate and on their knees’.

1.6.                     People who do not qualify for public funding (self-funders) have to date been largely invisible, with little support available to help make decisions about care, despite the responsibilities in the Care Act for local authorities to assist. The reforms in the White Paper, now reflected in the Health and Care Act are designed to address this, but substantial effort will be required to broaden the range of options and choices as more people seek assistance from the social care system.

1.7.                     Social care is visible (albeit how it is organised and paid for is not often not well understood - see points below) to the many thousands of people who day in and day out experience social care. Some experience good support, many others less so, due to gate-keeping aimed at deflecting people away; overly bureaucratic risk averse and transactional processes; poor quality; and one size fits all services, with little genuine choice and control on offer. 

1.8.                     In preparing this response, members of NCAG described the process of getting information and assistance as difficult, so it is not easy to know what your rights, entitlements and responsibilities are. This contrasts with the greater familiarity people have around going to the GP and visits or stays in hospital. The experience may not always be good, but people at least have more of an understanding on how it works. Accessing social care at all points is not a transparent process.

1.9.                     There is still a huge amount of ‘othering’, for example where society expects people with learning disability to go to ‘special places’ separate from everyone else. Too many people with learning disability/autism and people with mental health needs are rendered invisible as a result of prolonged stays in assessment and treatment units or ‘placements’ far away from where they live; or in various forms of supported living in the community, which are not set up to enable full participation in local life. At the same time there are good examples of forms of support that enable people to connect and contribute such as Shared Lives, Stay up Late and Keyring, which all feature on TLAP’s Directory of Innovations in community-centred support, colloquially known as the Rainbow[5].

1.10.               The idea of invisibility as holding back social care does however need careful application. A NCAG colleague made the point that when she goes out ‘I don’t want it to be obvious that the person with me is my carer, I want them to be seen as my mate’.  For some people who draw on care and support staff wearing uniforms and lanyards reinforces separateness and difference.  Viewing support workers and personal assistants as the ‘invisible scaffolding’ that supports people to lead their lives was a term used to describe a more empowering inclusive relationship. 

1.11.               The care and support sector is fragmented which makes it more difficult for the voice of people drawing on care and support to be heard and acted upon. The distance and separation from formal social care can be particularly large for people from Black Asian and ethnic minority communities as was identified in TLAP’s report, Personalisation in Black, Asian and minority ethnic communities[6].

1.12.               Despite half a century since the introduction of direct payments and subsequent enshrining of the right to a direct payment in the Care Act, the interests and concerns of direct payment holders have been largely invisible to policy makers. The Covid-19 pandemic has increased recognition and awareness in policy circles, which should be built on.

1.13.               Local authorities are responsible for social care under the Care Act, so social care is not invisible to them, and when combined with children’s social care, takes the largest slice of their controllable budgets. The many years of locally determined provision of support should not be overlooked or discounted and we do not think solutions lie in moving social care responsibilities to the NHS. The experience from responding to the Covid-19 pandemic highlighted the importance of integrated approaches at the local level. At the current time councils are directing most of their resources and efforts to meeting urgent demand which is hampering visible signs of progress.

1.14.               People live in places and that is where most support should be organised and delivered. However, there is still too much variation between councils in terms of what people can expect to receive and this has to change. Support is required to enable all councils to change gear to develop and embed more personalised and preventative based approaches. This does not mean importing wholesale ways of working or types of support without regard to local circumstances. It does mean adopting and adapting approaches that are shown to be effective; not everything has to be invented 152 times. Councils and their partners must therefore be prepared to share and act on what works best.

1.15.               We believe that one way to help break the circle of managing current demand through providing more of the same is protected investment to develop and commission more personalised forms of care and support and the turbo-charging of co-production at industrial scale, both points we make later.

1.16.               All the above goes to highlight the paramount need to create a better public image of social care as the foundation for making the improvements envisaged in the social care White Paper. We need to aim to reach the point where there is a shared understanding and expectation that over the life course most of us will need social care at some point in our lives.

2. What are the key changes that need to be made to reduce the invisibility of adult social care?

2.1.                     As outlined in our response to the first question there needs to be a bolder, bigger, braver ambition for social care, based on a different narrative to help create a better, more visible public image. For this to happen there needs to be real change. For reform to not be seen as an opportunity to fix the holes in a leaky boat, but to build something new, different, something truly transformative, but which reaffirms the wellbeing principle in the Care Act and a social care system built on the core principles of independent living and choice and control.

2.2.                     The words and vision are essential but need to be backed with action, accountability, investment, creativity, and commitment to genuine reform. Change and transformation depends less on structure, systems and processes and more on productive and positive relationships and creating networks: more human, less system.

2.3.                     The direction of travel of the social care White Paper is the right one. The opportunity should be taken of the first three years of implementation to build the momentum and public appetite for creating a longer term more inclusive vision of social care. There is a case for producing a long term plan for social care to sit equally alongside the NHS Long Term Plan, with clear objectives and milestones to help drive and measure progress. Widespread adoption of Making it Real as a framework and catalyst for what good personalised care and support looks like is a key resource to underpin this. The I statements describe what the experience should be for people whilst the We statements say what organisations should being doing to make this happen.

2.4.                     How social care works and what people can expect in terms of their rights, responsibilities and entitlements need to be communicated in ways that people can understand. There should be investment in advocacy services (beyond legal minimum provision) and support for people acting as their own advocates (self-advocacy). Only when people are confident with the right knowledge will change happen and demand be created for different forms of care and support, based on implementing proper self-directed support.  There may be opportunities with the introduction of Integrated Care Partnerships to develop in co-production with people, communications that make it easier for people to understand how social care works and how it connects to health, so they can more easily access it.

2.5.                     Disabled people’s organisations, user led organisations and other organisations trusted by those who use them should have a bigger role to play in making sure information and advice reaches all groups and communities. This will require some investment, as many of these organisations have experienced reduced funding from councils trying to balance their books.

2.6.                     NCAG colleagues highlighted things that frequently get in the way. They include difficulty in making contact with social care departments, practitioners lacking the time to work with people, and frequent staff turnover which makes it difficult to develop positive relationships needed for person-centred care. People also experienced some practitioners as lacking in the skills, knowledge and training of working in person-centred ways, leading to a lack of co-production in agreeing care and support plans. Sustained effort is therefore required to simplify the process for accessing care and support and to counter excessive bureaucracy, risk aversion, and unnecessary control.

