contents working together to share good practice
TRANSCRIPT
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Working together to
Share good practice
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In Association With
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Setting up a Multiple Sclerosis Specialist Nursing Service.
Midland MS Nurse Group
2004
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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.
Introduction
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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.
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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.
Contents• Appendix 2: Sample Documentation
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• 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
• Appendix 1: Sample MS Teaching Session
Introduction
• Section 11: References
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Section One
Role of The Multiple Sclerosis Specialist
Nurse
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• “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)
Evolution of the MS Nurse
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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
Evolution of the MS Nurse
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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
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• 2003:– Publication of the Competencies Document for
MS Specialist Nurses– NICE Clinical Guidelines– Launch of United Kingdom Care Plan for
People with MS
Evolution of the MS Nurse
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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
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Dimensions of Specialist MS Nurse Role
• Clinical expert• Consultant• Educator• Researcher• Professional
» United Kingdom Specialist Nurse Association (2001)
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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
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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
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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
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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
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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
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What directs the care given by MS Specialist Nurses?
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Needs of People With MS
• (MS society care standards 2002)
• The diagnostic phase– Certain and clear
diagnosis– Accurate support at
diagnosis– Access to
information– Continuing
education
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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
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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
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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
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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
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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
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Section Two
Getting Started
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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…
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What Do We Want To Do?
The next 6 slides will explore the followingtopics, 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
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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…)
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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 ‘marketingyour service. HOWEVER do not underestimate the power of advertising. Make sure you have an idea of the possible response rate
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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.”
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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?
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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
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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!
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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.
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Section Three
Effective Time / Caseload Management
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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
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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
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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
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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
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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
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Be Assertive
• Delegate• Say no to people and tasks• Ask people why they have visited• Save small talk for outside of work
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And Finally !!!
Never Take Work Home With You
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Section Four
Networking
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• Networking is a dynamic process involving people prepared to communicate and share with others
» Hughes 1999
Networking
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• 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)
Networking
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• Sharing information on practice supports quality improvement and promotes a culture of learning
(DOH 2000)
Networking
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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.
Networking
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Why Network ?
• Good working relationships promote collaborative and effective care
• To share new research findings and modify to advance practice
• To map services within your locality e.g. to know who, when, where & how to refer clients appropriately
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• Reduce feelings of isolation, stress and burnout • Peer support• Share relevant information• Acquire clinical supervision in a supportive
environment• Regional platform to air views, ideas or concerns• Forum for sharing best practice
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Local Networks
• Neurologists /Medical teams /GP’s /Rehab Team.• Nursing team : Neurological ward staff, Outpatient
staff, Clinical nurse specialists, District nurses, Continence nurse.
• Physiotherapy • Occupational Therapists
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• SALT• Dieticians• Pain team• Clinical Psychologists• Counselling services e.g. RELATE • Social worker /Social services• Respite /Palliative Care• Urologists • Sexual therapists
It is vital to network with healthcare professionals in hospital, outpatients, community based settings
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• Equipment stores • Visual impairment centres• Disability services e.g. DIAL • Sports & leisure facilities suitable for PWMS
Other Useful Networks
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Regional
