The document summarizes feedback from an expert patient breakout group discussion. The group discussed: 1) Main issues like becoming an expert patient, reducing secrecy, sharing experiences, and finding inspiration. 2) Areas of agreement that patients should encourage sharing, support each other, and educate others. They need resources to help families and overcome negativity. 3) Examples of good practices like programs for young people in Spain, raising MS awareness, and practical support groups. 4) A local action plan to share contacts, train young patients, start clubs, bring specialists to families, create online support groups, and develop resources for talking to children about MS.

1. The
Expert
Pa,ent
Feedback
to
Plenary

2. The Expert Patient – Breakout-group
´ 1. Main issues.
´ 2. What needs to be done – areas of
agreement and disagreement within the group.
´ 3. Examples of good practice.
´ 4. Local Action Plan.

3. 1. Main Issues
´ Will being an expert patient help
´ Getting rid of secrecy
´ Sharing and learning
´ Finding inspiration and role models

4. How to get started
´ What resources and back up is available
´ Are there enough of us (Montenegro experience)
´ What information is useful (check, edu., gov.,
healthcare professional MS’ society and each other)
´ We need resources to support our loved ones and
especially children

5. 2. What needs to be done
´ Encourage an atmosphere of sharing in our society
´ We are our best resource
´ The inspirations and role models are among us
´ Support for friends, collegues, families, especially
children

6. …
´ Overcoming negativity – structured workshops
´ We need to learn the language of negotiation –
Training please
´ Educating others

7. 3. Good Practice
´ Programme for young people in Spain
´ The 1 MS Organisation supporting people in big
dreams, in being a rebel and individuals
´ Raising awareness of MS in school and colleges
´ Patients and carers setting up groups
´ Use of language – not sufferers – share
´ Working to get drugs funded…….

8. …
´ Practical help and advocacy
´ Positivity – share
´ Awards of wheelchairs practical
´ Educational sessions (www.Academia35.pt –
educational session for Young PwMS)
´ Relationship with media

9. 4. Local Action Plan
´ Share contact details – share information and support
´ Use young people (with contact details) to welcome
young members
´ Training given young members to be E.Ps
´ Start a club for young members
´ Bring specialist nurses to families and patients
´ Buddy System

10. …
´ Practical support to enable therapy, combat
loneliness , rehabilitation for young people
´ Create Facebook group (confidential)
´ Support for people to explain MS to their children
´ Having a simple picture book