2.7.                     Improvement is not all dependent on money. As a TLAP Board member said in their feedback, ‘good support is not necessarily expensive, and is always better value than breakdown.’ A lot depends on trusting people, that most of us will do the right thing most of the time, and changes in policy, practice and systems to make them simpler and more humane in ways that are also more efficient. Care Act assessments should be seen as positive interventions in their own right, allowing proper and full discussions about options for the future and the support available or which can be created to fulfil outcomes in the plan. Councils also need to loosen their reins. For example, if councils and health commissioners were more flexible in how direct payments can be used and encourage creativity, the general public will see much more, really positive, social care in communities. Practical ways of achieving this are laid out in a number of recent TLAP reports on direct payments[7]. These are of wider relevance and application beyond direct payments.

2.8.                     In line with what we have previously said there needs to be investment and high profile support for spreading and embedding of innovation and new models of care that provide for greater choice and control so they become clearly visible in local areas - and real choices to choose from - building on the work of the Social Care Innovation Network (SCIN)[8], led by SCIE, TLAP and Shared Lives and TLAP’s Directory of Innovations in Community-Centred Support already mentioned.

2.9.                     Incentives are required to promote, support, and evaluate approaches which deliver personalised and diverse support for all people in the neighbourhoods and communities where they live. Funding in the White Paper to support innovation and new models of care is welcome, but there is a good case for ring-fenced transitional funding to support change at scale, similar to the Special Transitional Grant used to stimulate a mixed economy of care for the community care reforms in the early 1990s. Such a grant now should only be available to support the development and commissioning of care and support anchored in the principles of personalised and community-based support.

2.10.               A longer term approach is needed to improve the image and understanding of social care, starting early in schools. Young people’s views of health are generally positive and training for health roles is seen as a good career move. By contrast, young people’s views of social care are generally negative, undervalued by society and not a good career option. Most young people have begun to form these views on different jobs before the age of ten. What we need to do is a lot more work on sharing what social care is and also sharing positive role models before children get to secondary school[9].

2.11.               Consideration might usefully be given to developing from the House of Lords inquiry a programme of planned and ongoing opportunities for parliamentarians to develop their understanding of social care; so they can act as ‘champions for change’, building on initiatives such as the All Party Parliamentary Group on social care. 

3. How does this invisibility reflect the experience of social care for people who draw on care and support and their carers, and how is this experience different depending on the age range and particular circumstances of those who draw on care and support and their carers?

3.1.                     Poor understanding of social care has the potential to affect everybody touched by social care. Moreover, people do not lead their lives in silos, and often require information, advice and support that extends beyond access to formal social care.

3.2.                     The Care Act does not separate people into categories on the basis of age, specific disabilities or other 'group' characteristics. TLAP’s position is that personalisation is for all and that social care has a vital role to play in enabling people to lead the best lives they can.

3.3.                     As stated earlier, rights for people and duties for local authorities in the Care Act are not generally well understood or acted upon, which means people are offered too little choice, and often left with a sense that they should feel grateful for what they are given.

3.4.                     Information is power, the significance of which applies across the board, whoever you are and whatever your circumstances. A lack of easily available, accessible and trusted information, advice, and advocacy on the support options available inhibits people from pro-actively seeking and/or taking up assistance. The shrinking of financial support to independent organisations such as user led and disabled people’s organisations’ has exacerbated these issues. It has also contributed to the continuation of a small menu of service provision which has not altered greatly over the last 40 years, with the exception of direct payments.

3.5.                     Lack of clear standards and expectations are compounded by a workforce that is not sufficiently supported and enabled to practice shared decision making and personalised approaches to care and support. A small but important part of the workforce are personal assistants employed by direct payment holders, who until recently have been largely invisible to policy makers and left out of workforce planning. This carries the risk that the workforce strategy outlined in the social care White Paper is rolled out using a blanket approach, with insufficient regard to the views and experience of direct payment holders and their personal assistants.

3.6.                     Many older people and their families, seek assistance and/or are provided with social care support at a time of crisis, (e.g. hospital admission), where the onus can be on facilitating a hospital discharge. In these situations, personalised approaches can be sacrificed or curtailed by the immediate demands of the system.

3.7.                     Stereotypical assumptions and bias’s exist over what the most appropriate forms of support are for groups of people that share protected characteristics and the extent to which people want choice and control, for example that older people don’t want and cannot manage a direct payment.

3.8.                     Disabled people (and their family carers), who require long term support over many years, often face constant battles to get the support they need to be independent, which enables them to contribute, connect and get on with their lives.

3.9.                     If comparisons are to be made between groups, the quality and purpose of life for a disabled person should be compared with their non-disabled peers. Too many young people with a learning disability experience what one NCAG family carer described as ’closed in-closed down lives’, where for example people in supported living are expected to be home at fixed times to accommodate staff shifts. Disabled people receiving home care (and older people as well) often have to go to bed unnaturally early, as care is not available after a certain time, often provided by the same care workers who started early the same morning, working very long shifts.

3.10.               For many young people who are moving into adulthood, the process of transition from children’s services to adult social care services is still too uncertain and disjointed.

3.11.               People with complex needs and disabilities (including those with communication needs) are often furthest away from decision making and rely on everyone acting in their best interest, which is not guaranteed.

3.12.               Options and choices can be unduly restricted by the availability of appropriate support (or its lack) and/or limited by the need to fit people into services that are already commissioned and/or funded.

3.13.               Whilst decisions about care and support and wider living options may be affected by age as well as by health, mobility and other issues, the emphasis should be on the individual personalised conversations and care planning.

3.14.               We should look at ageing and disability through the lens of legislation, equalities and the appropriateness of service provision and support to enable everyone to lead the best life they can. Services will differ in shape and form, but all should be underpinned by person-centred approaches to care and support as outlined in the Making it Real framework.

4. How would you define the purpose of adult social care?  How does the invisibility of adult social care get in the way of achieving this purpose?

4.1.                     The purpose of social care is to ensure that people with care and support needs are able to live the best and most meaningful lives they can. As Social Care Future has said, when organised well, social care helps people to weave the web of relationships and support in communities, whatever their age or stage in life. This view is based on the principles and values of personalisation and community-based support set out in Making it Real:

4.1.1. People are citizens first and foremost

4.1.2. A sense of belonging, positive relationships and contributing to community life are important to people’s health and wellbeing

4.1.3. Conversations with people are based on what matters most to them. Support is built up around people’s strengths, their own networks of support, and resources (assets) that can be mobilised from the local community.