• Regional MS nurse support group• Pharmaceutical representatives• Specialist assessment/treatment centres : disabled
driving, functional electrical stimulation,
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National /International
• UK MS Specialist Nurse Association• British Association of Neuroscience Nurses• Attend national /international conferences• Keep up to date with latest research• Join national MS groups to obtain latest journals• Correspond with other MS nurses via e-mail
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Voluntary/charitable Services
• MS society local branches & national centre• MS Therapy Centre• MS Trust • Citizens Advice Bureau• Disablement information & advice line (DIAL)
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• Volunteer bureau• RELATE• Disability law service• Motability
Voluntary/charitable Services
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Useful Contact Numbers• MS Society 020 84380700 (they have a directory of support
organisations)• MS Trust 01462 476700• MS Resource Centre (to find local therapy Centre) 0800 7830518• Carer’s UK 0808 808 7777• Continence Foundation 020 7404 6875• Dial UK 01302 310123• Disability Law Service 020 78318031• Disability, pregnancy& parenthood 0800 0184730 • Motability Helpline 01279 635666• Radar 020 7250 3222• Relate 01788 573241
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Section Five
Documentation(see also sample documentation appendix 2)
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Service Leaflet
• Production of a service leaflet is essential when establishing a new service
• Should contain:– Philosophy of service– Criteria for referral– How to refer– Service provision– Times of service – Contact details
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Service Leaflet (2)
• Should be aimed at client, their family, statutory and voluntary service providers and stakeholders
• Check with employing authority re: logo, standard design, costing, process for ratification
• May need to provide the leaflet in various mediums to ensure equitable service provision for clients with;– Visual impairment,
– Deaf or hearing impaired
– Those in the linguistic minority
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Business Cards
• Useful to hand to clients and other service providers
• Essential the font is large enough to be read by partially sighted
• Ensure format meets with employers requirements
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Referral Form
• Generate ideas for this by reviewing existing referral forms from various service providers
• Design it to capture information for audit purposes (length of time between referral and time seen and so on)
• It should contain:– Criteria for referral– Clause stating inappropriate clients will not
automatically be accepted
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Correspondence letters
• Formulate templates for all correspondence letters• Letters you may want to design in this way
include:– Acknowledgement letter of referral to the service and
how long it will be until contact is made
– GP letter informing them of clients referral to service and outline of service provision
– Waiting list letter
– Appointment letter
– Outcomes following care intervention with client, send to relevant service providers and referring agent
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Client Records
• Review others already used by other specialist nurses
• The nursing records you decide upon may contain:– Demographic details
– Past medical and surgical history
– Relevant past and current MS information
– Establish clients knowledge base
– How client manages symptoms
– Medication currently and previously used, allergies
– List of current service providers and contact details
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Client Records (2)
– Social, family and housing information– Benefits and employment– Transport utilised– Aids adaptations– Assessment covering physical, social,
psychological and emotional requirements– Care plan– Outcomes
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• Those currently in use are:– Guys neurological score
– MS impact scale
– Leeds quality of life measure
Measurement Tools
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Storage of Information Held on Clients
• All information has to be stored appropriately
– Locked filing cabinets within a locked department
– Ensure you are aware of employing authorities protocol regarding this
– Check on protocol regarding emailing and faxing client information
– Check on protocol regarding waste policy
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Section Six
Working in the Community
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Networking
To avoid feeling isolated, it is important to spend time building up good contacts within your locality. It is important to be aware of the differences between community and hospital nursing to improve the quality of care at the interface between community/general practice and hospital nursing.
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• Let your colleagues know what you are doing. Send copies of letters to GP, District Nurses and Consultants or any other relevant team members.
• Send copies of letters to patients, especially if they have cognitive problems as they may forget what you said
Communication
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• Meet your community-based colleagues and find out their referral criteria. If you can’t refer directly, find out why.
• Ask for a ‘cover note’ from your local consultants, so you can refer directly to other services.
Referrals
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Health and Safety Issues
• Look at your local ‘lone worker’ policy. If there isn’t one, ask to see ones used locally by district nurses and use them as a guide to develop your own.
• Carry a mobile phone
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Health and Safety Issues
• Attend personal safety training if it is available
• Always let someone know where you are going and what time you expect to be back
• Send a ‘confirmation of visit’ note to the patients GP or D/N before you visit. This way, if there are any potential problems, the GP or D/N will have time to warn you
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• Are you entitled to a lease/crown car scheme? Ask your finance or personnel dept
• Is your car insured for home visits? Do you have breakdown cover?
• Is equipment that you may have to leave in your car boot insured?
Transport Issues
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• Get a good A to Z of your area• If you have internet access, plan your route using
Mapquest, route finder etc, and keep a copy in the patients notes.
• Write down the mileage in the corner of your patient’s notes in case you forget to check on return visits
• Allow traveling time between appointments• Target specific geographical areas on certain days,
to avoid spending unnecessary time traveling
Transport Issues
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• Don’t suggest what the patients care package can’t support
• Don’t make unnecessary work for your colleagues such as district nurses
• Don’t assume anything
Finally
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Section Seven
Professional Professional DevelopmentDevelopment
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Professional Development
The formulation of a professional development plan is a crucial step in achieving the transition from “ novice” to “ expert ” specialist nurse.
