Carers perspective on home dialysis: support, facts and legislation

Abstract

Carers provide unpaid care and support to ill, frail or disabled friends or family members. It is important for health professionals to give carers of home dialysis patients time, space and permission to talk about how caring impacts upon their lives and to look at how best to support them.

Introduction

In order to gain insight into the perspective of a dialysis patient’s carer, it is important to listen to and talk to carers. This is not as easy as it seems, since carers often feel that they cannot talk freely about the burden of caring since they believe that they have nothing to complain about when compared to the suffering and loss experienced by the renal patient for whom they care. However, as health care professionals, it is important that we give carers the time, space and permission to talk about how caring impacts on their lives and the sacrifices and joys it can bring. So, the emphasis in this description is on carer awareness, highlighting for you the importance and value in supporting carers in their role.

What is a carer?

‘Carer’ is not a label many people feel comfortable with, and they see themselves as primarily a husband, wife, mother, father, daughter or friend rather than a ‘carer’. ‘Carers UK’ website offers the following definition:

‘Carers provide unpaid care and support to ill, frail or disabled friends or family members’

More than three in five people will become a carer at some stage in their life and every year 2 million people become carers [1]. There are >6 million carers in the UK and a study at Leeds University [2] estimated that they save the National Health Service and social care >£87 billion.

Legislation

The legislation covering carers is detailed and the rights of carers are enshrined in: Carers Recognition and Services Act 1995, Carers and Disabled Children Act 2000 and the Carers (Equal Opportunities) Act 2004 [3]. The Work and Families Act 2006 and the Equal Opportunities Act 2010 also make provisions for carers.

The Carers Recognition Act (1995) formally recognized the role of carers and entitled carers to ask for an assessment of their own needs. The Carers and Disabled Children Act (2000) extended this right to be a freestanding right and enabled local authorities to provide services for and make direct payments to carers. The duty of a local authority to inform carers of their rights is detailed in the Carers (Equal Opportunities) Act 2004 and includes the requirement to include carer’s employment, education, training and leisure during an assessment. The Work and Families Act 2006 grants the right for carers to request flexible working and the Equalities Act 2010 ensures that carers are not discriminated against in the workplace and are permitted time off to fulfil their caring responsibilities.

In summary, carers have significant rights enshrined in law and a carer’s assessment from a local authority can be helpful for a carer. This assessment considers how caring impacts on the carer physically, emotionally, financially and examines ways to support and sustain the carer.

Financial benefits available to carers in the UK

The benefits system is complex and details of the benefits available for carers are beyond the scope of this paper. However, it is important to emphasize that carers benefits are linked to those of the person they care for, who has to have been awarded ‘Attendance Allowance’ if >65 years of age or ‘Disability Living Allowance’ if <65 years of age. Renal patients performing haemodialysis at home qualify for medium rate care Disability Living Allowance or low rate Attendance Allowance. Patients performing peritoneal dialysis at home may also qualify but only if they require some assistance with the treatment.

Carers Allowance is payable to carers >16 years of age, who care for >35 h, and do not earn >£100 per week or are in education for >21 h per week. It is payable at the weekly rate of £53.90 and cannot be paid with another benefit such as retirement pension but can help increase eligibility for means tested benefits [4].

Carers guide to living with renal failure

This leaflet was the outcome of work undertaken in York by the renal social worker and carers as part of a Department of Health Action Learning Set looking at ‘the year before dialysis’. We produced a six-page leaflet covering topics such as carers' rights, diet, medication, exercise, benefits, employment and who’s who in the renal team, with telephone numbers.

Conclusion

My final message is for renal teams to ‘think carers’ and to ensure that they are put in touch with the local renal social worker. A renal social worker can help your team work with the financial and psychosocial aspects of living with kidney disease for both patients and their families and in particular highlight the important and often ignored issues for carers.