4.1.4. People are at the centre. Support is available to enable people to have as much choice and control over their care and support as they wish.

4.1.5. Co-production is key; people are involved as equal partners in designing their own care and support.

4.1.6. People are treated equally and fairly, and the diversity of individuals and their communities should be recognised and viewed as a strength.

4.1.7. Feedback from people on their experience and outcome is routinely sought and used to bring about improvement.

4.2.                     Following Best Interest requirements should ensure that the principles set out in this framework apply where practicable and possible to people where reduced capacity has been established, or where there are legal restrictions or limited choices.

4.3.                     The Social Care Future vision and Making it Real should be seen as key building blocks that describe the changes required. Barriers and obstacles that are getting in the way of making progress have been listed above.

5. To what extent does the definition of the purpose of adult social care differ for younger and for older adults? How can future reform of the adult social care system best address these differences?

5.1.                     As we have said TLAP sees that the fundamental purpose of social care - good personalised care and support - should be the right of everyone, and that’s why we produced Making it Real. This deliberately avoids naming specific conditions or labelling groups. We believe that the principles of personalisation - putting people at the centre - should apply to everyone.

5.2.                     Separating out particular groups or making distinctions based on age or other characteristics risks reinforcing existing stereotypes, assumptions and inequalities and creating an unwelcome hierarchy of need.

5.3.                     Currently the system is too siloed, looking at people through the lens of single conditions; as an older person, a disabled person, or someone with a long-term condition. It doesn’t take into account the intersectionality of a person, or look at their life from a person-centred perspective, considering all of their experience, history, culture, beliefs and needs. This means that people’s ability to access support and opportunities of having a meaningful life are compromised, marginalised, or disregarded. To provide a fair and equitable social care system we need to consider what a person needs to intentionally provide equal access.

5.4.                     Access to support should be based on the principles of fairness and inclusivity (including paying for social care) across all groups and places. This does not mean treating everyone the same. People’s needs differ and protected characteristics under the public sector Equality Duty should be recognised. How and what support is provided should be tailored to individual circumstances so as to ensure that it is appropriate to the person - their identity, background and culture - to enable real choice and control. 

5.5.                     It should be explicitly recognised that some people face particular barriers as a result of discrimination, poverty, or other forms of disadvantage. Realising the principles and practice intentions of person-centred support therefore must acknowledge and address these issues if support is to be fair, equitable and social justice achieved.

5.6.                     Wellbeing is a central underpinning of the Care Act. What people see as important to their wellbeing will differ depending on the interplay of a range of factors, such as their cultural identity, home life, and the point at which social care comes into their lives. The importance of wellbeing doesn’t age, but does change over time. What a person may see as important to their wellbeing when they were 18 will be different to when they are in their late eighties. Services and support do need to be organised and delivered so that they are appropriate to meeting differing needs. ‘Placing’ a younger disabled person in a care home for older people is for example unlikely to be suitable for their wellbeing.

5.7.                     There needs to be a good mix of high quality care and support options available that can meet people’s needs and outcomes.  Local authorities have a key role in market shaping and commissioning: to enable people to commission their own care and support by ensuring there is a plentiful supply of options for people to choose from, including services which they directly commission. This requires reimagining what is possible in co-production with people and families. For example, to move beyond assuming the only realistic alternative to an adult with a learning disability moving on from their family home is a group home where there is little choice over who people live with and support has to be shared out between individuals.

6. What are the key challenges that people who draw on care and support and carers will face in the future, which are not factored into current assumptions related to the social care system, for example the fact that some families will age without children to care for them? How are these challenges different for younger and older adults who draw on care? What should be done now to address them?

6.1.                     Meeting future challenges must start from a realistic appraisal of where we are now. The Care Act is a good piece of legislation which has suffered from inconsistent implementation. There is widespread and growing unmet need, burden on unpaid carers is increasing, whilst people who draw on care and support (and unpaid carers) face the challenges of meeting cost of living increases, whilst in many cases contributing greater amounts to the costs of their care. 

6.2.                     The social care White Paper provides the opportunity to ‘go again’, but the current gap between policy and lived experience needs to be recognised and addressed if we are to make sure that people across the country can access and experience good value, personalised community-based care and support.  An improved landscape has been mapped by Social Care Future to comprise of:

6.2.1. A diversity of local community-based support on offer which includes care at night

6.2.2. A workforce drawn from and invested in their local area

6.2.3. A network of local people supporting local people for mutual benefit resilient to changing circumstances,

6.2.4. Conditions of work attractive to building and retaining a workforce of kind, skilled, people capable of responding to rapidly increasing demand for purposeful social care support.

6.3.                     As generations turnover people’s expectations are likely to rise, with people of all ages and groups expecting higher quality support and greater choice and control. Building greater public understanding should go hand in hand with achieving greater insight into the sorts of support that people want, so we do not end up with more of the same.  For example, how best to create a support environment that works for older people caring at a distance for their parents or other relatives or ‘housing with support options’ that are inclusive and affordable to older people across a wide range of needs and means.

6.4.                     Too few people of all ages and groups are able to genuinely self-direct their support. The system is still too heavily weighted towards a narrow range of familiar services which severely limit choice and are likely to be unaffordable if they continue to be the main form of investment (public and private), hence the need to make the shift to more personalised and community-based forms of care and support.

6.5.                     Health and care need forecasting to understand demographic and social trends can help build a picture of need and challenges (including bringing to light any factors not currently known about), but this shouldn’t be a technocratic exercise to chart the ‘supply and demand’ for existing services.  Good strategic needs assessments are required, combining quantitative analysis with the insights and experiences of people and communities, and to map and quantify resources and assets. They are also important to ensuring that no places or groups are left behind.

6.6.                     Much of the answer to addressing future challenges around ‘care-gaps’ is that local areas work with citizens to develop a clear, unifying, integrated and inclusive vision of social care in ‘their place’, to provide a framework for planning and development to meet existing and future challenges. This approach is set out in a number of papers published by TLAP (authored by Alex Fox OBE) on adopting an asset based approach[10]. It is founded on the belief that every area and its citizens can achieve more when they combine their expertise, time, creativity and resources. The two core aims of asset based approaches are to make more visible and value the skills, knowledge, connections and potential in the community, along with a need to redress the balance between meeting needs and nurturing the strengths and resources of citizens.