Initially it should include realistic short and long term objectives which in time will provide a record of your achievements as an MS specialist nurse. Ideally it should be reviewed with your manager on a twice yearly basis.
This section is designed to assist in identifying your training needs and in accessing the relevant resources to ensure that your aims and objectives are adequately met.
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Educational Opportunities
Details of Relevant Courses and Training
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MS Trust Induction Course
. The MS Trust runs a one week residential induction course for health professionals specialising in caring for people with MS this runs several times a year and is a must for all new specialist nurses as it offers;
• An excellent programme covering all aspects of MS management
• The opportunity to share the experiences of established MS specialist nurses and gain first hand advice on setting up a new service.
• Degree level accreditation
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MS Trust Induction Course
• The opportunity to network and gain peer support from those also new to the post
Further details can be obtained from the MS trust, Spirella building, bridge road, Letchworth, SG6 4ET, e-mail: [email protected], website www.mstrust.org.uk/
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BSc (Hons) Clinical Nursing Studies MS Pathway
This is run at the University of Central England in Birmingham and is the only course of its kind in the UK. It consists of 3 modules designed to enable nurses and health and social care professionals to further their understanding of MS.
The modules can be undertaken independently or as part of a 2 year part - time degree programme leading to a BSc (Hons) in Clinical Nursing Studies and Specialist Practitioner Award
For further details contact Nicki Ward, Lecturer Practitioner in MS, programme leader, Tel no, 0121 331 6177 or e-mail [email protected]
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Professional Diploma In Multiple Sclerosis(Distance Learning)
• This Professional Diploma was developed by the MS Society and York NHS Trust
• Recognised qualification• Allows professionals to work at their own pace• For further information contact;The Centre AdministratorCentre for Community Neurological StudiesLeeds Metropolitan UniversityCalverley StLeedsLS1 3HE
Tel; 0113 283 5918 fax; 0113 283 3124Internet; http://www.lmu.ac.uk/hen/hs/cnsEmail; [email protected]
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Networking / Support
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Clinical Supervision
Clinical supervision offers the opportunity to develop and improve your clinical practice and can also be a valuable source of support
• Local MS nurse groups are an ideal forum for
group supervision and provides the opportunity to network, share experiences and gain peer support. Details of groups can be obtained from the MS Trust, Spirella Building, Bridge Road, Letchworth, SG6 4ET, e-mail: [email protected], website www.mstrust.org.uk.
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Clinical Supervision
• Individual supervision with a trained clinical supervisor – ask your manager for information
• Degree/ diploma modules in clinical supervision can provide you will the necessary skills to both receive and facilitate clinical supervision
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The UKMSSNA The UKMSSNA ( UK Multiple Sclerosis
Specialist Nurse Association). Membership includes MS specialist nurses and other health professionals working as MS key workers. Its main objectives are to;
• Act as a national resource and network for nurses to share knowledge, expertise and best practice about MS management
• Act as a voice for UK MS specialist nurses and allied professionals working as MS key workers
• To develop materials that will be of value to UK MS specialist nurses in clinical practice.
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The UKMSSNA
There is a section of the MS Trust website dedicated to the UKMSSNA which provides a forum for members to network. This can be accessed at; www.mstrust.org.uk/ukmssna
To obtain an application forms and membership details telephone 01462 476702 or e-mail [email protected]
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Developing Essential Skills
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Presentation Skills
These are essential to the role of the MS specialist nurse. Training to assist in development of presentation skills can be accessed via a number of sources e.g.
• Local trusts training & development department
• Pharmaceutical companies
• MS Trust - run workshops within their local / regional study days
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Computer/ Internet Skills These will be useful within many aspects of your work as a
MS nurse. Help, advice and training can be accessed at a number of sources including:
• The RCN library information service provide free IT skills sessions and a range of guides to aid in the development of computer skills
• Contact the IT department within your trust for training, help and advice
• University libraries provide sessions in both computer and internet training
• Most local colleges run computer training courses • ECDL (European computer driving licence) - a CD Rom
learning programme related to basic computer skills which can be obtained via many higher education centres.
