Test slide for MS Trust annual conference

1. Government initiatives
relevant to MS
Amy Bowen, RN MA
MS Trust
4th October 2012

2. By the end of the session we will:
• Define the basic principles and timetable
of the Department of Health Risk Sharing
Scheme and identify its benefits to PwMS
and MS services
• Identify key current developments in MS-
related policy
• Review the evidence for the impact and
value of MS specialist nurses
• Introduce the GEMSS project

3. DH Risk-sharing Scheme
 All eligible people must have access to DMTs on the NHS.
 HSC 2002 / 004 is still in place, all four countries signed up to the scheme
 Recruitment to research cohort closed end April 2005 – over 5,000 patients
 70+ prescribing centres
 ABN guidelines for stopping and starting criteria (new 2009 guidelines now
available)
 Consultants decision on which drug to prescribe
 Two-year results published in the BMJ. 4 & 6 year data to be analysed in
2012
Drugs outside the Risk-sharing Scheme
 Extavia – Interferon beta 1b (2009)
 Tysabri – natalizumab (positive NICE guidance in RES R/RMS)
 Gylenia – fingolimod (positive NICE guidance for highly active despite tx
with Interferons)

4. DH Risk-sharing Scheme
 Primary outcome EDSS
 Drugs had to comply with cost per QALY at 20
year timeframe – national benchmark £36,000
per QALY
 10 year timeframe for monitoring
 Companies reduce price if the outcomes are not
delivered

5. DH Risk-sharing Scheme
Nat. history rate of progression
(observational to 25 years)
5 year trial
data stop 12 year
2 year RCT clinical data
Disability (as EDSS)
data stop
Est. treated rate of progression
Time
(to 99 years)
Treatment stops End of analysis
on average at 9.9 years at 20 years

6. Benefits of the RSS
• For people with MS
– Access to treatments which don’t currently meet NICE
threshold for cost-effectiveness
– Access to services and infrastructure
• For MSSNs
– Fast track scheme for establishing MSN posts
• no longer in place
– Development Module
– Annual Nurses’ meeting
– Conference

7. Current Developments in MS
related policy
• MS Clinical Guideline (CG8)
– Currently under review
– Guideline Development Group established – first meeting was Sept 12
– New Guideline due in 2014
• NICE TA ID 619
– teriflunomide
– dimethyl fumarate (aka BG-12)
– alemtuzumab
– laquinimod
– STA v MTA???
• NICE guideline on urinary incontinence in neurological disease
(CG148)
– Published August 2012
• NICE guideline on neuropathic pain (CG96)
– Currently under review
– Scope still in consultation
• MS Decision Aid
– QIPP initiative - RightCare

9. NCB
Chair: Malcolm Grant
North of England Midlands and East London South of England
Local Area Team 1 LAT 2 LAT 3 > 50 LATs nationally
Some specialised
commissioning
CCG
≥ 3CCGs per LAT
E&NH 220 CCGs nationally
Board must have:
RN
Secondary Care Specialist
Governance Lead (lay)
PPI Champion (lay)
CCG Plus GPs, D of Nursing,
CFO,D of Commissioning

10. Impact and Value of MS Specialist
Nursing

11. Leary, A Indicative caseload for MS nurse
specialists, MS Trust, January 2012
The high functioning MSSN performs complex work requiring
experience, education and clinical acumen.
– Biographical disruption
– Financial issues
– Work and employment issues
– Specialist symptom control
– Strategies for the alleviation of suffering (physical and psychological)
– Managing therapies-after initial medical review the MSSN undertook
most of this work in disease modifying therapies. This seemed to
take a large proportion of the MSSN time. This included prescribing
or recommending a drug regime
– Expert advice to other healthcare professionals-in particular GPs,
palliative care teams community matron
– Supporting clinical choice in DMT therapy-exploring timings and
options
– Vigilance through proactive case management-particularly at
diagnosis, start of DMTs and progression

12. Activity pattern per patient
Activity
Pre Dx Stable Pattern of
Dx progression
Time

13. The hidden value of MS Nurses
MSSN WTE = 37.5 hours per week and based on a 46
week year 1725 hours.
Mean and median hours of unpaid overtime was 5 hours
per week. This adds another 230 hours to the 46 week
working year.
At midpoint band 7 (RCN 2012) £37,545 (without
allowances such as high cost and without adding on-costs)
this equates to an hourly rate for a 1950 hour year of
£19.30 ph.
Thus the MSSN contribute £4428.38 per WTE PA
unpaid overtime. Assuming a population of 255 this
equates to £1,129,256 unpaid overtime per year into the
health economy.

