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Topic on a Page - Carers

Data Sources:

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:

Adult Social Care Outcomes Framework

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

State of Caring 2019 Report

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

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

End of life care for adults: Service Delivery [NG142] Published October 2019

Supporting adult carers [NG150] Published January 2020

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:

Connect to Support Lincolnshire

House of Commons Library Briefing Papers:

Carers Allowance

Support for family and friends carers looking after children

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: Dec-19

JSNA Topic: Carers

Background

A carer is anyone who cares, unpaid for a friend or family member, who due to illness, disability, frailty, a mental health problem or addiction cannot manage without their support (Source: Carers Trust). Caring affects almost everybody in their lifetime. Three in five of the UK population will become an unpaid family carer. In the UK workforce, one in seven is estimated to be in a caring role. Each year, 2 million people become carers, and around the same number cease their caring responsibilities. (Source: Carers Week (2016), Building Carer Friendly Communities).

In Lincolnshire it is estimated there are 84,000 unpaid family carers (Source: Buckner and Yeandle, (2015) Valuing Carers 2015 – The rising value of Carers Support) and given the county's ageing population, this number is predicted to increase further. The value of the labour of Lincolnshire's unpaid carers is estimated to be worth £1,677 million. (Source: Buckner and Yeandle, 2015). This is over seven times the annual budget of Adult Social Care.

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. "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).

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.

Teachers, schools, colleges and health services 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. The negative impacts of caring on young carers and young adult carers and student carers, can have a long term impact on educational attainment, mental health, careers, and choice and control over their own lives.

Context

National Strategies, Policies & Guidance

The Care Act (2014) and the Children and Families Act (2014) give carers full legal recognition, by placing their needs and rights on an equal footing to those for whom they care. Carers have the right to choose whether to care for someone or not – there is no legal obligation upon families to provide care.

Councils have a general 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 when assessing or supporting an adult or child in need. The Local Authority has a legal responsibility to prevent a young carer providing inappropriate or excessive levels of care to an adult or child. A duty is also placed on the NHS to collaborate.

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

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.

The NHS Long Term Plan (2019) builds on the policy platform of the NHS Five Year Forward View and commits the NHS to find new ways to support carers and build on the new rights created by the Care Act (2014). These were set out in NHS England's Commitment to Carers (2014) which recognises the role of carers and support they need to fulfil the caring role. The Carers Toolkit provides guidance for health and social care organisations to work together to identify and support the wellbeing of carers and their families. NHS England's Commissioning for Carers offers a set of 10 Principles and resources to support Clinical Commissioning, 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.

In lieu of a new national strategy, a multi-departmental Carers Action Plan (2018-20) has published a one year progress report. This focuses on services and systems that work for carers, employment and financial wellbeing, supporting young carers, recognising and supporting carers in the wider community, building research and evidence to improve outcomes for carers.

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

  • 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

What is the picture in Lincolnshire?

What the data is telling us

The Census is the biggest dataset concerning carers which allows for a comprehensive breakdown data for local areas. The 2011 Census reported 79,262 people of all ages who reported they provide unpaid care in Lincolnshire. The number of carers is projected to increase to 88,000 by 2021, applying an estimated growth rate of 11% (Source: Buckner and Yeandle, (2015).

The 2019 GP Survey found that 17% of the population in England over the age of 16 are carers.

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 showed. The Royal College of GPs estimates there are approximately 3,200 young carers in an average CCG area.

Over 20,000 carers provided 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)).

The number of those caring in the UK is growing steadily and will continue to do so as the population ages and lives longer with long term illness. Between 2001 and 2015, 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 (6.2%) in the same period.

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. (Source: Buckner and Yeandle (2015)). 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)).

One of these growing life limiting illnesses is dementia.– for example 12,216 people aged 65 and over were living with dementia in the county in 2019 – a figure set to increase by 54.2% by 2035 (Source: POPPI – Dementia Prevalence). This is greater than the English average of 51.2% (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. Carers aged 75 and over have increased by 35% in the last decade, reflected locally. Over half of the carers supported through Carers Services are over 65 (5,723 in 2018-19). The number of carers supported aged over 85, more than doubled from 682 in 2016-17 to 1,464 in 2018-19 (Sources: LCC SALT 2018-19).

