Carers

The Department of Health and Social Care (DHSC) describes an informal/unpaid carer as “someone who provides unpaid help to a friend or family member needing support, perhaps due to illness, older age, disability, a mental health condition or an addiction”, as long as they are not employed to do so. 

Across the UK today, 6.5 million people are carers, supporting a loved one who is older, disabled or seriously ill. That is, 1 in 8 adults who care, unpaid, for family or friends (Source: Carers UK).  There are an estimated 70,391 unpaid family carers in Lincolnshire (Source: Census 2021). Given the county’s ageing population, this number is predicted to increase. The value of labour for Lincolnshire’s unpaid carers of all ages is estimated at £1,677 million – more than seven times the annual budget of Adult Social Care. 

There is a significant impact on the health and wellbeing of a person in a caring role. Burdens intensify as hours of caring increase, and with the extent 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: State of Caring 2016). Carers are twice as likely to suffer poor health compared to the general population, primarily due to a lack of information and support, financial concerns, stress, and social isolation (Source: NHS Long Term Plan). There is also an effect on education and employment – a considerable number of carers give up work to fulfil a caring role, as well as foregoing education, Further or Higher Education, with direct impacts on short- and long-term financial wellbeing due to loss of earnings, pensions contributions, etc. 

Factors contributing to carer isolation and loneliness include: difficulties finding replacement care; social attitudes to caring and disabilities; changes in relationships between the carer and cared for; and poor mental health (Source: Carers UK). Research reveals 80% of carers have felt lonely or isolated, and 57% have lost touch with friends and family because of their caring role. Low resistance to stressors, lowering of the immune system, fatigue, anorexia, non-intentional weight loss and physical inactivity are frequently associated with caregiving; these in turn increase the risk of social isolation. Whilst there are notably more female unpaid carers, studies have found male care-givers were four times more likely to experience social isolation than female counterparts. Young carers are particularly likely to be at risk of becoming isolated (Source: GOV). 

To best support those most at risk, and at the earliest opportunity, the caring role requires clear recognition by health and care professionals, employers, and those in the education sector. Access to information, advice, practical help, financial support and emotional support should be as easy, and seamless as possible.  To assist with this, every carer is eligible for a formal carer’s assessment. 

•  NICE Guideline: Supporting adult carers [NG150], published January 2020. Covering support for adults that provide unpaid care to anyone aged 16 and over with health or social care needs. The guidance aims to help health and social care practitioners identify carers and give them information and support. It covers carers assessments; practical, emotional and social support; training, and support for carers providing end of life care.  
• Informal Carers Research Briefing (2021) states there is no specific Carers Strategy.   
• The 2022 Adult Social Care reform white paper is (effectively) government policy on unpaid carers: People at the Heart of Care: adult social care reform white paper. A 10-year vision for adult social care, and a range of policies to be developed, including those which will help ‘empower those who draw on care, unpaid carers and families’
• NHS Long Term Plan  
  • Section 1 outlines the NHS’ plan to boost ‘out of hospital’ care, dissolving the divide between primary and community health services. There is greater recognition and support for carers to address individual health needs by introducing best-practice Quality Markers for primary care. The Markers highlight best practice in carer identification and support (Section 1.19) 
  • Section 2 pledges stronger NHS action on health inequalities, including identification of, and support for, carers, particularly those from vulnerable communities (section 2.33): 
    • Quality marks for carer-friendly GP practices. Developed with the Care Quality Commission (CQC), these will help carers identify GP services that can accommodate their needs.  
    • The national adoption of carer’s passports will identify carers and enable staff to involve carers in patient care. 
    • Developments to electronic health records will allow people to share their caring status with healthcare professionals wherever they present. 
    • Ensuring more carers understand out-of-hours options and have appropriate back-up support in place if needed. ‘Contingency planning’ conversations and plans will be included in Summary Care Records, allowing professionals confidence to know when and how to call those plans into action when needed.
• The Care Act 2014 came into effect in April 2015. It outlines how local authorities should carry out carers’ assessments and needs assessments; how to determine who is eligible for support; how to charge for both residential care and community care; and their obligations. The Care Act relates mainly to adults in need of care and support, and their adult carers. There are some provisions for the transition of children in need of care and support, parent carers of children in need of care and support, and young carers. However, the main provisions for pre-transition groups are outlined in the Children and Families Act 2014. A summary of what the Care Act 2014 means for unpaid carers is provided by Carers UK. 
• The Joint Health & Wellbeing Strategy for Lincolnshire highlights Carers as one of the seven most important health and wellbeing issues facing the county, and outlines key objectives to address related issues.

Information about Lincolnshire carers is obtained from the Survey of Adult Carers in England (SACE), Adult Social Care Short and Long Term support data (SALT), the Personal Social Services Survey of Adult Carers and the national census. 

Data shows the highest proportion of Lincolnshire’s unpaid carers reside in East Lindsey, the lowest in South Kesteven. There is a correlation with high levels of deprivation and an older age profile in the east of the county. 

SALT and SACE show approximately two thirds of unpaid carers are female, similar to national and regional figures. Female carers, more than male carers, feel their caring role has impacted on employment opportunities and resulted in reducing their hours, or level of responsibility at work (Source: Gov.UK). Female carers are more likely to provide over 50 hours of unpaid care per week (Source: NHS) and be a ‘sandwich’ carer for young children and elderly parents at the same time (Source: Carers UK). This gender inequality does diminish among retired people (Source: ONS). Although females have a longer life expectancy than males, females spend a higher proportion of these additional years in poor health, meaning that women are more likely to need care, rather than providing it, than men. Not all carers recognise or report themselves as carers, so prevalence are likely an underestimate of the true scale; male care givers may be less likely to identify as a carer or to seek help. To better understand this, further research into male carers’ experiences is required (Source: Maturitas).  

