MS Forward View:a consensus for the future of MS services

Amy BowenDirector of Service Development

6 November 2016

Goal: report and plan for piloting options this time next year

MS Forward View Advisory Group

MS Advisory Group

MS Forward View Lay Forum

Amy, Pia and Caroline

MS Forward View – our aim

To identify the priority actions needed across the MS sector to enable MS services to deliver efficient, effective and equitable services for everyone with MS, in the context of changing

treatment paradigms.

Stakeholder engagement

Practical Guide for England

Inputs and models of care

Reports onAdvanced MS and DMD provision

Funding flows

Reports and heat map of MSSN provison

Mapping

Consensus Statements

Projects and Education

Programmes

Analysis

Final report

- Workshops- Modelling- Case Studies

Interviews

Surveys

Final report

Consensus Statements

Projects and Education

Programmes

Reports onAdvanced MS and DMD provision

Practical Guide for England

Reports and heat map of MSSN provison

4 key challenges

1. People living with MS have diverse, inter-related needs that fluctuate and change over time.

2. MS services need to get the best value out of specialist resources

3. People with MS need good access to a full range of MS specialist health professionals to maximise the effectiveness of their care

4. MS services face systemic challenges to improving service quality and efficiency

1. People living with MS have diverse, inter-related needs that fluctuate and change over time.

Holistic model of MS care

People with progressive forms of MS have less input from MS teams

‘Let’s make MS Care Fair’ survey N = 1,857

In the past 12 months, have you been offered a care plan and/or care plan review for your healthcare?

7% 5%

83%

5% Yes, I have been offered a care plan

Yes, I have been offered a care plan review

No

I am not sure

2. People with MS need good access to a full range of MS specialist health professionals to maximise the effectiveness of their care

Mapping

The MS specialist nurse workforce has grown by 12% between 2014 and 2016

Scotland England Wales Northern Ireland

22

173

11 926

193

13 9

Change in WTE MS specialist nurses, 2014 to 2016

However, nearly two thirds of people with MS are still living in areas with ‘unsustainable’ nurse caseloads

Proportion of people with MS living in Health Boards / CCGs by level of MS specialist nurse provision

Access to DMDs

MS nurses tell us that there is a shortage of other services in many areas of the UK

Rehabilitation medicine consultants do not feel they are as involved as they should be

Source: Survey completed 80 rehabilitation medicine consultants for MS Forward View, March 2016

"People with MS are referred to me when they would be better off remaining under the care of a neurologist"

"People with MS are typically referred to us later in the course of their disability progression than is optimal"

"There is a need in our area for rehabilitation medicine consultants to get more involved in the care of people with MS"

2%

52%

66%

Rehabilitation medicine consultant survey results (n=61)

% agree or strongly agree

3. MS services need to get the best value out of specialist resources.

Even with no change in DMD indication, workload will continue to increase

978

212 290

1126

325433

Modeled workload for an MS caseload (starting with 358 pwMS)

20162020

UP 15%

UP 53% UP 49%

Specialist nurses are doing many non clinical tasks due to a lack of administrative support

Ordering blood tests for patients coming to DMD clinics

Liaising with ward / infusion suite to book beds/ chairs

Scheduling home visits

Liaising with homecare companies about DMDs

Preparing DMD prescriptions

Scheduling DMD monitoring appointments

Managing clinic capacity (e.g. reminding patients to come, filling empty slots)

Answering incoming calls about non-clinical matters (e.g. rearranging appointments)

Maintaining database of patients on caseload

Typing up nurse letters/reports

0% 20% 40% 60% 80% 100%

Who does what in your team? (n= 152 nurse teams)

Nurses only Shared Admin / support workers only

Out of 258 MS nurses, 60 are prescribers (23%) 19 MSSNs prescribe repeat DMDs (7%)

6045 37

21 19

What are MSSN nurse prescibers prescribing?

Multidisciplinary working

Clinical consensus

• Who should prescribe DMDs• Safe and practical monitoring regimes• Content and interval of reviews of disease activity• Criteria for starting, switching, stopping DMDs• Provision for follow-on support

4. MS services face systemic challenges to improving service quality and efficiency

Support for the consensus

MS Advisory Group

MS Forward View Lay Forum

What comes next

• Commitment to keep working together• Continuing the lay forum• Planning projects and exploring funding options• What you can do right now