AGE UK – WRITTEN EVIDENCE (ASC0119)

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Age UK is the country's largest charity dedicated to helping everyone make the most of later life. The Age UK network comprises of around 150 local Age UKs reaching most of England. Each year we provide Information and Advice to around 5 million people through web based and written materials and individual enquiries by telephone, letters, emails and face to face sessions. We work closely with Age Cymru, Age NI and Age Scotland. Local Age UKs are active in supporting and advising older people and their families in the care market.

Introduction

Age UK routinely gathers insight and data on the experiences of older people, many of whom have care needs (which may or may not be met) or draw on care services.

We also speak to many older people who receive support informally through family members, friends or neighbours, and take tens of thousands of calls every year about social care through our advice lines.

Over the last two years, capturing those experiences has become vitally important to our work in supporting and advising people during the pandemic, and we conducted several rounds of research to better understand how people were coping and to identify and help find solutions for the many challenges that they face. We have drawn upon some of the findings of the most recent unpublished wave of research[1] together with our findings from previous waves of research and the responses from our surveys of older people [2], selecting questions with particular relevance to the experiences of older people. We have also reflected the findings of a separate study conducted in March 2022, looking specifically at how people’s perceptions of social care have changes since 2019[3].

1.0 One of the fundamental challenges facing adult social care is that it is invisible. Do you agree ?

1.1 The call for evidence points to an ‘entrenched invisibility’ of Adult Social Care and the impact of this on the lives of people who draw on care, their carers, and their families.

Although we believe that there is a lack of understanding about how the system works (which the Government’s White Paper does acknowledge)[4] our research suggests that social care as a concept is perhaps now more visible than ever before.

1.2 Social care still isn’t as visible as it should be, and those who provide care to a friend or loved one informally tell us that they feel unsupported and are experiencing significant pressure, but we would question whether the committee’s central question addresses the real challenges. The chronic underfunding of a system[5] which is overly reliant on an undervalued, unpaid army of carers and a demoralised, depleted paid workforce is, in our view the most pressing issue.

1.3 Support for unpaid carers is also disappearing, whether that is funding for local authorities to deliver care packages, respite services, day centres or lunch clubs, or the benefits that those who provide unpaid care receive[6] which are woefully inadequate in the face of the current cost of living crisis.

1.4 The call for evidence is right to ask how unpaid carers can be supported to continue working if they wish to do so, but while there are certainly many younger people who are caring for older relatives, our polling and survey work has focused on older people. Many unpaid carers are retired from paid work, (From an ONS survey conducted in March 2021 across the UK, almost 2/3 of unpaid carers had retired from paid work) [7]. We have no evidence that the people who responded wanted to return to work, merely that they wanted to be able to access more support. For older unpaid carers facing rapidly increasing costs with no commensurate increase in their pension or benefits, it could be difficult to unpick a desire to work from an economic necessity to do so.

1.5 Applying for benefits was raised as an issue through our surveys too – one respondent described the process of applying for PIP as a ‘dreadful and demeaning process’ another said ‘he gets nothing although we should claim attendance allowance for him, but don’t know how’. Carers UK recently reported that the financial pressures on unpaid carers have become ‘untenable’ [8], and we agree.

1.6 Care workers are underpaid and undervalued, and continually rising turnover and vacancy rates in the care sector are impacting on the ability of people who need formal care services to get the help that they need[9].

1.7 The Government has not ‘fixed’ social care with its reforms. The Health & Care Levy fails to bridge the funding gap for local authorities, prioritising NHS backlogs over social care. The Fair Cost of Care Exercise which promised to level the playing field is underfunded [10]. The policies put forward in the ‘People at the heart of Care’ White paper are promising, and we welcome the focus on individual choice and control, but without significantly more money, it is difficult to see how access to tailored care and support at a fair cost will be achievable. The Government’s reforms appear far less likely to make a positive impact than we initially hoped it might.

2.0 Access to care services

2.1 While some of our research suggests that Social Care as a concept is perhaps more visible, the ‘people at the heart of care’, those who work in the sector, personally draw on services or the dedicated people who provide unpaid care for relatives, friends and neighbours, are often less so.

2.2 Many of the problems that existed before 2020 have undoubtedly been exacerbated, not only by the pandemic, but by the depletion of the health and care workforce which although accelerated somewhat by the pressures of the last two years, this is at least in part due to economic conditions, and the availability of better paid low skilled work in other sectors.

