Young Carers

The Carers Trust define a carer as, “anyone who cares, unpaid, for a friend or family member who due to illness, disability, a mental health problem or an addiction cannot cope without their support.” Caring can be a positive and rewarding experience, however, young carers (aged up to 17 years) and young adult carers (18 to 24 years) are less likely to do well at school, to get a job, or to experience a varied social life whilst growing up. 

Some of the support provided by a young carer may include: 

• Cooking, housework and shopping 
• Physical care, such as helping someone in and out of bed 
• Personal care, such as assistance with dressing, toileting etc. 
• Medical, such as changing dressings, administering medication, collecting a prescription, arranging appointments, etc. 
• Managing the family budget 
• Helping with communication 
• Looking after siblings 
• Giving emotional support 

Every young carer in Lincolnshire deserves to be recognised, valued, and supported, to have good health and wellbeing, and achieve their full potential. Like all residents of Lincolnshire, young carers should have access to the right support at the right time, from the right person.

The Children and Families Act (2014), the Care Act (2014) and Working Together (2015) introduced new responsibilities to local government to identify, assess and support young carers, and reduce inappropriate and/or excessive caring by children. A key principle is the prevention of the escalation of need. However, it is recognised that many young carers and young adult carers are not being identified and, consequently, not being offered the help they need. 

• A local authority in England must assess whether a young carer within their area has needs for support and, if so, what those needs are. 
• Where the consent condition is met, a local authority must assess whether a young carer is likely to have needs for support after becoming 18 and, if so, what those needs are. This is known as a ‘Transition Assessment’.  

The People at the Heart of Care – Adult Social Care Reform White Paper (2021) outlines the Department for Education’s intention to amend school census reporting so that schools are clear about who are young carers are, and their needs.  

The Lincolnshire Young Carers Annual Update 2021 shows the number of registered young carers continuing to rise across all areas of the county, and that young carers are predominantly identified by Early Help Teams and the education sector. Encouragingly, work undertaken to increase awareness of young carers is leading to an increase in self-referrals, and referrals from health colleagues. The report also shows a slightly higher proportion of female young carers. This gender split has been consistent over time and comparable to the national average. 

Older and former young carers have reported delays in, or the absence of, a conversation about their caring role and tell us they wished they had known about available support sooner. The average age of young carers at the point of identification is just below 10 years old in Lincolnshire. The earlier a young carer is identified, the more likely they are to secure a positive outcome, if provided with the right support. 

The report shows most of Lincolnshire’s young carers are caring for someone with a physical disability and many are also supporting a person with mental health issues, ADHD/autism, a long-term condition or learning disabilities. This is true of the state across the whole nation. If the subject of the issues faced by young carers are made visible, then carers are more likely to feel confident discussing their impact.  These findings reflect those of The Childrens Society report Hidden from view (2013). They reported 50% of young carers were caring for someone with a physical health problem, 29% for a someone with a mental health problem, 17% for someone with a learning difficulty and, 3% for someone with a sensory impairment. Difficulties such as substance misuse or mental health issues are often hidden for fear of judgement, meaning support often goes unsought, and the number of young people providing care is underestimated (Source: RCPCH). Staff at educational settings, members of peer groups, etc, may be the first to notice a young person struggling.  

The Carers Trust 2022 report, ‘It’s Harder than Anyone Understands’, shows how Coronavirus has made many things more difficult for young carers physically, emotionally and often at the expense of education.  Some young carers explained how extra difficulties during the pandemic has negatively affected their own mental health, leaving them feeling lonely and isolated, with nobody to talk to. Nationally, many young carers have missed education, sometimes continuing to isolate for fear of making their loved ones more poorly, even once schools returned. This has resulted in reduced contact with friends, or with people they talk to, or those they ask for help.  Here, The Children’s Society’s research suggests that up to 27% of young carers aged 11-15 miss school.  Young Carers are likely to be 9 times lower overall at GCSE’s than their peers, and one and a half times more likely to have additional needs of their own – which may also be a contributory factor in lower attainment. 

There are Young Carers from all strata of society, but often, particular groups of society are underrepresented. The Young Carers of Black and Ethnic Minority Families report (2018) highlights young carers from ethnic minority communities are 1.5 times more likely to take on a caring role, reasons for which are unclear, but may be because some groups are more predisposed to health conditions. Marginalised groups have higher incidence of poor mental health and greater difficulties accessing support due, in part, to cultural sensitivities, communication barriers, and stigma. 

