Older People’s Views on Information, Advice and Advocacy
By Ann Quinn, Angela Snowling and Pam Denicolo
The UK government acknowledges the need for improved information and advice services, with an increasing emphasis on partnerships between service providers and older people. However, there is little clarity about what is encompassed by information services, or exploration of the models of information provision used.
For this study, representatives of organisations run by and for older people in Slough formed a Project Working Group (PWG) with the university research team. The study examined the needs and problems of the various communities of older people in Slough in relation to information, advice and advocacy. An area of high deprivation, Slough is also a diverse, multi-cultural community, with over a third of the population belonging to minority ethnic groups.
The need for information, advice and advocacy services
“It’s like going into a restaurant without a menu. How do I know what I want if I don’t know what is available?” (Older person)
Service providers distinguished between the provision of information, advice or advocacy. Older people more readily identified services as providing assistance or help, and were less likely to recognise information giving as a service in its own right.
The concept of advocacy was rarely recognised amongst older service users. This was particularly so for older members of the South Asian communities in Slough (the term ‘advocacy’ is not easily translated into Asian languages).
Older people wanted information across the range of health and social care services, particularly following the onset of illness (their own or that of family members). Needs for information and advice about welfare benefits were frequently mentioned, as was assistance in filling in complex benefit claim forms.
“Mostly all the forms are difficult to fill up; mostly I get help because you get the wrong idea and don’t get all the allowances you should.”
Older people lacked information about reliable tradespeople who could do household repairs, or gardening and lawn mowing.
“There is a risk of getting a cowboy. What would have helped is a list about which firms you can trust. The other thing is a gardener. Nobody wants to know when you ring about gardeners.”
Use of services
Some older people were self-sufficient seekers for information; others were more reliant on other people. Self-sufficiency arose through necessity or choice.
“When I became ill and was stuck at home, people gradually disappeared or didn’t contact me any more. Then you have to find your own outlets in the media who to contact.”
Too much information could be as problematic as too little.
“It was confusing because there were too many choices in the end. Advice from Arthritis Care was from a free phone number. The NHS freephone number I used also, and I talked to several other societies. Then I got an avalanche of literature. You wonder if it is the right advice, and who you are talking to.”
Older people who were not ‘self-seekers’ did not usually turn to formal information and advice services, but asked the people who were already helping them, family and friends as well as professionals. However, health and social care staff were not always aware of the full range of services, only those offered within their own system.
“My wife had a slight stroke and it affected her waterworks and I had to change the bedding twice one night. I mentioned it to my doctor, and she referred me to the continence nurse, but while she was very helpful sending me samples [of incontinence pads] she didn’t say that I could have them free from the district nurse. So I was paying £2 a day for these, until I read a leaflet from Help the Aged at the hospital. Now I hear Slough Council have a laundry service for soiled linen – why don’t they tell you about all this?”
Preferred style of service
The older people interviewed valued information presented in relation to issues of importance to them (needs-based information) rather than information presented about provision from a particular agency (service-based information).
“When I rang this lady about the welfare form and mentioned gardeners she said ‘No, I’m assessing what needs your wife has’. She said ‘Gardening isn’t on the list’ but I said that it had to be done. She said ‘Gardening doesn’t help your wife’, and I replied ‘It does’. She said there is a firm line, and gardening is not to do with attendance allowance.”
Accuracy of information is obviously important. However, there were areas such as welfare benefits for people with dementia where older people frequently received inaccurate information.
“I rang to ask about attendance allowance and was told that, as it was a mental case, she wouldn’t be entitled to any benefit – they said it was only for physical problems.”
The perceived trustworthiness of the information provider was also important. In some topic areas, the independence of the advice giver was valued; in others, it was their expertise. Older members of the South Asian communities, in particular, saw the need for a preliminary meeting, in order to assess whether the person was trustworthy and had the necessary status to respond effectively to the problem.
Many older people valued personal assistance, especially those whose ability to seek out information for themselves was restricted. Continuity helped to instil trust and confidence that the problem would be resolved.
“The personal touch – it is exhausting and resource-heavy but makes such a difference” (Project Working Group member)
Older people valued the active approach taken by health and social care staff who advised them of additional services they could receive.
“My mother had various accidents which required a district nurse, and the funny thing is that I started to get advice from the district nurse. She started to say ‘You ought to do this’ or ‘Your mother needs that’ and got Social Services to send somebody to help her get dressed every morning and go to the day centre every week because it was good for her mobility and meeting people.”
Older people wanted an active offer of timely comprehensive and co-ordinated information at key points in their lives, often at a time of crisis or change.
“I would feel a lot happier if somebody had given me a sheet of paper with all the contacts, what you get free and what welfare benefits you could get, right at the outset [at the time of diagnosis of an illness]. There could be a system where an administrator at the health centre has a list for who you go to for what.”