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Funding
To successfully implement your professional development plan and address all your training / educational needs, adequate funding is essential and is available from numerous sources:
• Pharmaceutical companies• MS Society• The Andrew Previtte bursary fund for study leave
can be accessed via the MS trust• Directors of Nursing often hold bursary funds for
nurse education
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Competencies Framework for MS Specialist Nurses
This competency – based programme has been recently produced by the UKMSSNA. It recognises that MS nurses will develop from novice to expert within their roles and is designed to steer professional growth and development.
It enables the individual to see a clear structured
progression from the outset of what is required at every stage of the role and therefore provides an excellent framework for the planning and evaluation of personal and professional development. It is recommended that competencies are reviewed between the specialist nurse and his/her manager twice yearly to facilitate this process.
For further details contact; www.mstrust.org.uk/ukmssna
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Section Eight
Teaching / Training(see appendix 1 sample MS teaching
session)
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Why Training Is Necessary• ‘As educator, the MS specialist nurse must be able
to: participate in educational programs on MS for the multidisciplinary team, primary care groups, trusts, MS charities, professional organizations and government bodies’.
(Specialist nursing in MS – the way forward. The key elements for developing MS specialist nurse services in the UK. April 2001. UKMMSNA, RCN and MSRT).
MSSN’s must also be able to:• Develop the knowledge base of other Health Care
Professionals
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Why Training Is Necessary
• Promote the role of the nurse
• Share information and learning from local, national and international conferences
• Ensure patient education strategies are based on Health Promotion models
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What Training Involves
• Teaching individuals – for example, a patient newly prescribed disease-modifying therapy how to self inject.
• Teaching in small groups – for example ‘getting to grips courses’ for newly diagnosed patients.
• Formal presentations – for example, informing the multidisciplinary team about your role.
• Lectures to large groups – for example, presenting at conferences and formal teaching sessions.
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Preparation• Find out who your audience will be and their level
of knowledge. Different groups have different training needs. For example, GP’s may want to know how you can improve the interface between primary and secondary care, members of the MDT may want to know how you accept referrals, and nurses may want to know how to care for patients with MS more effectively.
• Clarify your own and the learners objectives
• Define your objectives – to educate, entertain, persuade or explain
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Preparation• Research the subject, use a variety of up to date
material. The MS Trust will be able help with literature searches
• See if anybody else has already prepared a presentation on the subject – don’t reinvent the wheel
• Don’t underestimate the amount of time it takes to prepare a good presentation
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Before Starting
• Practice your timing and write a teaching plan to include times
• Arrive early to set up and make sure you know how the equipment works
• If using Powerpoint, make sure you have a backup plan in case of technical problems (e.g. bring acetates as well)
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Breaking the Ice
• Your opening is vital. Tell them who you are, even if they have already been told. Tell them what you will talk about. Keep it punchy, confident and simple.
• Introductions – take quick notes when learners introduce themselves with a view to identifying their learning needs.
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During Training
• Know your subject inside out, but if you are asked a difficult question, acknowledge your limitations.
• Don’t wear anything that will distract your audience.
• Don’t go over your allotted time.
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• View training as an opportunity to improve general care for pwms
• The prospect of training may seem daunting, but cascade training is easier than you trying to see every patient yourself.
• Providing training and support can really increase the capacity for individual users and caregivers to participate in their own care.
• Practice your presentation skills. Think of the last really good and really bad speaker you saw. What did they do differently?
• PwMS may have attention problems or fatigue – keep it relevant, brief and to the point, and provide written information.
Finally
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• Do not state opinions as facts
• Check and provide references as necessary
• Think of the question that you hope nobody will ask and practice how you will answer it
• Use evaluation forms to modify and audit your performance
Finally
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Section Nine
Evaluation Of MS Evaluation Of MS ServicesServices
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Audit
• MS Specialist nurses must ensure time is given to audit services and evaluate the effectiveness of the role.