SALT data show almost three quarters of Lincolnshire’s unpaid carers are white-British, although some respondents choose not to record their ethnicity so the actual figure may be higher. 

A caring role can significantly impact a carer’s own health and wellbeing.  A significant number of Lincolnshire carers have a long-standing illness, physical impairment, or disability of their own. Only around half of Lincolnshire carers say that they look after themselves well in terms of sleep and eating, with almost a quarter developing a new health condition or experiencing worsening of an existing condition. A high proportion of carers report feeling tired, depressed or stressed, yet less than a fifth had visited a GP. It is vital to have effective pathways and services to provide support  and prevent carer breakdown.

Carers are a priority of Lincolnshire Health and Wellbeing Board, reaffirming Lincolnshire’s commitment to Carers. The Carers Delivery Partnership Board enact a Delivery Plan, with governance and accountability to the Health and Wellbeing Board. 

Lincolnshire County Council (LCC) commission a range of statutory and non-statutory support for carers. Services include information about benefits and financial support, breaks for carers, emergency planning, carers assessments and concerns about safety. 

LCC have worked with Carers UK to offer free Digital Resources for Carers to support a loved one who is older, disabled or seriously ill. There is information relating to health and wellbeing, working and caring, nutrition, technology and COVID-19. LCC have provided a grant to fund Carers First to enhance digital engagement with carers, and supported  technology and training in collaboration with Lincs Digital. Carer volunteers have also been trained to provide peer to peer support for online programmes. 

An area specifically for carers on Connect to Support Lincolnshire has links to services to arrange a break from caring, the carer’s assessment, many digital resources, and financial support. 

The Lincolnshire Carers Service promotes and supports health and wellbeing of carers, helping prevent, reduce, and delay escalation into formal care services of the adult or child with needs. The Service provides support for unpaid carers aged 16 and over. The service can be accessed via the LCC Customer Service Centre, who will triage and refer to other applicable support. The Customer Service Centre refers those requiring statutory assessments to Carers First. 

Carers First are commissioned to undertake statutory Carers assessments. A carer can request an assessment to discover what help they may need. This is a distinct process to a ‘needs assessment’, carried out for a person being cared for, but assessments can be completed at the same time. An assessment may result in provision of a Carer Personal Budget – a benefit paid to eligible unpaid carers. Advice about eligibility, the effect of an award on other benefits or income, how to make a claim, changes in circumstances and so on, can be sought. Carers First are commissioned to reach ‘hidden’ carers – those who may not identify as a “carer”, and so are not aware of, or able to draw on the support available to them.  

Lincolnshire Partnership NHS Foundation Trust (LPFT) provide resources for individuals caring for someone with a mental health issue or substance misuse problem. This includes; how to recognise “a carer”, newsletters, leaflets, carers rights, advocacy, how to self-care, and local support groups. There is information about the orange lanyard scheme to identify carers visiting the wards. 

Employers for Carers, managed and supported by Carers UK, assists employers to retain and manage employees with caring responsibilities. LCC is an umbrella member of the Employers for Carers organisation. Carers First lead the Lincolnshire Employment Programme for Carers, engaging with key organisations to develop Carers Awareness, and develop programmes to support working carers and those that employ them, and support employer-based working carer networks. 

The State of Caring 2019, is an annual independent Carers UK survey with over 7,500 carers. It highlights that 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 the point of discharge from hospital, and struggled to balance care with paid work. Most carers did not feel confident about the future. 

Despite significant communications and information sharing with carers, a high proportion do not ‘reach out for support’ until they are struggling to cope. Some carers have told Carers First that reaching out for help represents a failure to cope and is not something they want to even consider. Others may not recognise themselves as carers but consider caring their ‘duty’ to a loved one. 

During the Covid-19 pandemic, being recognised as an unpaid carer – and being able to explore feelings, fears and challenges, bolstered feelings of community, of comradeship and that, if support was needed, there was a safety net. Many carers required signposting advice, or some clarification about their situation. Often, small acts of kindness made the biggest difference to carers. 

Research, commissioned by Carers First, found over 90% of carers felt an improvement in their lives, were resilient in their caring role, were listened to and their own needs taken into account, more confident and informed, and that they would recommend Carers First following support from the service. 

The Carers UK annual report 2020-21 outlines a number of national issues yet to be fully addressed, which are echoed locally. 

• System-led support for carers and young carers. 
• 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 – to plan for contingencies or emergencies. 
• Develop online and digital self-serve options. 
• Develop Carer Friendly Communities: universal support for carers in the community. For example, the role of community pharmacies or leisure centres, and address social isolation and loneliness.
• Further research is needed to identify the numbers and needs of hidden carers of all ages e.g. LGBTQI++, ethnic minority groups, travellers, new migrant communities, and newly defined groups such as older sandwich carers.
• The visibility of carers and availability of support networks requires further work. 

An increase in referrals for support suggests carers are still suffering impacts of Covid-19. Membership of the Carer Delivery Group, and the Delivery Plan, are being revised taking account of learning from the pandemic. This affords an opportunity to: 

• strengthen commitment to listen to, and identify the needs of, carers from all partners, 
• refocus priorities for 2022/23 and ensure delivery to achieve improved outcomes 
• secure greater system ownership to implementing service change that improves outcomes for carers 

A Memorandum of Understanding will soon secure commitment across the Health and Wellbeing Board and ICS partners.