Working together to Share good practice

1. Midland MS Nurse Group Working together to Share good practice

2. In Association With

4. Setting up a Multiple Sclerosis Specialist Nursing Service. Midland MS Nurse Group 2004

5. Introduction It is now is an exciting time to take on the role of multiple sclerosis specialist nurse. The speciality is in a dynamic phase and is growing rapidly. There have been numerous advances and initiatives which shape MS nursing, including the DoH Risk Sharing Scheme, Competency Framework, development of the UKMSSNA, and UK Multiple Sclerosis Clinical Management Manual. In addition the NICE guidelines on the management of MS (NICE 2003) have set the standards for MS services, and specialist nurses will be pivotal in implementing and monitoring their recommendations. Invariably the MS nurse specialist role will be challenging, and there may be obstacles to overcome. It may seem daunting to start a service from scratch, even though there is a great deal of advice and support available.

6. Introduction (Cont) This CD Rom is intended to ease the transition for new MS specialist nurses, by collating the experience and expertise of specialist nurses within the Midland MS Nurse Group. The ethos of this group is to share and encourage best practice, and provide support for MS nurses via networking – it is anticipated that this CD Rom will achieve this on a wider scale. We have a wealth of collective experience in establishing MS nursing services in both hospital and community settings, and our aim is to prevent wasted time and energy “reinventing the wheel”. We hope that others can learn from our mistakes and successes, and consequently feel better prepared and supported in their new role.

7. Using the CD Rom The CD Rom is designed as a resource to be accessed in sections, and not read in it’s entirety. For this reason there is some overlap between sections. Some sections (e.g. role of the MS nurse specialist) can be used as a “stand alone” teaching session, and other sections (1 and 2) have notes pages attached. Sample documentation and basic teaching session slides are also included. Please do not feel overwhelmed by the amount of information contained within the CD – remember it has been compiled by experienced MS nurses. You will not be expected to develop your service overnight, it will evolve gradually alongside your skills and confidence.

8. Contents Introduction Section 1:Role of the MS Nurse Section 2: Getting Started Section 3: Time Management / Caseload Section 4: Networking Section 5: Documentation Section 6: Working in the Community Section 7: Professional Development Section 8: Teaching /Training Section 9: Evaluation of Services Section 10: Top Tips from MS Nurses • Section 11: References Appendix 1: Sample MS Teaching Session Appendix 2: Sample Documentation

9. Section One Role of The Multiple Sclerosis Specialist Nurse

10. Evolution of the MS Nurse • “To empower those affected by MS by providing information, support and advice about their condition from the time of diagnosis and throughout the disease spectrum. The MS Clinical Nurse Specialist 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 range” (UKMSSNA 2001)

11. Evolution of the MS Nurse It is acknowledged that: • People with MS have had to endure a fragmented NHS system for years • There is a wide variation in standards of service • People with MS have to piece together the picture for themselves • There are inequalities in treatments and poor services

12. Evolution of the MS Nurse • 1994: first MS nurse appointed • 2000: approximately 90 nurses Introduction of Specialist Practitioner in MS Degree course at University of Central England, Birmingham • 2001: Key Elements for Developing MS Specialist Nurse Services in the UK • 2002: DOH Risk Sharing Scheme was announced • Approximately 120 MS nurses in post • Estimated that there is a need for at least 300 to ensure MS patients have the same access to a specialist nurse that is available to people with cancer • Formation of UK MS Specialist Nurse Association (UKMSSNA) • International Certification Examination for nurses caring for people with MS

13. Evolution of the MS Nurse • 2003: • Publication of the Competencies Document for MS Specialist Nurses • NICE Clinical Guidelines • Launch of United Kingdom Care Plan for People with MS

14. What Are the Dimensions of the MS Specialist Nurse Role? • Specialist knowledge of MS • Physical assessment and care in MS • Psychological assessment and care in MS • Social assessment and care in MS • Coordinating and facilitating care in MS • Working with other professionals • Developing and evaluating MS services

15. Dimensions of Specialist MS Nurse Role • Clinical expert • Consultant • Educator • Researcher • Professional • United Kingdom Specialist Nurse Association (2001)

