Information resources for people newly diagnosed with MS

Jane Havercroft, Information Officer, MS Trust

with Gail Clayton, Debbie Quinn & Karen Vernon

Bite-size and/or in depth information

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

People newly

diagnosed

with MS

and

their families

Uncertainty

and change

Trust and

authenticity

Personalisation

Format of

information

Coordination of

information

provision

Empowerment

•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

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

The little booklet

The core pack

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

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

Choice and layering of information

Online edition www.mstrust.org.uk/newlydiagnosedwww.mstrust.org.uk/makingsenseofms

Video content www.mstrust.org.uk/newlydiagnosedwww.mstrust.org.uk/makingsenseofms

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.

Meeting information needs – who can help?

•Neurologists – specialists and generalists

•MS nurses

•Other health professionals e.g. GPs

•MS charities

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?

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