The burden on carers is also growing steadily; the amount of homecare funded by local authorities in England decreased by 7% between 2011 and 2014. 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. The increasing burden of care on carers is a trend that should be monitored. (Source: Buckner and Yeandle, (2015).

The burden of care for carers aged over 70, is also growing. Locally, 48% of carers aged between 65 and 84 spend 100 hours or more looking after the person they care for. 42% of carers aged 85 and older spend 100 hours or more looking after the person they care for.

Respondents to the Survey of Adult Carers in England (Lincolnshire carers who had had an assessment or received a service for themselves or their family in the past year) reported that the most common reasons for caring were:

  • Caring for someone with a physical disability (55%)
  • Caring for someone with a long standing illness (43%)
  • Caring for problems connected with ageing (36%)

The cohort profile of the same survey was:

  • Mostly retired (61%)
  • 15% employed
  • Average age 67
  • 60% were 65 or over
  • 65% female and 35% male
  • 59% had a disability or long-standing illness themselves (an increase from the previous survey)

(Source: NHS Digital (2019), Survey of Adult Carers in England)

The Lincolnshire Carers Service reports the impact of the caring role on carers' health and wellbeing. 35% of carers assessed reported that their physical and/or mental health was at risk as a result of their caring role, experiencing depression, stress, anxiety and fatigue. 65% reported a significant impact on their wellbeing. Over half experienced an impact on their relationships, and nearly one third experienced an impact at work. (Source: LCC (2015), Carers Commissioning Strategic Needs Analysis)

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. East Lindsey is ranked second 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. In these circumstances 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
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, 10,324 adult carers in 2018-19 received a service for themselves or the adult they cared for (who may be eligible for social care in their own right). Of the carers assessed, 64% met the 2014 Care Act national threshold for eligibility in their own right (Source: Lincolnshire County Council (LCC) SALT 2018-19).

Numbers are lower than the census for a variety of reasons. Whilst many people manage well without support (a tipping point appears to be caring for 20 hours or more a week), people tend to make contact with services when they are struggling. However many people will not be aware of services for carers, nor recognise themselves as a 'carer'. It can take years for a person to realise they are in a caring role and self-identify 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).

Education and health professionals have a key role to play in pro-active identification of a child or adult in a caring role. The earlier a carer is identified, the more effective information and help can be to put appropriate support in place, enable informed choices, promote resilience and prevent breakdown. Indications, following investment in early outreach to primary care, schools and pharmacies, are that more carers are seeking help earlier in 'the carer journey'.

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 on-going funded support. (Source: LCC Carers Strategy Performance Report 2018-19).

The bi-annual Department of Health and Social Care Personal Social Services Survey of Adult Carers in England 2018-19 provides a snapshot of all carers' overall experience with Adult Social Services (regardless of whether or not they are supported by Carers Services). The figures for Lincolnshire show a slight positive variation from previous years:

  • 67% of carers who received support or services were extremely, very or quite satisfied with the support or services they received.
  • 66% feel involved or consulted about the person they care for.
  • 45% of carers find it easy to find information about services.
  • 33% of carers reported they had as much social contact as they would like.

Key Inequalities

Carers, particularly older 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 poor health including physical strain, stress-related illness such as high blood pressure, anxiety and depression. (Source: ONS (2011)) Research by the Carers Trust found that 1 in 4 carers struggled to get to their own health tests, check-ups and specialist appointments. If carers cannot get to the doctor to maintain their health and wellbeing, it is likely that their health will deteriorate.

The impact of caring on mental health is less understood. Many carers have mental health problems of their own, with a high proportion of carers on anti-depressants. Carers, who gave up working in order to care, 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 such as resilience and coping mechanisms are affected.

New research by Carers UK has found that 1 in 7 workers in the UK are juggling care with paid work, and 7 in 10 working carers use annual leave to care or do overtime to make up for hours spent caring. This is a significant increase to 5 million workers in the UK in a caring role in 2019, from 3 million at the last Census of 2011. 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, affecting long term financial security. The same findings were also found in an LCC survey of staff in a caring role of 260 respondents. (Source: LCC Employee Carer Survey, 2019).

