Free helpline for 100,000 people with MS in UK

Aug 3, 2012

Information needs at diagnosis - research complete

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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Multiple Sclerosis Trust

Letchworth Garden City, Hertfordshire, United Kingdom

Project Leader

Laura Percival

Fundraising Officer
Letchworth Garden City, Hertfordshire United Kingdom

Where is this project located?