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Do you care?

Carers UK estimates that 1 in 8 UK adults are carers. With many not being formally recognized or supported, Sarah Barker profiles one family unit struggling to cope, and investigates sources of care for carers.

Helen is 45. Her husband, 51-year-old Michael, was born with a complex congenital heart condition. He has had three operations and is currently awaiting a valve replacement. His condition has become more debilitating as he has got older. He took early retirement as work had become increasingly difficult as his stamina and energy declined. Helen and Michael have three children; two grown up, who live away from home, and 15-year-old Ellie. Michael needs regular care as he has reduced mobility and day-to-day tasks are difficult due to his constant tiredness.

Helen suffers from diabetes, a spinal injury and depression. She takes anti-depressants, suffers mood swings and is constantly worried and exhausted.

Helen would like more help but is not sure what is available and does not know what questions she should be asking. Michael does not like having strangers in the home providing care. Helen and Michael therefore rely on relatives and friends to help with care arrangements. They have a roster system with people taking turns to cover the care arrangements. Some relatives live too far away to travel daily and so have to stay overnight when it is their turn, despite having their own families to consider.

Since Michael stopped working, the household has suffered financially. Although social services have assessed Michael's needs, Helen is not sure if he is receiving all financial benefits available and finds it difficult to find out what benefits they might be entitled to. Helen's manager recently suggested that she ask social services about the Carers' Assessment which is also available from social services. Helen had not been told about this before. When she enquired about the Carers' Assessment the person she spoke to had not heard of it. Her manager put Helen in touch with Carers UK and gave her a copy of a leaflet that provides details of the Carers' Assessment. 

Helen works full-time. She has found combining full-time employment with her caring role and her own health problems difficult. She feels that she is constantly trying to "juggle" her commitments. She considered giving up work altogether but realised that she needs to work, not only financially, but also to give her something to focus on. She finds it difficult to concentrate at work and her frequent absences have affected her performance. Her manager has helped by providing details of organisations that can provide help and support. However, although her manager has allowed her paid time off, Helen has found it difficult to find time to contact the organisations, as she still has to try to do her job. Her manager has also adjusted her workload and suggested changing her working pattern. However, any reduction in her hours would cause further financial pressure. Helen worries that she will be unable to continue working. 

Helen used to enjoy sewing and cooking but feels guilty when she dedicates time to herself. She feels angry and frustrated that life is passing her by and that she is not really "living". 

Ellie spends her holidays at home helping her dad nstead of being out with her friends. Her mum likes her to come straight home after school so that someone is with Michael when other carers have gone home, before Helen gets back from work. Ellie has not told her friends about her home situation, as she does not want to be different. She finds it difficult to concentrate at school and is worried about her GCSEs. She would like to go to university but worries about leaving her mum and dad.

Helen and Ellie do not see themselves as "carers" and feel that looking after Michael is part of family life. They do not like to complain and feel guilty about having a life outside the home when Michael has no choice. 

Michael does not know what he would do without Helen and Ellie, as he constantly tells them. Although he finds it hard when they go to school and work, he also worries that they have given up their own lives to look after him. 

The story of Helen and her family, based on a real carer and her family, is typical of some people living with a long-term health condition or disability. Typical factors include:

  • Carer’s own health. Depression, anxiety, stress and other mental illnesses are particularly common. Also common are muscular-skeletal injuries through the continual strain of lifting or assisting a relative with limited mobility.
  • Emotional difficulties such as guilt, anger and frustration.
  • Financial difficulties from the carer and / or person cared for having to reduce or give up work and additional costs associated with the illness or disability. 
  • Wanting / needing more help, but not knowing what is available or how to access it.
  • Work-related issues due to trying to combine work and caring.
  • Not having a life outside caring.

It is important that carers tell social services, their GP and their employer that they are providing care.

The Employment Act 2010 provides protection for carers through the inclusion of Associative Discrimination. This means that carers must not be treated less favourably than other employees. This could include flexible or alternative working patterns, including home working. Some employers have signed up to the Working Families and Employers for Carers scheme, undertaking to recognise and provide support to staff who are carers. Some employers provide specific networks or support groups and make other provisions for carers. For instance, the Civil Service Benevolent Fund can arrange to complete a “carer’s passport” for civil service staff. 

The Carer’s Passport identifies how the carer is affected by their caring role and provides advice to the carer’s manager, aiming to help the carer to maintain a healthy work-life balance.

Sarah Barker

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