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.

Such people, in the residential care context, are generally referred to as relatives, while in domiciliary care the preferred term is carers, but the two groups increasingly overlap.

In areas such as intermediate and respite care, service users living in the wider community enter homes for short periods, so many “carers” become “relatives” temporarily, and then permanently if their loved one goes into a home for good.

Care-givers, to adopt a generic term, have some formal rights — to assess their own needs, to specify benefits, to participate in inspections, to consult on issues affecting both them and their loved ones — but have care homes caught up with these developments?

For a start, how good is the information which is supplied to a relative of someone going into a home? Should we not accept that relatives as well as service users have the right to a detailed explanation of the service which is to be delivered?

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

The service user guide for the Old Vicarage, a home near Sherborne in Dorset, for example, has a section headed “Visitors”, which starts with the welcoming information that “relatives, friends and representatives are always encouraged to visit the home”, adding very properly that they “may stay for as long as the resident wishes”.

It goes on to cover other forms of contact such as telephone, email and fax, signing-in arrangements, access to meals and refreshments, and various other practical matters. Sensibly it does not shrink from mentioning trickier issues such as “the growing of age, terminal illness and death”, and concludes, “The home’s success is based on involving staff, residents and their families in the planning and implementation of care.”

Leaflets for relatives and friends

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.

The other day I picked up at random a leaflet in a care home lobby headed “Information for friends and relatives”, which neatly illustrates this alternative approach.

Many of the issues it covers — visiting, making cups of tea, charges for meals, etc — are similar to those dealt with in literature addressed to residents themselves, but there is a very helpful additional section headed “How can you contribute to the wellbeing of your friend or relative?” This addresses the initial care plan, the care plan evaluation process, contact with the home and other professionals over care reviews, relative and carer meetings, opportunities for expressing concerns or worries, and satisfaction surveys.

It also has a helpful list, defining the roles of the home’s staff, information which, professionals often fail to realise, may be quite new to a relative finding themselves in this position for the first time. It might be a good idea to add definitions of some of the frequently used social care words and phrases — terms like care planning, personalisation, holistic, regulation, and therapeutic — which are meat and drink to insiders but often quite incomprehensible to non-practitioners.

Care is a very different market from any other. Numerous surveys have demonstrated the widespread ignorance of how services are paid for, but this is not the only area on which relatives need to be better informed and on which ignorance easily breeds fear and suspicion.

There are, however, some tricky matters of confidentiality to be dealt with. Not all residents are happy to share all of the details of their condition or the intimate help they receive with even quite close relatives, and homes need to be sure that any passing on of information is carried out with explicit, not just assumed, permission. This is an issue which it would be wise to expose frankly in a carers’ information leaflet, if only to provide insurance against future misunderstanding.

It has to be admitted too that a minority of relatives — carers’ organisations are naturally reluctant to admit this — 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, homes need to be candid with relatives at the outset, making it clear that their first duty and loyalty must be to their principal client, especially if any conflict of interest arises.

Talking to staff

For a more representative view of these matters, I spoke recently with Judy Downey, chair of the Relatives and Residents Association, the body which advances the views and interests of relatives, much as Carers UK does for the carers of vulnerable people who are still living independently.

Although Judy, a one-time civil servant in the Department of Health, is severely critical of the quality of care some homes provide, she is equally generous in her praise of good services where they exist. Her answer to many of my questions was: “it depends on the home” or “some do, some don’t”.

In a good home, she told me, the provision of a leaflet addressed to relatives is accepted as simple good practice. Something the relative can take away and study in their own time, even if this duplicates information they could look up on a website — it’s still true that not everyone is at ease on the internet — is often more helpful than a conversation where they are told, and have to absorb, everything at once.

Nevertheless, offering concerned relatives the chance to speak with someone about the home and what it provides is usually welcome. Judy suggests, however, that a session with the key worker directly responsible for a loved one’s care is often more meaningful than talking to a senior manager, who in a large home will inevitably be somewhat distant from an individual’s day-to-day care. As the Association’s website puts it, “All the evidence stresses how much difference it makes to carers and residents when family and friends are welcomed and included in the life of the home.”

“Some relatives and friends may need support and encouragement to stay involved or speak up,” it adds. “They need to know they still matter and play an important part in the person’s care”. Relatives after all “can feel lost, sometimes bereft, often guilty and insecure as well as lonely”.

Some admissions are unavoidably rushed or undertaken in an emergency, but in such situations, Judy argues, there is all the more need to slow things down as soon as possible and make sure that the relative understands what has happened, what will be happening next, and what can be reversed if necessary.

If the relative lives at a distance there may be only one opportunity for staff both to discuss the new resident’s needs and to explain what the home will be trying to achieve. Again to quote the Association’s website, “Communication is key”.

Talking to inspectors

The CQC makes much of its practice of seeking the views not only of service users but also of their representatives. Judy, however, is rather sceptical of how systematically this function is actually carried out.

She claims that inspectors often fail to send out to relatives the questionnaires they and their predecessor regulators used in the past, with the result that there is little or no systematic canvassing of relatives’ views, often no more than a single conversation if a relative happens to be on the premises when an inspection takes place.

Here again, homes could and should bridge this gap, informing their residents’ relatives when a planned inspection is imminent and actively seeking their input. The information leaflets and users’ guides I have seen generally refer to the home’s welcoming comments, positive or negative, but rarely go the extra step of encouraging similar feedback on performance direct to CQC. Both the Commission and care home managers need to work to fill this gap.

The more one thinks about it, the more it becomes clear that care home workers and their managers have a wide range of common interests with those committed family members and friends of their residents who stay caringly in touch. Together they can form a powerful coalition, working both for their clients/loved ones and to advance their own interests in promoting 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 CQC and other regulatory authorities. Better and more consistently provided information about the much-maligned residential care services, in a form prepared specifically for relatives, is an important step in building this alliance.

Last reviewed 5 February 2015