Information access: an online resource for health and social care professionals providing information to people affected by neurological conditions

Abstract

Information is a key issue for people who use health services and their families and friends. In the UK, this was raised consistently by those involved in a national ‘listening exercise’, in 2005.1 The resulting White Paper Our Health, Our Care Our Say2 reinforced much of the government information strategy published in the previous year.3 The Brain and Spine Foundation is a UK-based charity that aims to improve the quality of life for people with neurological conditions (http://www.brainandspine.org.uk). The organization was awarded a grant by the Department of Health to produce a toolkit to help health and social care professionals providing information to people affected by neurological conditions. The project forms part of the implementation of The National Service Framework (NSF) for Long-term Conditions, published last year.4 The toolkit is being developed in association with the Neurological Alliance (http://www.neural.org.uk) and the Long-term Medical Conditions Alliance (LMCA; http://www.LMCA.org.uk). A series of small discussion groups were held last year throughout England and Wales to explore: (i) current obstacles in the provision of and access to information, (ii) how a toolkit might be used and (iii) to refine the toolkit's content and shape. Discussions were held with groups of people affected by neurological conditions, with voluntary sector organizations concerned with neurological conditions and with mixed groups of health and social care professionals from a variety of settings. In addition, a questionnaire survey of health and social care professionals was conducted. Care for people with neurological conditions in the UK has been very patchy. While there are some world-class centres of expertise, there are also areas of the country where there is little specialist provision.5 Traditionally, for people with neurological conditions, the majority of input has been provided by specialists (e.g. neurologists and rehabilitation consultants). However, because of shortages in these workforces, and the long-term nature of many of the conditions, people have often been left without specialist support. Access to information has become a major issue for these people who may have little contact with health and social care professionals after initial diagnosis of their condition. This is consistently reported both by individuals affected by neurological conditions as well as organizations representing them.5 A key issue explored in developing the toolkit relates to why people do not get the information they want, despite much information apparently being available, and from a proliferation of sources. Two explanations were found. First, information provided by health professionals does not always match with the information sought after by people with neurological, and other long-term conditions. Secondly, people often want very local information, whereas what is generally available is not specific to their geographical location or situation. These issues are explored further below. Another issue that became evident was that health and social care professionals did not always recognize their role in relation to providing information to people with whom they came into contact. There is a need to encourage health-care professionals to view every consultation as an opportunity to assess information needs and ensure that these are met directly or by referral to a dependable alternative source. The toolkit will, therefore, aim to signpost to sources of information on the issues of concern to people with neurological conditions. It was found that there are four key areas consistently identified by people affected by neurological conditions where they want more information. Interestingly, the groups of health and social care professionals consulted also identified these issues as a problem area for information giving. The lack of information related to benefits, employment and finance was an issue raised repeatedly by people with neurological conditions when they discussed information. When asked what information requests they found difficult to address, health professionals also identified information about benefits. This is not a new issue and surveys from the neurological charities have been reporting this for years.6 It is possible that the reason this issue has not been addressed is that health professionals do not see such issues as within their remit. These ‘social care issues’ are often seen as being the province of those working outside health-care settings. There may be a tendency to see people with a diagnosis of a long-term condition as having a continuum of needs; starting with medical needs, and medical information needs, at the diagnostic phase and progressing to ‘social’ needs later on as someone adapts to their illness or disability, and particularly if it progresses/degenerates. However, when people with neurological conditions talk about their information needs, it is clear that some of their first concerns on diagnosis are their employment and financial status –Should I go back to work tomorrow? What should I tell my employer? If I leave work how will I support myself and my family? What support will my partner get if they need to look after me? Should I move house? The health professional is more likely at this time to be focused on providing information about possible treatment options or a drug regime. Concerns about sex and relationship issues were often raised (even in focus groups where people who did not know each other). People had found information on sources of support very hard to access. Health and social care professionals were similarly at a loss to know where to go for such information. There seemed to be a tendency to hope the questions were not asked and very few health-care professionals said that they would ever raise the issue as they would not know how to deal with this or whom to refer to. This is a significant quality of life issue for people affected by many neurological, and other long-term conditions, including cancer. There is a need to address it and ensure that health and social care professionals are signposted to sources of information and advice. Complementary therapies have played a large part in the management of neurological