Contents

Enabling Information: A report on improving access and raising standards in information services for disabled people and their carers in Scotland.

3 Local Provision

The Working Group felt disadvantaged by the fact that it was unable to start with a clear picture of the pattern of provision of local information services at local level. The Scottish Office survey was limited and partial, while responses to the working group's statement similarly could not provide a comprehensive picture.

3.1 Local authorities

As mentioned above (Part 1, section 3.3) local authorities have a statutory duty under the Chronically Sick and Disabled Persons Act 1970 and the Disabled Persons (Services, Consultation and Representation) Act 1986 to identify disabled people in their areas, to find out what their needs are and inform them of the range of services available, both about their own services and about any services provided by other agencies which they have knowledge of and which would be relevant. The National Health Service and Community Care Act 1990, imposes a statutory obligation on social work departments to work with the health authorities and the "independent sector" to offer choice as to whether care is provided in the community or in residential accommodation. If community care is perceived as involving a shift from professional dominance of resources and prescriptions to a situation where users and carers can more fully take control over their care needs, then information is of critical importance to the effective exercise of choice.

Research in 1980 into the information needs of physically disabled people showed that the 1970 Act, which required authorities to create a register of the chronically sick and disabled in their community had received limited enforcement and that one third of the names and addresses given were inaccurate. (17)

Research in England and Wales (18,19) has shown that local authorities need to give a greater priority to information provision as a service in its own right, that there is a need for information strategies to be developed, and that local authorities should involve users and carers at every stage.

There are indications that information services provided to users and carers are inadequate for instance in many comments made during the conference held by Glasgow Council for the Voluntary Sector in June 1994. One of the messages from the conference was that current information services available to users and carers are inadequate and in need of urgent overhaul.

"There is an urgent need, not being satisfactorily met by statutory agencies, to communicate clearly in plain language, to inform user and carers about the services available, about how to access them, about rights and responsibilities, about how to get independent advice and advocacy services."

Pleas were made for the better use of existing networks and information projects within communities and localities, and for resources to be deployed to address the specific communication needs of people from ethnic minorities, and for those with hearing and visual impairments. (20)

The Scottish Office survey attempted to compare the ease with which respondents had obtained the information they sought. The responses suggested that it was easier to access information in some Regions than in others, with greater difficulty being experienced in Tayside, Lothian and Strathclyde, but the survey does not specify whether those experiencing difficulties were approaching the statutory or voluntary sector for information.

In 1993 KPMG Management Consultants conducted a piece of research for the Scottish Office on residents' choice in residential care (unpublished), which explored how far four local authorities were providing elderly people with clear information about their choices after assessment. The report was critical of some regions, but Fife was commended for producing clear objective information for service users.

There is no consistency in the way in which service providers in regional and district councils have attempted to meet their statutory duty. The diversity of approach can be seen in the community care plans which local authorities and health boards are required to produce. A variety of approaches has been adopted:

• No special effort is made to provide information: information is simply provided as an adjunct to service provision.
  • Some community care plans make no reference to information provision, eg Orkney and Shetland, while some give only a general commitment to its importance, eg Borders.
• Publication and display of written material such as leaflets.
  • The social work department of Tayside Regional Council produces a comprehensive range of leaflets which have been awarded the Plain English Campaign's Crystal Mark. Users and carers are involved in the planning of new publications. Tayside maintains information display racks in all social work establishments, as well as in some superstores, and staff ensure that the leaflets are kept stocked and up to date. Their information is also sent to agencies in the voluntary sector such as the Tayside Disabled and Carers Information Centre.
• Funding of information initiatives.
  • These may deal specifically with disability, eg Disabled Living Centres or similar organisations such as the Ability Centre in Dundee; with community care issues, such as Grampian Caredata; or with council services in general, such as the establishment of an advice forum in Cumnock and Doon Valley which has developed a database of both regional and district council services and is opening one stop offices in the district.
• Funding of projects in the voluntary sector.
  • This may be the result of an explicit decision to meet the authority's statutory obligation through an organisation in the voluntary sector, eg Lothian Regional Council and Health Board's funding of Grapevine, the Lothian Disability Information Project. In Fife the provision of services to visually impaired people is met through the Fife Society for the Blind, which receives funding from social work, health, and education sources. Equally a project which has started off as an urban aided project in the voluntary sector and proves its effectiveness may then be funded by the statutory authority. This has happened with the Infobus in Renfrew and the Fernan Street Information Project in the East End of Glasgow.
• Incorporating a remit to provide information in resource centres.
  • The Disability Resource Centres in Strathclyde each have an information officer. The recently opened Moray Resource Centre in Grampian is another example.
• The development of a regional information strategy, with general services backed up by a specialised disability information service.
  In Central Region the Council Help and Information Services are backed up by the Disability Information Service. In Grampian Region the health board and regional council have a joint information strategy and strategy group.

