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The value of information

For knowledge itself is power[1]

Way Ahead 2007;11(1):11

The MS Trust Information Service provides evidence based health information to people who have multiple sclerosis, their friends and family.

Information provision is a key area highlighted in both the NICE Guidelines[2] and the National Service Framework for Long-term Conditions[3]. Our health, our care, our say[4] sets out the government's commitment to introducing information prescriptions for all patients with long-term conditions or care needs by 2008. Better information, better choices, better health[5] also puts information at the centre of health.

In this environment the MS Trust aims to meet the information needs of anyone affected by multiple sclerosis, in a number of ways, that are appropriate to the individual and as recommended by the research The information needs of people with multiple sclerosis[6].

Evidence Base, an experienced team of researchers from the University of Central England, was commissioned to evaluate the MS Trust Information Service and answer the questions:

  • Who is using the MS Trust Information Service and whom do we fail to reach?
  • What do people want from our service and what needs remain unmet?
  • How do people find out about the MS Trust Information Service?

Method

All aspects of the MS Trust Information Service were examined. 1,000 questionnaires were sent randomly to MS Trust supporters and to 500 people who read Open Door - our quarterly newsletter for people affected by MS. The MS Trust website hosted a survey and everyone who contacted our personal enquiry service over a period of two months was asked if they would be willing to answer questions. Survey responses were followed up by telephone interviews and four focus groups were held around the country.

Findings

Overall the research found that the Information Services of the MS Trust are highly valued. However, not all our services are recognised and people are not always aware of the MS Trust. The least represented demographic groups were; men, younger people and those less well educated.

"I was impressed with them and I think they need to let other people know that they are around."

"If you don't know where to go for information that's half the battle."

When people had found the relevant information, some used it to help them communicate more effectively with health professionals, whilst others used it more directly to ipmrove day-to-day life such as doing exercises or to help with decisions about possible treatment options.

The research highlighted that friends and family members did not feel there was any information specifically for them. A parent whose adult child had just been diagnosed with MS said, "I wanted to know what we might expect so we could be ready for anything that might happen, but nobody could tell me."

Many people said that they share the information they receive with other people who have MS, friends and family, and that print was the most favoured format.

A call to action

Health professionals clearly play a vital role in signposting the information services available to people affected by MS.

  • Refer people to the MS Trust Information Team - we can answer health enquiries directly from people affected by MS for example, evidence for use of complementary medicines, or factual information behind the latest story of MS in the press.
  • Let us know if you would like any of our publications to support your clinical activities, for example a newly diagnosed group, fatigue management course or exercise group.
  • A member of the information team would be delighted to come along and let people know of the services and support available from the MS Trust Information Team.

Do encourage people with MS to get in touch with the Information Team by phone on 01462 476700 or email infoteam@mstrust.org.uk, or ring us yourself - we look forward to hearing from you.

The MS Trust Information Service would like to thank Evidence Base for their excellent work on this project.

References

  1. Francis Bacon
    Meditationes sacrae 11, "de haeresibus"
    1597.
  2. National Institute for Clinical Excellence.
    Multiple sclerosis: management of multiple sclerosis in primary and secondary care. NICE Clinical Guideline.
    London: NICE; 2003.
  3. Department of Health.
    The National Service Framework for Long-term Conditions.
    London: Department of Health; 2005.
  4. Department of Health.
    Our health our care our say: a new direction for community services. White paper.
    London: The Stationery Office; 2006.
  5. Department of Health.
    Better information, better choices, better health. Putting information at the centre of health.
    London: Department of Health; 2004.
  6. Box V, Hepworth M, Harrison J.
    Identifying information needs of people with multiple sclerosis.
    Nursing Times 2003; 99(49): 32-36.

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