6.7.                     There is a question mark over whether there have been backward steps since Valuing People and Valuing People Now were guiding policy and action for people with learning disability and autism over 20 years ago, particularly around inclusion in mainstream education rather than segregation in special schools and what counts as appropriate forms of care and health provision (which links to the invisibility question).

6.8.                     There are big assumptions made about housing and what’s seen as appropriate for different people. For example, there a few alternatives to supported living if you have a learning disability; little possibility of saving to buy or move up the housing ladder if you’re reliant on benefits; far too few alternatives options available like shared ownership or cooperative housing. We are looking ahead to the first generation of older disabled people (i.e. disabled people who are now outliving their parents into later life) who need to be part of the debate on housing with support options in later life.

6.9.                     A further key challenge is to ensure that the workforce can provide person-centred relationship based care and support, underpinned by the necessary knowledge, skills and training to work well with the diversity of people that require support. This should not simply be about recruiting more people to come and work in social care, but ensuring workers have the right values for working in person-centred ways and that people don’t come to social care because they lack alternatives.

7. How can other public services (such as the NHS) play their part in tackling the invisibility of adult social care?

7.1.                     The things that support people to have the best lives they can are not fully covered by a social care system alone; people need a system which works across housing, health, the workplace, and communities. This ‘whole system- whole place’ approach is exemplified in Making it Real which makes it easy to see what contribution other public services (also for business and civil society) can make to promoting wellbeing in local areas.

7.2.                     The role of ‘universal’ services such as parks, leisure, and adult education was highlighted as a key aspect of the original Putting People First reforms where personalisation first became accepted policy and is worth re-visiting. These services still have some way to go so they  are fully inclusive and accessible to people drawing on care and support (and unpaid carers), in line with developing asset-based areas mentioned above.

7.3.                     As has already been highlighted a key area is housing which has been given welcome recognition in the social care White Paper. In taking this forward there are some important guiding principles which have been developed by Social Care Future which are:

7.3.1. Everyone has meaningful choice and control over the place they call home including access to affordable, self-directed care and support that helps maintain independence and well-being

7.3.2. Access to affordable, personalised care and support is not dependent on living in specialist accommodation (e.g. extra care, residential care)

7.3.3. No person is required, other than through personal choice, to leave their home to access (personalised) care and support.

7.4.                     Improving the quality and accessibility of housing will not only enhance the quality of life but in many cases also minimise the need for formal social care support. However the new money in the White Paper for innovative solutions to housing with care (as alternatives to traditional care homes) is primarily directed towards investment in provision for older people and a broader scope is called for.

8. What effect has the Covid-19 pandemic had on adult social care

8.1.                     Covid-19 revealed the cracks in social care and its impact is likely to be far reaching. Existing problems with social care, such as lack of investment and practices that do not support personalisation, have been exacerbated. The experience of people accessing care and support (and unpaid family carers) was mixed, including a reduction in choice and control for some, increased burden placed on unpaid family carers, and a disproportionate impact on groups drawing on social care including black and minority ethnic groups, people with learning disabilities and residents in care homes. TLAP’s Telling Experience report[11] documented some of these impacts during the first wave of the pandemic.

8.2.                     This was not the full picture though. There were also examples of innovation with the rapid introduction of new ways of working, loosening of restrictive practices, and devolving more control to people who draw on care and support. In terms of lessons learnt, some councils and care providers demonstrated what a reformed social care system could look like when they alter their attitudes and behaviours to be more trusting and less bureaucratic. These shifts are described in TLAP’s report, the 3Rs of Social Care Reform, which identifies three key ingredients for reform: constructive risk taking, respectful relationships and a sense of reciprocity[12]. Key points of particular relevance to the Inquiry are outlined below:

Self-Directed Support

8.3.                     In the area of self-directed support, particularly direct payments, we did not come across much, if anything, that suggests that enabling people to have greater flexibility to manage their own support put them at greater risk. Indeed, the opposite seems to be the case. What seems to work is pro-active two-way communication and allowing people the space to make their own decisions by ensuring they have the information and support they need, as and when they need it. That was the original intention and one that still works.

8.4.                     Whilst direct payments are not right for everyone, we do not think a natural ceiling has been reached (latest numbers show a slight downward trend), so now is the time to really push on to make this a viable attractive choice for many more people, including older people where take up has been lower. We recommend that councils take a hard look at their policy, systems, processes and practice for self-directed support, and for all forms of personal budgets, to be sure that they enable authentic choice and control. Any such review must engage with people with lived experience. TLAP’s latest set of resources on direct payments (already mentioned) can help councils to get better at direct payments.

Commissioning and provider relationships

8.5.                     Some councils allowed their commissioned providers to respond more flexibly and exercise greater discretion on how best to provide their service, reinforcing acceptance that ‘time and task’ commissioning has had its day. The emphasis now should be a big push for asset based collaborative commissioning based on ‘whole person, whole place’, informed by the Care Act’s wellbeing duty.

Co-production with people

8.6.                     Places that had good structures for co- production and engagement with people accessing care and support found that these were helpful in responding to the pandemic. Councils that kept going with co-production (or re-started after the initial shock of the onset of the pandemic) felt this was the right decision which confirmed their commitment to continue working in this way. There needs to be sustained investment in cash and kind, at national, regional and local levels to strengthen co-production, so that it becomes the generally accepted way of working (See also responses to questions on co-production).

Social care and communities

8.7.                     The pandemic saw people and communities come together to look out for each other.  Where councils were already invested in this community minded approach there was a good foundation for harnessing this spontaneous community action. All councils will have responded to wrap some infrastructure and support around this community mobilisation. As we move from recovery into reform, there are challenges and opportunities to build on this. Across all their functions (so not just social care) councils have got used to acting on a much more local level (the hyper local) which has brought a richer and more detailed appreciation of assets and needs. This should provide a platform to push forward with community-based support.

8.8.                     Community support needs to be protected. Carers and the people they support have often chosen to use community support and activities rather than organised day or respite services. The Covid lockdowns coupled with local authority funding reductions have threatened the survival of many of these projects and others are at risk without financial support. The White Paper rightly makes much of the importance of lived experience in influencing the design of future services and support. But collaborative care and peer support needs community bases to be effective and, importantly, to help shape the local ‘care market’ and inform local commissioning decisions.