14. Pressures and Drivers
• Targets
– e.g. OPC waiting times
• Efficiencies
– general culture of more for less
• Flexible Workforce
• Re-balancing
– redistribution of resources, rather than cutting
• Cutting costs
– e.g. reduce use of agency staff
• Reducing unscheduled care
– e.g. avoided admissions/A&E attendance
• Ensuring patient safety
– e.g managing risk
• Perverse incentives
– e.g. new : follow-up

15. What keeps senior NHS managers awake at
night is how on earth they are going to make
4% efficiency savings each year until 2015 (and
probably for several years beyond that) and
make sure that local services stay safe and
viable.
Judith Smith
Head of Policy
Nuffield Trust, 2012

20. A few questions….
• Do you know the size of your individual and service caseload?
• Do you stratify your caseload and can you demonstrate how you match
service intensity to each strata?
• How do you demonstrate the complexity of your role?
• How do you make the ‘but for’ case to show likely patient outcomes if your
role didn’t exist?
• Do you know the metrics that Trust managers use to measure your service
performance?
• Do you have an idea what outcomes and metrics commissioners are using
to measure provider performance?
• Do you know if your service has an SLA or is under a block contract?
• How well do you think your current data collection matches the needs of
your key audiences?
• Do you know what parts of your role have a cost attached?
If you were asked to provide activity and outcome data for
your service for the last year, would you be able to produce
that evidence within a 2 week deadline?

21. Outcomes, outcomes, outcomes
• NHS Outcomes Framework
• QIPP – Quality, Innovation, Productivity, Prevention
• CQUIN – Commissioning for Quality and Innovation - ££
£
• Year of Care
• Pathways

22. NHS Outcomes framework
domains

23. Different perspectives on value
of MS nurse services (illustrative)
Audience What might they compare? and
Measurement
analysis of inputs against
Commissioners of Cost ofcommissioning service vs.
outcomes
service Outcomes
Managers of Cost of providing service vs.
service income derived from service,
reduction in other costs and other
value created
Patients and Cost of receiving service vs.
carers Outcomes

24. Specialist nurses need to develop skills and competencies
to justify and secure their future and it is vital for them to
develop a level of business acumen that will put them in a
stronger position to defend their services. They need to be
able to write a strong business case that is grounded in
current policy, national imperatives and the NHS outcomes
framework.
Monica Fletcher, Chief executive,
Education for Health in Nursing Times, July
2011

25. As efficiency savings turn into job cuts, it is often nurse
specialists who find themselves having to justify their
existence. They generally command higher salaries, as well
as requiring set-up investment. We know that these nurses
are often highly rated by patients for their work... They are
good value for money in terms of patient safety, quality of
service and efficiency, yet nurse specialists struggle to
demonstrate this to executive boards that want to see a
return on their investment.
Leary, A. Proving your worth Nursing
Standard, vol 25 no 31, 2011.

26. From our research, we have concluded that MS nurses,
supported by the rest of the MS community need to raise
their profile. The case for their services is strong, but hard
evidence to support this is often lacking. MS nurses must
develop the skills and confidence to record, analyse and
demonstrate their impact, and use this information to
develop material to influence commissioners, both locally
and nationally.
Mynors, G and Perman, S. Defining the value
of MS specialist nurses, MS Trust 2012

27. 1. To provide support for the evaluation of four MS specialist nurse
services over one year
2. To identify the organisational and individual skills and resources
required to undertake service evaluation and to seek to build these
in the nurse teams involved
3. To produce reports on MSSN services for key commissioning and
management audiences in each of the four locations
4. To explore the feasibility of identifying general Quality Indicators
and KPIs for MSSN services
5. To explore the feasibility of developing general tools for data
collection for MSSN service evaluation, including a patient
experience survey and a simple framework for capturing activity and
outcome data.

28. Timetable
preparation of project materals
recruitment strategy
Project Set up project launch Feb- early Mar
selection of teams
initial visits
form Advisory Group
Scoping review of existing materials Mar - May
draft QIs,KPIs
Advisory Group 1
24-25 May
Training two day training workshop
Sheffield
data collection
telephone and site support
Delivery learning and network support
May 12 - Mar 13
Advisory Group 2 (?Autumn)
development of reporting template
Reporting support for completion and collation of final reports Mar - Apr 13
Advisory Group 3
reports for key local audiences
Summary and Guide creation of user guide for MSN service evaluation May 13
reflection and process evaluation
Dissemination communication to wider community of interest May -June 13
next steps

29. GEMSS data collection tools