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Project information

What people newly diagnosed with MS need to know

Structured research to find our how our charity can improve the way we help people newly diagnosed with MS to get the information and services they need

January 2012 - June 2012

Charity information: Multiple Sclerosis Trust

Multiple Sclerosis Trust logo
  • Need


    People newly diagnosed with MS need information that the NHS does not provide to help them make decisions about managing their symptoms and treatment. Technological advances are changing the way information can be accessed, but as a result people are exposed to a bewildering range of information sources of varying quality and relevance. For people with MS, there may be physical and cognitive factors that impact on how they can access and use information.


    We will identify what information people with MS need now and how they and the health professionals working with them believe their needs might change as NHS services are restructured and new treatments develop. We will learn how they want to access information. As a result we will review our services to ensure we provide the right kind of access to reliable information people with MS need and know they can trust. We will publish our research so it can be of use to the wider MS community

  • Aims

    Aim 1

    Determine the needs of people newly diagnosed with MS for information and methods of access to it.


    » Researchers conduct structured interviews with people with MS, health professionals and servce commissioners to elicit their needs.

    What success will look like

    Success will be clear, well-evidenced and timely findings from the research project that we can use to inform our services.

    Aim 2

    Review and improve our information services for people with MS in the light of the research results.


    » Review the operation of our personal information service, our website and our publications against the needs identified by the research.
    » Create, revise/update or discontinue services and materials as indicated by the review.

    What success will look like

    Success will be a range of cost-effecitve products that satisfy the needs of our 42,000 contacts in the MS community as demonstrated by feedback from them.

  • Impact


    The research will form a basis for the structure and strategy of our information service for newly diagnosed people for the next 5 years, and is intended to provide a model we can use for future service development in other areas of our work. We will demonstrate success through positive feedback from our contacts and through an increase in the use of our services within the MS community.


    Researchers do not make timely reports or findings are not well-evidenced or do not adequately address the issues specified.
    Will deal with through clear and unequivocal brief on what we want to achieve, careful contract specification, regular management by an expert steering group and an interim report after 3 months to assess progress.


    Will provide them with published research report when completed. Will report at whatever intervals they require on our progress with service review and associated changes.

  • Budget

    Budget - Project Cost: £30,000

    Loading graph....
      Amount Heading Description
      £30,000 fee to researchers activities yet to be identified in detail
  • Background


    UK-wide coverage.


    Any of the 100,000 people with MS - especially the 2,500 people a year who are newly-diagnosed; also their families and carers and the health and social care professionals who work with them.

  • Why Us?

    Why Us?

    We are widely recognised within the MS community as the definitive source of health information about MS and its day-to-day management. We carry the Department of Health's Information Standard quality mark and have won several awards from the British Medical Association for our publications and website.

    Read more about the Charity running this project.


    Amy Bowen

    The Charity's Director of Services - Project Director with overall responsibility for the appointment of the researchers and the project outcome

    Jane Havercroft

    Project manager within the charity, charged with day-to-day management of the contractors and administrative support for the steering group.

    Steering Group

    A group of academics, clinicians, people wirh MS and their families who will oversee the project.