Many local authorities in Scotland are actively addressing the importance of providing information and advice, particularly since the introduction of the community care legislation. However there are problems which have been identified in responses to the Working Group's statement, and in the experience of members of sub group 3.

• The lack of consistency between councils makes it difficult to refer clients to appropriate sources of advice in another geographical area.
• The low priority given by service providing departments to the provision of information as an aspect of that service. The Working Group believes that it is desirable that information provision is recognised as a service in its own right and that the establishment of an information strategy within local authorities could strengthen the position of information provision in the local authority context.

This low priority is demonstrated by

• the lack of an information strategy within many social work departments;
• the lack of any systematic checking and updating of information;
• noone being responsible for information provision; and
• the tendency to prefer to spend scarce resources on services rather than information about services.

3.2 Health professionals

The Health Service has recognised that it has a role to play in information provision, for instance through the establishment of healthlines and the work of the Health Education Board for Scotland.

3.2.1 GPs

One of the findings of the Scottish Office survey was that GPs were potentially well placed to provide information to people with disabilities either at the point of diagnosis of disabling conditions, or simply because disabled people and their carers may be frequent visitors to the GP practice. The Scottish Office survey also suggested that GPs were failing to make much use of this opportunity to pass on useful information to disabled people or their carers.

In Scotland the average GP practice has 1500 patients, the average patient sees his or her GP 4 times a year, and 90% of people see their GP once every three years. Research has shown that older people have more contact with their GP than they do with social workers (21) The main sources of information for elderly people are family , friends and neighbours, but health professionals, especially GPs fulfil an important role although they themselves are not always well informed (22) Doctors are well placed to provide information in that they are held in high regard and have a fairly high level of contact with disabled people and their carers. However GPs are under considerable pressures and do not have time to spend exploring a patient's information needs. GPs typically receive huge amounts of information but do not have anyone within the practice responsible for organising it. In addition, the range of information required may be very wide, and the patient may be under considerable stress and not able to assimilate information.

One significant development in this area has been in the use of a health centre or GP practice as a venue for other agencies offering information and advice. Following on from a project in Birmingham (23), Edinburgh Central CAB has begun to provide advice in two GP surgeries in Edinburgh. This is a two year pilot project receiving funding from CAS development funds, and is proving to be extremely successful. Patients can make an appointment to see the case worker who is a paid worker. The doctors involved are finding this a useful service, and CAS hopes that after the initial two years it will be able to continue with funding from the practice. This is also being tried in Grampian.

Research commissioned by the Berkshire Disability Information Federation found that GPs did not see it as their responsibility to provide non medical information and tended to delegate this responsibility to district nurses, health visitors and social workers. In general the GPs were quite open to the idea that they could take a more active role in information provision and welcomed the possibility of some training being given as part of their post graduate training. GPs were however primarily signposters, and would welcome ways to refer clients more effectively, for instance by having a card from the Berkshire Federation to give out. (24)

The GP's role in information provision should be as a signposter, and this role is most likely to be accepted if GPs can be given information about one stop sources of advice and information, whether this is an in-house adviser or a local agency.

3.2.2 Hospitals

Hospitals have an important role to play in providing information, particularly to the newly disabled person leaving hospital. A report by the Audit Commission in England and Wales found that hospital patients were not receiving the information they need because nurses and medical staff are confused about who is responsible for giving it. In hospitals where nurses have been given the responsibility of providing information, things have improved dramatically (25). The National Information Forum has shown that when a newly disabled person leaves hospital, he or she is more likely to take up information services if they are provided or supported by the health authority (26).

The availability of information in hospitals may be of crucial importance to the parents of children with special needs. This is very often the first place they will expect to be given information, and the Working Group would like to emphasise the importance of getting information as early as possible. Although the group espouses the social model of disability, disability is very often the result of a medical condition, and this makes a hospital or health centre an important place in which to receive information and advice.

Responses to the Working Group's statement suggest a low level of development of information services in hospitals in Scotland but there were some examples of good practice with hospitals recognising the desirability of developing their information services to patients in general, including disabled people.