16. Clinical Expert • Specialist and up to date knowledge • Direct care in a variety of settings • Initiate and run nurse led clinics • Provide telephone advice • Support other health care professionals • Identify areas of improvement and lead service development • Create service around needs of pwMS

17. Educator • Initiate and participate in educational programmes for pwMS and their families (e.g. newly diagnosed courses, symptom management, fatigue management and so on) • Initiate and participate in educational programmes for other HCP, social services, voluntary organisations etc • Promote the health promotion and a wellness approach for people with MS • Educational sessions on neurology wards and other hospital settings • Educate in the community setting • Lecture at conferences, study days etc • Publish in journals

18. What Is Available to Support the Nurse Educationally?(See Also Section 7 Professional Development) • MS Trust provide: • Regional and national study days and conference • Librarian service (literature searches, highlight up to date and pertinent literature) • Andrew Previtte bursary for educational activity or new initiatives • Educational Material • Regional networking groups (eg the midlands model) • MS pathway as part of the clinical nursing studies degree (UCE, Birmingham) • Diploma in MS nursing (Leeds University) • Competencies for MS nurses • Learning needs assessment (Kings College) • UK MS care plan-care across the disease trajectory

19. Consultant • Offer expert advice and support both nationally and internationally • Member of advisory bodies-play pivotal role • Promote awareness of MS and MS nursing through the media • Work closely with voluntary societies

20. Researcher • Disseminate up to date research findings • Initiate and/or co operate with colleagues in research into MS nursing • Identify areas in nursing practice from which clear clinical questions can be formulated • Ensure clinical practice is evidence- based

21. What directs the care given by MS Specialist Nurses?

22. (MS society care standards 2002) The diagnostic phase Certain and clear diagnosis Accurate support at diagnosis Access to information Continuing education Needs of People With MS

23. Needs of People With a Disability • To be respected and understood by the professionals providing a service for them • To be given an accurate diagnosis and prognosis sensitively • To be involved in the planning and decision making about their care and services • Baker 1993

24. Disease Modifying Drug Therapies: the DOH Risk Sharing Plan • Announced by DOH February 2002 • DOH concerned with legal threat from people with MS • DOH aware of difficulty over cost efficacy analysis of drugs for long term conditions • Drug has to comply with cost per QUALY at 20 year framework as per NICE model • Aims to have 10,000 pts on product by end 2003 • Monitor for 10 years • Companies reduce price if the outcomes are not delivered

25. NICE Guidelines on Management of MS • Commissioned in 2000 • Led by Royal Society of Physicians and Chartered Society of Physiotherapists • Draft available for comment Jan 2003 • Published Nov 2003, full document available Jan 2004

26. National Service Framework-Long Term Conditions (2005) • Integrated health and social care • Promotion of the ‘expert patient’ • Promotion of seamless care • Adoption of an interdisciplinary approach • Equitable services • Symptom management • Assistive devices and community equipment • Welfare, housing, work, transport, leisure • Self referral to specialist services

27. National Service Framework for Long Term Conditions 2005 • Has a neurological focus with an emphasis on epilepsy, MS, PD, MND, spinal injury and head injury • Concentrates on people of a working age • Government identified areas: rehabilitation, pain management, care and support at home, welfare benefits, employment • Principles: • Patient/user/carer centred • Social model • Realistic • Address inequalities

28. Section Two Getting Started

29. Getting Started • You have just started your new post as an multiple sclerosis specialist nurse. New post, new service. Where do you begin? Who do you contact? How are people going to contact or know about you and your service? • This section is designed to help answer initial queries and make getting started as easy as possible…

30. What Do We Want To Do? The next 6 slides will explore the following topics, offering useful tips and suggestions: • Have the physical and mental resources to do the job! • Supporting PWMS • Ensure good communication links • Develop services for PWMS • Audit/Data base/Research

31. Physical and Mental Resources (See notes page attached) Time management skills (see section 3 ‘Effective Time/caseload Management’) Knowledge of MS Assertiveness/negotiation skills Office, desk, phone, computer etc Clerical Support Clear Boundaries Clinical Supervision Find like minded people to be normal with (gossip,moan, go to lunch with…)

