Government initiativesGovernment initiatives

relevant to MSrelevant to MS

Amy Bowen, RN MA

MS Trust

4th October 2012

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 PwMSand 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

DH RiskDH Risk--sharing Schemesharing 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 txwith Interferons)

DH RiskDH Risk--sharing Schemesharing 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

Est. treated rate of progression

Nat. history rate of progression(observational to 25 years)

Time(to 99 years)

Dis

ab

ilit

y (

as

ED

SS

)

Treatment stopson average at 9.9 years

End of analysisat 20 years

5 year trial data stop

2 year RCT data stop

12 year clinical data

DH Risk-sharing Scheme

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

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

NCBChair: Malcolm Grant

North of England London South of EnglandMidlands and East

Local Area Team 1 LAT 3LAT 2

CCG

E&NH

CCG

> 50 LATs nationally

Some specialised

commissioning

Board must have:

RN

Secondary Care Specialist

Governance Lead (lay)

PPI Champion (lay)

Plus GPs, D of Nursing,

CFO,D of Commissioning

220 CCGs nationally

≥ 3CCGs per LAT

Impact and Value of MS Specialist

Nursing

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 totake 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

Pre Dx

Dx Stable Pattern of

progression

Activity pattern per patientA

ctivity

Time

\\ \\

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.

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

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

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?

Outcomes, outcomes, outcomes

• NHS Outcomes Framework

• QIPP – Quality, Innovation, Productivity, Prevention

• CQUIN – Commissioning for Quality and Innovation -£££

• Year of Care

• Pathways

NHS Outcomes framework domains

Different perspectives on value of MS nurse services (illustrative)

Measurement and

analysis of inputs against

outcomes

Audience What might they compare?

Commissioners of

service

Cost of commissioning service

vs. Outcomes

Managers of service

Cost of providing service vs. income derived from service,

reduction in other costs and other

value created

Patients and carers

Cost of receiving service vs. Outcomes

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

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.

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

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.

Timetable

Project Set up

preparation of project materals

recruitment strategy

project launchFeb- early Mar

Scoping

selection of teams

initial visits

form Advisory Group

review of existing materials

draft QIs,KPIs

Advisory Group 1

Mar - May

Training two day training workshop24-25 May

Sheffield

Delivery

data collection

telephone and site support

learning and network support

Advisory Group 2 (?Autumn)

May 12 - Mar 13

Reportingdevelopment of reporting template

support for completion and collation of final reports

Advisory Group 3 Mar - Apr 13

Summary and Guidereports for key local audiences

creation of user guide for MSN service evaluation May 13

Disseminationreflection and process evaluation

communication to wider community of interest

next stepsMay -June 13

GEMSS data collection tools