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Topic on a Page - Carers

Data Sources:

Carers Supplementary Data Published: Jun 2018

POPPI:

Dementia Prevalence

PANSI:

People aged 18-64 predicted to have a moderate or serious personal care disability, by age, projected to 2030

People aged 30-64 predicted to have early onset dementia, by age and gender, projected to 2030

Public Health England (PHE):

Older People's Health and Wellbeing

Public Health Profiles:Carers

Public Health Profiles: Caring

NHS Digital:

Measures from the Adult Social Care Outcomes Framework, England 2015-16

Supporting Information:

HM Government:

Carers Action Plan 2018-2020

Care and Support Statutory Guidance

Carers' Health

Carers UK:

Carers UK

Buidling Carer Friendly Communities (2016)

Buckner and Yeandle, Valuing Carers: The Rising Value of Carers Support (2015)

Missing Out – the identification challenge (2016)

Caring Homes

Work on Technology

NHS England:

Commitment to Carers (2014)

Commissioning for Carers

Carers Toolkit

NHS Choices: Guide to care and support

Carers Trust:

Resources for Professionals: Young Carers and Schools (Sempik and Becker) 2014

Young Adult Carers at College and University (Sempik and Becker) 2014

Young Adult Carers at School: experiences and perceptions of caring and education (Sempik and Beker) 2014

Young Adult Carers and Employment (Sempik and Becker) 2014

Young Adult Carers – Employment and Training Care Act for Carers: One year on Commission

Carers Trust

Speak up for older carers

Time to be Heard

Employers for Carers (EFC):

Employers for Carers

Every One:

Working Together

Carers Quality Award

NICE:

Intermediate care including reablement [NG74] September 2017

Guidance: Home care: delivering personal care and practicacl support to older people living in their own homes [NG21] September 2015

Guidance: Older people with social care needs and multiple long-term conditions [NG22] November 2015

Guidance: Transition between inpatient hospital settings and community or care home settings for adults with social care needs [NG27] December 2015

Guidance: Dementia: Supporting people with dementia and their carers in health and social care [CG42] September 2016

Guidance:Transition from children's to adults' services for young people using health or social care services [NG43] February 2016

Guidance: Transition between inpatient mental health settings and community or care home settings [NG53] August 2016

Quality Standard: Transition between inpatient hospital settings and community or care home settings for adults with social care needs[QS136] December 2016

Rehabilitation after critical illness in adults [QS158] September 2017

Local Government Association (LGA):

Resources for supporting carers

Supporting carers: guidance and case studies

NHS Evidence:

Carers

Young Carers

Sandwich Carers

Older Carers

Joseph Rowntree Foundation:

Carers

Lincolnshire County Council:

Lincolnshire Care Services Directory 2017/18

House of Commons Library Briefing Papers:

Carers Allowance

Social Care Institute for Excellence (SCIE):

Carer's lives & caring issues: knowledge & research evidence resource

Carers' breaks: guidance for commissioners and providers

Linked Topics:

Topic last reviewed: Jul-18

JSNA Topic: Carers

Background

Caring affects almost everybody in their lifetime. Three in five of the UK population will become an unpaid family care-giver - and many people will one day need care. Each year, 2 million people become carers, and around the same number cease their caring responsibilities (Source: Carers Week (2016), Building Carer Friendly Communities).

This JSNA topic is about unpaid family carers – those who look after relatives and friends living with a range of conditions including cancer, dementia, mental ill health, stroke, alcohol and substance misuse, physical disability, learning disability, old age and frailty.

Lincolnshire has an estimated 84,000 unpaid family carers (Source: Buckner and Yeandle, (2015) Valuing Carers 2015 – The rising value of Carers Support). They are all ages: from 5 to 100 years old. Student and working carers may care for a few hours a week on top of work or education, often struggling to balance responsibilities, including raising children. Young carers may help out with siblings or have more substantial responsibilities with parents, with both experiencing a limiting impact on family life. Many family carers care full time, day and night, in excess of over 100 hours a week, experiencing the impact of low income, disrupted sleep and negative impacts on their own health and wellbeing.

One of the main challenges in reaching 'carers' is that people typically do not recognise themselves as such – rather they are 'just' looking after a parent, a spouse, or a son or daughter, who could not manage without their help. However, their help is often assumed by professionals, without considering the impact on the care-giver. The word 'carer' is, unhelpfully and confusingly, often used to mean a paid worker. Family carers as a result can be very invisible.

Lincolnshire's ageing population means the numbers of those caring in the county are increasing. The value of Lincolnshire's unpaid hours of care is estimated to be worth £1,677 million (Source: Buckner and Yeandle, 2015) and is increasing. Informal caring is a vital, but often unrecognised, component of the formal health and care system. Nationally, carers provide care to the value of £132 billion every year in the UK – the equivalent of spending on the National Health Service.

The impact of the caring role on a person's own health and wellbeing can be significant. This burden intensifies as the hours of caring increase, and also with the length of the caring role over time.

As Carers UK points out, "Despite saving money for the UK and local economy, caring still comes with a high personal cost for the many carers who are struggling to make ends meet, finding it hard to stay in touch with friends and family, seeing their own health and wellbeing suffer, or needing more support to stay in work alongside caring" (Source: Carers UK (2016), State of Caring).

Adults have the right to choose whether to care for someone or not. Many people choose to do so, as part of a familial role and as a life stage. Young carers, by definition, have less choice and are particularly vulnerable to the negative impacts of caring.

In order to look after someone in a way that is healthy and manageable – particularly when combined with other responsibilities - the caring role needs to be recognised and respected by health and care professionals, and employers – at the earliest opportunity. Anyone in a caring role should be able to access the information, advice, practical help and emotional support they may need to carry out the role, particularly as its intensity increases. This may include replacement care and breaks. Carers may also need support to stop caring, in order to be able to live their own lives fully again.

Children and young people may not have the same ability to exercise choice and control about whether to care or not. Recognition of young carers by schools, colleges and health services and advocating their needs is therefore particularly important. A young carer is defined as a child or young person under 18 who provides or intends to provide care for another person (of any age) (Source: Children and Families Act, 2014). This typically means practical and emotional support to a family member who is physically or mentally ill, disabled or misuses substances. It may be helping a sibling with a disability and experiencing the limiting impact of disability on family life. It may be a responsibility to help look after a parent or guardian, who has substantial needs of their own. The long term limiting impact of caring on young carers, young adult carers and student carers, can be particularly severe with risks to educational attainment, mental health, careers and choice and control over their own lives.

Context

National Strategies, Policies & Guidance

The Care Act (2014) and Children and Families Act (2014) In 2014, for the first time, the introduction of the Care Act and the Children and Families Act, placed the needs and rights of carers on an equal footing to those for whom they care. The importance of caring as a national priority was given full legal recognition.