Research suggests that the burden of caring can be potentially reduced when a balance can be struck between paid work and unpaid caring. (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 them to hold their position in the labour market and in doing so, 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

Where a caring role impacts on employment, this often results in a sharp reduction in household income. Almost 1 in 3 carers had seen a drop of £20,000 a year in their household income as a result of caring. This is compounded in the areas of greatest deprivation in Lincolnshire which tend to have the oldest and most unwell populations where care needs are greater. Long-term full time carers often become poorer and experience lower wellbeing and health, the longer they provide care. 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.

Carers UK research in 2014 found carers face higher utility bills, higher transport costs, higher shopping bills, spending on care services and sometimes the cost of home adaptations. Half of working age carers in the UK lives in a household where no-one is in paid work. Rising fuel and utility costs therefore have a disproportionate impact on carers.

Research by the Children's Society identifies the differential impact that caring has on young carers compared to other children; including restricting educational attainment, and the knock-on effect that this can have on employment opportunities, careers and later life. Many young carers' families are living on reduced income (living on benefits, limiting disability, worklessness).

The needs of young carers and 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. 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.

Young adult carers are less likely to enter further or higher education. There is a one in three likelihood of a young carer at Year 9 becoming 'not in education, employment or training' (NEET), compared to a 1 in 4 chance for non-carers. The national NEET profile for young carers is higher than the national profile of those not in education, employment or training. Being NEET between the ages of 16-19 can have a huge impact on a person's outcomes later on in life. '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 go on to further or higher education, 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 struggle 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 been given a carer's assessment, and almost a third reported their family was not receiving good services and support.

Being a young carer and young adult carer also has an impact on early employment. Young adult carers 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.

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. 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 connected with financial insecurity and inequality.

The impacts and needs of carers can be different because of gender. 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.

The 2011 Census showed nationally there were just under 600,000 Black Asian and Minority Ethnic (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.

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. Whilst this is fast changing in parts of the county with rapidly growing communities from Eastern Europe, this may compound the risk of isolation for BAME carers in the county. The Carers Service does support small numbers of families from BAME communities.

Current Activity & Services

Adult Carers
The Lincolnshire Carers Service (LCS) is 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 to carers. Their county wide network of home-based workers enables positive local relationships with partners and use of community assets to support carers. The service aims to promote early identification of carers, support their health and wellbeing and prevent crisis breakdown.

The offer to adult carers includes:

  • Information, advice and signposting
  • Emotional and practical support
  • Statutory carer's assessment, phone, email or face to face
  • Peer support in the form of wellbeing groups
  • Courses to support carers (Confidently Caring)
  • Benefits service
  • Carers Emergency Response Service
  • Online services including Digital Resource for Carers, online chat forum
  • Employers for Carers programme: support for working carers and employers
  • Employment support programme
  • Carer Personal Budgets which can be used flexibly to meet eligible need as required. Examples include fund breaks and relieving carer burden (national eligibility criteria apply).
  • Hospital In-reach service
  • Carer Quality Award and Carer Awareness Outreach Programmes in Primary Care, Pharmacies, Health providers, business and employers
  • Carer engagement
  • Opportunities to influence service delivery: Carer Forum and Carer Co-production group
  • Professional staff bulletin

The service supports a broad range of carers including:

  • Young adult / student carers aged 16-25
  • Parent carers
  • Working carers
  • Mental health carers
  • Substance misuse carers
  • Learning Disability carers
  • Physical disability and serious long term conditions
  • Frailty and ageing
  • Dementia
  • Serious illness
  • Palliative and end of life care
  • Veterans and carers in the military

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 works hard to ensure no child has inappropriate or excessive caring duties and that young carers have access to the universal offer for children. A range of support relevant to the young person's needs is offered. This may include young carer peer support, local youth groups, support in a school setting, advocacy; counselling and one to one support. Online counselling services are also available via Kooth. The team works closely with schools, Healthy Minds, the Children's Health Service, including the Children and Young People's Nurses, Children's and Adults' Social Care, substance misuse, adult mental health services, primary care and pharmacies to raise awareness of young carers. The service also offers a Young Carer's Card to help young carers be taken seriously by professionals.

