MS Society Information Services and Resources

MS Society Information Services The mission of the MS Society Information team is to help ensure that every person who lives with MS has easy access to the latest evidence-based information and local support.

The MS Society National Information Centre in London provides information services to anyone affected by MS, including carers and professionals on all aspects of living with multiple sclerosis. The team's activities and services we provide: o Library service o Information Enquiry line o Publications o Awareness events (locally and online) o Local Information services o Info Services Newsletter o Information services advice

You can contact the Information team via email [email protected] or call 020 8438 0799 (Monday to Friday 9am-4pm).

MS Society publications

 MS Essentials and other booklets and audio and visual material Ms Society publications are written in plain English, based on research findings and fully referenced. They cover many aspects of MS, from symptoms and treatments, to benefits and social services, to everyday living.

A our publications and a full list of our publications is available on our website at www.mssociety.org.uk/publications. You will also find Welsh editions and Translations for other language versions (Hindi, Urdu, Hindi, Gujarati, Bengali, Turkish, and Farsi). See Scottish editions for Scotland only publications. For more details please check the website or contact us.

Get familiar with the symbols: for our audio material, either as a cassette or CD or online A number of publications are available on audio tape and CD. For more details please check the website or contact us. for our DVDs (ie. Annie and Dan) this means there's an awareness film, video on this topic (see the section Online Awareness films and Q&As on page 9) the information is published under the Information Standard scheme, showing that it is reliable and trustworthy. Find out more about the Information standard scheme at http://www.mssociety.org.uk/support_and_services/information_services/i ndex.html

Audiovisual resources Filmed interviews, presentations with an expert or exercise sessions with transcript and followed by an online live Q&A (see Online talks and Q&A in this resource file Awareness talks section).

 Ordering publications You can download publications or order copies of our publications at the MS Society publications shop on our website at www.mssociety.org.uk/publications. (Ordering online is the most cost effective way of ordering).

If you do not have access to the internet, telephone the orderline 0300 1000 801.

If you are a health professional or branch member and wish to order in bulk please contact the Information Team email [email protected] or call 020 8438 0799 (Monday to Friday 9am-4pm) with your full name and postal address, branch name (if appropriate), contact email address and telephone number. We will then be able to give you a login so that you can receive multiple copies of publications for distribution to people affected by MS.

Your order should reach you within ten working days - if not, contact us. Publications can only be sent to UK addresses. Bulk orders for branches and professionals are limited to a maximum of 25 copies (printed publications) or five copies (audio versions). If you need more than this for a special event, please contact the Information Team.

For a list of our core titles with latest edition dates published under the Information Standard, see Core Publications latest.doc (45 kb) go to www.mssociety.org.uk/publications.

MS Library services and Online catalogue

MS National Information Centre and Library The MS Society National Information Centre in London offers a national resource, and a one stop shop for all MS information needs. Books and medical research articles are available for loan, or can be sourced for those affected by multiple sclerosis (MS), whether professionally or personally. Librarian: [email protected] Tel: 020 8438 0796 (weekdays 9am-5pm)

 MS Society Library database www.mssociety.org.uk/library includes:  The full text of MS Society publications  Web links to key publications and articles on MS produced by other organisations.  A shopping cart – find and request loans of books, DVDs and CDs, by email. (Requests for articles not published by the MS Society must still be made by post with a signed copyright declaration and payment.)  Easily identifiable information for a lay audience or for younger people  DOI links to professional journals – this means that if your institution subscribes to the relevant journal, or the article is ‘open access’, the links we provide will take you straight to the full article. If not, you will still usually be able to access the abstract.  You can:  Request loans of books, DVDs and CDs  Order photocopies of articles held in the Library

 Current Awareness Services If you would like to keep up-to-date with the literature on MS, you can sign-up for any of the current awareness emails sent out from the Library: o Weekly or monthly research alerts listing new papers about MS added to the PubMed database o New in the MS Society Library – a monthly selection of items added to the Library database. o Book reviews – reviews of books for a lay audience written by people with MS

 Info Services eNewsletter Bi-monthly update of resources, good practice and information related events. Available from the Branch Zone news section or http://mssinfonews.blogspot.com/

You can be added to the distribution list to receive alert or hard-copy version of the newsletter please contact the Local Information Services coordinator at [email protected].

Events

For upcoming local and online events, go to the events page at: http://www.mssociety.org.uk/news_events/events/index.html

The Info Team organises a programme of monthly physical and online awareness events where specialist health or social care professionals inform the public about current knowledge of multiple sclerosis, its management and treatment, and quality of life issues. We have a programme of 6 physical talks and 7 online talks throughout the year.

