Multiple Sclerosis Trust

The MS Trust's mission is to make a real difference for people with MS through the provision of information and professional education, by funding practical research and by campaigning for the improvement of MS services. We work to the highest possible standards and actively seek opportunities to work with other organisations to provide real benefit for people with MS.
Jan 19, 2012

Researching the information needs of people with MS

Thank you very much for supporting our free helpline for people with MS in the UK. This service is run entirely from voluntary contributions and without the support of generous donors like you, it could not continue.

Access to clear and accurate information is important for everyone, but people are individuals, and they differ in the kinds of information they need, where they get it and what form the information takes. Whilst knowing about multiple sclerosis and its treatment is crucially important, many people may also want to know more than just the medical facts. Family and friends will have their own information needs too. The information needed may change as the condition does and may differ according to the type of MS.

We are currently in the process of setting up a research project looking at the information needs of people newly diagnosed with MS. The results of this will inform the resources and materials we develop over the coming year and beyond, helping to ensure that we are providing the type of support that people really need via our helpline, website and publications.

To get the project started, we have commissioned a team of three independent and experienced researchers, Ros Levenson, Mercy Jeyasingham and Sarah Smith, to help us better understand the information needs and preferences of people who are newly diagnosed with MS in the UK. We are now recruiting participants for the study and look forward to updating you on how this research progresses.

Thank you again for helping us to provide the best possible information for people with MS. I hope you will continue to take an interest in our work.

“I was diagnosed with MS seven years ago. Since this time, the MS Trust has supported me both with printed materials and through the phone line. Without the MS Trust I would feel very isolated with my condition - it’s good to know you are there.” Anonymous user of our helpline

Dec 1, 2011

Our work with MS nurses continues

Our work with MS specialist nurses is ongoing and our ultimate goal is to ensure that everyone with MS, whatever their circumstances, has access to quality healthcare. The network and resources that the MS Trust offers to health professionals working with people with MS is unique. Every MS nurse knows that they can turn to the MS Trust if their service is under threat, and for their own professional education and development, as well as to access information that is up to date, timely and well researched.

Last month, around 350 specialist nurses, therapists and other health professionals attended the MS Trust’s 15th Annual Conference. This is a key event for MS nurses every year and the only place where they can come together with such a wide range of other professionals working in MS. Our conference gives them the chance to share experiences and learn about the latest developments, as well as giving us a great opportunity to learn more from the nurses about what support they and their patients need for the future. 

"This year's conference was excellent. It helped to refocus my mind following a very difficult 9 months of restructuring at work" MS Nurse who attended our Annual Conference

It is only thanks to the funds raised from generous donors, like you, that we are able to continue working so hard on behalf of every MS specialist nurse. For every MS nurse we can support, the benefits will roll out to hundreds of people with MS and their families. 

Thank you again for donating to our MS Nurse Support Programme and I look forward to keeping you updated on our progress.

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Sep 15, 2011

Helping people with MS get the information they need

With more than 50 people being diagnosed with MS every week in the UK, and with new treatment options developing all the time, the MS Trust’s information team is receiving more enquiries than ever before. Enquiries are up 16% on this time last year.

People contact us by phone, email, post and even via Facebook and Twitter to ask all kinds of questions about life with MS. Sometimes we can answer straight away; sometimes we will need to do some additional research, but either way we will find them the information they need, based on the latest evidence available.

The MS Trust is the only place that offers a service like this and we have recently been certified with The Information Standard from the Department of Health to acknowledge the quality of the information we provide. Good information has been shown to increase confidence and involvement in making decisions, reduce isolation and anxiety, and improve clinical outcomes.

Thank you for supporting this service, which makes a real difference to the lives of people with MS.

“The MS Trust has opened up a world of information and contacts. You feel welcome whatever your issue or question. At times MS can be extremely hard on every family member, however the Trust's Open Door newsletter always sat on the table, looking quite dog-eared by the time the next one comes along. Thank you for being there.” Naomi-Jane, who was diagnosed with MS in 1998

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