2.3 Age UK estimated that there were 1.6 million people living in England with unmet needs in 2019. Although we have not yet completed our analysis of unmet need for this year, the four waves of research that we have conducted over the course of the pandemic suggests that there continue to be large numbers of people whose needs are either not met at all, or whose social care needs are only partially met.

2.4 Our research also tells us that when people develop needs, they are often confused about how to access the care and support, are worried about being able to access support or struggle to get the right advice or an assessment.

One survey respondent from our fourth wave of research said to us: ‘care is too hard to access, - every conversation we have with admin is like talking to the wall’ another simply said ‘I cannot understand the form’

This was a common theme. One person told us ‘I haven’t been able to access any [care]. The system is complex and when you’re exhausted it’s impossible to focus enough to batter your way through it’

For older people struggling with activities of daily living and possibly also caring for another family member, dealing with ‘mind boggling’ paperwork feels like an insurmountable obstacle. We are very concerned that social care charging reform will introduce extra complexities into an already inaccessible system.

2.5 For those who do manage to wade through the admin, long waits for assessment are common. Problems with access reported through our survey work and polling are supported by data gathered elsewhere – ADASS very recently reported that 28%[11] of people who had asked for a social care assessment had been waiting six months or more – a significant proportion of those will be people over the age of 65. And some of those waiting on an assessment will have sadly died without receiving any social care - In the year 20/21 37,370 died without receiving the care they requested [12], compared with 30,555 the previous year and 28,170 in 2017/18.

2.6 Age UK’s recent survey work shown us that in general, awareness of social care as a concept has increased. Media coverage of the challenges of managing Covid in residential care settings, and recent announcements around social care reforms may account for some of that increased societal awareness.

We wouldn’t therefore agree that older people’s adult social care is completely invisible, but we believe that people are really struggling to access paid for care, that while they are waiting for an assessment or trying to access services, they can feel unheard.

3.0 Planning future care needs

3.1 Alongside that increased awareness however, our research showed that there is a belief that the system is broken, and some even reflected that acknowledging a need to drawing on care risks your home and savings. Some of the people we heard from through our survey and from other research were hoping that family members would help if things became difficult. Further analysis of this revealed that these expectations were not always rooted in an understanding of how such an arrangement might impact on family dynamics.

3.2 A widespread reluctance to engage with the negative aspects of ageing contributes

to a reluctance to consider possible future Social Care needs, and that in turn contributes to a lack of understanding of the system (for example how it’s accessed and paid for). In the context of a cost-of-living crisis, thinking too far ahead is difficult and for people who are still managing with most of their normal daily activities and not a priority. There is always someone older, frailer, or worse off.

3.3 Planning for future needs – as far as anyone can ever plan for an uncertain future and a potential loss of independence - isn’t something that people want to devote a lot of time to. If that is to change, systems must look and feel more responsive, and better equipped to enable older people to live out their later years with dignity.

4.0 Better Support for Unpaid Carers

4.1 For unpaid carers the contribution that they make can easily be less visible. Carers can also struggle to get their own physical and mental health needs met, and to be heard by the professionals whom they regularly engage with. Caring can have an adverse impact on a person’s health and wellbeing, and it is important that carers are recognised and supported, both as partners in care and people with support needs.

4.2 One person responding to our survey told us ‘Services [are] almost impossible to access. No respite as nobody seems to care…Unpaid carers were and still are treated badly, we’re invisible to authorities and get very little help’

And the impact on the wellbeing of unpaid carers struggling on their own is clear. One man shared his experience on September 2021, telling us, ‘Looking after my terminally ill wife with no help from anyone has completely crushed me, I will never get over it’

4.3 Unpaid carers have paid a particularly heavy price for their dedication in recent years. Already a socially isolated group, some have told us that they feel unable to reunite with friends and other family members because of a need to protect their vulnerable loved ones, and that they were wary too of seeking formal support because of the risk of covid.

One person responding to our March 2022 survey said ‘with covid as it is I really don’t want anyone else coming into the home’.

4.4 Government messaging over the course of the pandemic has not been helpful in this regard. The Institute for Government points to the ‘Haphazard communication of key public health messages has switched between alarm and reassurance, while failing to drive home key points such as the risk of gathering indoors’[13] – the ‘blurring of policy decisions and expert advice’ making it extremely difficult for unpaid carers to know how best to keep their loved ones safe.

4.5 The exclusion of unpaid carers from routine, free testing since the universal free testing offer was ended at the end of March 2022 was a particular blow to all those who have devoted their time to caring for vulnerable friends and relatives over the last two years, and has undoubtedly contributed to that feeling that unpaid carers and their contribution is not valued.

