Solitary Confinement

It can be how soft a boiled egg should be, and at whose risk, or how to open a bank account without a passport, utility bill or ability to get to a branch. The issues raised by care home residents seeking the help of an advocacy project run specially for them by Age Concern Leicestershire and Rutland are many and varied. “There is a large and expanding population of older people in care homes who are virtual prisoners, with no contacts in the community, and are considered to be quiet and therefore content,” says the project in its entry in a directory, which claims to be the first attempt to map the availability of advocacy services for older people across England, whether in residential settings or not.

“A lot of older people find themselves without a voice. Some have no relatives or friends who are able to assist them.”

The project, run by two staff advocates and a handful of volunteers, is the only service of its kind in Leicestershire. It works with 70 older people at any one time, but demand outstrips available resources. On the other hand, the directory suggests there are parts of the country with barely any advocacy services of any type for this age group: only one project is identified in the Kent and Medway area, with the north-east as a whole looking particularly poorly served.

Overall, 136 organisations providing advocacy services are listed, although 57 of them are part of the Age Concern charity federation. Gary Kitchen, whose Get Heard consultancy compiled the directory for the Older People’s Advocacy Alliance UK (Opaal), says: “These figures give very serious cause for concern about the lack of advocacy for older people in so many areas.” Opaal, he suggests, needs to work with health and social care authorities in areas that have few services in an attempt to stimulate development.

At a time when emphasis is being put on choice and personalisation of care services, advocacy might be expected to have a fast-growing role. But many professionals think simple provision of information is sufficient. As Kitchen points out, an Audit Commission report this year, reviewing health and social care services for older people, failed even to mention it.

The paucity of provision for people in residential and nursing care is even more puzzling when you consider their increasing vulnerability. A recent survey of more than 750 care homes found that 72% of their 32,000 residents were immobile or reliant on assistance, 62% were confused or forgetful, while 24% were immobile, confused and incontinent.

The survey, by the CCC long-term care coalition, is being used to demonstrate a positive case for a viable and sustained care home sector. But it equally shows a need for ready access to external advocacy, whether by family, friends or agency.

Barbara Dearing is advocacy manager of the Leicestershire and Rutland project. She says many care home residents fear victimisation if they complain and many families are not prepared to step in – even if they are on hand to do so. “Sometimes there are no families: these days, they may very likely be dispersed around the country or around the world.”

According to a poll last week for the disability rights and equal opportunities commissions and the charity Carers UK, 35% of people say they are very or fairly unlikely to act as informal carers for any close relative who becomes disabled or develops a long-term health condition. Only 21% think they are very likely to do so. Such expectations may change when reality hits, but there must be a question mark over assumptions of a big increase in the current total of 6 million carers, the Wanless social care review having assumed a 50% rise to 9 million by 2026.

At the same time, people expect to be able to make their own decisions if they become disabled or develop a long-term condition. In the poll, of over 2,000 adults, a striking 82% said they thought it very or fairly likely they would be able to do so.

Unrealistic? Given current trends, one might think so. But if advocacy was boosted and made much more widely available, even the most dependent older people, living in the community or in residential care, could be assisted to express preferences, make decisions and, yes, complain about an overly hard boiled egg.

For that to happen, though, the idea of advocacy will have to become much better known. Research among older people suggests extremely limited understanding of the approach: one study, involving three focus groups, concluded that “no one had ever heard of such a service”. As Kitchen puts it: “It is very hard for older people to demand a service of which they may have no concept.”

Maintaining existing advocacy provision may even be a struggle. The Leicestershire and Rutland project used to be funded by local authority and NHS money, but no longer. Age Concern is keeping it going for now, but that underpinning runs out next March.

Dearing says: “The government is always saying how older people must have a voice. We are doing that in Leicestershire and Rutland. But once our funding has gone, there will be no service for this very vulnerable group who are living in care.”

Mapping Older People’s Advocacy in the English Regions is at