Providing care for loved ones is rewarding, it can also bring physical and emotional challenges. Jessica Sellick investigates.

Carers or caregivers not only reduce demand on health and social care systems but they often do so with very little (if any) support. How can we better understand the role that carers and caregivers play – and what more can be done to recognise and support them, especially in rural areas? Jessica Sellick investigates.

Most days carry announcements and articles about social care – and of a crisis in social care. Many of the discussions are framed around reform (of health and social care systems), funding (how many millions do we need now and how many billions by 20 something), the need for early intervention and preventive work (to maintain independence and reduce demand), involving users in the design and delivery of services (e.g. the Involvement Hub) and sustainability (44 STP footprints). This is accompanied by a plethora of organisations: CCGs, HWBs and PHE; and a maze of clinical, critical, care or integrated care pathways. Forgotten or hidden away within many of these discussions and debates are people who are carers and caregivers.

Back in June 2015, NHS England’s Director for long term conditions, Dr Martin McShane, wrote a blog describing how carers “make a critical and underappreciated contribution not only to loved ones, neighbours and friends, but to the very sustainability of the NHS… [NHS England is an active member of Carers UK/Employers for Carers UK]…Is that enough? Of course not…What we can try to do at the centre is make it easy for people to say ‘we have done this because of the system, not despite the system’.”

In September 2015 the King’s fund published Home Truths. The report sets out three trends that will continue to have an impact on carers and caregivers. Firstly, social care providers are under unprecedented pressure as a result of grant reductions from local authorities, workforce shortages, higher regulatory standards and the introduction of the National Living Wage. Secondly, the social care system is surviving by relying on people who can fund their own care and by local authorities funding support to protect the most vulnerable older people with the highest needs. This means access to care increasingly depends on what people can afford to pay– and where they live – rather than on what they need. Thirdly, Government and local authorities want older people to be independent and remain in their own homes for longer by drawing on the resources of their families and communities. This means carers and caregivers may be expected to do even more.

Between March and July 2016, the Department of Health published a survey to capture the views of carers, those who have someone care for them, businesses, social workers, NHS staff and other professionals that support carers on how a new Government strategy for carers can do more – one which reflects the health and financial concerns they have, and gives them the support they need to live well whilst caring for a family member or friend. Alongside this, the Communities and Local Government Select Committee has been carrying out an Inquiry into adult social care – examining whether the funding available is sufficient.

While alleviating pressure on the social care system now gains public and policy attention, a cocktail of factors are predicted to put the system under even greater pressure in the future . IPPR’s report ‘Generation Strain’ describes a ‘family care gap’ – where from 2017 the number of older people in need of care will outstrip the number of adult children for the first time. Carers UK and Age UK’s report ‘Caring into later life’ found a 35% rise in those caring aged 65+ years in England, while the number of carers aged 85 years and older in England has doubled over the last ten years.

For me, the plethora of reports, blogs, commentaries and inquires provide evidence of how our capacity to care is being overwhelmed by need. But what do we actually mean when we talk about ‘care’, who are the carers and caregivers, what’s the cost of care, and what are the implications of Home Truths for rural areas? I offer four points.

Firstly, what do we mean by care?

Social care is framed around the provision of social work, personal care, protection or social support services to children or adults in or at risk; or adults with needs arising from illness, disability, old age or poverty. The definition can be tied back to the National Health Service and Community Act 1990 which describes supporting the ‘activities of daily living’; with provisions such as the establishment of Personal Medical Services (1997) and structure of the NHS in England (2006) enacted since then. As a concept social care can be traced all the way back to the Elizabethan Poor Law of 1601.

According to Age UK, social care means help and support – both personally and practically – which can enable people to lead as independent a life as possible. In practice, it covers a wide range of services, both private and public, and can include anything from help getting out of bed and washing through to care homes and drop-in centres.

Health care on the other hand, is concerned with the treatment, control or prevention of a disease, illness, injury or disability and supporting the after care of a person with these needs. This is set out in the National Framework for NHS Continuing Healthcare and NHS Funded Nursing Care.

According to the NHS, the kind of support you get depends on your needs i.e., the type of condition you have or the severity of your disability. For example, if you have trouble walking you may require some equipment to maintain your mobility and independence.