Awareness Talks Purpose: Expert led talks to inform the public (generally non-technical, although informed about MS audience) about current knowledge of multiple sclerosis, its management and treatment, and quality of life issues. Audience: 80 to 100 delegates of people with MS, their carers, friends generally and open to professionals. Format: A one hour talk with an expert and when possible a person affected by MS personal perspective on the subject. Generally a working week days evening to suit professionals, Followed by 30 minutes Q&A session and a buffet served 30mns before the talk. Location: Accessible premises, generally hotels, in accessible area.

Online Awareness films and Q&As Purpose: Experts led interview and Q&A session to inform the public (generally non-technical, although informed about MS audience) about current knowledge of multiple sclerosis, its management and treatment, and quality of life issues. Audience: Internet users: People with MS, their carers, friends and interested professionals. Format: A video interview available on MS Society website with a transcript and followed by a one week Q&A forum where the expert is available to answer questions from the public. The Q&A forum is moderated by the Information Team.

Upcoming talks in the Events page at: http://www.mssociety.org.uk/news_events/events/index.html

Previous talks: Video: http://www.mssociety.org.uk/awarenesstalks Q&A forum: http://www.mssociety.org.uk/applications/discussion/qanda.rm Other useful organisations

Below are key resources for information on MS and other relating research and social issues. Find further useful organisations on our website Referral List, at: http://www.mssociety.org.uk/support_and_services/ helpful_organisations/index.html

Multiple Sclerosis Multiple Sclerosis International Federation (MSIF) http://www.msif.org - 020 7620 1911 - Information on international MS societies MS Therapy Centres http://www.ms-selfhelp.org - 0845 367 0977 - Spread widely across the UK and Ireland. The majority of centres are members of the umbrella body, MS National Therapy Centres, and there is a separate umbrella body in Scotland. National Multiple Sclerosis Society (America) http://www.nationalmssociety.org Multiple Sclerosis Trust http://www.mstrust.org.uk - 01462 476 700 Multiple Sclerosis Resource Centre (MSRC) http://www.msrc.co.uk MS Decisions http://www.msdecisions.org.uk - If you are making a decision about Disease Modifying Drug treatment of your Multiple Sclerosis, this web site will be of value to you Exceptions because they are good: Bladder and Bowel Foundation http://www.bladderandbowelfoundation.org Rocky Mountain MS Center http://www.ms-cam.org/index.php3 (Complimentary and Alternative Medicine)

Research Pubmed http://www.ncbi.nlm.nih.gov/pubmed/ - PubMed comprises more than 19 million citations for biomedical articles from MEDLINE and life science journals back to 1948. PubMed includes links to full-text articles which may be found in other databases such as PubMed Central or at publisher web sites. Google Schoolar http://scholar.google.co.uk/ The Cochrane Library http://www3.interscience.wiley.com/cgi- bin/mrwhome/106568753/HOME?CRETRY=1&SRETRY=0 - Contains high- quality, independent evidence to inform healthcare decision-making. It includes reliable evidence from Cochrane and other systematic reviews, clinical trials, and more. BMJ http://www.bmj.com - BMJ Group is a trusted global medical publisher providing a wide range of innovative evidence-based medicine products that improve the decisions doctors and patients make every day. From trainee to consultant, BMJ Group offers doctors around the world tailored information, special events, learning resources and recruitment services at every step along their career path. Sense about Science - http://www.senseaboutscience.org.uk/ - An independent charitable trust which responds to the misrepresentation of science and scientific evidence on issues that matter to society,

Trials Clinical Trials http://www.clinicaltrials.gov - ClinicalTrials.gov is a registry of federally and privately supported clinical trials conducted in the United States and around the world. ClinicalTrials.gov gives you information about a trial's purpose, who may participate, locations, and phone numbers for more details. This information should be used in conjunction with advice from health care professionals. Current Controlled Trials http://www.controlled-trials.com - Current Controlled Trials allows users to search, register and share information about randomised controlled trials. Access to all the information on this site is free; charges for the registration services offered by Current Controlled Trials are available on request. Publication services are also available via the range of open access peer-reviewed journals published by our sister company, BioMed Central.

Social Directgov http://www.direct.gov.uk - Information on public services including health benefits, housing, employment, etc Benefit Enquiry Line – 0800 88 22 00 – www.dwp.gov.uk / www.direct.gov.uk/disabledpeople Department of health http://www.dh.gov.uk Financial Ombudsman Service http://www.financial-ombudsman.org.uk - Settle individual complaints between consumers and businesses providing financial services. Equality and Human Rights Commission http://www.equalityhumanrights.com - Their role is to promote equality and human rights, and to create a fairer Britain. They do this by providing advice and guidance, working to implement an effective legislative framework and raising awareness of your rights. DDA Citizen Advice Bureau – 020 7833 2181 – www.citizenadvice.org.uk - Information on benefits, housing, employment, disabled travel, etc

Remember! Providing quality information requires you to know where the information is or who can lead to it, not to know everything. Stay current with your sources of information, your contacts Or contact the Information Enquiry line 020 8438 0799 (Mon – Fri 9am-4pm).