'MS Service in Cumbria' - Dr David Footitt (Consultant Neurologist for Cumbria Partnership NHS Foundation Trust) from the Cumbria Neuroscience Conference

1. MS care in Cumbria
AD MONTES OCULOS LEVAVI
Dr David Footitt

2. What do patients want?
• Treatment and advice as close to home as possible
• Single point of contact with a specialist who
understands their condition
• Professionals to share relevant information to
prevent duplication
• Health and social services to share each others
assessments
• Access to high quality information to enable them to
self-help
• Ability to self refer back as needed

7. Factors affecting service design
• Geography
– Rural compared to urban
– Proximity to regional Neurology Centre
– Size of practise
• Pre-existing resources
– Community rehabilitation
– Community hospitals
– Voluntary provision
– Neurology/neurorehabilitation provision

8. Available Resources – optimistic
GPSI*
Occupational
therapist
Ophthalmology
services
Continence
advisor
Speech and
language
specialist
Dietician
Benefits
agency
Social
services
Carers
Neurorehabilitation
services
Clinical
psychologist
Physiotherapy
Local MS
support
General neurologist
Neurologist with
an interest in MS
GP
PATIENT
PCT
commissioner
Community pharmacist District nurse
PEC chair‡
PCO†
Pharmaceutical
advisor
DMT clinic
Intermediate
care team
Complementary
therapists
Community
mobility services
MS referral clinic
Community matron
Neuroradiologist
Rapid
response
team
Rehabilitation service
Palliative care team
MS specialist nurse
MSS and MST

11. Epidemiology
• Population of Cumbria c. 500k
• Approximately 1000 patients registered on my
caseload
• Further 200 seeing nurses alone (some under
consultants out of county)
• This is considerably more than expected
– Genetics
– Climate

12. MS specialist Nursing
• 3 nurses
– Judith Brassington South Cumbria
– Juliet Greenwood North/West
– Sheila Harper (Stoddart) North/East
• Offer support from CIS through to end of life
planning.
• Clinics / home visits / telephone clinics
• Usually respond same day.

13. MS nursing
• Weekly or more “supervision” by phone/in
person/ video-conferencing
• Link with locality based services
– District Nurses
– Physios
– Continence
– Adult social care / OT’s
– Unscheduled care

14. MS diagnostic pathway
• Triage of patients to DRF clinic where MS likely
• Rapid cross referral when seen by other
neurologist and MS identified.
• Initial joint consultation with DRF and MS nurse
• Follow-up offered 6-8 weeks later.
• Comprehensive information provided at initial
visit
• Invitation to “newly diagnosed” course.
• CIS / Single Sclerosis handled in same way.

15. MS clinics
• Clinics at Carlisle, Ulverston, Penrith and
Workington
• 2 clinics per week, at 2 different sites
• Urgent / relapse slots available in each clinic
• Mixture of DMT review, diagnostic and
symptom management
• MS nurse in attendance
• Follow-up according to need, not a schedule

16. Natalizumab
• Antibody against adhesion molecule integrin
• 33% of patients have no progression of disease
(clinically or radiological)
• Given as monthly infusion
• Risk of developing PML – small and related to other
treatments
• Recommended by NICE for aggressive disease (cf
Interferons)

17. Annualized Relapse Rate Over 2 Years
0.0
0.2
0.4
0.6
0.8
1.0
1.2
1.4
1.6
Annualizedrelapserate
1.46
0.28
p<0.001
81%
reduction
NatalizumabI
n=148
Placebo
n=61
Highly Active RRMS
Patients with  2 relapses in prior year and  1 Gd+ lesion at baseline n=209

18. Hazard ratio=0.36
P=0.008
Number of Patients at Risk
Placebo
TYSABRI
ProportionWith
SustainedProgression
0.0
Weeks
24
Placebo 26%
Natalizumab 10%
61 57 54 51
148 144 141 140
0 120
0.1
0.2
0.4
0.5
0.3
72 1089648
47 46 45 42 39 36
137 131 130 128 123 123
12 36 60 84
Risk of Disability Progression
Highly Active RRMS
6-Month Sustained
64%
*Patients with  2 relapses in prior year and  1 Gd+ lesion at baseline n=209

19. Cumbria Natalizumab Service
• Prior to 2009 no patients receiving treatment
in Cumbria
• Infusion service established at FGH in Barrow
September 2009, no treats 20 patients.
• Penrith infusion service commenced March
2012, treating 12; 9 Treated at CIC; 20
awaiting repatriation from RVI.
• Annual saving over Tertiary Tariff currently
£101k

20. Injectable DMT’s
• 3 forms of Beta-interferon and co-polymer
one
• Reduce relapse rate by one third
• Little, if any evidence of reduced disability
accrual
• In CIS will reduce the rate of conversion to
CDMS by one third

21. Injectable DMT’s Cumbria
• Provided through Newcastle, Carlisle and
Preston.
• Monitoring prior to new service was patchy.
• Upon review 50 of 120 patients no longer met
criteria.
• Annual saving £350k

22. Oral DMT’s
• Fingolimod, an S1P1 antagonist, currently
available in Cumbria as per NICE guidance.
• 6 patients receiving treatment.
• Teriflunomide, recently NICE approved, under
consideration in Cumbria.

23. Spasticity management
• Managed between Neurology and Neuro-
rehab.
• Botox injections in North by Mr Jagat-Singh
• In South by Dr Footitt – but physio being
trained to conduct.
• Baclofen pumps inserted at Tertiary Centres
and managed in Cumbria.

24. Outcomes
• MS society survey of members 2012
• Based on experience of care over preceding 12
months
• Some measurements I would not agree with:
– Nationally “only 6 of 10 with relapsing disease on
DMT
– “Northern Ireland only place where patietns seen
every 6 months”

26. Future plans
• Expand Newly diagnosed courses
• Develop and evaluate education course for transition
to secondary progression
• Develop and evaluate “patient passport” for MS
patients
• Integrate physio assessment into spasticity
management
• Expand natalizumab service and appoint infusion
nurse.
• Use EMIS to obtain accurate epidemiology and audit
data

27. Cumbria MS services summary
• Clear definition of individual patients needs
• Matching of these needs to appropriate services
based as close to home as possible
• Close integration of planning between patients,
carers, primary and secondary care, social services,
commissioners and voluntary sector
• Based upon clear choices by patients following
adequate education and information

28. Thanks