August 2011 Open door

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Order form For a full list of publications visit www.mstrust.org.uk/publications

DVDs Move it for MS – a DVD of exercises for people with MS (£1) Also visit the Exercises for people with MS pages at www.mstrust.org.uk/exercises

Books Sex and MS - a guide for men NEW Sexuality and MS - a guide for women UPDATED At work with MS Primary progressive MS exposed NEW Living with fatigue MS explained MS and me - a self-management guide to living with MS MS: what does it mean for me? Tips for living with MS

Factsheets Regularly updated, we now have more than 20 titles available including Fampridine NEW Fingolimod (Gilenya) Natalizumab (Tysabri) Spasticity and spasms Vitamin D FES Stem cells

Publication leaflet The full list of titles available from the MS Trust Exercise & MS - resources for people with MS and their health professionals All items are free unless stated, but if you would like to make a donation towards our costs, we would be very grateful

I enclose a cheque payable to the MS Trust If you Gift Aid your donation, we can reclaim the tax! I would like the MS Trust to treat this donation and all donations I have made for the four years prior to this year and all donations I make from the date of this declaration until I notify you otherwise, as Gift Aid donations. Signed

Date

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You must pay an amount of Income Tax and/or Capital Gains Tax in each tax year (6 April 2011 to 5 April 2012) at least equal to the tax that the MS Trust will claim from HM Revenue and Customs on your Gift Aid donation(s) for that tax year. Please notify us if you change your name or address.

Name Job title (if health professional) Address

Postcode Telephone number A copy of the MS Trust’s data protection policy is available on request

The Information Standard What is it and how will it make a difference to me? It is said that there is more information in one issue of the Sunday Times than a medieval scholar would have come across in a lifetime. There are over 50,000 producers of health and social care information in the UK alone and typing ‘multiple sclerosis’ into Google produces more than 8 million results. In all of this, how easy is it to judge what information is accurate, based on good evidence, up-to-date and unbiased? The Information Standard was devised by the Department of Health to allow people to do just this. Information providers who meet the Standard have demonstrated how information fits into the aims of the organisation, how evidence for a particular publication is identified and assessed and how the target audience and expert reviewers are included in developing information. High quality information is key to the successful management of MS. It has been shown to increase confidence and involvement in making decisions, reduce isolation and anxiety and improve clinical outcomes. Now there is an easy way to recognise health information you can trust. Evidence based information has been at the heart of the MS Trust's work since our foundation in 1993 and so we are delighted to have been certified to carry The Information Standard quality mark. You will soon see this on our publications and website pages. The assessment process is rigorous and will be ongoing, but we believe it will help us to ensure that the information we produce is accurate, evidence based and relevant to people living with MS. Would you like work with the MS Trust in developing information resources? To find out more and join our readers' panel email info@mstrust.org.uk or call the information team on 01462 476700

Return to: MS Trust, Spirella Building, Letchworth Garden City, Herts, SG6 4ET

Multiple Sclerosis Trust Spirella Building, Bridge Road, Letchworth Garden City, Hertfordshire SG6 4ET T 01462 476700 F 01462 476710 E info@mstrust.org.uk www.mstrust.org.uk Registered charity no. 1088353

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www.mstrust.org.uk

August 2011

Inside this issue...

Welcome to the summer edition of Open Door

Oral MS drugs

Improving services for people with MS is one of our main aims and that comes from the education and support work we do with MS nurses and therapists and the research we commission. We have just completed our third audit of MS services in England and Wales against the NICE MS Management Guidelines. As well as people with MS, the audit collected data from those organisations who commission, provide, and monitor MS services and this time we included GPs, who will have a much bigger role in commissioning in the future. The audit is carried out in partnership with the Royal College of Physicians (RCP), where analysis is underway and the full results will be published in September. Thanks to all of you who took the trouble to take part, especially as there were some problems with the RCP survey website.

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My Story

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MS Trust comes of age!

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As you can see below, we have recently launched Sex and MS a guide for men, along with an updated version of Sexuality and MS for women. Sex is not an easy topic to talk about, so our sincere thanks must go to everyone who has shared their experiences for these books and to our contributors on pages 8 & 9. We have been overwhelmed with the response to My Story on our website, from both authors and readers. Here we feature just three stories of MS from different perspectives, but there are many more personal reflections on the website and thank you to everyone who has contributed. As it’s August, it must be Christmas catalogue time and as usual we offer free post and packing during this month. Very best wishes and thank you for supporting our work.

Pam Macfarlane Chief Executive

Also inside:

New books on sex and MS The MS Trust's latest books are Sex and MS: a guide for men and a revised version of Sexuality and MS: a guide for women. Both books give a frank explanation of symptoms and a guide to treatment and management. The intention is to help people talk about their concerns, not only to healthcare professionals but also to their partners and friends. For more about the books see pages 8 and 9.

www.mstrust.org.uk

Call: 0800 032 3839

MS and access to services

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News

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Research news

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Men, MS and sex

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Me, MS and my sexuality

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Supporting the MS Trust

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