8.9.                     At local and national level there is an opportunity to redefine the relationship and boundaries between state intervention and citizen action. It will be important to find a middle way between leaving communities get on with it or stifling community mobilisation by seeking to over-control it. Care will also need to be taken to ensure that we do not unintentionally re-invent a ‘gift model’, with a sharp divide between those citizens who give help and those dependent on receiving it. Additionally, it is vital that no-one is left behind. Community mobilisation should be a springboard for tackling inequalities.

BETTER SUPPORT FOR UNPAID CARERS

1. What, in addition to the support that has already been pledged by the Government, would be the most effective thing that could be done to raise the profile, as well as to improve the identification and support of carers? What examples exist to demonstrate that better identifying and supporting carers leads to better outcomes for those whom they care.

1.1.                     First and foremost, it is important to make progress with commitments already made in the social care White Paper. Continued focus is required to uphold in practice the parity of esteem for unpaid carers enshrined in the Care Act, so that for example carers are encouraged to take up their own assessments. This need to be backed with the availability of carer support options, to avoid the scenario of needs being indentified, but a lack of ways to meet them.

1.2.                     Carers need practical help to know how the system works and what their rights are, including accessing carers assessments and carer grants. Social prescribing needs to be more than signposting to potential sources of assistance such as social services and undertake active care navigation when and where this is required.

1.3.                     Carers should have access to opportunities for learning and development to understand the way the system works, exemplified by the Partners in Policy Making programme[13]. Participation in a grounded programme like this has shown to be life-changing for family carers and a way of learning about person-centred thinking in the family context.

1.4.                     Significant change is required so that ways of getting a break and having time off are more personalised to the carer and the person needing care and support. Meaningful breaks which for some carers means a change from the routine of day to day life, not necessarily their caring role and/or the option of taking their break with the person they care for.

1.5.                     There is an urgent and serious need to modernise the carers offer, which in too many places consists of a narrow range of options such as respite stays in care homes. These work well for some people, but should not be the default option. We should raise our ambition so that we do not regard a ‘sitting service’ as respite: a couple of hours off to go to the supermarket, or for a short coffee with a friend, are part of normal life to which carers should be entitled.

1.6.                     The terms and expectations of national funding should include that councils invest in personalised support for carers, based on co-production with unpaid carers and using findings from research to inform innovation. This should include understanding the experience and needs of carers from Black, Asian and ethnic minority communities to ensure culturally appropriate provision. Examples of innovation already exist on TLAP’s directory of Innovations in community centred support such as Mobilise[14], an on-line platform that has been developed to reach many carers at an early stage of their caring to role to provide peer support and information.

1.7.                     Linked to the above point we think there is considerable scope to intentionally increase the number of carers who take a direct payment in their own right in order that they can organise support and activities that work best for them.

1.8.                     More attention should be paid to the sorts of support that help people who look after each other, often older people as couples, who are interdependent as they grow older together.  Also for those who care for relatives and friends at a distance. Parents of adults with complex needs often experience a lack of suitable provision.

2. How can carers who wish to do so be better enabled to stay in work or rejoin the workforce? What needs to change to achieve this?

2.1.                     Local economic development planning and workforce planning for health and care should explicitly address retaining and supporting unpaid carers to return to the workforce and ways to achieve this. The current trend for older workers to drop out of the workforce creates both the need and opportunity by investing in the right support. The trend from the Covid pandemic for more people to work from home should be examined to see what the issues and opportunities are for carers who wish to take on work.

2.2.                     There should be widespread adoption of existing good practices around flexible employment such as TLAP’s and the Association of Directors of Adult Social Services (ADASS) Top Tips for Supporting Working Carers[15]

2.3.                     Full use should be made of the available research on work and caring and carers research more generally.

3. What are the key priorities for carers in terms of their own support, wellbeing and resilience? How and where can these best be provided?

3.1.                     Carers are supported to provide care and support to the person they know and care about  for as long as they wish and can take time off from their caring role in meaningful ways to them. Aspects of ‘what good looks like’ are:

3.1.1. Choice from a range of options to replace or supplement the care and support they provide

3.1.2. Support to stay healthy and well physically and mentally

3.1.3. The ability to balance the caring role with work and leisure interests

3.2.                     Support shouldn’t exclusively rest on activities or programmes aimed at carers alone. Not all carers wish to meet up with other carers as the only option, so it’s also about enabling carers to access everyday activities and places, like everyone else. Special rates and discounts could really help as many carers forsake income because of their caring role.

3.3.                     Good information and advice plays a critical role in this support as does peer support from other carers with lived experience.

3.4.                     Carers are heard in decision making about the person they know and care about, their needs and how they are met. This is crucial as a lot of the stress, anxiety and anger that carers experience is because of the way their relative is treated by the system - too often having to constantly fight and argue for better support. Councils and services sometimes act to push carers away from involvement in thinking about what’s best for their family member and the carers understanding of their loved one is not taken into account. Too often assumptions are made about what family carers should be doing or not doing and unrealistic expectations placed upon them. As one of NCAG member put it ‘if the people we love were supported, all the stress would disappear.’

3.5.                     Carers should not be financially disadvantaged for choosing to care for and support their loved one. The financial impact on working age carers can be high and not fully compensated for by the benefit system, much of which is means tested.

4. To what extent do carers make use of alternative forms of support such as the voluntary community? Is there any scope for them to draw on those assets more and how might they be enabled to do that? Are there examples where this happens successfully now?

4.1.                     Many carers make use of support provided by the voluntary, community and social enterprise sector including local carer support organisations which are highly valued. Sometimes these services can end up acting as a substitute for a lack of support available from statutory services. Some undertake Carers Assessments on behalf of the local authority as they are attuned to carers needs and experiences so require proper investment.  Feedback from discussion with NCAG colleagues is that there is less carer support available for carers of people of working age. Also, that it is important to recognise and support carers having opportunities to participate in the community as ‘like everyone else [they] want to live a good ordinary life and don’t want to be seen as objects of charity.”

4.2.                     In line with our earlier points about asset based areas and creating inclusive and supportive places to live, we think there is potential to harness and draw on more support available from within local communities, but this must be done in ways that doesn’t leave it solely to the goodwill of individuals or, at the other extreme, lead to councils taking control.