Care Conversations describes different types of care: in-home care, adult day care, respite care, assisted living, skilled nursing care, medical care, nursing and rehabilitative care, personal care, dementia care, veterans care and hospice care.

In practice, many carers and caregivers find themselves in dialogues with assessors about whether the person they care for has health care needs or social care needs and the type(s) of care they require. If an individual requires some degree of ‘nursing care’ is that a health care need or a social care need or both? This distinction is important because the NHS (health care) is free at the point of need, while payment for home support and care homes is means-tested (social care).

Much work is underway to try to join up these organisational and delivery structures. The Barker Commission on the Future of Health and Social Care in England, for example, recommended a simpler pathway for service users to replace the current health and social care maze. Current examples of this include the Better Care Fund (encouraging financial integration between health and social care services); New Care Models (led by NHS England with 3 vanguards covering integration between health and social care); Integrated Primary and Acute Care Systems (joining up GPs, hospitals, community health and mental health services); and Multispecialty Community Providers (testing new ways to move specialist care out of hospitals and into the community).

While integration may move us towards a more person-centred, coordinated and place based approach to care; for carers and caregivers the dedication and scale of commitment of the tasks and activities that they perform (often on a daily basis) needs to be recognised, valued and supported.

Secondly, who are the carers or caregivers?

The Department of Health defines carers as ‘people who look after a relative or friend who needs support because of age, physical or learning disability or illness, including mental illness’; and informal carers (also calling them unpaid carers) as “people who look after family members, friends, neighbours or others because of long-term physical or mental ill health or disability, or care needs related to old age. This does not include any activities as part of paid employment.”

According to the Carers Trust a carer is ‘anyone who cares, unpaid, for a friend or family member who due to illness, disability, a mental health problem or an addiction cannot cope without their support”. The Trust estimates there are around seven million carers in the UK (equating to 1 in 10 people) and that three in every five people will be carers at some point in their lives in the UK. Carers UK carry out an annual survey of carers to build a picture of the state of caring in the UK. They believe 1 in 8 adults (around 6.5 million people) are carers – with 6,000 people taking on a caring responsibility every day.

In May 2015, the UK Government’s Foresight Future of Ageing project published its report on volunteering, informal care and paid employment in later life. Data for England revealed more than one in six men and a quarter of women aged 50-69 years had provided informal care to someone in the past week. The report suggests informal caring roles are likely to have a negative impact on both participation in paid work and on wellbeing – but that informal care is an increasingly important complement to formal care.

The Carers (Recognition and Services) Act 1995 defines a young carer as ‘children and young people (under 18) who provide or intend to provide a substantial amount of care on a regular basis’. In February 2016, the Department for Education published a report on the lives of young carers in England. This identified 166,000 young carers in England, revealing how while caring was seen to be a very rewarding role by the majority of young carers – regardless of age or length of time spent caring – it also had adverse effects: linked to anxiety, stress, tiredness, strain within family relationships, restrictions in social activities and under-engagement in education.

In academic circles, different types of carers have been identified and typologies developed. Research into Alzheimer’s disease and Parkinson’s Disease reveals three management styles carers adopt concerning the’ burden of care’: adapters, case managers or struggler. In dementia care, three types of caregiver have been identified: ‘role-shift’, reflects care-giving where cognitive deterioration results in changing roles and uncertainty; ‘consumed by care-giving’, refers to those caring for persons with dementia-motor decline that greatly increases worry and isolation; and ‘service use’ where formal support is needed to help caregivers cope with daily responsibilities and behaviour changes.

Within these definitions and numbers it is important to remember that people are often thrown into their caring role, with little time to think about what it involves or how to seek help and support. Carer/caregiver and those they care for may be reluctant to recognise these roles. Some people may be anxious or hesitant to disclose their caring responsibilities to others in their school, workplace and community.

With the implementation of the Care Act 2014 and Children and Families Act 2014, there is now a need for local authorities to identify and assess the support needs of carers, regardless of the type of support they provide.

