consumer information

This section provides information about associations that the Cochrane Neurological Network feels would be of interest to patients of neurological diseases, their families and carers (all of whom are referred to as “consumers”). As always, consumers are invited to share their ideas for improvement to this section. Please send any suggestions to [email protected] or contact us by phone, fax or post to provide your valuable feedback about what we can do to make this section more useful.

Cochrane Consumer Network
The Neurological Alliance
Brain & Spine Foundation
Cochrane Multiple Sclerosis Group Consumer Program

The Cochrane Consumer Network, based in Australia, is a patient organisation (or “consumer” organisation) within the Cochrane Collaboration. It includes individuals and community organisations from around the world. The Network supports and develops consumer participation within the Cochrane Collaboration and helps make information available to consumers.

The Cochrane Consumer Network also encourages patients to understand how and why their health care interventions are working (or, why they are not working). To know if a health care treatment is worth trying, solid evidence about the treatment’s effects is necessary. Ideally this evidence comes from high-quality trials. The Consumer Network can help patients understand the meaning and benefit of high-quality trials, the work of the Cochrane Collaboration (i.e. helping people make informed decisions about health care), and the importance of effecting the future research agenda in the health field. Explanations are given in common language so patients understand complicated medical terminology.

The way most people get involved with the Consumer Network is by helping to identify important questions from the point of view of those who have the health problem. They help to seek out trials, and some get involved in commenting on drafts of Cochrane reviews or spreading the news of the results of Cochrane reviews in their communities.

The Consumer Network’s activities include:
•  Keeping people in touch with what’s happening through a newsletter
•  Offering training workshops and developing training materials
•  Preparing material on how to make sense of health care research and Cochrane reviews
•  Publishing a “digest” for consumers on what’s new each time The Cochrane Library is published (four times per year).
•  Maintaining a website that includes all of these resources and a consumer health information system
•  Running a special interest group of people from developing countries interested in participating in The WHO Reproductive Health Library

Membership with the Consumer Network is intended for people who are seriously interested in getting involved in the organisation. Membership is free of charge.

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The Neurological Alliance

Website: http://www.neurologicalalliance.org.uk/

Telephone: +44 020 7793 5907

The Neurological Alliance is a collaborative forum of a wide range of neurological charities with the main objective of improving the quality of life for people in the UK affected by a neurological condition.

The Alliance aims to:
•  Raise awareness of neurological conditions and their impact on individuals and society
•  Inform and influence policy makers about the needs of people with neurological conditions
•  Secure the highest standards of service and improved care for people with neurological conditions
•  Promote research and the dissemination of information about neurological conditions

The Neurological Alliance’s concerns are:
•  The low priority given to addressing the needs of the very large and diverse group of people affected by neurological conditions
•  The need for nationally accepted standards of care
•  Fragmentation and lack of co-ordination between hospital and community services, health and social care, statutory and voluntary sector organisations
•  Raising awareness among health and social care and other professionals about the physical, social and psychological impact of neurological conditions
•  Ensuring that those affected are involved in the management of their condition
•  Promoting research which focuses on the needs and concerns of people with neurological conditions and the organisations that represent them

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Brain & Spine Foundation

Website: http://www.brainandspine.org.uk

Free Helpline (in the UK): 0808 808 1000

Brain and Spine Information Services—for patients, carers and health professionals

Since its launch in September 1998, the Brain and Spine Helpline, on freephone 0808 808 1000, has responded to over 15,000 enquiries related to more than 250 different topics ranging from Arnold-Chiari malformation to Werdnig Hoffman syndrome.

The helpline is staffed by neuroscience nurses who are, uniquely, able to provide information and support related to all brain and spine conditions—from the relatively common to the very rare.

Many of the enquirers are people who, on leaving the hospital after the acute phase of their illness, find themselves having to adjust to normal life without adequate information about their condition and how to manage varying levels of disability and the impact on employment, education or family life.

The Helpline receives referrals from many other agencies, including NHS Direct, hospitals, GPs and other medical charities. The information given on the phone is backed up by written information found in 25 Brain and Spine Booklets. The booklets can be downloaded free of charge from the Brain and Spine Website, www.brainandspine.org.uk or ordered as printed, bound copies from the Foundation.

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Cochrane Multiple Sclerosis Group Consumer Program

Website: not available

Telephone: +39 02 239 4201

The Cochrane MS Group, based in Italy, highly values the input of patients with MS or other demyelinating and inflammatory diseases of the central nervous system because their personal experiences help clinicians and researchers identify the effects of the disease and healthcare on their lives. The MS Group strongly believes that consumer involvement has a positive effect on the direction of research and feels that the role of MS patients, their families, and relevant voluntary associations should become stronger.

Among its activities, the MS Group provides consumer training to educate patients and their families about systematic reviews, the structure of the Cochrane Collaboration and how the Collaboration and its research groups operate. The MS Group then identifies topics that consumers feel are worthy of discussion and attempts to provide further insight into those areas.

The Group is in the process of contacting all MS societies worldwide to form collaborative relationships, share experiences, and disseminate information about systematic reviews produced by the Cochrane MS Group. Its Consumer Coordinator is a consumer herself and understands the concerns and anxieties of other consumers. In addition to understanding of the needs of consumers, she is knowledgeable about the work of the Cochrane Collaboration, making her ideally suited to working closely with MS patients, their families, and other MS societies.