5. How valued and respected are carers in the overall adult social care system and what are the consequences of failing to value and respect them?

5.1.                     It is positive that improving support for unpaid to carers is a significant element of the social care White Paper. More can and should be done to recognise the valuable work undertaken by carers in supporting people. At the practice level it means valuing and working holistically with families.

5.2.                     It should be recognised that few people make a conscious choice to take on the role of carer and many do not identify as carers. As an NCAG colleague described it, ‘it’s what life throws at the people you love and how you naturally respond.’ In this context failure to sufficiently value and respect carers will de-motivate and de-moralise, and may limit the number of people willing and able to continue in their caring role.

5.3.                     Value and respect needs to be demonstrated through the provision of concrete and tangible support to carers so that it is not experienced as patronising or tokenistic, for example by ensuring practical support on how to support people who have dementia or autism on a day-to-day basis, and how to cope with natural feelings of frustration and irritation that are part and parcel of carers lives. Where carers are left isolated and coping without support there is a risk that people will suffer from neglect, abuse, or just not have a good life.  As one NCAG member put it, “if the person is getting the right support, the carer will be less stressed.”

5.4.                     The system needs to create a more equal and respectful relationship with carers which entails a change in culture, attitudes and behaviour in order to engage and co-produce with carers and to afford proper recognition of their role. Not all carers benefit from carers grants. Where they are available, they should come with as few strings attached as possible, for example by not wanting receipts for small things when it’s a one off grant.

6. What can be done to make sure that social care professionals recognise the expertise of carers and value them as full and equal partners in care, who are included as part of the whole team, so that there is greater synergy between paid and unpaid care?

6.1.                     Professionals should recognise the experience, knowledge and understanding that the carer brings and allow for ‘honest conversations’ in a spirit of co-production. Carers should be seen as equal partners, as they are often the advocate of the person who is accessing services. If there are times when carers are felt to be acting in ways that are detrimental to the wellbeing of the person, there should be conversations to identify what is going on, rather than setting up adversarial processes.

6.2.                     All of the above will be greatly assisted with more consistent application of the policy and practice duties as they relate to carers already contained in the Care Act and supporting guidance. There also should be improved awareness of people’s right to advocates under the Care Act and Mental Health Act, including involving advocates when communication is difficult.

7. Why is the current care system so difficult to access for carers? What needs to be put in place so that carers can simply understand what is available to them as a right and discretion, and the person they support? Do you know of good practice examples? How can these examples be expanded more widely across the system?

7.1.                     See earlier response on problems with the existing system that is often difficult to navigate with too much gate keeping driven by the need to protect limited resources.

7.2.                     Carers organisations and peer to peer information are highly valued sources of information and advice, rooted in experience, which should be invested in. However, peer support is not a substitute for access to impartial advice on law and policy. A great example of enabling carers to understand the system is the Partners in Policymaking programme (previously mentioned) which should be made more widely available across the country with the support from the statutory sector.

7.3.                     Feedback from NCAG members highlighted a gap in engagement and co-production structures and processes for family carers of adults aged over 25. This was felt to limit the opportunity for parent carers to be involved in the co-production of supported and independent living for adults with learning disabilities and those with autism.

7.4.                     Caring responsibilities are not confined to formal social care and there is a great deal of interdependency with health and the NHS and other public services. There is a need for a more integrated approach at the national level and in local areas.

PUTTING CO-PRODUCTION AT THE HEART OF CARE

1. To what extent are the voices of people who draw on care and support and carers shaping the design and delivery of social care, irrespective of their age or circumstances? If these voices are not sufficiently heard, what is the impact of this on those who draw on care and support and carers?

1.1.                     Social care is there to support people to lead the best lives they can. It is therefore only right and essential that people who draw on care and support (or may do so in the future) are involved through co-production in something that has major significance for their lives.

1.2.                     If voices are not sufficiently heard and acted upon the ambitions of social care reform set out in the social care White Paper will not be achieved around the aims of choice and control and support to live independent lives. The chances also are that money is wastefully invested in services and support that fail to meet people’s needs and outcomes.

1.3.                     Our experience and insight suggests that there is a growing recognition of the need to co-produce the design and delivery of social care (health as well), but the extent of authentic co-production in practice is variable and, in general, is still at a relatively early stage of development.  Progress is needed on three interrelated fronts: co-producing people’s own care and support, co-production at the operational /service level, and at the higher strategic level of decision making.

1.4.                     At the level of the individual, as previously stated, social workers and other practitioners are often constrained by the amount of time they have to work with people. This limits their ability to build positive relationships and so there is no real co-production in the person’s care and support, or support for the carer. Constant changes in staff exacerbate this. NCAG colleagues in their feedback stressed the need for social workers and practitioners to be trained in co-production by people with lived experience so they can work in ways that see a person’s strengths and not just needs.

1.5.                     At the national level there have been some encouraging signs to develop co-productive approaches, as evidenced by the House of Lord’s inquiry itself. Other examples are:

1.5.1. Convened through TLAP, people with lived experience were able to provide feedback on the development of the social care White Paper, although the short timescale meant that this fell short of co-production in its fullest sense

1.5.2. A commitment is made in the White Paper, with the support of TLAP, to increase the voice of people in shaping implementation

1.5.3. As part of this, as well as meetings with the Minister for Care, regular engagement with civil servants is being planned. DHSC policy leads through the Chief Social Worker’s Office have continued to engage with the Re-imagining Self-Directed Support Group and the All Party Parliamentary Group for Social Care has committed itself to increasing the participation of people with lived experience in its work

1.5.4. Some recent TLAP resources designed to improve the take up and experience of direct payments have been developed in co-production with ADASS, Local Government Association (LGA) and people with lived experience

1.5.5. Discussions are taking place between TLAP and ADASS to create an infrastructure to bring the voice of people who draw on care and support (and unpaid carers) closer to ADASS’s work so that its policies are better connected to lived experience, and some regional ADASS branches are investing in co-production (e.g. West Midlands and Yorkshire and Humber). 

1.6.                     At the local level TLAP has supported some councils to develop and embed co-production using Making it Real as a resource and catalyst for change (e.g. Essex, Leicester and Shropshire).

