This document discusses research into the information needs of people newly diagnosed with multiple sclerosis (MS) and the development of information resources to address those needs. The research found that people value empowering, trustworthy, and personalized information tailored for their stage of diagnosis. Based on these findings, the MS Trust created core information packages that provide basic MS information and direct people to additional support resources. These packages are available in various formats including booklets, online pages, and videos to accommodate different needs. The document also examines challenges in meeting information needs due to variability between MS health services.

1. Information resources for
people newly diagnosed with MS
Jane Havercroft, Information Officer, MS Trust
with Gail Clayton, Debbie Quinn & Karen Vernon

2. Bite-size and/or in depth information

3. Research: The information needs and preferences
of people newly diagnosed with MS
• Researchers:
• Ros Levenson
• Mercy Jeyasingham
• Sarah Smith
Interviews:
• 34 telephone interviews
• 5 in depth face to face
interviews
• 4 focus groups
• 25 email submissions

4. Uncertainty
and change
Empowerment
People newly
diagnosed
with MS
and
their families
Trust and
authenticity
Personalisation
Format of
information
Coordination of
information
provision
•Pacing and layering of info
•Appropriate for different stages
•Offered repeatedly
•Maintain MST’s
reputation as
reliable source
•Relationships with
clinicians
•Well-balanced and
realistic information
•Transparency about
evidence and
inclusion criteria
•Explore further opportunities for
individualised information
•Explore further opportunities for
information relevant for specific
groups
•Signpost to sources of
support
•Retain choice of formats
•Be aware of information
needs of people with
cognitive difficulties
•Work with health
professionals to plan
better co-ordinated
information provision
•Assess impact of
diagnosis
•Review gaps in
information provision
•Communicate
differences between
MS charities
•Information packs for use
with other people
(families, friends,
employers, GPs, etc.
Support
- theme
- implication

5. The design brief
Small introductory resource
• Postcard(s)
• Discrete to fit in pocket or
handbag
• Answers key questions
• Offers options for more
information
Further information
• Pick and mix style
• Pack of core information useful
to most people
• Optional information

6. The little booklet

7. The core pack

9. Information sheets in the core pack
• About MS
•What happens after diagnosis?
• Making the most of appointments
• Living well with MS
• Sources of information and support
• Publications list

10. Optional information sheets
• Telling people
• Working and studying with MS
• Relapsing remitting MS: an
introduction
• Primary progressive MS: an
introduction
• Secondary progressive MS: an
introduction
• Treating symptoms
• Disease modifying treatments:
an introduction
• MS and your feelings
• Research and MS
• MS and life choices
• A short guide to understanding
my MS

11. Choice and layering of information

12. Online edition www.mstrust.org.uk/newlydiagnosed
www.mstrust.org.uk/makingsenseofms

13. Video content www.mstrust.org.uk/newlydiagnosed
www.mstrust.org.uk/makingsenseofms

14. NICE Clinical Guideline 186 - information and support
The consultant neurologist should ensure that people with MS are
offered oral and written information at the time of diagnosis.
This should include information about:
• what MS is
• treatments, including disease modifying therapies
• symptom management
• how support groups, local services, social services and national charities are
organised and how to get in touch with them
• legal requirements such as notifying the DVLA and legal rights including social
care, employment rights and benefits.

15. Meeting information needs – who can help?
• Neurologists – specialists and generalists
• MS nurses
• Other health professionals e.g. GPs
• MS charities

16. Meeting information needs – the challenges
• Every MS service is different
• Diagnosis by MS specialist or general neurologist?
• MS nurse present when diagnosis delivered?
• MS nurse seen immediately after the neurologist?
• MS nurse on a different site?
• Person referred from general to specialist neurologist?
• How long does referral take?
• Is information given out with the diagnosis?

17. Pilot runs – test how might work in practice
• MS service Neurologist MS nurse
• Salford Specialists Karen
• Cardiff Specialists Gail
• North Northants Generalists Debbie
• Edinburgh Specialists
• Hertfordshire (WGC) Generalists
• Norfolk and Norwich Generalists