The Southern General Hospital in Glasgow hopes to develop a central information gathering point within the hospital and stated in their response to the Working Group that they feel national organisations could do more to liaise with hospitals and health boards.

Tayside Health Board has produced a Discharge Information Booklet which gives practical advice about day to day living for someone who has spent a long time in hospital.

The Special Needs Information Point based in the Royal Hospital for Sick Children in Edinburgh provides information on services for parents and carers of children with special needs, and for professionals in this field. This voluntary sector service was developed to address the particular problems experienced by this group and has been extremely successful since it started in 1991.

Citizens Advice Scotland is funding an advice clinic in Glasgow Royal Infirmary specifically for gay men.

The Disablement Income Group (Scotland) operates an advice service in the Western General Hospital in Edinburgh two days a week, and gets referrals from hospital staff and social workers.

3.3 Libraries

The strengths of the library network are that it has:

• a strong local presence;
• a wide geographical spread; and
• it employs information professionals.

Libraries increasingly want to be seen as sources of information, and librarians are attempting to meet local needs proactively through outreach. However there is still a perception amongst the general public that libraries are places to get books rather than information, and libraries could do more to promote the message that they are places to go for information. This contrasts strongly with the position in North America and Australia where libraries are seen primarily as sources of information. It must be emphasised that libraries cannot offer advice.

The situation in Scotland varies considerably between rural and urban areas, with libraries in rural areas having a particularly important part to play. Libraries do not always have the resources to provide information in a variety of formats, and it would help if they had access to reliable and efficient sources of brailling etc.

The potential role of libraries may be strengthened by the reorganisation of local government, when all local authority services incorporating a responsibility for information provision will be the responsibility of the same authority.

3.4 Generalist advice agencies

The CAB service in Scotland is well established with a wide geographical spread. Over three quarters of CABx in Scotland now have access for people with mobility difficulties, a quarter have accessible toilets, but only 10% provide facilities for those with a sensory impairment. Citizens Advice Scotland is also addressing the difficulties sometimes experienced in accessing a CAB by phone, by providing a telephone support service which will handle enquiries which cannot be dealt with by the local bureau.

Citizens Advice Scotland has been developing several initiatives in recent years which are relevant to the provision of information at local level.

In partnership with the Princess Royal Trust for Carers, CAS are addressing the advice and information needs of carers. Funded by CAS development funds the first CAB advice unit for carers has been established at the Princess Royal Carer's Unit at Perth.

As discussed above in section 3.2 above, pilot projects are being held in GP practices in Edinburgh and also in Grampian.

Specialist services are provided either in house, eg specialist money advice workers supporting generalist advice workers, or out of house eg the Scottish Homelessness Advisory Service, which is a partnership between CAS and Shelter whereby Shelter fieldworkers provide support to a cluster of CABx. This is being funded by HomePoint, Scottish Homes.

The growth in specialised disability services and services for carers has been in part due to the perception that CABx, and indeed other service providers and sources of information, were often inaccessible and not appropriate sources of advice for disabled people. While CABx are generally perceived to be excellent sources of advice about money problems and benefit entitlement in the population at large, it was suggested by members of the sub group looking at local provision that they have not developed a similarly high profile among disabled people, who appear not to go first to a CAB for this advice. This has created a vicious circle in which CABx have not always had the opportunity to develop an expertise in issues such as disability benefits or information about aids and equipment. A disabled person or a carer may also prefer advice to come from someone who shares their experience of disability, and may not expect to find such a person in a generalist agency.

It is also worth noting that as part of NDIP, Berkshire Disability Information Project used an established network of CABx as the basis for developing disability information services.

The Federation of Independent Advice Centres (FIAC) is another network of generalist advice agencies which was established in 1977 to represent the interests of local neighbourhood advice services. It has over 50 members in Scotland. Only one of these groups specialises in disability information. A major incentive to become a FIAC member is the provision of low cost indemnity insurance. FIAC, which is a UK organisation, but is in the process of trying to establish a Scottish office, represents the interests of its members at national level, for instance in the development of SVQs in Advice, Guidance, Counselling and Psychotherapy. It sends out fortnightly mailings which include social security briefings and information about advice provision in general. FIAC and DIAL UK are currently cooperating on a management development project, funded by the Department of Health, supporting DIAL members and FIAC groups specialising in disability information.