All carers, including parent carers, young adult carers and young carers, now have the right to have an assessment of their needs if they request it, or if they appear to have needs, regardless of for whom they care, what type of care they provide or how often they provide it (Source: ADASS (2015) The Care Act and Whole Family Approaches).

In particular, no young carer should be relied upon to provide an inappropriate level of care to an adult.

The Care Act (2014) also introduced national eligibility criteria to ensure equitable access to funded support across the UK. These take into account the impact of caring on a carer's physical or mental health, and the impact on the carer's wellbeing where they are unable to achieve a range of outcomes.

Councils further have a duty to promote the wellbeing of carers, and to prevent, reduce and delay the onset of need. Councils are also expected to take a whole family approach to assessment, as appropriate. Support provided should make sense to the whole family, having taken individual needs into account.

NHS England Commissioning for Carers
The NHS Five Year Forward View commits the NHS to find new ways to support carers and build on the new rights created by the Care Act (2014). In particular it commits to help the most vulnerable carers – the approximately 225,000 young carers and the 110,000 carers who are themselves aged over 85 in the UK.

Whilst commissioners and practitioners cannot solve all of the challenges faced by carers, much more could be done to support them and help ensure that they receive the "recognition and support that they need and deserve from the NHS".

NHS England's Commissioning for Carers offers a set of 10 Principles and resources to support Clinical Commissioning Groups better identify and help carers to stay well. Developed with carers, they aim to help CCG's deliver the best outcomes for adult and young carers.

Commissioning for Carers Principles
Principle 1 - Think Carer, Think Family: Make Every Contact Count
Principle 2 - Support What Works for Carers, Share and Learn From Others
Principle 3 - Right Care, Right Time, Right Place for Carers
Principle 4 – Measure What Matters to Carers
Principle 5 – Support for Carers Depends on Partnership Working
Principle 6 – Leadership for Carers at all Levels
Principle 7 – Train Staff to Identify and Support Carers
Principle 8 – Prioritise Carers' Health and Wellbeing
Principle 9 – Invest in Carers to Sustain and Save
Principle 10 – Support Carers to Access Local Resources

The principles are based on what carers say is important to them, in ways that have been shown to work effectively and efficiently in practice based on the latest research and case-studies. When followed, these principles will help both health and social care commissioners to deliver better outcomes for carers, patients, practitioners and local communities.

This is part of NHS England's 'Commitment to Carers', working alongside other organisations, to give carers greater support and improve their quality of life. A key element is a Carers' Toolkit which includes a template for a Memorandum of Understanding (MOU) that local health and social care partners can use to help them work together to support carers of all ages.

The National Carers Strategy (2008): Carers at the heart of 21st- century families and communities set out the following strategic vision and outcomes for carers to be achieved by local councils, health and education partners:

  • Carers will be respected as expert care partners and will have access to the integrated and personalised services they need to support them in their caring role;
  • Carers will be able to have a life of their own alongside their caring role;
  • Carers will be supported so that they are not forced into financial hardship by their caring role;
  • Carers will be supported to stay mentally and physically well and treated with dignity;
  • Children and young people will be protected from inappropriate caring and have the support they need to learn, develop and thrive, to enjoy positive childhoods.

Local Strategies & Plans

See Figure.1 on the Supplementary Data Document - Lincolnshire Carers Strategy Outcomes

What is the picture in Lincolnshire?

What the data is telling us

According to the 2011 Census, there were 79,000 unpaid carers of all ages in Lincolnshire, or 11% of the county's population. By 2016, this was estimated at 84,045 carers (Source: Buckner and Yeandle).

Lincolnshire has one of the fastest growing rates of carers in the UK. Between 2001 and 2015, the county experienced a 27.5% increase in the number of carers, compared to the general rate of population growth of 6.2%. This was the largest rate of growth in the East Midlands. From 2011to 2015 the numbers of carers is estimated to have grown by 5.2%, again greater than the general rate of population growth of 3.4% (Source: Buckner and Yeandle (2015)).

The numbers of people living with a life limiting illness is growing – for example 11,688 people were living with dementia in the county in 2016 – a figure set to increase by 75% in the next 18 years (Source: POPPI – Dementia Prevalence). Lincolnshire and the East Midlands is one of the UK regions with the highest rate of growth of people over 65: a 22% increase projected by 2024 (Source: ONS (2016)).

Over 20,000 of these carers reported providing more than 50 hours of caring a week. Carers caring for over 50 hours a week are twice as likely to be in poor health as those not providing care. Over 53,000 carers were of working age, and over 20,000 were aged 65 and over. (Source: ONS (2011))

According to the 2011 census, Lincolnshire reported 1,800 young carers under the age of 15, and a further 3,500 young adult carers (16- 24). However, in 2010, a BBC and Nottingham University survey suggested there could be four times more young carers than the previous official census of 2001 had showed. The Royal College of GPs estimates there are approximately 3,200 young carers in an average CCG area.

Not all of Lincolnshire's 84,000 carers will be aware of the information and help that is available for them. In 2016-17, in total 20,300 adult carers and a further 10,700 parent carers of children were known to the Council. Of these, 8,100 adult carers in 2016-17 received a service for themselves or the adult they cared for (who may be eligible for social care in their own right). (Source: LCC SALT 2016- 17)

In 2016-17, 1,500 new adult carers, previously unknown to the Council, had their needs assessed (Source: LCC, Carers Strategy Performance Report 2016-17). The numbers are lower than the census for a variety of reasons: people tend to make contact with the council for support only when they are struggling; many people will not be aware of services for carers, nor recognise themselves as a 'carer'. Some groups of carers, such as parent carers, mental health carers and distance carers take longer than average to identify their role (Source: Carers UK (2016), Missing out – the identification challenge). Frontline professional referrals to carers' support often takes place only when a carer is at breaking point. This is a challenge, with many carers missing out on support and advice.
The Survey of Adult Carers in England reports the profile of carers known to the Council in Lincolnshire as mostly retired (72%), with 20% employed. Physical disability (56%), long standing illness (48%) and problems connected with ageing (34%) were the most common reasons for caring. The average age is 66. 60% of carers are 65 or over. 36.5% of males and 63.5% of females makes up this cohort. (Source: NHS Digital (2017), Survey of Adult Carers in England)

Lincolnshire's rurality and related transport issues are an issue for many carers, with older carers in rural or coastal areas more likely to experience social isolation. . The rural/ urban split of the caring population is calculated to be 51/ 49.

East Lindsey is ranked 2nd in the UK for the highest numbers of people caring for 50 hours or more per week. East Lindsey also has the highest proportion of people aged over 65 in the UK. Many people come to retire in the coastal areas from urban centres, leaving behind networks of family and friends. Ageing, and caring, can become a more isolating experience.

This was reflected in the highest volume of carer referrals to Carers FIRST from June 2016 to December 2016 coming from East Lindsey, closely followed by South Kesteven and North Kesteven (Source: Carers FIRST service statistics).

