2013 - 2019: education, service development, research, communication and promotion

1. TiMS Meeting
MS Trust conference
November 5th 2019

2. “What time is the meeting?!!”

3. Looking back, moving forward

4. 2013 - 2019
• Education
• Service development
• Research
• Communication and promotion

5. Education
• Study days:
• Vestibular
• Respiratory
• Cognition
• Podcasts: ataxia , SUMS study, fatigue management,
spasticity, Acceptance and Commitment Therapy
• Videos: spasticity, clonus, handling and positioning
• Resource: Barrier and solutions to conducting research

6. Education
• Managing ataxia for pwMS
• Passive movements: advice for AHPs
• Respiratory pathway

7. Service development
• GEMS – Generating Evidence in MS
• General Competencies for AHPs (MS, PD, MND)
• TiMS Skills and Knowledge framework (275 requested)
• Audit tool
• Self-reported assessment - annual review
• Peer supervision

8. Past research
Sleep hygiene practice
• 2011 survey of 180 MS nurses and AHPs at conference
• 2012 abstract published in Multiple Sclerosis Journal
Core stability exercises for improving balance in pwMS
• 2010 abstract published in Multiple Sclerosis Journal

9. Research
• Fatigue study – development of an exercise and CBT
approach to help manage fatigue – Prof Rona Moss-Morris
• Respiratory pathway - study
• Self-reported review – now gathering data on perspective of
pwMS

11. Pilot
• 16 sites from across the UK
• Provided with the tool and implemented it in the way that
suited their service
• Participants were requested to complete an online survey
questionnaire

12. Pilot – Results
• 52 professionals (PT, OT, MSN, Psychologists)
• 16 sites (Hospitals, MS Centres, Community)
• 173 pwMS over 6 weeks
• 7 sites posted tool in advance to complete
• 14 sites – tool felt useful
• 10 sites – patients valued using the tool
• 43% - difficulty with some questions e.g. “future care plans”

13. Pilot - Conclusion
• Developing AR tool that all clinicians agree on difficult
• Settings
• Types of MS
• Disability levels
• Most services considered useful adjunct to practice and
feasible to implement
• Next step: gaining patient perspective

14. Are people with MS
breathing comfortably?
● Helen Conyers, MS specialist physiotherapist
● Jody Barber, MS specialist physiotherapist
● Sue Wheeler, MS specialist physiotherapist
● Angela Outerbridge, Physiotherapist, Chilterns
MS Centre

15. Are people with MS breathing comfortably?
• A respiratory pathway for MS services
• Test study to assess trends in risk
factors of disease process, co-
morbidities, medication and lifestyle
contributing to low Peak Cough Flow
values in people with multiple
sclerosis

16. Background
● Respiratory complications are one of the most common
causes of death in MS
● Non-elective admissions for respiratory problems in
pwMS in the CCGs of the areas studied averaged
£216,000 per annum between 2016 and 2019.
● Of this, the highest ranking cost was for admissions with
pneumonitis due to aspiration of food and vomit, which
was £75,000

17. Background
● Research shows there is an insidious decline of respiratory
function in pwMS from diagnosis
● Expiratory muscle weakness is the main issue showing a
sharper decline when people stop walking which can lead to
a weak cough
● Currently, respiratory function of pwMS in the clinical setting
is generally not routinely monitored with any definitive
outcome measures
● There is limited data as to what happens to respiratory
function with pwMS throughout the course of their disease

18. Method
● In TIMS we conducted a study in August and
September to gain a snap shot of the lifestyles,
disease process, medications and co-morbidities
alongside peak cough flow (PCF) values for pwMS of
different EDSS values (0-5), (5.5-7) (7.5-9.5) in 3
centres
● PCF is an easy, quick and inexpensive way to monitor
respiratory function.

19. Method
The study looked at potential trends as to what
might be risk factors contributing to a low PCF and
hence who might be at increased risk.
The idea of the small study was to help inform us
what data is important to collect

20. Results
● The study showed that in ambulatory pwMS with lower
EDSS, lower PCF values were recorded in people who were
obese, smoked and had pain in the back or chest/ abdomen
● In pwMS with higher EDSS, lower PCF values were recorded
in people with reduced activity, upper limb function and
swallow and increased co-morbidities and medications
which might have a depressing effect on the respiratory
system eg gabapentin and opioids

21. Future study
• The plan is to carry out a much larger multicentre monitoring
study in the future to identify any trends in PCF in pwMS
throughout the course of their disease
• If you want to be involved come and speak with us!
• We are on the TIMS stand or at Poster 9 and 10

22. Service development
• Outcome measures - resource
• MS and sex: a resource for health professionals
• Guidelines
• Competencies

23. Communication and promotion
• Website updates
• Newsletter
• Ask TiMS
• Speaking at conferences
• Promoting TiMS at events
• Connecting with MS AHPs in other countries

24. TiMS involvement with -
• NICE 2014 MS Guidelines; Quality standards 2016
• NICE stakeholders
• NHS England project – Care Pathways
• MS Forward View 2018
• Working with MS Society on incidence/prevalence of MS
• MS in Practice – TiMS column
• QuDos awards – judging panel

25. TiMS involvement with -
• Advanced MS Champion posts – working with the MS Trust
to develop the roles
• Conference programme
• Involvement with research proposals

26. Looking forward

27. Looking forward
• Respiratory pathway for people with MS
• Ataxia booklet
• Passive stretching – guidance for therapists
• Competencies re-write

28. Looking forward
• Share your good practice/ideas with therapists in the UK
• Think about doing some research
• Tell us what would make your work easier
• Let’s work together

29. Looking forward
Michelle Davies – new TiMS co-chair - welcome