Chris Jones and Pam Macfarlane have worked together for 21 years to support people with multiple sclerosis (MS). They have campaigned for disease-modifying drugs, developed educational resources for healthcare professionals, and conducted research to evaluate MS nurse services and define the value of nurses and allied health professionals. Looking ahead, their challenges include ensuring equitable access to specialists, drugs, and complex care for all with MS, and addressing funding and expertise issues. They are committed to continuing their partnership through sharing knowledge and engaging others to meet the needs of those living with MS.

1. Celebrating 21 years of working
together
Chris Jones & Pam Macfarlane

5. Partnership working
• 1996 Launch of the MS Nurse Forum
• 1997 Campaigning for DMDs (2001-RSS)
• 1998 MS Information pack for health professionals
• 2000 Development Module
• 2000 First research evaluation of MS nurse
• 2001 Specialist Nursing in MS the way forward (Key Elements)
• 2003 Therapists in MS (TiMS) group formed
• 2006 Therapists in MS delivering long term solutions
• 2011/13 Defining the Value …..Nurses and AHPs
• 2012 Generating Evidence in MS Services (GEMSS)
• 2015 MS Forward View
• 1993-2017 – Publications – Young people, sex, fatigue, falls, spasticity, relapses

6. What’s changed for the MS community?
• There are more of you
• There is a lot more to talk about – more drugs, treatments,
research, ways of doing things
• Technology
• Understanding & Expectations
• Complexity - policies, procedures, guidelines, regulations,
frameworks, pathways etc.

7. Challenges
• Equitable access for all – specialists, drugs, treatments, therapies
• Funding and focus – Cinderella syndrome
• Loss of expertise – succession planning
• Holistic viewpoint – especially for those who have advanced
symptoms and need complex care

8. What’s the MS Trust doing?
• Information – technology improves accessibility
• Education – Development Module, Conference
• Research into service provision and improvements
• Specialist Nurse Programme
• Advanced MS Champions

9. MS Trust’s challenges
• Funding
• Funding
• Funding
• Recognition of work and brand
• Outcomes and impact

10. The way forward together
• Hold onto the vision - focus on the real needs of people with MS
And in order to meet those needs
• Share – ideas, innovation, knowledge, experience, understanding
• Engage with everyone who can help achieve the vision
• Be constructive and positive
• Be irritating
•Be bl***y annoying

11. Our continuing partnership
Despite the challenges for all of us:
• You are determined to offer the best care possible to people
living with MS
• We are committed to working with you to provide resources and
support

12. The next 21 years
• And now to the difficult bit …………….looking to the future