Performance
The bi-annual Department of Health and Social Care 'Survey of Adult Carers in England' provides a snapshot of the overall experience of all carers with Adult Social Services (regardless of whether or not they are supported by Carers Services). The figures for Lincolnshire show a slight decline from previous years:

  • 69% of carers who received support or services were extremely, very or quite satisfied with the support or services they received %.
  • 64.4% feel involved or consulted about the person they care for.
  • 58.9% of carers find it easy to find information about services.
  • 31.8% of carers reported they had as much social contact as they would like.

The Carers Team at Lincolnshire's Customer Service Centre reports consistently high levels of customer satisfaction for its service (average 96% since January 2016). (Source: LCC (2016) Touchstone Monthly Experience Surveys)

Lincolnshire carers have consistently said that what is most important to them is to get the help they need quickly. Between November 2015 and November 2016, the Lincolnshire Carers Service carried out over 97% of all carer assessments within 20 working days of contact.

See Figures 2 to 5 on the Supplementary Data Document for further information.

Trends

Demographic trends
The overall UK trend is that the number of carers is growing steadily and will continue to do so as the population ages and lives longer with long term illness. This is reflected in Lincolnshire, where the number of carers is projected to increase to 88,000 by 2021(Source: Buckner and Yeandle, (2015)).

Between 2001 and 2015, two key indicators of the demand for care increased: The number of people aged 85 and over grew by 38%, and the number of people living with a life limiting illness grew by 16%. This rate is faster than the growth in the general population, at 6.2% in the same period.

The amount of homecare funded by local authorities in England decreased by 7% between 2011-14 (Source: Buckner and Yeandle, (2015)). However, the amount of care provided by family carers has increased. The hours of care provided by Lincolnshire carers grew by 7.6% between 2011 and 2015. This means the burden of care on carers is increasing, and is a trend that should be monitored.

The factors above help explain the increasing numbers of carers, and why the burden of their care is also growing.

The number of older people living with dementia is expected to increase by 76% in Lincolnshire, over the next 18 years. This is greater than the English average of 70% Source: POPPI). For further information see the JSNA Dementia topic.

The number of older people who provide care is also growing rapidly. Almost 1.3 million older people in the UK over the age of 65 are caring for someone else. This is reflected locally. Half of the carers supported through Carers Services are over 65 (nearly 4,200 in 2016-17). (Source: LCC SALT, 2016-17)

Most carers aged over 70 care for more than 60 hours a week. Carers aged 75 and over have increased by 35% in the last decade (SOURCE: Carers Trust (2016), Speak up for Older Carers). Locally, 32% of carers aged between 65 and 84 spend 100 hours or more looking after the person they care for (Source: NHS Digital, Survey of Adult Carers in England 2016-17).

The number of older carers aged over 85 has also risen exponentially in the last decade in the UK - by 128% (Source: Carers Trust (2016), Speak up for Older Carers). Nationally, 1 in 10 people over 85 provide unpaid care, with this number set to double over the next 20 years. Over half of carers aged over 85 provide 50 hours or more of care a week. Older carers are most likely to 'co-care' – where both partners care for each other.

Locally, the number of supported carers aged over 85 grew from 594 in 2015-16 to 682 in 2016-17 (Source: LCC SALT 2016-17). 1 in 6 carers seeking support from the Lincolnshire's Carers Service at Carers FIRST is aged over 80 (Source: Carers FIRST, (2016) Statistics). 40% of carers aged 85 and older spend 100 hours or more looking after the person they care for (Source: NHS Digital, (2016)).

A new emerging national trend is the rise of elderly filial carers, a 'growing but under-recognised group' (Source: The Guardian (2016)). Very old people are being cared for by their elderly offspring, themselves in their seventies. The number of centenarians in the UK has quadrupled in the last 30 years, and the number of people reaching 90 has nearly trebled in the same period.

Polling by YouGov in 2012 suggests there may as many as 2.4 million 'sandwich' or multi-generational carers in the UK – caring for an older or disabled relative at the same time as bringing up children. This number will continue to grow as the average age for having children continues to rise, and care needs amongst older relatives continue to grow. The peak age for these two family responsibilities to coincide is 40-44 for women and 45-49 for men. This has a potential impact on the working population, as well as the individual, especially where caring responsibilities mean that someone may need to leave the workforce.

Service trends
More carers are seeking help earlier in 'the carer journey'. This is positive, and indicates that more people are finding out about available help earlier on in their role as a carer, rather than at crisis point. This is a trend to encourage.

Health and Social Care workers are encouraged and trained, through the improved Better Care Fund (iBCF) funded initiatives, to be aware of the needs of carers and how to support them.

The Carers Service is 'Make Every Contact Count' trained. Staff are trained to triage need, using the 'Wellbeing Summary' and make full use of 'community assets', helping to connect carers back into their communities.

The Carers FIRST hospital outreach service in Lincolnshire's acute hospitals has worked successfully with NHS colleagues to raise awareness, identify and support carers at key points of diagnosis or as an emergency presentation.

Overall, the number of carers supported by the Lincolnshire Carers Service, and by the County Council as a whole, continues to grow, in line with demography. Care Act eligibility criteria ensure that carers with greater needs are more fairly targeted for ongoing funded support (Source: LCC Carers Strategy Performance Report 2017-18).

Key Inequalities

Carer physical and mental health and wellbeing
Carers providing high levels of care are more than twice as likely to be in poor health as non-carers. A range of physical and mental health problems contribute to the poor health including physical strain, stress- related illness such as high blood pressure, anxiety and depression. (Source: ONS (2011))

Research by the Carers Trust identified the main barriers for carers in maintaining their health, and the consequences:

  • My GP practice hasn’t informed me about to get practical support as a carer (55%)
  • My GP practice doesn’t offer an annual health check for carers (45%)
  • I haven’t received any education or training to help keep me well (42%)

(Source: Carers Trust (2016), Building Carer Friendly Communities: Research Report)

The negative impact of these barriers is significant. Without practical support, the caring role is more likely to break down. The same research found that three quarters of carers felt their role was undervalued and unsupported. 1 in 5 carers said their hospital did not recognise their caring role.

There are direct consequences for carers' own health: 1 in 4 carers said they struggle to get to their own health tests, check-ups and specialist appointments. If carers cannot get to the doctor to ensure they are in good health, it is likely that their health will deteriorate, hence the negative impacts findings in the Carers Trust research below:

Of carers who face barriers to health:

  • 51% have let a health problem go untreated
  • 50% said their mental health got worse
  • 35% have physically injured themselves through caring
  • 31% only get help when it is an emergency

The impact of caring on mental health is less understood. Many carers have mental health problems of their own. Research for Carers Week in 2015 found that a high proportion of carers were on anti-depressants (60%) (Source: Building Carer Friendly Communities). Research by Carers UK found that of those carers who gave up working in order to care, a very high proportion (69%) said the stress of juggling work and care was a contributing factor. Unemployment and poverty are known to be associated with depression. Long term caring is associated with increased social isolation – again with known mental health impacts as resilience and coping mechanisms are affected.