3.5 Disabled Living Centres

At local level Disabled Living Centres can be effective sources of information and advice. There are 6 Disabled Living Centres in Scotland, in Aberdeen, Edinburgh, Inverness, St Andrews, Grangemouth and Paisley. They are all funded by statutory agencies, either social work departments or health boards, whereas in England more than half are voluntary bodies. DLCs focus on providing information, advice, and assessment in relation to aids and equipment. One of their main tools is the Disabled Living Foundation database, which in Scotland is licensed to Disability Scotland. Users are mainly disabled people themselves although professionals also make use of their services. DLCs actively encourage enquiries from disabled people themselves.

Some regional councils in Scotland provide a similar service to that provided by DLCs through disability resource centres, for instance in Strathclyde and Grampian.

Compared with other countries in Europe the provision of aids and equipment in the UK is extremely complex. Information about aids and equipment can come from a huge range of sources and aids can be supplied by a wide range of agencies: the Employment Service, social work, health, housing or education authorities.

"The systems for provision of technical aids in the UK are very, very complicated. If you live in the right place with access to the right information and you have enough patience to pursue what should be available to a disabled person then you will ultimately get the service required".(27)

A report, as yet unpublished, by the Scottish Health Management Efficiency Group (SCOTMEG) on Patient Equipment in the Community, found considerable variation in practice across Scotland with the service having developed on an ad hoc basis to meet demand rather than to meet assessed needs. The report also suggested that there was very little evidence of collaborative working between agencies, and that there was no evidence that the issue of home equipment had been included in any strategic plans for community services. Particular problems were identified in the supply of communication aids to assist with speech and language difficulties. The report recommends that Health Boards and Trusts should be encouraged to set up a joint equipment service with local authorities, and that social work departments should be given the lead responsibility in this area. The report identified a clear need for national guidance to provide a framework of guidelines and principles.

In the Scandinavian countries where legislation gives disabled people a right to the aids and equipment necessary for them to live an active and independent life, all social welfare is provided by local authorities and financed via the tax system. Every local council has a technical aid centre as well as a hearing centre and a low vision centre. This clear focus for the provision of aids and equipment facilitates the flow of information both between professionals and to individual disabled people.

The Working Group believes that it is important that sources of information about aids and equipment should be available throughout Scotland. It does not consider it necessary to recommend that there should be one DLC in every new local authority area. For instance it may well be appropriate that there should be a DLC in Aberdeen serving the whole of the existing Grampian Region. At present different organisations hold a limited range of equipment for particular purposes (eg a social work department has equipment for home use, while the Employment Service's PACT team has equipment for work). It would be better if each region had a central resource centre where the full range of aids and equipment was available. The coverage of DLCs should be increased and the level of public awareness of DLCs and other similar resource centres should be raised.

There is also a danger that peripheral areas of Scotland may be poorly served in relation to information about aids and equipment. Disability Scotland's Mobile Aids Centre used to tour remote areas of the country but is no longer doing so. In Strathclyde a mobile vision centre is attempting to meet the needs of visually impaired people throughout the region. The group is concerned that the needs of the peripheral areas should be reassessed and appropriate action taken by local authorities to meet that need.

3.6 Local disability information services in the independent sector

Information may be provided by local branches of national organisations, eg local groups of Enable, Age Concern Scotland, or Chest, Heart, Stroke Scotland, by local DIAL groups, or by relatively well established and supported services such as Grapevine in Edinburgh, which aims to be an information resource for all disabled people in Lothian. While information may also come from organisations in the private sector, the Working Group has not looked at this area in any detail, although in respect of the standards described in Part 3, section 3 and Appendix 9 of this report, the Working Group believes that these standards are equally applicable to the private sector. There is evidence in the private sector, for instance banks and the privatised utilities, that services for disabled people and information about those services, are being taken seriously.

Specialist disability information services have developed alongside generalist services for various reasons.

• Mainstream services may not be accessible.
• Particular types of information are not readily available elsewhere (for example in relation to aids and adaptations, or about disability benefits).
• The growth in numbers of organisations of disabled people and their carers, which often aim to provide an information service for their members.
• There may be considerable advantage in disabled people and their carers talking to someone who shares his or her experience.

"Information by itself often does not go far enough. When it is backed up with the personal experience of disabled people it then becomes a powerful tool to challenge barriers, especially when disabled people work in partnership with service providers." (Terry Daley, Strathclyde Equality Awareness Training in Disability (SEATID))