Young carers, depending on their level of need, may access a single holistic Child and Family assessment rather than multiple 'specialist' assessments. This takes into consideration the impact of the caring role alongside other identified needs.

The majority of Lincolnshire schools now have a named contact for young carers able to provide high quality support, including those which participate in the Young Carers in Schools Programme. The Early Help Young Carers Lead supports schools with Assessments, Children/Young People Plans, Safety Plans, establishing and maintaining Young Carer support groups, multi-agency professional working and services to improve outcomes for young carers.

Other services of relevance for carers:
The charity Every One supports initiatives that support inclusion and a good quality of life for everyone with additional support needs. It champions Carer Friendly communities. Its offer to employers, businesses and health providers includes:

  • Carer Awareness training
  • Carers Quality Award
  • 'Employers for Carers'
  • At 2019, just over 40% of Lincolnshire Primary Care practices have achieved or are working towards the Carer Quality Award and maintain an up to date Carers Register.

Every-One also supports the Military, Veterans and Families Network and facilitates a Co-Production Network, supporting user led approaches to Personalisation.

Carers of people with dementia may also be supported by the Dementia Support Service provided by Lincolnshire Partnership Foundation Trust and Admiral Nurses. More information can be found here.

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

Unmet Needs & Gaps

  • 'System-led support for carers' is a priority. Most people do not self-identify as carers. Research shows it can take years for people to recognise they are in a caring role, and then not until they are at breaking point. However, diagnosis and hospital discharge are the most common starting points of the caring journey. Frontline health professionals such as GPs, nurses, pharmacists – and later, social workers – can play a key pro-active therapeutic role by recognising when someone is in a caring role – or about to embark on one. They can help people to self-identify as a carer, and support their resilience by guiding them to support in their own right as early as possible. Referrals from Health are increasing, but this remains a key area of focus.
  • 'System led support for young carers' remains a priority. To date, locally, only three young carers have been identified within Primary Care.
  • Colleges and universities have a key role to pro-actively identify and support young student carers providing young adult carers an early opportunity in their studies to identify themselves, when support could have the greatest impact.
  • There is a gap between the numbers of young carers who receive a service and young adult carers that go on to receive a service, with a concern that they may be lost in transition.
  • More carers need support to plan for the future – including; for contingencies or emergencies, and to make choices about their lives such as combining care and employment, or leaving the caring role. Older carers of adults with a learning disability and their families may need particular support to plan for the future.
  • Continuing to develop online and digital self-serve as options will help increase access to services, help reach more carers, including working carers, and make it quicker and easier for carers to get information and help.
  • More work is needed to develop 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.
  • Further research is needed to identify the numbers of hidden carers of all ages and their needs e.g. LGBTQI+, BAME, traveller communities, new migrant communities, and new groups such as older sandwich carers. Nearly a third of grandparents who care for a grandchild under 16 have a parent still alive. Better understanding will help to address potential gaps in local service provision.
  • Better short and long term outcome data for carers of all ages, 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 and suicide. This will help to identify the benefits for cross sector funding and action to meet needs.

Local Views & Insights

Lincolnshire carers have consistently said that what matters most important to them is to get the help they need quickly. Timeliness of assessments is monitored by contract managers.

The Lincolnshire Carers Strategy is built upon years of carer insight from partnership and co-production. 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 with choice and control
  • to be informed
  • to be respected, included and involved
  • to enjoy good physical and mental health and
  • to feel confident in the future
  • to be financially informed

Co-production is important to on-going 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.

Carers want to be supported within their wider community – enabling Carer Friendly, accessible, inclusive local communities is very important – for example local pharmacies, education, health services, employers, and leisure services. (Source: Carers Week: Building Carer Friendly Communities (2016)).

Nationally, The State of Caring 2019, (the annual independent Carers UK survey with over 7,500 carers), 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.

