Free helpline for 100,000 people with MS in UK

by Multiple Sclerosis Trust

Our latest research project looked at the information needs of those who are newly diagnosed with MS and those who support them. Appropriate information around the time of diagnosis is important as many people know little or nothing about MS when they, or a loved one, are diagnosed. Alternatively, they may know someone who has MS and assume that everyone's experience is the same.

This research provides information about what is most important to people around the time of diagnosis and will allow us to develop better resources for people newly diagnosed with MS in the future. It also highlights to health professionals the information preferences and needs of people with MS and should allow them to work more effectively.

Key findings were:

  • Neurologists and MS specialist nurses were the key providers of information around the time of diagnosis
  • The need for information changes over time, not always in a predictable way
  • Information should be offered in stages or layers, so that a person can choose how much information they receive on a particular topic at any particular time
  • Positive, practical, up to date information is important
  • Information tailored to the needs of an individual is useful
  • Information should be delivered in a variety of formats
  • The evidence base, or lack of evidence, should be made clear
  • Information can be empowering but too much information, or information at the wrong time, can be detrimental
  • Some people need support to use certain information, for example, when choosing a disease modifying treatment
  • Charities play an important role, including signposting to other organisations
  • Information was lacking in some areas especially on benefits and local services

We are only able to continue providing information to people with MS thanks to the support of generous donors like you. Thank you for helping to fund our free helpline and we look forward to updating you again soon.

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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:

  • How they seek information in general (not just about MS)
  • Whether diagnosis was a drawn out process and largely expected, or whether it was quick and unexpected
  • What symptoms they are experiencing
  • The time needed to adjust to the idea of having MS
  • Support from friends, family or health professionals in using information, especially when deciding about treatments
  • MS nurses played a key role in providing information and supporting people to use it.

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.

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"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

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Organization Information

Multiple Sclerosis Trust

Location: Letchworth Garden City, Hertfordshire - United Kingdom
Website: http:/​/​www.mstrust.org.uk/​
Project Leader:
Kirstie Connah
Letchworth Garden City, Hertfordshire United Kingdom