Difficulties perceived by older people
Current directories of services tended to be agency-based rather than issue- or topic-based, making it difficult to obtain information about diverse needs.
Knowledge about a service was rendered pointless if it could not be accessed because appropriate means of transport were not available or staff shortages meant that service was not currently available.
Some older people from the South Asian communities did not speak English; few staff were fluent in the appropriate languages, and were scattered thinly across different agencies. Interpreters frequently provided information, advice and advocacy alongside translation and often worked, in slightly different roles, for several voluntary agencies. Membership of the same community as the older person could help in providing a culturally appropriate service, not just a translation. It could also create concerns that confidentiality might be breached.
“In the Asian culture, we and our children have to abide by family cultures. In our community we exchange and share information.” (Interpreter)
“Indian people sometimes like privacy themselves.” (Indian-born older man)
Translating written information was not always helpful. Older people from South Asian communities who did not speak English were often unable to read their first language.
Difficulties perceived by service providers
Service providers were struggling to offer timely, accurate and comprehensive information. No one agency could provide specialist information about all relevant topics. Updating their own information base was difficult for the majority; few had the resources for this. Agencies prioritise service provision, rather than developing and maintaining information databases. Often information resulted from networking skills of staff members, and was kept within individuals’ diaries or heads.
“It’s a bit hit and miss.” (Project Working Group member)
Services in both the public and the voluntary sectors in Slough were under considerable pressure. For the voluntary sector, short-term funding meant staff time was continually diverted from service delivery to fund-raising. There was a rapid turnover of projects, making it difficult to keep track of what was available. The public sector has faced almost continual reorganisation, with physical moves of offices alongside structural and role changes. It was hard to keep track of who was responsible for what, and how they might be contacted. There was a shortage of staff in the public sector, restricting the services available to older people.
Agencies adopting an empowerment model sought to provide contacts whereby older people could access information for themselves. Skill was necessary to identify the appropriate limits of the older person’s capacity to do so.
Agencies frequently distinguished between giving information and advice. Advising was seen as a more skilled task than simply providing information. In some cases, there was a reluctance to offer advice, because it was thought that staff lacked the necessary expertise. Fear was expressed of potential legal comeback if the wrong advice was given. Some agencies had guidelines prohibiting staff from completing forms or writing letters for clients.
Mainstream or specialist services?
Some participants argued for multicultural services to respond in culturally appropriate ways to the needs of all. Others supported specialist services for each community. Some older people had lived through partition in India, and preferred separation, while younger people without this history might feel differently. In contrast, some older people were comfortable about mixing together, but thought the younger generation were more radical, desiring separate services and insisting on this for their older relatives. In practice, some services succeeded in bringing together older people from across the South Asian communities, but others appeared dominated by a particular group, which in turn discouraged attendance by the others.
There was a similar tension as to whether older people should receive information and advice from services designated as specialist services for older people, or whether they should use mainstream information and advice services. Some older people did not perceive themselves as ‘old’, and would not readily access services labelled for older people. Others welcomed the high profile of a service such as Age Concern as providing a place where they knew they were likely to be helped.
No single solution could meet all the needs expressed by older people in Slough. The preferred solutions most frequently chosen by older people and representatives of organisations were for:
- an information bank, to provide a comprehensive and updated source of information for the information providers, also accessible to older people; and
- an information centre, to provide a point of contact for older people.
Statutory sector services in Slough have recognised the importance of information provision and are planning several initiatives. The Project Working Group has consequently made two recommendations, that:
- Statutory services should work in partnership with voluntary organisations to set up a comprehensive and co-ordinated database, instead of separately providing information around relatively narrow service definitions; and
- Services should similarly work together to provide a comprehensive information centre for older people, rather than setting up a series of separate information resource centres.
About the project
The Project Working Group (PWG) comprised representatives of seven organisations in Slough, including those run by and for older people, plus a three-person research team from the University of Reading. The PWG initially included 11 members; membership fluctuated throughout the research period.
The purpose was to draw on the expertise of older people, and of the relevant voluntary and statutory agencies, to discover what older people value in information, advice and advocacy services, and appropriate models for the delivery of such services. A total of 23 key informants, representatives of service providers, were interviewed, plus 13 older people. Approximately 120 older people participated in five group discussions, and there was a final meeting with 25 members of the Slough Older People’s Forum to prioritise solutions. The participants were recruited primarily through a ‘snowball’ technique, starting with suggestions from PWG members; health & social care professionals in Slough were also asked to enlist participation, and a request was made on local radio.
How to get further information
The full report, Older people’s perspectives: Devising information, advice and advocacy services by Ann Quinn, Angela Snowling and Pam Denicolo, is published by the Joseph Rowntree Foundation (ISBN 1 85935 107 7, price £11.95).