The findings above should be considered in the Lincolnshire context of 70% of carers having a disability or long standing illness, an increase from the previous bi-annual survey (Source: NHS Digital, (2016)). The service supports a noticeable number of carers with mental health conditions including depression, debilitating stress and anxiety, and agoraphobia (Source: LCC (2015), Carers Commissioning Strategic Needs Analysis).

See Figure 5. on the Supplementary Data Document.

Older carers and health
Older carers have health issues of their own that require care and support. Ageing and declining health also impacts on older carers' ability to maintain their own health.

Research shows that older carers who are unable to get to their appointments and check-ups are more likely to experience a greater negative impact on their health than other carers. In particular:

  • 59% say their health is becoming a significant worry.
  • 46% of older carers have physically injured themselves as a result of letting a health problem go untreated.

(Source: Carers Week (2016), Building Carer Friendly Communities)

Older people caring for someone with a long-term condition, dementia or complex health issues struggle to manage multiple health and care appointments for the person they care for. The volume, transport arrangements and disruption to daily routines can be exhausting, at a time of life when peace and rest are particularly important.

Negative health impacts have potentially worse consequences for older carers because they are in addition to issues already existing for many in later life such as reducing social networks, issues of mobility or confidence, and increased isolation. If the principal access to a service is online, some older carers will be at a disadvantage.

Employment and carers of working age
1 in 9 workers in the UK and Lincolnshire are juggling care with paid work, yet many face a lack of understanding from colleagues and managers (Source: Carers UK (2016), State of Caring). Many working carers find they go months or even years without a real break.

National research by Carers UK revealed that 7 in 10 working carers have used their annual leave to care and almost half have done overtime to make up hours spent caring. Many carers leave work altogether when they feel they cannot cope any longer, and many more reduce their hours, turn down promotion, or take lower paid, flexible work that can fit around their caring responsibilities.

The national Carers UK, 'State of Caring Survey' in 2016 identified three main barriers to balancing work and care:

  • "I don't feeling comfortable talking about caring at work"
  • "My employer doesn’t understand my caring role"
  • "My employer doesn’t have policies in place to support carers"

Where carers faced these barriers to employment:

  • Two-thirds felt they had no option but to give up work or reduce hours.
  • Over a quarter reported not pursuing or turning down a promotion in order to be able to care.
  • Half have struggled financially.
  • 4 in 10 said their work suffered.
  • 6 in 10 carers were more stressed about being able to care well for the person.

A key threshold at which carers are at risk of leaving employment occurs when care is provided for more than 10 hours a week. However a third of carers in the survey above did not feel that that the support they needed to manage work and care, or to return to work, was considered properly in the assessment.

Research suggests the burden of caregiving can be potentially reduced when a balance can be struck between paid work and unpaid care giving (Source: University of Birmingham, 2016). A small amount of support in the caring role that enables a person to remain in work has potentially large benefits in helping these individuals to hold their position in the labour market and in so doing, maintain their wealth and wellbeing over the long term. Carers UK found the top three things that carers say would have helped them remain in work alongside caring are:

  • More support from care workers coming to the home of the person they care for
  • Support with household chores such as shopping
  • Support with managing or co-ordinating care

(Source: Carers UK (2016), State of Caring Report)

Carer finances
A caring role often results in a sharp reduction in household income, especially when leaving work or reducing hours to care – this can be catastrophic if caring for a partner who has also left work as a result of illness or disability. This will be a particular issue in the areas of greatest deprivation in Lincolnshire.

Long-term full time carers often became poorer and experienced lower wellbeing and health, the longer they provided care, a 2016 University of Birmingham study found, looking at the impacts on income and employment over 15 years.

Those who started off in part time employment with some caring responsibilities saw their wealth and wellbeing start to decline and it did not improve over their life course.

Individuals who started out primarily as carers remained in this role over the long term, and it became increasingly unlikely that they would re-enter the labour market, even part time. They experienced a widening wealth and wellbeing gap compared to individuals who were primarily part time or full time workers.

The impact of long term caring has particular relevance for carers of working age, parent carers of children with disabilities, carers of adults with learning disabilities and carers with multiple caring responsibilities.

The Carers UK 'Caring and Family Finances Inquiry' in 2014 found that carers face higher utility bills, higher transport costs, higher shopping bills, spending on care services and even the cost of home adaptations. Half of working age carers in the UK lives in a household where no-one is in paid work. Almost 1 in 3 carers had seen a drop of £20,000 a year in their household income as a result of caring. Rising fuel and utility costs therefore have a disproportionate impact on carers.

The 2016 Carers UK State of Caring Report found that:

  • Over a quarter of carers were, or are in debt due to the caring role
  • 40% of all carers report a level of worry about finances that affects their health
  • Nearly half of all carers are struggling to make ends meet
  • Nearly half of those struggling are cutting back on essentials like food and heating
  • Two thirds of carers who are struggling to make ends meet cut back on seeing friends and family to cope, increasing isolation
  • One in six are falling into arrears with housing and utility bills
  • A third borrow money on credit cards
  • Over a third are using up savings, suggesting their ability to manage long term is unlikely to be sustainable
  • Three quarters of those struggling report that worry about their finances is affecting their health

Many of Lincolnshire's carers have retired. They may live for many years beyond retirement age, with increasing needs, but no ability to increase their income. While some will have savings and workplace / occupational pensions, many will receive the basic state pension and some will receive minimal income if they have not paid sufficient contributions in the past.

Young carers
The Hidden from View Report by the Children's Society based on evidence from the Longitudinal Survey of Young People in England showed clearly 'the differential impact that caring has on young carers compared to other children, including restricting their educational attainment in school, and the knock-on effect that this can have on employment opportunities, careers and later life'. This is set out further in the section on young adult carers below.

Many young carers' families are living on reduced income (living on benefits, limiting disability, worklessness). Furthermore, young carers were found to be no more likely than other children to be in contact with social services and educational welfare services, despite those organisations being mandated to offer them support.

Key findings in the Children's Society research report include:

  • One in 12 young carers is caring for more than 15 hours a week.
  • Around 1 in 20 young carers misses school because of their caring responsibilities.
  • The average annual income for families with a young carer is £5000 less than families who do not have a young carer.
  • Young carers have significantly lower educational attainment at GCSE level, the equivalent to 9 grades lower overall than their peers (i.e. the difference between 9 B's and 9 C's).
  • Young carers are over four times more likely to live in a household where no adults are in work

The Carers Trust, using research by the University of Nottingham found that:

  • Nearly half (45%) of young adult carers who had left school felt they would have got better grades if they had not been a carer
  • Teenage young carers miss or cut short an average of 48 school days a year because of their caring role
  • A quarter of teenage young carers experienced bullying.
  • The most common highest qualification for a teenage carer was a GCSE at grade D

(Source: Carers Trust (2014), Time to be heard: a call for recognition and support of young adult carers)

Young adult carers
The needs of young adult carers can be particularly invisible. Whilst the average age for becoming a young carer is 10, with many providing care to a family member for several years, as few as 2 in 10 will have a formal assessment of their needs. This is borne out by the low numbers receiving a service in Lincolnshire in 2016 (Source: Carers Trust (2014), Time to be heard).