conditions, partly because of the fact that there are often very few surgical or drug treatments available. Many health professionals find it difficult to provide information about treatments that they feel do not have a robust evidence base and that have not been traditionally available in the National Health Service (NHS). While for some conditions this is changing, it is likely that people with a life-long illness for which there is no cure will continue to seek both ‘wonder cures’ and palliative treatments. Using the toolkit health professionals will be able to signpost people to information about various complementary therapies and information about which therapies people with a similar condition have found helpful. This kind of information is often available through local and national voluntary sector organizations. Providing a diagnosis and prognosis is clearly within the domain of health-care professionals, yet all agree it is a difficult area to address. People affected by neurological conditions often report that they do not get adequate information about what to expect. Again this possibly stems from the fact that there was, and still is for many, very little that can be offered in the way of treatment and cure. Neurological conditions can also be very unpredictable. If health-care professionals view their domain as providing information about treatment options and medicines there may well be limited information they can give. There are, however, as outlined above, a range of other information needs that people with neurological conditions have at diagnosis. If these needs are addressed it is likely both that people would feel more able to manage their condition and also report that their information needs had been met. The information people often valued the most, and which they found hard to access, was about local services and sources of support. For example, people talked about finding someone who could help them fill in their benefit form, the local rehabilitation service that accepted self-referrals, the MS support group that met two streets away, yet had taken 18 months to discover. Addressing local information presents a challenge for a toolkit that has been designed for health and social care professionals across England and which will necessarily be focused at a countrywide level. As noted above, however, this is a crucial finding of the work conducted with people affected by neurological conditions. Those working on the Better Information3 strategy also identified the need for local information and the Department of Health has recently announced their intention to pilot a local integrated approach to information in order that local health and social care organizations jointly maintain an accessible database of all services and support groups in their local area.2 The project will provide a template for local information in the toolkit outlining what information should be available, based on issues that people affected by neurological conditions have raised as information needs, and indicating possible local sources of information and support locally. The ground work will necessarily be conducted at a local level, but it is hoped by providing a template and sources list we will avert excessive duplication of effort, whilst ensuring that the content of local directories and databases are focused on the needs of people affected by neurological conditions. In addition, it will be very important to ensure local voluntary organizations supporting and representing people with neurological conditions are involved in commissioning local information databases. This will be essential; to ensure firstly that the resource is focused on local needs; secondly, that the very valuable services and support provided by voluntary sector groups are included and thirdly, because of the local knowledge they have about sources of health and social care support in its widest sense. Often, during the discussions with people affected by neurological conditions, they talked about eventually tracking down the information, or service or person, through contact with a local support group or voluntary organization. For example, if you wanted to know who could help you fill out a benefit form, how to get a wheelchair, where to get hydrotherapy, who to talk to about a relationship problem the local branch of the Parkinson's Disease Society or MS Society would be a very good starting point. At national level, voluntary sector organizations produce the information often reported to be the most useful by people affected by neurological conditions. Most include in their information portfolios fact sheets and booklets about the issues raised above (complementary therapies, sex and relationships, prognosis, benefits) and about many other aspects of living with a neurological condition. There is reluctance, however, amongst health and social care professionals to provide information about these organizations to people affected by neurological conditions. A survey by the Motor Neurone Disease Association7 in 2002 found that 44% of people diagnosed with motor neurone disease that year had not been told of the Association or given contact details. In the discussions to develop the toolkit people often reported stumbling on a local or national voluntary organization ‘by accident’. The toolkit will need to make it easier for health professionals to signpost to these sources of information and support. Health professionals may feel better assured about directing people to voluntary sector sources of information if they could guarantee the quality. The Department of Health have also recently announced the intention to develop an Information Accreditation Scheme (IAS).3 It will be very important that voluntary sector providers of information are enabled to participate in this scheme in order that they can continue to disseminate the information that people affected by neurological, and other long-term conditions find so useful. A pilot version of the toolkit is currently being produced. This will be a signposting tool with generic checklists and templates. It is anticipated there will be a launch towards the end of 2006. Nikki Joule is an independent health policy consultant and Project Officer at the Brain and Spine Foundation (http://www.brainandspine.org.uk). She is also on the Steering Group of the Patient Information Forum (http://www.pifonline.org.uk).