In regular engagement opportunities, Lincolnshire young carers say they:

  • worry about the people they care for when they are away from them;
  • want to be a child or young person free from worry
  • want to spend time with friends doing things they enjoy
  • want reassurance that the person they care for will be OK when they spend time apart from them, allowing the young person to relax and enjoy having a break from the caring role
  • worry what will happen to them if their family member is very sick or dies;
  • often do not understand the medical conditions of the person they care for;
  • do not know what support is available, or how to access it;
  • think more support should be available for the adults they care for;
  • want to care and feel they do an important job; and they
  • do not think schools and health services either understand or value their caring role.

Risks of not doing something

Adult Carers
The negative impacts on a carer's health and mental wellbeing increases with the duration of the caring role and hours of care: Leaving carers unsupported increases the risk of crisis and breakdown, increasing costs to the health, social care, educational and economic system. Research by Carers UK found that the caring role has a significant impact on the physical and mental health of the carer including:

  • reducing personal resilience and their ability to cope;
  • increasing social isolation and loneliness;
  • lower levels of self-esteem and confidence;
  • increased depression, stress and anxiety; and
  • potential risk of suicide.

From a financial and employment perspective, the State of Caring Report has found that being a carer can lead to:

  • impact on employment, including reducing hours
  • increased levels of poverty, with a greater risk of longer term poverty into old age due to the inability to build pension savings;
  • higher levels of unemployment;
  • higher levels of part time or poorly paid work; and
  • reduced opportunities to develop careers.

Young Carers and Young Adult Carers

The impacts of unmet needs are particularly severe for young carers and young adult carers: affecting long term health, wellbeing and life chances. Research by the Children's Society identifies the following impacts:

  • poor school attendance;
  • lower educational attainment;
  • increased potential of being bullied or experiencing social isolation;
  • increased incidents of mental health problems;
  • limited opportunities to participate in peer activities; and
  • knock-on long term impacts into adult life: careers and income earning potential.

Health and Care System

Carers provide an invaluable service, in Lincolnshire this is estimated to be worth £1,677 million (Source: Buckner and Yeandle), and seven times the local spend on Adult Care. Failure to support carers will place an increased burden on the local health and care system. Carers UK have identified this as being:

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

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; and
  • NHS services will fail in its Commitment to Carers as outlined in the Department of Health's mandate to NHS England and the NHS Outcomes Framework and Long Term Plan.

What is coming on the horizon?

Nationally

  • The National Care Institute for Excellence (NICE) publishes guidance on Carers: provision of support for adult carers in 2020.
  • A new national Carers Strategy is due, and is planned to be subsumed within a forthcoming Green Paper on Adult Social Care.
  • A national focus on System Led Support for Carers across Health and Care.
  • A national focus on preventative, whole family approaches in the context of the integration of health and social care.
  • Personalisation, Universal Personalised Care and Support Planning, Personal Health Budgets.
  • NHSE GP Quality Markers for Carers.
  • NHSE Secondary Care Quality Markers for Carers.
  • Carer Passports.
  • Increased focus on digital and assistive technology provision.

Locally

  • Embedding whole family approaches in social work and multi-agency practice.
  • Personalisation and Carers within Health .
  • 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.
  • ADASS Carers Sector Led Improvement Programme: Deep Dive into Whole Family Approaches.
  • Continuing to commission hospital based in-reach services for carers and families living with dementia to support safe discharge in the county's three acute hospitals.
  • Service evaluation, literature review, benchmarking & lessons learned events as part of re-commissioning of Lincolnshire carers services for children and adults.

What should we be doing next?

The Joint Health and Wellbeing Board Carers Priority Delivery Plan 2019–21 reaffirms Lincolnshire's commitment to supporting more carers earlier and collectively. Four themes underpin the Delivery Plan:

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

Next steps include:

  • 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.

Refresh the Carers Commissioning Strategy in line with the national Carers Action Plan.

Continue to deliver to the priorities of the Health and Wellbeing Strategy and Carers Commissioning Strategy, as set out in the respective Delivery Plans.

 

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