Young adult carers take on significant additional responsibilities which can make the transitions from childhood to adulthood especially complex and challenging. The difficulties they experience as a result of their caring role can have significant and long term negative impacts on their engagement with education and employment, and their overall physical and emotional wellbeing, evidenced by a large body of research.

  • 35% of young adult carers had not informed their school they were a carer, with the most common reason cited was 'no point'.
  • 25% of young adult carers had not informed college or university staff for the same reason
  • 45% said they did not have a particular person at college or university who recognised they were a carer or helped them. (Source: Lempick and Becker (2014) Young Adult Carers at School: experiences and perceptions of caring and education)

Research by the Audit Commission in 2010 (Against the odds: targeted briefing – young carers) found that young adult carers between the ages of 16-18 had a much greater chance of not being in education, employment or training (NEET) than the national average. Of these, 75% had been NEET at least once (compared with 25% of all young people) and 42% had been NEET for six months or more (compared with 10% of all young people).

Young adult carers are less likely to enter further or higher education. A young carer at Year 9 has a one in three chance of becoming NEET, compared to a 1 in 4 chance for non-carers. The national NEET profile for young carers is higher than the national profile (Source: The Children's Society (2013), Hidden from View). Being NEET between the ages of 16-19 can have a huge impact on a person's outcomes later on in life. The Department of Education recognises that 'being NEET can be associated with negative outcomes later in life, including unemployment, reduced earnings, poor health and depression. These outcomes have a cost for both the individual and the economy' (Source: Department of Education, 2013).

Of the young adult carers that do make it to college or university, many still face considerable challenges. Research by the University of Nottingham, looking at the experiences of 100 young adult carers in further and higher education, found that once there they may experience considerable difficulties and many consider dropping out because of their caring role. Issues with lateness or absence, balancing academic with caring responsibilities and a high prevalence of self-reported mental health problems (45%) clearly indicate young adult carers need to be identified early on and supported (Source: Becker and Sempick, 2014).

However many young adult carers are left struggling to complete their courses without adequate support. Over three quarters of young adult carers had communicated their caring role to their college or university, but nearly half felt there was no-one there who recognised them as a carer and helped them. Only a minority had had a carer's assessment, and almost a third reported their family was not receiving good services and support.

  • Most respondents were enjoying college or university (79%) but over half had difficulties relating to the carer role.
  • There was a link between providing a greater amount of care and regularly missing college or university
  • 39% of young adult carers in further or higher education rated their health as Just OK or poor
  • 45% reported having mental health problems including anxiety, depression and eating disorders.
  • The higher the level of care, the more likely the young adult carer was to find college or university difficult.
  • Young adult carers were four times more likely to drop out of college or university than students who were not young adult carers.
  • Only 46% said their family received good support and services.

(Source: Carers Trust (2014), Time to be heard)

Being a young carer and young adult carer also has an impact on early employment. The Longitudinal Survey of Young People in England provides long term data that confirms earlier research. It shows that young carers in employment aged 21/22 are more likely to be in lower skilled occupations, such as personal service, sales or customer service, and less likely to be in managerial, technical or skilled trade roles. (Source: The Children's Society 2013)

The body of research evidence shows significant associations between young people caring in their mid-teens and lower educational attainment by the age of 16, the knock on effect of lower job prospects and educational opportunities between 16-19, and likelihood of being in lower skilled occupations in early adulthood.

Findings from research into young adult carers and employment found that:

  • Young adult carers miss work an average of 17 days a year, with a further 79 affected because of their caring responsibilities.44% had chosen a job because it was close to home
  • 38% chose their job because it offered the flexibility to fit it around their caring responsibilities
  • The majority of young adult carers had told their manager about their caring role, but for 41% their manager was not supportive.
  • 21% of the young adult carers who had left school were NEET, a reflection on caring responsibilities affecting the ability to work at all.

College and university are important routes into employment for young adult carers. Young adult carers who had completed a university or college course were more likely to be in a job because it fitted with what they wanted to do.

Being a young adult carer has an impact on health problems, including mental ill-health, at a faster rate than the general population. In the survey of 295 young adult carers aged 14-15:

  • 65% said they had one or more disability or health difficulty
  • 45% reported having mental health problems including anxiety, depression and eating disorders.

Gender
The 2011 Census shows that women (58%) are still more likely to be carers than men (42%). This percentage of female carers rises to 60% for those who are caring for 50 hours or more a week.

Women make up 73% of the people receiving Carers Allowance (working age adults with no other income) for caring 35 hours or more a week (Source: Carers UK (2015), Facts about carers: a policy briefing). Caring also tends to affect men and women at different times in their life: women are more likely to care in middle age. Women are more likely to be sandwich carers (combining elder care and childcare) and are also more likely to give up work in order to care – causing long term issues for income equality.

The gender imbalance reduces amongst older carers:

  • Between the ages of 75 and 84 the gender split is 50:50
  • Carers over 85 are more likely to be male (59%) than female (41%) – many caring for their partners.

The Department of Health and Social Care bi-annual Survey of Adult Carers in England 2016-17 offers a local snapshot of carers experiences. Responses were fairly consistent with the census, with a slightly higher proportion of women (65%) responding overall. Carers aged 75-84, 57% were female, in the next age group, 85+ this reduced to 40%.

The impacts and needs of carers can be different because of gender. Recent research by the Carers Trust and the Men's Health forum found that one in four male carers in employment would not describe or acknowledge themselves as a carer to others, meaning they may not get the support they need at work. Over half of the 600 male carers surveyed felt their needs were different to female carers, many citing that men find it harder to ask for help and support; and that balancing work and caring is challenging, particularly if they are the main earner. Male carers who were not working due to the caring role felt especially isolated. (Source: Carers Trust and Men's Health Forum (2014), 'Husband, Partner, Dad, Son, Carer?)

A quarter of male carers surveyed cared for more than 60 hours a week whilst working.

  • Two in five male carers said that they have never had a break from their caring role.
  • 56% of male carers of working age felt caring had a negative impact on their mental health.
  • 55% of male carers of working age said that their health was 'fair or poor'.

Male carers of working age are more likely to visit their GP (four times a year) than men who are not carers, but despite this their health is often poor. Many are not identified as male carers and so do not get offered support.

