Many young carers are not using the services available to them. Independent researcher Berni Graham looks at one council’s investigation of why this is the case
The life of a young carer is a hard one. Not only do they carry responsibility beyond their years, but that burden can make day-to-day tasks like going to school and completing homework on time extraordinarily challenging.
Despite these sometimes overwhelming challenges, many young carers are not making use of carers’ services available to them.
To investigate the reasons for this, the Islington Local Involvement Network (LINk) commissioned some research. The research consisted of in-depth interviews with eight young carers, aged 16 to 25; a focus group with local, mainly ethnic minority agencies; and interviews with local carers’ organisations.
Analysis of the 2001 Census indicated there was 175,000 carers under 18 in the UK. But smaller-scale studies suggest this to have been an underestimate. A recent study by the BBC and the University of Nottingham, for instance, put the figure at 700,000, or one in 12 children. But, even using the Census data from 2001, Islington was calculated to have 802 carers younger than 18 and 1,513 younger than 25. Only 60 individuals across both of these age groups were known to access carers’ services.
The young carers’ interviews corroborated findings from previous research. For example, they provided substantial care, mostly to parents and siblings, in response to a range of physical and mental health conditions. This included assistance with medication, dressing, bathing, supervision against accidents, accompaniment to medical appointments and interpretation, commonly alongside general care of siblings and housework. Interviewees described very long days as well as duties during the night.
Moreover, caring responsibilities had already had a negative impact, in terms of constant tiredness, stress, anxiety, lack of a social life, poor educational outcomes, bullying at school, reduced employment potential and restricted futures.
One young carer said: “I can’t ever relax fullycan’t be ill, can’t stop, can’t stop ’til certain hour of the day. Then I get a few hours to myself.”
This interview echoed earlier findings of a double jeopardy faced by young carers: typically, they grow up in deprived households and through a combination of factors experience poor educational, employment and income outcomes themselves.
Relationships with peers, one potential source of support, were also found to be impaired. In addition to having less time to socialise, paradoxically the maturity of these young people made it difficult to relate with their peers. Moreover they had commonly grown up sensing they should keep details of their caring responsibilities private.
One of the more interesting policy and practice points emerging was why these young carers were not recognised by social services as such. The focus group concentrated on why young carers or their families might be reluctant to approach services.
Explanations given included expectations in some cultures for care to be provided by family members, a shame related to many types of illness and disability, additional discomfiture attached to be seen as unwilling to care for your own, a lack of self-recognition within the term “carer”, previous negative experiences and, last but far from least, a fear of the consequences, especially of parents being perceived as inadequate and of children being removed.
Despite substantial contact with a range of professionals, including doctors, social workers and teachers, the young carers interviewed were unaware of their entitlements as carers.
As a result, the research focus shifted to why, on the whole, professionals did not initiate carers’ assessments, despite the existence of at least three pieces of legislation providing young carers with the right to assessments and official Department of Health guidance that advises social workers to apply children-in-need criteria to them.
One reason uncovered was lack of recognition. On the whole, the organisations and schools contacted in this study had no systems to identify or record young carers.
The findings also suggested a widespread lack of awareness and disinclination among professionals to apply carer’s legislation and a degree of confusion regarding the entitlement of young people to carers’ assessments. Many professionals said they believed entitlement did not start until 16, albeit all those interviewed were over 16.
One young carer said: “You get some people who don’t believe youI’m saying ‘I’m her carer’, and they’re looking at me like, whatever.”
School was out for Joel
Joel* is 20 and left school at 15 to look after his mother, who is a lone parent. She has had severe arthritis, osteoporosis and depression for over eight years. She has little mobility, poor joint range and is constantly fatigued and in pain. In addition she has poor memory, gets low moods, has problems sleeping at night and can be irritable.
She needs someone with her most of the time to provide physical support when walking and help with dressing, medication and supervision to stop her falling. Joel provides all this care as well as cooking, shopping and accompanying his mother to doctors or other appointments.
Joel left school before completing his GCSEs. His caring role had started by then, affecting his school attendance as well as attracting bullying. Moreover the family moved a few times, which also undermined his education. In the end, he simply stopped going. He has no qualifications and signs on for jobseekers’ allowance.
Although he would like to work, Joel finds it difficult to envisage how he can manage that on top of his caring responsibilities.
He feels stressed and isolated in his role and has no close friends. He would like assistance with looking after his mother, but also to be taken seriously as her carer and be given information about her condition, prognosis and medication.
*Name has been changed
A number of practice points emerged from the Islington Local Involvement Network’s (LINk) research into young carers’ access to services. Specific recommendations were made by Islington LINk based on the findings, many of which were adopted by the council, including commitments to:
● Promote young carers’ awareness of their own situation and of available services.
● Enhance professionals’ and agencies’ awareness and identification of young carers.
● Improve willingness to and numbers of assessments of young carers.
● Pursue a whole family approach towards young carers and their families.
● Revise and develop the young carers’ assessment process to make it simpler.
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