32. Communication Networks(See Notes Page Attached) • Develop links with ‘key players’ • Who are they? • What do they do for PWMS? • How can you work with them? Advertising is an effective method of ‘marketing your service. HOWEVER do not underestimate the power of advertising. Make sure you have an idea of the possible response rate

33. Communication Networks • How do you want people to communicate with you? • How do people want you to communicate with them? • Resources for communication - secretary, dictaphone, proforma for patient letters, answer phone, mobile phone, fax/email • You will need to establish how and where your clients and others can call to contact you. Establish where, who and how your messages will be dealt with. Allocate yourself time to answer your messages and be realistic with your message. • For example: “you are through to Joe Bloggs the MS specialist nurse for south and west. Please leave a message with your contact details and I will call you back. Please note I may not be able to return your call on the same day.”

34. Databases/audit/research • Do you intend keeping a database? • Your own system • Existing data base • Is it your role to input data? • What info do you want from your data? • Personal details • Symptoms • Relapses • Medication • MDT • Clinic/home visits • Disability/QOL scale • What are you going to use this information for?

35. Service Development • You represent PWMS • People will look to you for guidance and comment about what PWMS need • You have POWER and INFLUENCE • Need to be able to identify, quantify and make explicit gaps and inequalities in services for PWMS • Are you ready to get POLITICAL? • Build relationships with people in high places • Get onto relevant committees • Begin to understand the language they use

36. Support for PWMS • Is your role to support all PWMS? • Do people know how to refer to you? • Don’t open the flood gates until you’re ready! • How are you seeing patients? • Home visits • Clinics • Groups • How many PWMS could be in your case load? The tracking of notes on existing people with MS will aid identification of your practice population. • How will you prioritise your referrals? • Negotiate at the beginning of each interaction what you can provide/not provide. Manage expectations!

37. How Can We Juggle Everything…and Stay Sane!!! • It is often our expectations of ourselves which causes the most stress: the discrepancy between what we would like to do and what we can realistically do! • Give yourself a realistic induction period. A well established service will be a great benefit as you develop the service. • Allow time to get acquainted with local policies/procedures. These may need adapting to fit your service. • Keep up to date with statutory training and key aspects of care. This can be missed when you are working as a lone practitioner.

38. Section Three Effective Time / Caseload Management

39. How Can We Juggle Everything…and Stay Sane!!! It is often our expectations of ourselves which cause us the most stress: The discrepancy between what we would like to do and what we can realistically do! • Administration • Get a secretary who can: • Deal with others • Field calls • Screen all mail • Book all patient appointments • Type clinic letters • Plan your day

40. Administration • Keep your desk tidy • Put a clock where you can see it • Allocate one day per week purely for administration purposes eg returning calls/paperwork • Consider working from home – no distractions

41. Clinics • Don’t overbook • Allow longer for new patient referrals (e.g. 1 hour new referrals and ½ hour review appointments) • Dictate letters after each patient review, when still fresh in your mind • Be strict on allocated time for each patient – don’t overrun

42. Careful Planning • Be conscious of time • Make a daily urgent and important list • Use a personal organiser • Allocate private / reading time • Set realistic deadlines • Plan calls in advance, make notes • Work on one job at a time

43. Meetings • Are they necessary? • Be ruthless with time and gracious with people • Fix meetings for times convenient to you • Meet in other peoples offices • Plan meetings with objectives and strict timing • Ensure meetings are arranged, refuse to see those who just turn up

44. Be Assertive • Delegate • Say no to people and tasks • Ask people why they have visited • Save small talk for outside of work

45. And Finally !!! Never Take Work Home With You

46. Section Four Networking

47. Networking • Networking is a dynamic process involving people prepared to communicate and share with others • Hughes 1999

48. Networking • Networking provides mutual support and collaboration that can, amongst many other things, encourage nurses to become increasingly proactive in their practice • Ward, N. Embrey, N. Lowndes, C. et al (2002)

49. Networking • Sharing information on practice supports quality improvement and promotes a culture of learning (DOH 2000)

50. Networking By networking you are identifying key players in your area of practice who can be accessed to improve your effectiveness in formulating the appropriate care for your patients.