1.7.                     Co-production is not a term that everyone uses or relates to, and is not in the language widely used by the public. As mentioned above there is a tendency in the care and support sector to talk about co-production without necessarily adhering to this in practice. On both counts there is work to be done to increase understanding and acceptance of some clear and basic standards around co-production, building on existing work like TLAP’s co-production ladder.[16]

1.8.                     Genuine engagement requires real intent from the earliest opportunity to work with people as partners in policy making. Unrealistic timeframes can put avoidable pressure on people with lived experience to step up and compromises their ability to contribute to the best effect. When the topics under discussion are of such personal and social importance, it is crucial that people are given every opportunity to understand the ‘ask’, feed in fully and in a way that enables them to contribute meaningfully. The aim should be to travel beyond a commitment to hear the voices of people with lived experience and arrive at genuine shared decision making.

1.9.                     Particular attention should be to be paid to those furthest away from decision making, for example in institutional settings or in excluded/disadvantaged communities. TLAP’s report on personalisation for people from Black, Asian and minority ethnic communities found that organisations that were providing great personalised care and support based were often on the margins of mainstream commissioning and decision making. Conscious effort is required to reach out so that co-production reaches all groups and communities that have a stake and contribution to make in improving social care. Clear plans and commitments for ongoing engagement and co-production are required - nationally and in local areas - to ensure fair access for all.

1.10.               At all the levels of co-production, but particularly at the strategic level, progress will be dependent on putting in place a range of supports that enable good co-production to take place and flourish. First and foremost, it requires some upfront investment in resources (time and money) to create an infrastructure that supports co-production. Good co-production shouldn’t depend on a few individuals and the aim should be to create a constantly renewable pool. Investment is needed to make sure people are properly supported and recompensed for their time and expertise to take part. Given the overall expenditure that goes to social care and health, the investment needed will be modest. The development of Integrated Care Systems provides an opportunity for some of the costs to be shared between councils and health organisations.

1.11.               There is an important role for intermediate organisations such as disabled people’s/user led organisations and voluntary, community and social enterprise organisations to convene and collate the views of people with lived experience to support co-production.

1.12.               The art of good co-production includes softer less tangible essential elements such as having the right values and behaviours, including respect, trust; allowing time to get to know each other and the strengths everyone brings; and establishing ‘ground rules’, like being honest about what is up for grabs. The process is rarely linear and can be messy, so it requires persistence all ways round.

2. It is often difficult for people who draw on care and support and carers to exercise choice and control if they do not know what good support looks like or what kinds of care and support might be available? What information and support could be helpful to address this and how could it be made available more easily?

Information and Advice

2.1.                     A central problem today is that information and advice can tell people only about what’s already there. For things to change, people need to create the ‘demand for different’. To support that people need to know about person-centred thinking and planning (as described in Making it Real) so they can work out what a good life looks like and then use the information and advice systems to find it, or be able to approach services for help in creating it. So, information and advice about person-centred thinking is key, but rarely available.

2.2.                     Taking into account the point above, rather than specify precisely the sort of information and support required, it is better to set out some guiding principles and basic approaches.  Our previous comments on information and advice stand. Making it Real sets out what good information and advice provision looks like and what organisations should do to achieve it.

2.3.                     Systems and approaches to information and advice should make it easy for people to navigate the system for themselves, with support from family, friends and peers rather than having to exclusively rely on information and advice from councils and other statutory organisations such as the Care Quality Commission (CQC), although they should be straightforward to access when needed.

2.4.                     Beyond basic information that is universally available, information and advice needs to be tailored to individuals. As an example, TLAP’s report on Personalisation in Black, Ethnic and Minority Ethnic Communities highlights the role that organisations rooted in their communities can play: they were seen by the people using them as trusted organisations providing trusted information.

2.5.                     People want to be supported to understand the system and local processes, as well as their rights and how to challenge decisions and poor practice. There should be investment and support for advocacy (including self-advocacy) and information and advice provided by disabled people’s organisations, user led organisations, peer support groups/networks, and the voluntary, community and social enterprise sector.

2.6.                     Websites should meet high standards of accessibility and content, designed and developed with the people who it is intended will use them. Information provision should not be exclusively via digital means, as this will worsen existing inequality.

2.7.                     On a wider digital note we know that developments are beginning to transform many health and care services and the ambition of the White Paper is to accelerate this, building on the increase in the use of digital technology during the Covd-19 pandemic.  However, it is important there is proper consideration of the use of digital technology in care. It will require the right investment in equipment and training and, like other forms of care and support, should be designed and developed in co-production with people for whom it is intended. It should enable and not replace relationship based care and support or other non-digital approaches. As an example, a family carer pointed out that during Storm Eunice that struck in early 2022 many people lost their digital network connections, but their landlines worked which was a vital way of people keeping in touch. A hybrid approach to digitalisation may be the best approach.

2.8.                     People should have the opportunity to play a full part in improving information and support to create something better for everyone who draws on care and support and everyone who works in social care too.

Support

2.9.                     People consistently tell us information about their options and about how social care works is poor and inconsistently provided to them. We know that at the assessment stage often the full range of choices and options is not always shared with people. So beyond adult social care being ‘invisible’ the different options for people to get care and support the support right for them can also be invisible.

2.10.               The LGA and TLAP have recently conducted a survey of people who use a direct payment to employ their own workers, personal assistants (report forthcoming). People themselves have described the 140,000 or so personal assistants as 'the forgotten workforce'. There were tangible examples of this during the pandemic where, at the outset at least, direct payment holders and personal assistants were largely invisible to the government’s response in terms of guidance and support.  Through the setting up of the Self-Directed Support Reimagining Group through the Chief Social Worker’s office this has improved with policies and guidance being developed to cover the issues of most importance to direct payment holders. This is a model that might be more widely adopted.

2.11.               The principles and policies of self-directed support enshrined in the Care Act 2014 are not being consistently implemented in practice and key aspects like flexible use of direct payments, underpinned by statutory guidance, are often not supported by Councils. As previously mentioned TLAP working with the LGA and ADASS has recently produced a series of resources showing how to make the process of getting and managing a direct payment easier, based on developing good practice.

2.12.               The numbers of people taking a direct payment is falling which is of significant concern[17]. There is no evidence that this is a plateau and steps should be taken to make direct payments an easier option. We absolutely need to address misplaced assumptions that they are not suitable for certain groups such as older people. This should include acceptance that employing a personal assistant is not the only way a direct payment can be used. Local areas should be investing in making sure that people can get good advice and support to manage a direct payment.