Section 10 of the Care Act 2014 makes provision for any carer to have a carer’s assessment. The assessment looks at any assistance that the carer requires to continue to provide care, even if the recipient of their care refuses an assessment for themselves. Section 20 of the Act places a legal duty upon local authorities to meet carers needs if these fall within national eligibility criteria. To meet the costs of these new rights, Government has provided over £100 million to local authorities in 2015-2016, rising to around £300 million by 2019-2020.

Feedback on carers’ assessments suggests 1 in 5 carers received little or no helpful information or advice and felt they did not know where to go for support with caring; but 35% of carers who had received an assessment in the last year felt that the support they needed to look after their own mental and physical health alongside caring was properly considered. 8 out of 10 carers buy or receive some form of practical support with their caring role such as equipment, technology, a break from caring or help from family and friends; while 1 in 5 carers who provide 50 hours or more of care each week receive no practical support at all.

Friday 25 November 2016 was Carers Rights Day, this brought organisations across the UK together to help carers in their local community know their rights and find out how to get the help and support they are entitled to. On the same day, Carers UK released new research highlighting how carers are missing out on support.

Many RSN members are aware of national and local organisations providing information, advice, support, services and campaigning on behalf of carers and caregivers. For example, Rethink Mental Illness – a national mental health charity – has been running a “Hidden Carers Campaign” with 300 carers living in Cambridgeshire and Peterborough making contact with voluntary carer support groups. Cornwall Rural Community Council provides a Carers Time Out Grant; and Rural East Suffolk Carers Action Network provides social/recreational and educational activities for carers supporting people primarily with learning disabilities.

Thirdly, what is the cost of care?

According to Carers UK, less than 1 in 10 carers have been asked to pay for support services for themselves, although over a quarter of those receiving social care have been asked to pay for it – with nearly half of those being asked to make a financial contribution saying they are struggling to afford to pay for it. The State of Caring 2016 report found the value of unpaid care carers give in the UK is worth approximately £132 billion – equivalent to the value of health spending in the UK (estimated at £134 billion).

The Adult Social Care funding: 2016 state of the nation report produced by the Local Government Association (LGA) reveals how between 2011-2012 and 2015-2016 councils had to manage a £5 billion funding gap in social care. This led to net spending staying constant – it was £14.5 billion in 2011-2012 and £14.1 billion in 2015-2016. While Government has made additional funding available for social care (e.g. improved Better Care Fund, iBCF), the LGA argues much of it is back-loaded, based on an ambitious set of assumptions that cannot be guaranteed (e.g. that all councils will use the precept to the maximum amount) and needs to be contextualised by wider pressures on council funding overall which is bringing the system to crisis point. Even using the Government’s full set of assumptions, the LGA estimates that adult social care faces a funding gap of £1.3 billion by the end of the decade as part of a £5.8 billion funding gap facing local government overall.

The Autumn Statement contained no new funding for social care or health. On 15 December 2016, Communities Secretary Sajid Javid announced a £240 million dedicated social care grant for Councils from 2017 and plans for them to have the flexibility to increase the social care precept by up to 3% next year. In response, Sarah Wollaston, the chair of the health select committee, said: "I'm not convinced that the local government settlement is new money, it brings some of it forward but doesn't grasp the seriousness of the shortfall. Rising unmet need for social care will not be resolved without genuine cross-party working to find a long-term solution to funding."

The impact of the shortfall is already being felt by carers and caregivers. In May 2016, the New Policy Institute undertook an analysis of the Family Resources Survey 2013-2014. The analysis shows 2.1 million informal carers are in poverty in the UK – the poverty rate among carers is 22% but this varies considerably by age, care intensity and relationship to the recipient. The poverty rate appears to increase with the number of hours of care they provide (particularly after 20 hours a week) which leads to a lack of time and capacity to also be in the workplace. The employment rate among working-age carers is 64% - this compares to an employment rate for non-carers of 74%. Despite the challenges of combining care with employment, 400,000 people are doing a full working week alongside providing 20 hours of more of care.

