There has been a growing recognition over recent years, among providers, regulators and commissioners alike, that service users deserve to have clear information about what they can expect from the organisation laying on their care. But all of these parties have been slower to appreciate that their service users’ friends, relatives and representatives often need to be put in the picture too, writes Jef Smith.

These people are now officially — which also means in legislation — referred to as “carers”, a usage not to be confused with the same term’s (mis)use by providers in reference to their staff, more correctly described as care workers. (These definitions are endorsed not only by carers’ organisations but also by domiciliary care’s professional organisation the UK Home Care Association.)

Carers have formal rights — to assessment of their own needs, to specified benefits, to participation in inspections, to consultation on issues affecting both them and their loved ones — but have the bodies providing domiciliary care caught up with this development? How good, for a start, is the information supplied to carers when their loved one receives a service? As the UKHCA Code of Practice puts it: “Each service user and their representative has a right to a detailed explanation of the service.”

Much of what carers need to know is communicated through the service users themselves, and some documents such as statements of purpose and service user guides are equally informative when read from a carer’s perspective.

When considering their communications policies and procedures, providers need to bear in mind that relatives are a subtly different readership. The relative’s perspective is sufficiently separate to merit material specifically directed at the role they play and the rights they retain.

In the residential care environment, where carers are characteristically known as “relatives and friends”, this literature is fairly common, but the issue is at least as important for home care since there is much more often a carer still in the picture.

Carers need to collaborate closely with care agencies and their staff. Take, for example, the position of Mrs Archer, an elderly woman living alone who is visited each day by her daughter, Mrs Baker, who lives in the same town. Mrs Baker helps with shopping and personal tasks and checks that Mrs Archer is taking her prescribed medication, but the old lady’s mobility is deteriorating and her daughter cannot spare any more time as she has other domestic and professional commitments.

The situation is ideal for a domiciliary care agency to be engaged, but the role is to supplement, not replace, what Mrs Baker will continue to do. The care workers will need in effect to weave the help they provide into the fabric of the carer’s still substantial contribution. There is a good opportunity here for a partnership that will enable Mrs Archer to retain her dignity and independence, but there are many possibilities for misunderstanding.

Leaflets for carers

Emily Holzhausen, director of policy and public affairs at Carers UK, the national representative body for concerned relatives and friends, thinks that it should be standard good practice for home care agencies to publish information specifically addressed to carers. Many, of course, already do just that.

Appropriate material on a website is a good idea, but probably a majority of home care clients and their families find a printed pamphlet more accessible, at least in the first instance.

A lot of people in the Archer/Baker position are first-time buyers of care services and, as Emily points out, this is a very different market from any other. Numerous surveys have demonstrated the widespread ignorance of how care is paid for, but this is not the only area on which carers need to be better informed.

How is Mrs Baker going to know what the care workers have done and what remains for her to do, and vice versa? “Communication is absolutely critical,” says Emily.

Mrs Baker is worried about what arrangement the care workers will need for access to her mother’s flat when Mrs Archer cannot get to the door to let them in; a paragraph in the “information for carers” leaflet reassures her that this is a familiar issue in domiciliary care and that a mutually agreeable and secure arrangement will be negotiated.

Mrs Baker is entering what for her is a quite new situation, one in which she is sharing her mother’s care with professionals, so how, since Mrs Archer has lately started to get forgetful, will she know whether or not her mother has taken her medication? The leaflet explains that this too can be discussed with the care workers and a system agreed. Mrs Baker feels much happier. What Emily calls “a stressful and emotional purchase” is thus successfully navigated .

Confidentiality issues

There are sometimes tricky issues of confidentiality to be dealt with. Not all service users are happy to share the details of their condition or the help they receive with even quite close relatives, and agencies need to take care that any sharing of information is carried out with explicit, not just assumed, permission. This is an issue it is wise to expose frankly in a carers’ information leaflet, providing insurance against future misunderstanding.

It has to be admitted too that a minority of self-styled carers — a very small minority, Emily loyally insists — do not have the welfare of the service user as their prime motivation. Some have financial agendas of their own, being concerned that the cost of care is eroding what they will eventually inherit; a few may have been actively involved in financial or other forms of abuse.

Again, agencies need to be candid with carers at the outset of each contract, making it clear that their first duty and loyalty must be to their principal client, especially if any conflict of interest arises.

The triangular relationship of service users, carer and care agency can become especially sensitive when the carer is living in the same house as the person receiving the professional support. Care workers also must carefully respect the rights to privacy of the carer.

Emily has some terrible stories to tell of the insensitivity of care workers in such situations, for example, a woman who refused to take off her muddy outdoor shoes in the house despite repeated appeals from the wife of the man receiving support. Presumably the worker thought that her concern needed to be only with her client. As a result she ignored the fact that providing support to him inescapably involved invading the private territory of his wife, and for this permission needed to be negotiated and terms respected.

Territorial respect is not the only area in which carers and care workers may find themselves clashing. Emily reports that carers who ask innocent questions are often perceived by the professionals as unhelpful, meddlers or even troublemakers, and this tension can arise as easily when the carer lives elsewhere as when they live with the service user. Often a distant carer’s anxiety can come across as hostility, and agencies in their turn need to be wary of responding in ways which appear in the carer’s eyes as defensive.

It is difficult to counter this only through written documents; candid, preferably face-to-face communication is vital and agencies should not be afraid to take the initiative. They after all will almost certainly have experienced many times the dangers of inadequate understanding of the respective roles; for a nervous carer, this is probably the first occasion.

Involve carers’ groups

At a national level, Carers UK enjoys a good relationship with the UK Home Care Association, the representative body for domiciliary care providers, but this positive dialogue is not always replicated locally. Does every home care agency take the trouble to seek out the carers’ groups in the areas in which they operate and ask their views about service developments? I suspect not, indeed that many agencies are not even aware of local carers’ centres or other services specifically geared to the friends and relatives of their clients.

This is a missed opportunity because carers corporately have excellent experience of providing sensitive support to highly vulnerable and dependent loved ones, experience which they would often be in a position to share, for example in training new care staff. Just as the individual care worker may need to look to a live-in carer for guidance about meeting a client’s specific needs, so a care providing agency can get valuable advice on general care issues from local carers’ groups.

The more one thinks about it, the more it becomes clear that home care workers and their employing bodies have a wide range of common interests with those family members and friends who are carers. Together they can form a powerful coalition, working both for their clients/loved ones and to advance their own interests in better care. Their joint experience should be powerful in lobbying and influencing local councils and other commissioners, the Department of Health and other central government departments, and the Care Quality Commission and other regulatory authorities.

Better and more consistently provided information about domiciliary care, prepared specifically for carers, is an important step in building this alliance.

Last reviewed 5 February 2015