4.6 Almost half of older carers who we spoke to reported that the in March 2022 said that they themselves were living with one or more long term condition, and 51% of older carers said their long-term condition(s) affected their ability to carry out activities of daily living, an increase of 5% from our September 2021 round of research.

5.0 Respite

5.1 Some respite & support services were starting to fall away pre-pandemic [14] (Age UK State of Health & Care 2019 p33), others moved online during lockdown and older carers, many of whom lack confidence or access to technology tell us that these services have been slow to return to face to face, have been ‘cancelled’ altogether, or are ‘impossible to access’.

5.2 We welcome the Government’s commitment in the social care white paper to work with the sector to address barriers to accessing respite services for unpaid carers[15] (p.59, 5.28) but we are concerned that progress in this space may come too late for those who are struggling right now, and that the impact of informal caring arrangements breaking down through a lack of respite and support for those who care could put further pressure upon an already strained system.

5.3 Our research shows a difficult picture for those needing respite and support. While 83% of carers told us that they had not needed to access respite care or support, day services, formal social care support at home or carers support group, the need for these services has increased since September 2021, when 87% of those polled told us they didn’t need to access support. And while the need is increasing, it appears that the availability is still an issue.

Only 1% of carers have needed and been able to access respite care or support (for 24 hours or more), in the three months up to March 2022. This figure has not changed since our previous wave of polling in September 2021. 

One in 30 (3%) carers have needed and been able to access in person day services, in the three months up to March 2022. This number is up from less than 1% September 2021. 

Only 8% of carers have needed and been able to access formal social care support in the home, in the three months up to March 2022. This is the same number as in September 2021. 

Only 6% of carers have needed and been able to access carers support groups, either in person or virtually, in the three months up to September 2021. This is the same number as in September 2021. 

Crucially of those polled who were themselves providing care, 80% were worried that they might not be able to continue.

5.4 We’ve seen too that the pressure on carers has increased in recent months. Our recent polling of unpaid carers showed that 59% felt tired because of the care or support they provide. This number has increased by 10% from 49% in September 2021. 

Almost half (48%) of carers that we spoke to felt anxious. This has increased from 40% in September 2021. Two in seven (29%) carers had felt overwhelmed. This number has increased by 1% since September 2021. 

6.0 Access to Health Services and the impact on carers

6.1 Difficulties in accessing GP appointments was a particularly strong theme throughout each wave of our research. In our fourth wave of polling (March 2022), 52% of those with Long- term conditions and 51% of carers told us that they were very concerned about their ability to access their GP.

6.2 Unpaid carers rely on advice and consultations with GPs not only for their own health needs, but for those of the person they are caring for. It is vitally important therefore that local systems and central government prioritise solutions to the primary care workforce and estates issues that are impacting not only on carers but all those who draw on care.

6.3 Carers provide a vital service and should have access to the health services, respite services, and professional advice and support they need in order to continue in their role for as long as they wish to do so.

7.0 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?

7.1 This call for evidence asks how future reform of the adult social care system can best address the differences between adult social care for younger and older adults, but Dignity, quality of life, choice, and maintaining independence matter to the people who draw on care whatever their age. 

7.2 Older people may of course have different needs to younger adults who access care. When we talk about social care for older adults, we are often particularly referring to personal care – help with everyday activities such as washing, going to the toilet, or preparing a meal.

7.3 Older people are much more likely to be living with dementia, (prevalence in the over 65s is one in 14 and one in 6 in those over 80 according to NHS data) [16] so their care needs may change as their disease progresses. They may also be managing Multiple long-term conditions [17].

7.4 Physical frailty, general ill-health and a lack of independence can lead to social isolation too. Sight or hearing loss can also make engaging in social situations difficult. Those feelings of isolation were undoubtedly exacerbated by Covid restrictions, and our survey and polling showed us that carers and care recipients alike were greatly impacted by lockdowns.

8.0 End of Life care and the difference for older adults

8.1 Many older people draw on care services at the end of their life. They may have a progressive life-limiting illness, requiring different levels of health and social care at different points in their illness, but it is important to remember that many older people do not have a specific terminal diagnosis. They may nonetheless require palliative or end of life care because of their advanced age and frailty, and that care is often delivered in a nursing or residential care home.

8.2 Systems are focused on improving end of life care for those with a diagnosed life-limiting illnesses but are less well equipped to meet the needs of older people who are nearing the end of their life due to frailty, and therefore have less predictable trajectories.

8.3 Reluctance of health professionals to identify someone as nearing the end of their life when there is no clear underlying pathology can lead to traumatic, unplanned hospital admissions and inappropriate care. It can also make accessing palliative and end of life treatments more difficult for older people who need it.