(Source: Carers Trust and Men's Health forum (2014))

Black, Asian and Minority Ethnic (BAME) Carers
The 2011 Census showed nationally there were just under 600,000 BAME carers. The NHS Information Centre: Survey of Carers in Households found that BAME carers are more likely than white carers to provide support for at least 20 hours a week (56% compared to 47%). Carers UK found that BAME carers were less likely to be receiving practical and financial support with caring and more likely to miss out on accessing support for longer – often as a result of a lack of advice and information, and struggling to access culturally appropriate services (Source: Carers UK (2015), Facts about Carers).

Lincolnshire is one of the least diverse areas of the UK with a reported 96.3% population compared with 80.5% for England and Wales identifying as white British. However this is fast changing in parts of the county with rapidly growing communities from Eastern Europe. The service supports small numbers of families from Black, Asian and minority ethnic communities. Assumptions and value judgements should not be made about 'caring traditions' within Black or Asian cultures, nor should families be treated as if members of a homogeneous group. The needs and support of every individual and family will be as individual and different as everyone else, and in just as much need of a personalised approach.

Lesbian, Gay, Bisexual and Transgender (LGBT) carers
Whilst nationally, and locally, there are no clear figures on LGBT carers, the Office for National Statistics calculates that 1.5% of the population is LGBT. The charity Stonewall believes this figure to be much higher – 5-7% due to lingering taboos around reporting of sexual orientation. Based on the Stonewall estimates, Carers UK estimates that 6% of Britain's carers are LGBT (390,000) (Source: Carers UK (2015), Facts about carers). This could translate into over 4,000 LGBT carers in Lincolnshire. Nationally, Stonewall found that one in four staff in health and social care have witnessed other colleagues discriminate against a patient or service user because they are LGBT, over the last five years (Source: Stonewall (2015), Unhealthy Attitudes).

Lincolnshire County Council does not monitor sexual orientation, so it is not possible to provide local service data on LGBT carers. However, new service provider Carers FIRST does monitor sexual orientation. Whilst recorded numbers are currently very low, it does enable some identification and the possibility of learning to ensure distinctive needs are understood and met. Personalised approaches to delivering care and support such as using Direct Payments enable a more bespoke approach to support that suits the individual best. Targeted outreach is also important to ensure all communities feel a service will be sensitive to their needs.

Hidden carers
Many carers remain hidden, with little understood about their needs or lives. Mutual caring between an adult son or daughter with a learning disability, and their ageing parent, is a growing phenomenon as families' age. After a lifetime of caring for a son or daughter, frail elderly parents may come to rely more and more on the care their disabled child gives them.

Many people also care at a distance. Carers UK found that of carers not living with the person the care for, just under a quarter live over half an hour away, with 5% living over 2 hours away (Source: Facts about carers (2015)). Distance carers are more likely to be combining care with work and often childcare for young families. Such carers may be providing fewer hours of care, but may take responsibility for managing and co-ordinating care, and emotional wellbeing. They are also much less likely to identify themselves as a carer (Source: Carers UK (2016), Missing Out). NHS research found that 76% of carers providing less than 20 hours of care a week were doing so in another household (NHS Information Centre for Health and Social Care (2010), Survey of Carers in Households 2009/10).

Many young carers remain hidden, as the section above suggests. Young carers of people living with mental ill health, HIV and substance misuse were not identified in the census. Other groups are also hidden: older carers of people with autism; older carers of people learning disability who have never used personal social services; carers within the traveller and gypsy community; young carers within the Eastern European community and caring for people in prison.

Current Activity & Services

Adult Carers
The Lincolnshire Carers Service (LCS) aims to identify carers early on in the caring journey, prevent carer breakdown, collaborating with other agencies in a whole family approach that enables carers to make choices about caring in way that is healthy and sustainable.

Since June 2016, the Lincolnshire Carers Service has been delivered jointly by the SERCO Customer Service Centre (CSC) and registered national charity Carers FIRST. The CSC is the 'front door' to the service, offering a comprehensive telephone based support service. Carers FIRST provide a full range of face to face support services to carers in the community, across the county. Their network of home-based workers is designed to develop and use local community assets to help meet carer need.

Together, the support for adult carers includes: information, advice and signposting; emotional and practical support; a carer's assessment (by phone or face to face); help with family benefits; carer learning; a carers' emergency response service and a personalised range of breaks funded by personal budgets (eligibility criteria apply).

Staff across the LCS have knowledge and experience in mental health, physical disability and long term conditions, learning disability, frailty and ageing, parent carers, palliative and end of life care, dementia, substance misuse and young adult and student carers. Staff share workforce development opportunities wherever feasible.

From October 2016, Carers FIRST has provided a hospital in-reach service, with staff co-located with hospital social work teams. iBCF investment has now enabled extension of this service to all of Lincolnshire's acute and community hospitals.

Many carers value the peace of mind of a plan and registration with the Carers Emergency Response Service, administered by the CSC. In the event of an emergency where the carer is not able to care, the plan is activated. Temporary replacement care is put in place, either from family, friends or an approved agency. In 2015-16, over 5,700 carers held an active emergency care plan and 39 families activated their emergency care plan.

Core services for carers of all ages are funded by Lincolnshire County Council. The core budget has remained protected at the same levels for the last five years in a difficult financial climate.

Further joint Health and Social Care investment has been made from the improved Better Care Fund, with new projects supporting carers to retain or re-enter employment, supporting carer-friendly pharmacies, improving joint working with health providers, and improving digital information and online support for carers.

Young Carers
Lincolnshire County Council's Early Help team supports young carers up to the age of 19. Lincolnshire Young Carers works to the principle that the majority of support needed by young carers and their families comes best from those services and professionals who already know them well, and can remain involved over a sustained period: e.g. schools and universal children's services. The service has a Young Carers Lead to support multi-agency professionals and services to improve outcomes for young carers.

Young carers can now access a single holistic assessment appropriate to their level of need (rather than multiple 'specialist' assessments): an Early Help Assessment, a Child and Adolescent Mental Health Assessment, or a Social Care assessment.

A range of support relevant to the young person's needs is offered. This may include peer support, youth groups, support in a schools setting, advocacy, counselling. Online counselling services are also available via Kooth. The team works closely with schools, the Children's Health Service, including the Children and Young People's Nurses and Children's Social Care, primary care and pharmacies to raise awareness of young carers. In addition, the team supports schools with the important national programme run by the national Children's Society: Young Carers in Schools Award.

The team also maintains a Young Carers Register. In 2017, 1174 young carers were known to the local authority. 17% were aged 5-11 and 83% were aged 11 to 19. 109 new referrals were received in 2017. Some young carers will have support from Lincolnshire Young Carers (136 in 2015-16), and others will be supported via universal or other children's services. In 2016, 639 young carers supported a parent and 64 supported both parents. 111 young carers cared for a parent and a sibling. The majority of the remaining young carers helped care for a sibling. 49 young carers were 'children in need' and 19 were known to Child Protection. 129 were supported by the Team Around the Child.

