Our project on the information needs of people newly diagnosed with multiple sclerosis (MS) has reached the end of the research stage. 34 phone interviews, five face to face interviews and four focus groups took place. In addition, 26 people not selected for interview also submitted information. The majority (84%) were people with MS but family members also contributed.
Analysis of the responses is still underway. So far our research has highlighted factors that influence how people seek and use information after diagnosis including:
The MS Trust commissioned this research to help us develop better resources for people newly diagnosed with MS in the future. We will update you further on this project once the responses have been analyzed. Thank you for supporting us to provide the best possible information for people with MS through our helpline, website and free publications.
"I was diagnosed with multiple sclerosis by letter. It was a copy of the results from my recent brain scan. When I read that I had lesions in my brain that “suggested demyelination”, I had a pretty good idea what it meant. There was a number I could call for more information, but I tried and never got through.
"From the day that letter dropped in, back in 2008, I lost two stone. I couldn’t eat from the stress and anxiety. I just felt like I was going to get worse and worse and die within months. I couldn’t go out, couldn’t get dressed, couldn’t work; I didn’t know where to turn.
"A month later, when I was sent for a lumbar puncture, I picked up the MS Trust’s newsletter at the hospital. I rang the MS Trust and can’t explain the relief I felt when the person on the end of the phone said “we have people here who you can talk to”. It was as though I was on a boat adrift out in a wide ocean, then I threw a line out and somebody caught it.
"The lady I spoke with was extremely informative and more importantly for me, very understanding and empathetic. She told me that every single person with MS is different and took the time to talk with me about my concerns.
"I felt much better after the call. It’s really comforting for me knowing there’s somebody out there with the expertise about my condition that I can contact easily. For me, that’s all I need to put my mind at rest and enable me to get on with my life. I will be forever in debt to the MS Trust, for helping me at what was such a terrible and upsetting time."
Thank you for supporting this project, which helps people like Amanda every day,
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
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
Firstly a big thank you to everyone who has made a donation towards the MS Trust's helpline for people with MS in the UK. We are very grateful for your support.
The last three months (December 2010 to February 2011 inclusive) have been particularly busy for our Information Team who answer the calls, emails and inquiries we receive. We suspect the increase is partly to do with the Government's proposed changes to the NHS which is a real worry for people with MS as MS services are likely to be affected. Our support line will therefore be even more vital as a first point of call for those who are stressed and do not know what to do next.
We have helped the following number of people in the last three months by answering their questions and/or providing them with information about MS related issues:
February 2011 = 933, January 2011 = 685, December 2010 = 267 (Total of 1,885 - the total for the previous three months was 1,431)
The majority of the calls we receive are from people with MS; 1,414 over the last three months. We received 266 calls from MS health professionals including nurses and therapists, and 118 from family members who are affected by MS.
The most common inquiries were about core stability and MS nurses. Our most requested information book was 'Primary progressive MS exposed', and most popular factsheet was 'cognition' (memory and thinking).
Louise, aged 46, is married with two children and was diagnosed with MS in 2003.
Initially Louise didn’t want to know about MS. Then she started researching and found out too much – with MS, it is like asking “How long is a piece of string?” – it is just too big to comprehend. But Louise feels she has now reached a point at which she can’t deny where she is, so she now wants as much information as she can get. The information and support she gets from the MS Trust helps her to make her own choices about the management and treatment of her MS. Louise says "I really appreciate the MS Trust's helpline and information service and know that it is a trusted source of information. It's my first point of call!"
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