2.13.               We also think there is a need and scope to expand Individual Service Funds, which allow providers more flexibility to agree the support they will provide with the person as a legitimate half way house for those who don’t wish to manage their own budget, but an alternative to leaving it to the council to manage on their behalf.

2.14. The range of options that people can choose from to meet their care and support need expanding and diversifying, so that more people can properly self-direct their own support. This will require bold changes to commissioning practice so that support is shaped in co-production with those drawing upon care and support. This should include specific action to support small and micro-providers to have a level playing field with larger providers operating at scale.

2.15. Delivery, implementation, and assurance should be shaped and set within the personalised care and support framework of Making it Real, with priorities agreed in co-production with local people who draw on care and support for themselves, or for their families and friends.

3. We recognise that people with long-term conditions require different support at different points in their lives and that transitions, such as change in health needs, moving from children to adult services, leaving education, starting a job or moving home, can be particularly challenging. Can you describe the key moments of transition from your experience? How have the formal processes worked during these periods of transition? What could or should have been in place to make these transition moments easier?

3.1.                     NCAG colleagues shared both poor and good experiences of transition when leaving education. Concerning the former, as young adults leaving further education two members recalled receiving little or no support and faced having to rely on family and friends to find their way. This was some years ago, though there was not much confidence of things having improved dramatically since then. The availability of advocacy so that people know their rights and options was cited as one thing that could have made a positive difference.  One parent carer experienced a positive transition. Planning for leaving education had started before legally required, with a transitions social worker who had the time to get to know her son and the family and had been trained in person-centred approaches. This positive experience was not felt to be consistently replicated across the country and concern was expressed that people without available or willing family carers were at particular risk of experiencing difficulties.

3.2.                     It was noted that the term ‘transitions’ tends to be a term used by the services and systems, rather than people themselves. The section in Making it Real on ‘Staying in control - when things need to change’ describes a person-centred approach to transitions.

4. What does truly co-produced care look like for younger and for older people with differing challenges and needs? Have you got any good examples to share?

4.1.                     There is a problem with seeing people in groups (such as younger and older) as this can lead to an undue focus on process. Good co-production is about values and behaviours and the cultures and conditions that underpin the processes. If organisations have the right values and behaviours co-production will naturally flow. 

4.2.                     The guiding principles and essential approach for achieving good co-produced care and support are the same for all people irrespective of age or needs, and should be in line with the Care Act and supporting guidance and other relevant legislation such as the Mental Health Act, Mental Capacity Act and Liberty Protection Safeguards (forthcoming). Key features include:

4.2.1. Assessments as conversations that based on what matters most to the person rather than narrowly eligibility driven

4.2.2. Strengths based approaches without using this as an excuse not to provide support

4.2.3. Allowing sufficient time to carry out assessments and the planning of care and support using the language and documents that people understand and can relate to

4.2.4. Proper person-centred planning

4.2.5. Not rushing people at a time of crisis to make permanent or long lasting decisions

4.2.6. Following legislation and good practice around determining capacity and the making of best interest decisions

4.2.7. Access to good information and advice, plus advocacy (including self-advocacy)

4.2.8. Meeting people’s communication needs

4.2.9. Appropriately involving people who know and care about the person.

5. How can we design care and support arrangements which work both for the person drawing on care and support and those who care for them?

5.1.                     It is not clear whether this question is about unpaid family carers or paid care workers, or both. Regarding the former, the responses to question in the carers section apply.

5.2.                     Fundamentally, there has to be recognition of entitlement to some degree of life away from caring responsibilities, not confined to space to do the shopping or hair appointments, but doing things that maintain or bring friendships, human connection and purpose, and enjoyment to life.

5.3.                     In relation to formal care, as part of creating the conditions for diversifying and building resilience in the adult social care market, we should look at re-casting the function and place of commissioners. Less at the centre of the social care universe; more driven by the gravitational pull of lived experience in neighbourhoods, with intelligence-led decision-making that can only be realised when close enough to community.

5.4.                     The role of data and intelligence is important. The public sector is awash with data, but with little of it converting to intelligence on what kinds of support are needed. Key data and insight is often unavailable or cannot easily be shared amongst partners limiting timely and/or creative solutions to emerge.

5.5.                     TLAP is aware of and connected with some opportunities that could support and signal the renewed focus on person-centred choice and control in the short term. They are:

5.5.1. Some councils using Making it Real to specifically support changes in social work practice to make it more person-centred.

5.5.2. A cluster of councils seeking to improve their direct payment offer using TLAP resources to inform their work

5.5.3. Some councils and care and support organisations seeking to use Individual Service Funds to improve their commissioned services offer

5.5.4. A few councils seeking to shift their commissioning approach to one focused on outcomes and away from purchasing on a time and task basis

5.5.5. A range of innovative models of care and support demonstrated and documented on TLAP’s Innovations in community-centred support that can be taken up and spread.

5.6.                     There is a need for transition support and funding to assist moving from a still largely service based system to one based on meeting individual needs and outcomes.

6. How can people who draw on care and support and carers both be involved in the planning of future services?

6.1.                     As argued above, the principles and essential approach to involving people who draw on care and support and unpaid carers are the same.

6.2.                     It should be a clear expectation that at all stages from planning, development and review people who draw on care and support and unpaid carers should be involved. This requires an investment in time and money to create a proper infrastructure as stated earlier in our response. This approach and behaviour should be adopted and modelled at the national level, within the DHSC but more widely across government.

6.3.                     We see it as particularly important to focus on commissioning as good commissioning is dependent on meaningful co-production. Co-production should be seen as the single largest element of the commissioning cycle and requires investment in local capacity and capability to co-produce market-shaping strategies.

6.4.                     Councils and organisations providing support should be incentivised, through investment and assurance mechanisms, to build local capacity and capability in co-producing commissioning activity, including market shaping.

6.5.                     The CQC’s single assessment framework which will be applied across regulated providers (care and health); local authority assurance; and oversight of Integrated Care Systems will include seeking evidence and reaching judgements on how well people are contributing to shaping support and services. In performing this role the CQC will itself draw on people with lived experience.

6.6.                     In all these areas the speed of progress will partly depend on being prepared to share and learn from each other: between organisations and places, always drawing on the insights and experience of people who draw on care and support and unpaid carers.

Tim Parkin, Senior Policy Advisor, on behalf of Think Local Act Personal (TLAP and National Co-Production Advisory Group (NCAG) –

27 May 2022