One person who responded to our recent survey told us that help for her terminally ill mother was ‘non-existent, and that no-one listened that she needed help or gave me help’.

8.4 ICSs should ensure that early identification is prioritised, and that barriers to accessing palliative and end of life care are broken down wherever possible. Above all their must be a focus on enabling all older people to die well and with dignity, and in a place of their choosing.

9.0 Digital Transformation & Older People

9.1 Digital transformation is one area where younger and older adults may have different needs. For older people, falls prevention technologies can be lifesaving, and there are many digital aids and smart technologies that can help people to live well at home for longer – many of these are particularly helpful to people living with dementia, offering peace of mind to families and carers.

9.2 Some technologies with the potential to empower younger adults and carers could isolate older people who draw on care or have needs, and digital solutions should not become a substitute for human interaction. Care must also be taken to ensure that future reform in the digital space neither excludes older people nor widens inequalities.

10.0 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 for older adults who draw on care?

10.1 While many of the people who responded to our recent surveys were receiving care or caring for a family member,(11% of those polled in March/April 2022 were caring) existing services are developed with an assumption that friends and family will step up to fill the gap, and while the Adult Social Care Reform White Paper speaks of Empowering those who draw on care and their Carers, it does not make specific reference to those who age without children, nor is there recognition that those who do not have children are more likely to find themselves in residential care.

10.2 People who are ageing without children are also between 20 & 40% more likely to offering upward intergenerational support, with all the difficulties that caring brings in terms of employment, stress and isolation [18]

10.3 Understanding what it means to be ageing without children and how it affects people in later life is crucial for organisations who plan and commission services for older people, particularly in view of the anticipated increases in this cohort, so it is disappointing that more focus was not given to how systems might meet the needs of older people without children in the recent white paper.

10.4 The committee has already heard compelling evidence from ‘Ageing Without Children’, which reflects our own concerns at Age UK that people without close family could slip through the net. Physical proximity to family for those who do have children is a factor too. In focus groups that we conducted earlier this year[19] participants suggested that many children now live further away from their parents. They also told us that their children ‘are busy people’ they didn’t want to obligate their children to provide care for them.

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

11.1 As a first step, partners in Health & Care must fully embrace the integration process, leave their siloes and recognise the interdependent nature of the health and care service. The NHS grinds to a halt without a functioning, responsive social care sector. 

11.2 Conversations at ICS level are currently very inward-looking, and governance focused in many areas, and the Voluntary sector are still struggling to find where they can influence – structures developed in isolation risk excluding groups with valuable insight into the social care landscape and how to reach into communities at place and system level. The relationships that were built and strengthened between VCSE, local authorities and NHS partners during the pandemic should be prioritised, and co-production with VSCE and the voice of people who draw on care and support services must be at the heart of our reformed, integrated health and care system.

12.0 What effect has the COVID-19 pandemic had on adult social care?

12.1 Age UK is in the process of assembling detailed evidence for submission to the statutory public inquiry on Covid-19 which will include our analysis of the effect on social care but it is clear that Adult social care has been impacted in many important ways by the pandemic.

12.2 Workforce challenges that were evident before Covid-19 have been exacerbated by the departure of exhausted care staff and registered managers, (often to better paid jobs in retail or hospitality) and these shortages in turn make it harder for older people to access care. Local authority staffing has also been impacted, and people have found it hard to access advice, assessments, and support throughout the pandemic as we have reflected earlier in our submission.

12.3 While it is important that we recognise the challenges of balancing public health protections with the need of residents to have meaningful contact with their loved ones, the restrictive care home visiting practices instigated in early 2020 tell a story about pre-existing attitudes towards older-people’s rights, and attitudes to those who draw on social care.

12.4 Covid-19 has shone a light on the rights deficit for older people who draw on care and those who provide care informally, the lack of individualised approach to decision making, and the problems that residents in care settings, those who draw on care at home, unpaid carers and friends and family members of care recipients face when they need to raise a complaint.

12.5 The CQC is clear that ‘providers and systems must keep people at the centre of their care’[20], yet during the pandemic, that focus on people and individualised care was not always evident. Two particularly egregious examples of this lack of individualised care were the wholly inappropriate blanket applications of DNACPRs reported[i] in early 2020, and the decision to discharge patients into care homes in March 2020 without testing.

We sincerely hope that lessons will be learnt from the difficult experiences of the last years, and that future reform, both in terms of integration and social care funding, will improve the lives of those who draw and care, their carers, and their loved ones.

27 May 2022