There are many factors leading to isolation or loneliness for a young carer. These include: financial pressures; difficulties finding replacement care; social attitudes to caring; disabilities; changes in relationships between the carer and the person they care for; and poor mental health due to the impact of caring (Source: Carers UK & Jo Cox Foundation).  Research reveals 80% of carers have felt lonely or isolated and 57% have lost touch with friends and family because of their caring role. All the following factors are frequently associated with caregiving: low resistance to stressors; weakening of the immune system; fatigue; anorexia; non-intentional weight loss, and physical inactivity. Each of these, in turn, increases the risk of social isolation whilst also being a health burden to the carer. Although there are notably more female unpaid carers, studies have found that male caregivers were four times more likely to experience social isolation than their female counterparts. The same is equally, or more likely, for a young carer. 

Lincolnshire’s Young Carers Service works closely with partner agencies to encourage use of the Early Help Assessment tool (EHAt). The EHAt supports professionals, who have an established professional relationship with a young carer, to explore the impact of their caring role and assess unmet support needs. These needs may then be met by existing health or education support services; the carer may require an Early Help Worker or may benefit from a peer support group. 

To help in the recognition that young carers are under 18, and are not usually the next of kin, a Young Carers Card has been developed. The card allows professionals to recognise a young person as a carer and evade barriers relating to age or consent, reassuring professionals in sharing confidential information where appropriate.  A professional may share information about medication (the effects and safe handling of), a diagnosis (background information and the management of a condition), or a prognosis (how the condition may develop in the future). A mother of a young carer explained a situation whereby her son was initially not able to accompany her for hospital tests, causing the mother to panic. After showing the Young Carer Card, the hospital allowed the son to stay which helped the mother feel calmer and more confident. 

Young carers are offered a transition assessment when they reach 16years. The assessment explores if their current caring role or responsibilities have changed and whether they need additional help at this key transition stage: leaving school, starting further education, accessing employment, or receiving support from adult services. Barriers to Employment for Young Adult Carers report (2018) states young carers are twice as likely to not be in education, employment or training (NEET).  Providing a holistic transition assessment helps a young carer to feel confident about decisions they make about their future. The assessment can identify what help they or their family might need to support them making these decisions.  A transition assessment also acts as an opportunity for carers to register with the commissioned carers service provider to continue to receive information even when they have no unmet needs. 

The Children’s Commissioner for England survey of 6000 young people supported by a Young Carers Project (The Big Ask Voices, 2022) found that 25% of respondents were unhappy about their mental health, compared to 20% of other children spoken to.  Young carers who received support were happier about their life overall (66%) than those who did not receive any support (33%). 

Children, families, and young carers are all encouraged to feedback opinions and experiences in order to help providers improve services and ensure people’s needs are met. A person receiving support from Early Help, or attending a Young Carers Group, are encouraged to participate in an annual survey. Results can be found at Let’s Talk Lincolnshire. Preliminary findings suggest young carers find it helpful to have someone they can trust to talk to in confidence about their situation. Young carers enjoy spending time with other young carers who they have things in common with and a shared understanding. These findings reflect national findings by Carers Trust. Families of young carers have an opportunity to respond, and Young Inspectors have been enlisted in Lincolnshire to reach out to those who contribute to the survey, to ensure that their views and suggestions are being heard and are being responded to. 

A Young Carers Participation Group is being developed to ensure co-production of support and services. 

• Support for the Young Carers Participation Group to evolve and find opportunities to co-produce improved information and support for Lincolnshire Young Carers 
• Continue to support partners to identify Young Carers at the earliest opportunity so that they get the right support at the right time. 
• Continue to support all professionals in Lincolnshire to develop their practice in working with young carers and their families through advice and learning opportunities. 
• Support the Young Carers Participation group to lead on and plan a County Wide Young Carers Celebration Event.  
• Continue to work with colleagues in Adult Social Care to develop a ‘whole family working’ approach. 
• Greater understanding and identification of young carers within ethnic minorities 

• Support the new Young Carers Participation Group to evolve and uncover opportunities for co-production to improve information and support for Lincolnshire Young Carers 
• Continue to work in partnership to identify young carers at the earliest opportunity, to improve outcomes, and provide the right support at the right time. 
• Work collaboratively to plan ways everyone can reach out to identify and support the ‘hidden’ groups of young carers across the county 
• Continue to support professionals in Lincolnshire to develop their practice working with young carers, and their families, through advice and learning opportunities. 
• Support the Young Carers Participation group to lead on and plan a countywide young carers celebration event.  
• Work with colleagues in Adult Care, and the wider health and care system, to develop a ‘whole family working’ approach, and to embed this in the integrated care system as best practice develops.