See Figure 7. on the Supplementary Data Document for further information.

The implementation of the Care Act and introduction of new national eligibility criteria has enabled a more focussed approach, better supporting those with the greatest levels of need.

Direct Payments
Direct Payments have increased in value to enable carers to have a range of personalised breaks throughout the year and make the caring role sustainable. Carers' breaks include assistance with housework and gardening. Leisure and time away from caring are particularly important for carers caring for over 50 hours a week, and where the adult is not eligible for social care.

A recent local review of Personal Budgets found a correlation between the number of hours caring and the need to take time out of the role. 78% of carers in receipt of a personal budget said it was an important or the most important service in comparison to others they received, as active people able to meet their own needs with support (Source: LCC Adult Care (2014), Review of Carers Personal Budgets).

Other services of relevance for carers:
Every One has broadened its role to work on initiatives that support inclusion and a good quality of life for everyone with needs, to include e.g. carer friendly communities. The iBCF funds the Carer Quality Award, which supports employers and health services to promote positive carer aware practice. It also supports the Military, Veterans and Families Network and facilitates a Co-production Network.

The Alzheimer's Society has been commissioned by the County Council to provide a Dementia Family Support Service across Lincolnshire. It provides information, advice, practical and emotional support for families after a diagnosis of dementia, enabling more families to continue to live independently at home, in greater confidence, with the support they need. It has developed a successful hospital in-reach service in all of Lincolnshire's hospitals, supporting patients with dementia and their families. It also supports prisoners with dementia.

The Lincolnshire Stroke Recovery Service offers a service to support families in the first year of a stroke diagnosis.

Unmet Needs & Gaps

Gaps in service

  • The identification challenge and 'Making Every Contact Count' - Many people who are caring will not recognise themselves as carers, or that they have needs of their own. Carers and their needs are often not recognised by professionals until they are at breaking point. Frontline professionals such as GPs, social workers and pharmacists play a central role in ensuring carers are identified and then guided to support as early as possible in their caring journey (Source: Carers UK (2016), Missing Out).
  • GPs and hospitals play a vital role in helping families to identify when they are in a caring role, or about to enter one. However, only 5% are currently referred to Lincolnshire carer services by a Health professional. This is a priority area to develop. Diagnosis and hospital discharge are the most common starting points of the caring journey.
  • Teachers and schools have a key role to pro-actively identify and support young carers: Young carers are recognised by Ofsted as a group with protected characteristics in need of specialist support (Source: School Inspection Handbook (2018)). It is possible that many young carers are not recognised or supported. Some schools in Lincolnshire provide very high quality support for young carers but many provide little or no support.
  • Colleges and universities have a key role to pro-actively identify and support young student carers: They need to offer young adult carers a clear early opportunity in their studies to identify themselves, when support could have the greatest impact.
  • Early identification enables informed choices: Information, support and advice helps families maintain some control, balance and choice over life. It can help prevent caring becoming a struggle, or having a negative impact on health, relationships, education, finances and career.
  • We need to close the gap between the census records of young adult carers, and the numbers of young adult carers known to the service: Too many young adult carers are not recognised or supported, and do not receive a formal assessment of their needs, despite service provision being available from Carers FIRST.
  • More carers need support to plan for the future: including emergencies, and make choices about their lives such as combining care and employment, or leaving the caring role; in particular older carers of adults with learning disability.
  • Develop digital self-serve options to make it quicker and easier for carers to get information and help.
  • Ensure the health needs of carers are recognised by GPs and that carers can access timely emotional support and counselling when necessary.
  • Build Carer Friendly Communities: developing universal support for carers in the community – for example the role of community pharmacies or leisure centres, and helping address the challenges of social isolation and loneliness.
  • Address gaps in knowledge and service for hidden carers including: diversity groups, traveller communities, new immigrant communities.
  • Address changing needs and demographics of new groups such as older sandwich carers. Nearly a third of grandparents who care for a grandchild under 16 has a parent still alive.
  • Address current gaps in local commissioning intelligence for adult carers and young carers: short and long term outcome data including educational and career attainment; employment, poverty and finance; physical and mental health of carers; health service data for carers, including avoidable acute admissions and planned discharge; safeguarding, domestic abuse, relationship breakdown, suicide and carers.

Local Views & Insights

Lincolnshire Carers Strategy
Lincolnshire's Carers Strategies are built upon years of carer insight from partnership and group working. Carers of all ages developed outcomes they considered to be the most important for all services to help them achieve:

  • to be recognised and valued;
  • to feel supported; to have a balanced quality of life;
  • to be informed;
  • to be respected, included and involved;
  • to enjoy good physical and mental health; to be financially informed;
  • and to feel confident in the future

(Source: Joint Lincolnshire Carers Strategy 2014-18)

(See Figure 1 on Supplementary Data Document)

Co-production is important to ongoing work to improve services and opportunities. Carers described the ideal carer-friendly GP practice, and are involved in various aspects of service improvement including service review. The local Joint Carers Strategy continues to be delivered upon in 2018, with new iBCF funded projects working with Health partners to deliver carer aware community pharmacy, primary and secondary health care.

Local carer outcomes are also reflected nationally, such as the annual Carers Week research conducted by the Carers Trust. Carers want to be supported within their wider community - a Carer Friendly local community – by for example; local pharmacies, education, health services, employers, and leisure services. Carer awareness and support is not the sole responsibility of specialist carers' services. (Source: Carers Week (2016), Building Carer Friendly Communities)

Nationally, 'The State of Caring 2016', (the annual independent Carers UK survey with over 6,000carers) , highlights how many carers still did not receive sufficient practical support, waited too long for help, did not have a choice about whether to care or not, particularly at discharge from hospital and struggled to juggle care with paid work. Most did not feel confident about the future.

Nationally, In Control's Third National Personal Budget Survey provides positive evidence of the difference to carers lives as a result of the provision of a personal budget to the person they care for. Over 1,300 adult carers were surveyed about the difference that was made to them through the provision of personalised support to the person they cared for. Roughly in line with national peak ages for caring, the majority of respondents (51%) were aged 45-64 and 41% over 65. Carers were most commonly caring for a partner/ spouse (35%), followed by an adult son or daughter (31%) and an older family member (24%). Their self-reported health was notably poorer compared to the general population.

Significantly, more than two thirds of the above carers said that the personal budget had made things better in relation to their ability to continue caring (78%), the quality of life for the person being cared for (79%) and the quality of life for the carer (71%). Furthermore, around half of carers said that things had also got better in terms of day to day stress (60%), choice and control over their own life (51%) and that the relationship with the person they cared for had improved (49%).

