1. Evolution of the MS Specialist Nurse Role

2. Life up to 1997 for UK MS Specialist Nurses 12-15 MS nurses in post Each nurse covered an overwhelming geographical area Increasing numbers of patients prescribed DMTs (Avonex or Betaferon) led to the appointment of more MS Nurses Financial constraints limited the number of patients prescribed treatment Patients on treatment were regarded as the ‘chosen few’

3. No guidelines or protocols on what was considered best practice for people with MS (MS Society produced the first in 1997) Poor definitions, variable standards, and no regulation Some Specialist Nurses had no further or formal education in the role Proliferation in numbers and titles Confusion in terms used and roles performed Lack of knowledge and understanding of the role

4. MS Nurse Specialists MS Specialist Nurses are experts in nursing and the specialist requirements of patients with complex health problems Patients want specialist nurses to meet their special health needs MS nurses are able to provide regular and ongoing assessment and support that is not provided traditionally within the medical model

5. MS Nursing Goals “To assist clients/patients in preventing and resolving illness experiences and promoting wellness in the presence or absence of disease” (Lyon 1990) Other nurses do this but Specialist Nurses assess more specific and specialist needs of the patient Promote wellness approach and coach patients to live healthily throughout the disease trajectory

6. Overview of MS nurse role Clinical expert Consultant Educator Researcher Professional Co-ordinator UKMSSNA/RCN/MS Trust MS Nursing the Way Forward 2001

7. Benefits Timely access to services and information Reduction in hospital admissions Facilitate smooth hospital discharge Optimises multidisciplinary / holistic approach Innovative patient services Facilitates implementation of national guidelines Evidence based practice delivery

8. Developing a patient centred service What patients want from their Specialist Nurse: –Someone to share their health problems or concerns with –Someone to listen to their story –Someone to be with them on their journey –Someone who has gone through a similar experience to them or has an excellent knowledge of what they are going through. –Someone at hand or on call (Castledine 2007, unpublished)

9. Changes over the last decade There are now around 250 UK MS Nurses More strategic approach to new posts Acceptance of the MS Specialist Nurse as a mainstay of MS management Emergence of models within MS Nursing with a clearer definition of the role Development of the Knowledge, Skills and Framework (KSF)

10. Emergence of the UKMSSNA Links to the International arena Government interest in MS has developed Evolution of the role has enabled those with MS to enjoy a higher quality of life ABPI Guidelines

11. MS Nurses now support thousands of people with MS, including those on treatments Responsiveness and accessibility of MS Nursing Services are highly valued The role has expanded to include MS nursing research, publication, and service development

12. MS Nurses as educators Education is an important part of MS Nursing including: Patients and their families Carers Health and Social Care professionals Student nurses Employers

13. What does the MS Nurse Do? (UKMSSNA, MST and RCN) "Empower those affected by MS by providing information, support and advice about the condition from time of diagnosis and throughout the disease spectrum. The MS specialist nurse is pivotal in providing a greater understanding of the condition, and by adopting an holistic, collaborative and co-ordinated approach can help those individuals, where possible, reach their goals of self management. The role also involves acting as a consultant and educational resource for staff striving towards greater awareness and knowledge of MS in the health and social arena." MS Trust, UK MS Specialist Nurse Association, Royal College of Nursing. Specialist nursing in MS – the way forward: the key elements for developing MS specialist nurse services in the UK. MS Trust, April 2001.

14. Future Challenges Will we maintain our exclusivity of caring just for those affected by MS? Plethora of drugs - will oral meds influence the need for our role? Will it shift what we currently do? Need to understand the ongoing changes and advances in immunology and be able to explain this to our patients What about progressive MS and those severely disabled?

15. Will Specialist Nurses require a Degree level education to practice? Quality is back! How do we prove that our interventions have improved outcomes for patients? Specialist Nurse role in individualised care budgets for patients? How do we match our service to QUIP and CQUIN goals? Surviving the constraints of the current economic climate and the changes within the NHS?

16. Today Need to know not only what CNSs do, but what impact their performance has on clinical and economic outcomes. –A competency framework specifically for the MS specialist has been developed which describes the activities and characteristics required for safe and effective performance. What do health care organisations want from their specialist nurses? Business plans, audits, evaluations and reports relating to the organisation’s beliefs, values, targets and objectives. MS Trust, 2009. A competency framework for MS Services

17. Today Measuring role activities only is insufficient Clinical outcomes must be measured Unique contributions to client/patient care outcomes and cost effectiveness