As a group, they occupy nearly 40% of residential care places and 48% of those in nursing homes, but self-funders and their relatives remain largely unsupported by councils. This emerged last month in research for the Association of Directors of Adult Social Services and the Local Government Association, which raised concerns about councils' information and advice services.
"Time and again, people described the struggle to obtain information, advice or advocacy to help them in making life-changing decisions," according to the study by consultant Melanie Henwood.
These failings continue despite policy drivers to improve information under the personalisation agenda. The government's adult social care vision, issued in November, said councils should give service users, particularly self-funders, access to good-quality information and advice.
However, Henwood found that many self-funders and their relatives did not approach their local authority for information. This was "not considered by most, or seen as something negative to be avoided or treated as a last resort"; those who did contact their council "typically described being given a list of care homes and nothing more".
Contrary to policy guidance, many were asked about their financial means at the outset by councils and were then told no help was available, denying them their right to a needs assessment.
Self-funders can bring social workers arguing their clients' cases into conflict with managers who are concerned about resources, Henwood found.
"If councils started giving self-funders full assessments and guidance, which would be very helpful to them, that would increase everybody's workload and they would need more social workers and care managers," says Ruth Cartwright, manager for England at BASW - The College of Social Work.
Judy Downey, chair of the Relatives and Residents Association (R&RA), says the "typical experience of the typical self-funder is to be told to go away". But many older people and their relatives have no idea of the costs involved in paying for their own care, she says, so good information is crucial.
"There's no excuse for not having good information available everywhere, in libraries, chemists and doctors' surgeries," she adds.
Increasingly, local authorities are using their websites as the first point of delivery for information about care services, but Gillian Dalley of consultancy BCD Care Associates says these are highly variable, and information for self-funders is "often buried so deep that they can't find it".
Just under half of 50 council websites reviewed for a study by BCD were "complex or difficult to navigate", the terminology used by the sites was inconsistent, and jargon was common. Half contained inaccurate information, particularly on savings thresholds that determine whether and how much people should pay for residential care.
Although two-thirds of websites identified the issue of self-funding, the report found "few looked at it from the personalised point of view of the individual trying to discover what deciding to go into care might mean for them and their families".
However, support may well be better coming from sources other than the council.
Henwood found that the minority of people who accessed information from other sources, including charities such as Counsel and Care, "reported a more positive experience of advice and information that addressed their particular circumstances".
Henwood recommended that councils considered contracting external organisations to provide information and advice, as Essex Council has done with the Relatives and Residents Association (see case study).
R&RA also offers a national advice service, as does Counsel and Care.
Other independent internet advice and search websites do offer an alternative to local authority services. One is Best Care Home (www.best-care-home.co.uk), which was set up by Debbie Harris after she struggled to obtain support from social services when looking for a care home for her aunt, a self-funder.
Though her experience of seeking advice from a local authority could have been better, Harris says most of them "do quite well but are trying to help too many people".
This is likely to become an even bigger issue, with an ageing population and a consensus that the number of self-funders may increase because of cuts to state funding, leading to tighter eligibility criteria and higher charges for council-funded care.
Councils undoubtedly face many short-term pressures affecting service delivery, but they may be storing up problems for the future by failing to engage with self-funders.
For example, they may not be aware of people who, if they have not received sound financial advice, could run out of money and need local authority funding. In addition, as Henwood's report highlights, self-funders who are screened out of the system prematurely or not pointed towards other sources of advice, may not benefit from prevention and reablement services, making it more likely they will need extra support later.
Case study: Relatives group to the rescue after grandfather's fall
Lucie Narraway admits she "would not have known where to start" without support from the Relatives and Residents Association (R&RA) Essex when she had to find a care home for her grandfather after he was discharged from hospital.
He chipped his pelvis after falling on Boxing Day and, although he could use a frame to move around the hospital, the carpets in his home made this difficult.
Narraway and her family realised they would need to find a care home. She had a conversation with Chris Ardill, the manager of the R&RA's advice line, who explained the ins and outs of self-funding, and was also supported through the process by Debbie Tanner, R&RA Essex's development worker.
This helped Narraway find a suitable setting, and her grandfather moved into the home at the start of this month. "You are very much on your own as a self-funder," says Tanner, who also tries to improve awareness of the service by visiting community organisations across the county. "People need that support."
Essex Council launched the advice service in October 2008 after national reports highlighted the need for self-funders to access better information. Jan Lockyer, the council's project manager, says it is important that the development of the service has been led by service users, including the chair of the Essex R&RA board, Brian Mister.
However, like other adult care services, future funding could be uncertain. "After 2012-13 I think things are going to get tight for everybody," says Mister, "so we are looking towards how we can pull in funding. It will be a big task to do that."
Source Community Care