The NHS “landscape” & implications to MSSN specialist services

1. The NHS “landscape” & implications to MSSN specialist services Or “Does anybody have any idea of what is going on?”

2. What do we know for certain ? • “The future will be more like today ……. …. and less like today, than you can ever imagine”

3. What do we know for certain ? • The NHS is no longer an institution but an overarching label • Population, politics & Post code lottery • Evolution of MS care is fast • Patients will always need nurses • People with MS will always need specialist nurses until the cure is found

4. What else is pretty certain? Strong evidence from surveys and case studies of the value that MS nurses bring to patients Neurologists unanimous valuing the role GPs are likely to want to maintain and even expand services provided they: Are rapidly accessible Integrate well with other community services Decrease, rather than increase, their workload Don’t add cost, and ideally release cash

5. The economic arguments for MS nurses are strong … and supported by economic research on specialist nurses in other specialties

6. Political imperatives • QIPP here to stay • Finite budgets • No clear tariffs • Minimal data and lack of understanding of value Remember: • Neurology remains under resourced

7. Defining the MS Specialist role - resources MS Specialists and the QIPP agenda The economic worth of the MS Specialist Caseload and activity Presenting the role to others

8. Quality Innovation Productivity Prevention MS Specialist Nurses & QIPP The complexity and unpredictability of MS and the rapidly evolving treatment options require highly specialist care for successful long term management. Poorly managed MS carries a significant socio-economic and emotional burden for all those involved. MS Specialist Nurses utilise their specialist knowledge and skills to deliver safe, effective, evidence based quality care

9. Quality Innovation Productivity Prevention Quality Expert specialist care responsive to varied and unpredictable clinical need. Management of complex and hidden disability, with an emphasis on partnership and self-management. Skilled family and psychological support tailored to particular issues encountered in MS. Up to date guidance and support to gain the best outcomes from treatment programmes. Specialist skills and education guided by comprehensive, nationally recognised competencies High-level telephone & e-mail consultation skills.

10. Quality Innovation Productivity Prevention Innovation Innovative use of local resources through collaborative working such as sports facilities, community centres. Bringing new skills in the care of people with MS. Initiation of strategies for self managing MS in community and home settings. Development of care pathways for rapid relapse management avoiding hospital admission. Safe virtual care and support

11. Quality Innovation Productivity Prevention Productivity Non medical prescribing High quality professional consultations which reduce/prevent unnecessary GP appointments and increase Neurologist capacity. Cost effective case management of whole episodes of care. Skilling of other Health and Social care professionals in managing MS care effectively in hospitals and the community. Fast-track specialist support/advice for GPs in urgent situations. Supporting knowledgeable self-management for people with MS and their carers. Facilitation of early return to work/remaining in work.

12. The economic arguments for MS nurses are strong

13. The quality arguments for MS nurses are strong Quotes from service users are a very powerful support to the economic argument when it is a “cost neutral”, “cost saving” or “cost benefit” outcome. Brokerage and rescuer roles are important aspects of quality.

14. The quality arguments for MS nurses are strong Autonomous 360˚ highly complex range of interventions, skills and clinical expertise Broker Rescuer Facilitative expert Cross boundary working Pivot for cohesive coordinated care Good return for the investment Leadership, Innovation and new boundaries

15. Stratifying your caseload • Numbers from research are at diagnosis, time is relevant for caseload • 15 years from diagnosis 58% have reached EDSS 4 • 7% of your caseload will be benign MS • 25% R/R on DMTs ↑ = 40 • 28% R/R no treatment

16. Your service • What is your caseload in relation to the population? • What actions / interventions are necessary at each stage of the patient’s disease journey? • What % of your time is clinical? • New to follow up ratios? • What tariff prices are paid or affected by your activities? • What evidence do you hold from your patient’s about what they value?

17. What can we offer the neurologist? • We can reach beyond the medical diagnosis of MS and enable neurologists to transfer the health implications of that diagnosis, and the management of them, to the nurse. • We can work with a “life model” that enhances the “medical model”. • We can ensure successful implementation of treatment decisions, and refer back when they are not working well • We can translate those “medical” decisions for people with MS into something meaningful to their everyday lives • We can make nursing treatment decisions that will support medical treatment decisions

18. What can we offer the neurologist? • We can inform and enlighten neurologists on the (existential) challenges their patients face in living with MS • We can ensure safe and skilled care in a smooth transition from the point of diagnosis and also ensure a smooth and safe transfer back when further neurologist intervention is needed • We can give neurologists increased capacity and efficiency to see more patients with MS knowing that others are safely monitored and cared for. • We can take responsibility with additional skills and knowledge that assures good and safe health outcomes without direct supervision from the neurologist

19. What can we offer the provider? Key areas to consider are risk (safety), productivity and quality. What would happen if you were not in post? • Evidence the risk and get sign up to that risk if they want to cut services • Evidence the productivity and get acknowledgement of discrete complex outcomes • Evidence the high quality of your service

20. What can we offer the provider? Lets take risk……….. • There is a safety risk to patients who are on current treatments if they have no correct surveillance and financial risk to this • There is an unscheduled care and re admission risk, and a financial risk to this • There is a safety risk in that this group is vulnerable to unpredictable serious events such as relapse, undetected depression, atypical infection, pressures sores (litigious territory) without expert monitoring • There is a social/economic risk without your expert intervention so prolonged periods out of work, family risk, inappropriate access to resources   • There is a protracted length of hospital stay risk if your support is not available

21. What can we offer the provider? ……….now take productivity • The capacity for your neurologist to sustain a healthy new to follow ratio and ensure safe care will be significantly compromised • Your GP’s will have a substantial rise in consultations and re referrals back to the neurologist if you are not there (has the governance process ensured they are fully informed of this risk?) • Your planned admissions (income generating) will be under threat as who will manage that service • Your patients are likely to be out of work or unable to return to work as efficiently without you in post to manage relapses or prevent secondary complications

22. What can we offer the provider? ……….finally quality • Complaints will increase • The current service will drop into the poor performers (the MS Trust new map may help with this) • People with MS risk experiencing poor care outcomes and lack of access to treatments that will enable them to remain active, employed etc • People with MS risk developing complications and further health problems • Generalist health and social care providers will lack necessary expertise to manage complex aspects of MS • Generalist health and social care professionals will be unable to identify the entry and exit criteria for the new treatments in MS so patients will have a poor choice

23. Commissioning pathway for MS

24. Patient outcomes pathway for MS