The so called ‘cash benefits’ for carers that meet the eligibility criteria consists of ‘Carer’s Allowance’ worth approximately £62.10 a week and the ‘carer premium/addition’ which is means tested and worth up to £34.60 per week. Carers UK estimate 366,000 people (or 35% of all carers) are not claiming the Carer’s Allowance to which they are entitled, leaving £1.13 billion unclaimed every year. Universal Credit and the under-occupation deduction from Housing Benefit (commonly referred to as the bedroom tax or spare room subsidy) are also having an impact on carers’ benefits.

Besides stating the costs of providing care, few of these analyses explore the financial implications for a carer or caregiver on their participation in work, education and learning and social activities. For the recipient of care, the financial cost of providing them with support is not linked to housing, transport and other services that underpin their care.

Fourthly and finally, what are the implications of Home Truths for rural areas?

a) Funding for social care in rural areas is under unprecedented pressure . Back in 2014, LG Futures undertook a piece of research for the Department for Environment, Food and Rural Affairs (Defra) and the Department for Communities and Local Government (DCLG) to establish to what extent rural authorities faced additional and unavoidable costs in delivering services compared to urban authorities. As a ‘needs based service’, differential provision in social care was not considered to exist (i.e., urban and rural dwellers have the same expectations for services) and there was a tendency for more rural authorities to have a lower proportion of agency staff costs and a lower proportion of expenditure on out of area placements. However, the research found rural authorities had higher travel claims per officer, a higher cost of travel downtime, a residential care premia linked to market factors, location and incidence of self-funders and a domicillary care rate premia of 5-11%. Rural authorities also receive 17-19% less income than their urban counterparts for day care.

In April 2016, the RSN carried out research for Rural England. This found the additional costs associated with sparsity were not being reflected adequately in social care funding leading to unmet care needs in the countryside. The study found rural residents presented later and/or required more urgent and complex crisis-point interventions. Issues around finding and paying for packages of care for very isolated rural residents, the implications of cost cutting in care homes and the increasing pressure on local voluntary and community sector organisations to ‘fill the gap’ where public and private sector providers couldn’t deliver were also highlighted.

b) The social care system in rural areas continues to get by because residents support vulnerable people in their communities . Research from Glasgow University in 2014 found that rural dwellers had greater access to informal networks of care, including family, friends and neighbours, which decreased their reliance on the social care system. The findings showed that, even after adjusting for age, sex, health and living arrangements, the rate of care home admission in rural areas was only 75% of that in urban areas. The study found it was less common for older people in rural areas to live alone, with 25% living with other family members, compared to 18% in urban areas.

c) If people are to remain independent and in their own home for as long as possible, there are a set of obstacles specific to rural areas that need to be addressed. These include personalisation, housing market, fuel poverty, transport, and isolation.

While the needs of carers and caregivers (independent of the needs of those they are caring for) have been recognised by policy and decision makers, the huge contribution that they make to sustaining others who would otherwise need health and social care services – often to the detriment of their own social, physical, emotional and financial wellbeing – is not always valued. According to Nadra Ahmed, chair of the National Care Association, “we are now beyond the crisis point. We really are at the edge of the cliff now.” So if carers and caregivers are not able to carry on – or unable to provide even more - ‘who will care?’

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The terms ‘carer’ and ‘caregiver’ are used throughout this article in recognition of forum discussions about the use of language. Some people prefer the term ‘carer’ rather than caregiver, believing it reflects the support they provide to a loved one with whom they have an emotional bond; while other people prefer the term ‘caregiver’ because it reflects both how they care for the person they are supporting and how they give to them. I do not think it is possible to find one word that fully encapsulates everything a carer and caregiver does. I also think whichever word people choose to use it shouldn’t negate the other roles that the carer/caregiver also fulfils.

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Jessica is a researcher/project manager at Rose Regeneration; an economic development business working with communities, Government and business to help them achieve their full potential. Her current work includes research for the NHS on rural workforce recruitment and retention issues; supporting a Lottery programme to help people into paid work; and an EU wide project on agricultural innovation. In a personal capacity, two years ago Jessica unexpectedly became a carer. She finds it very difficult to see the person she cares for struggling with things they used to be able to do and believes there is much to do to support carers in what can be a life changing role. Jessica can be contacted by email [email protected] or telephone 01522 521211. Website: http://www.roseregeneration.co.uk/ Twitter: @RoseRegen