(Source: In Control (2014), Third National Personal Budget Survey using the Personal Outcomes Evaluation Tool (POET)

Voices of Young Carers
National evidence suggests that young carers want:

  • More help for the people they care for
  • More breaks from caring
  • More choice about the level of caring they provide
  • Not to feel worried or guilty
  • Education and a career
  • Understanding and flexibility
  • Continuity of keyworker
  • To do fun things with friends.

This is endorsed by the available information from consultations with Young Carers in Lincolnshire, most of the above themes being mentioned in some way. The most recent consultation took place in October 2016. Primary messages from this consultation were:

  • Young carers worry about the people they care for when they are away from them.
  • Young carers worry what will happen to them if their family is very sick or die.
  • Young carers often do not understand the medical conditions of the person they care for.
  • Young carers do not know what support is available, or how to access it.
  • Young carers think more support should be available for the adults they care for.
  • Young carers want to care and feel they do an important job.
  • Young carers do not think schools and health services understand their caring role, nor value it.

Risks of not doing something

The negative impact of unmet needs on adult carers becomes more severe the longer the adult is a carer. Negative impacts include poor financial wellbeing, health and mental wellbeing. Risks may include personal safety. Leaving carers unsupported increases the risk of crisis and breakdown, increasing costs to the health, social care, educational and economic system.

The impacts of unmet needs are particularly severe for young carers and young adult carers: affecting long term health, wellbeing and life chances. Impacts on young carers where the needs of the adult are not met:

  • School attendance
  • Educational attainment
  • Bullying, social isolation
  • Mental health impacts
  • Limited opportunities to participate in peer activities
  • Knock on long term impacts into adult life: careers and income earning potential.

(Source: The Children's Society (2013) Hidden from View)

Impacts on young adult carers

  • Mental health
  • Educational attainment
  • Bullying, social isolation, loneliness
  • Career choices impacts
  • Impacts on life choices
  • Ability to sustain employment

(Source: Carers Trust (2014), Time to be heard)

Impacts on physical and mental health of carers

  • Reduced resilience and ability to cope
  • Increasing social isolation/ shrinking social networks/ loneliness
  • Decrease in/ loss of income
  • Decrease in/ loss of employment and purposeful occupation
  • Negative impacts on self-esteem and confidence
  • Increased risk of carer breakdown
  • Impacts of poor housing on health
  • Higher incidence of depression, stress and anxiety
  • Increase in physical illness
  • Increased risk of suicide

(Source: Carers Week (2016), Building Carer Friendly Communities)

Risks to personal safety for carers, or the person cared for

  • Increased risk of domestic abuse and homicide
  • Increased risk of hate crime in poorly policed areas
  • Increased risk of personal injury from poorly adapted housing

(Source: Carers UK (2016), Caring Homes: how the Carers Strategy can make housing suitable for carers. A research summary)

Impact on employment, income and family finances

  • Increased levels of poverty
  • Risk of longer term poverty into old age due to inability to build pension savings
  • Higher levels of unemployment
  • Higher levels of part time working
  • Reduced opportunities to develop careers

(Source: Carers UK (2016), State of Caring Report)

Financial implications to the Health and Social Care system

  • Increased levels of crisis requiring emergency short term care
  • Increase in admissions to long term care
  • Undiagnosed health issues
  • Avoidable hospital admissions
  • Costs of legal action due to failure to meet legal duties

(Source: Carers UK (2016) Pressure Points: carers and the NHS)

Legal, performance and reputational implications

  • County Council will fail to meet numerous statutory duties as set out in the Care Act 2014 and Children and Families Act 2014
  • County Council will fail national Adult Social Care Outcome Framework (ASCOF) indicators, Short and Long Term Care (SALT) returns and its own Council Business Plan measures
  • Reputational damage to the County Council and NHS services
  • NHS services will fail in their 'Commitment to Carers'

What is coming on the horizon?

Nationally

  • The new national Carers Strategy was due in 2017, but has since been subsumed into the forthcoming Green Paper on Adult Social Care (due summer 2018). A national Carers Action Plan has been published.
  • A continuing national focus on the integration of health and social care.
  • Social Care Green Paper and announcements on the future funding of health and social care are expected later in 2018.

Locally

  • The Joint Carers Strategy is part of the 2018 Health and Wellbeing Strategy, where Carers are one of the key priorities. This represents the continuing priority of improving the experience and support for carers' right across the Health and Care system.
  • A strengthened focus on 'prevention', with a move of responsibility for the Carers agenda to the Director of Public Health. Public Health and Adult Social Care now form a new directorate of Adult Care and Community Wellbeing.
  • Continuing to embed aspects of the Care Act into business as usual across the County Council and Health providers – in particular developing effective whole family approaches.
  • Continuing to contribute to local initiatives to integrate health and social care, including working ever more closely with Neighbourhood Teams, and on the self-care agenda and with District Councils, particularly through their Housing functions.
  • Working with the Lincolnshire Health community and the Sustainability and Transformation Plan to ensure a holistic approach to meet the needs of carers.
  • Continuing to commission hospital based in-reach services for carers and families living with dementia to support safe discharge in the county's four acute hospitals.
  • Integrated Personalised Commissioning is an opportunity as yet to be fully realised in Lincolnshire.

What should we be doing next?

The Lincolnshire County Council Carers Commissioning Strategy 2016–18 reaffirms our commitment to supporting a greater number of Lincolnshire's carers. The strategy and accompanying delivery action plan has four key aims:

  1. Early help and support
  2. Collaboration
  3. Assurance
  4. Workforce Development

The strategy recognises the importance of collaborating with our key strategic partners to improve the identification of carers and enable them access to early help and support.

Carers who feel well informed and supported are more able to sustain their caring role. We will therefore continue to work with commissioned services to improve the quality of provision and ensure an appropriately skilled workforce.

In 2018, iBCF investment has enabled us to take a greater pro-active and preventative approach to reach out to Lincolnshire's 'hidden' carers at a much earlier stage in their experience.

  • A Department of Health and Social Care/Carers UK led 'Employment for Carers' project will support working, unemployed and former carers to retain or return to the workplace, as well as offering a programme of information and support to employers.
  • We will work with the Lincolnshire Pharmaceutical Committee to support the expansion and impact of Healthy Living Pharmacies, training health champions to proactively identify and signpost carers, including young carers. A Health engagement programme will carry out similar work with community, primary and secondary health providers.
  • The Carers Quality Award will recognise services and employers who provide a 'carer friendly' level of customer service – such as Carers Registers and information for carers within GP practices.

Commissioned services are monitored through contract management. Achievements from the Joint Carers Strategy and Commissioning Strategy will be reported upon in a Carers Annual Report, due summer 2018.

The Commissioning Strategy will be refreshed in late 2018, to be informed by the forthcoming national Carers Action Plan. We will continue to deliver to the priorities of the Health and Wellbeing Strategy and Carers Commissioning Strategy, as set out in the respective Delivery Plans.

 

If you need to contact us about this topic, please email JSNA@lincolnshire.gov.uk

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