• Clinical Audit departments will assist in this role.• Identify a lead nurse for Audit in your area to
discuss ways forward. • Set realistic objectives for the service and
regularly review.• Setting standards is discussed in the ‘Key
Elements’ document (2001)
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Audit
• Audit will provide evidence for the need for the role of MS specialist nurse (UKMSSNA 2001)
• The benefits of the role are evident but audit is required to ensure standards keep improving.
• Audit is required on a regular basis. • An audit tool is provided and recommended for
use in all new MS specialists nurse posts
(UKMSSNA - key elements document page 30).
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Audit
• Audit is only useful if the data provided is used to develop services and implement change.
• Involve patients who use the services to ensure continuation and development of future services.
• Focus groups can be extremely effective tools for audit.
• Questionnaires sent to relevant patient groups will provide useful information which will help evaluate nurse led activities, for example newly diagnosed patients.
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Audit
• Disease modifying treatments need to be audited, MS specialist nurses often develop their own tools.
• The Midlands MS Nurse Group are happy to share their audit forms.
• Audit is required for the DOH risk-sharing scheme.
• Audit forms are also available for Methotrexate treated patients.
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• It is important for the continuation of funding and the improvement of the programme that all newly diagnosed courses are evaluated.
• The ‘getting to grips’ and ‘taking control’ models have evaluation tools that may be useful.
• Evaluation of symptom management days ensures that programmes are tailored to meet individuals needs.
Evaluation Of Patient Programmes
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• Document all activities and the proportion of time allocated.
• Monthly activity analysis and 6 monthly reports are a useful to reflect on the activities and can be used in clinical supervision.
• Analysis should include: figures for new referrals and those seen in clinics and home or ward visits.
• Include the number of phone calls (incoming and outgoing) meetings attended, annual leave and study leave.
• Diaries and record sheets are useful.
Activity Analysis
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Activity Analysis
• Record all teaching sessions - who for and the length of time. Evaluation forms are useful evidence.
• Include any courses involved in either facilitating or speaking for example newly diagnosed or symptom management courses.
• Record all clinical supervision sessions.• Record any work involving publication or articles
written.• Record any new initiatives involved in and the
outcomes following evaluation.
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Conclusions
• Useful audit tools already exist these can be adapted to meet your personal needs.
• Medical records, MS specialist nurse records and patient satisfaction questionnaires can be used effectively to provide data.
• Evaluation should reflect the multiple dimensions and context of the specialist nurses role (Humphris 1999)
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Section Ten
Top Tips From MS Nurses
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Top Tips• Need time out initially to establish and plan level of
service.• Allow time to meet with ‘key players’• Time management is essential• Learn to manage your diary to allow for urgent
problems / reading time/ administration• Clinical supervision is vital• May need to rewrite job description after 6 months• Tend to get a lot of ‘difficult’ cases referred initially
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• Where are the local toilets?• Beware of people’s pets!• Keep a low profile when starting out• Link with other MS nurses • Don’t be afraid to say there is nothing else you can
offer at the moment• Keep your data as you go along – retrospective is
never as accurate• Never underestimate the time you need for paper
work
Top Tips
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• Bring patient into clinic whenever possible.• Make friends with relevant secretaries- they are
often very supportive.• Carry a dicta phone - can do letters/reminders
between time.• Home visit - record AZ location for next visit. Use
internet for directions• Leave realistic message on answer phone/may
take a while to get back.• Set specific, measurable, achievable, realistic,
timely (SMART) objectives- don’t burnout.
Top Tips
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• You cannot be all things to all people
• Value yourself
• Empower other professionals with your
knowledge
• Keep a day free for urgent referrals
• Influence ‘higher bodies’ for MS service provision
• Don’t do it if someone else can
Top Tips
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• Set boundaries and manage expectations by explaining what you can and can’t do at the beginning of the consultation
• Don’t tread on toes – supplement not replace• Make friends with your continence advisor• Identify training officers in Social Services who
can help organise joint study days• Encourage colleagues to understand when you
need ‘catch up’ time
Top Tips
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• Learn to interact effectively with Pharmaceutical company representatives
• You don’t always need to pick up the phone – you are not an emergency service
• Only ask for what is reasonable• Pharmaceutical companies may be able to assist in
funding clerical support• Need to dispel the expectation that you should see
the same number of patients in clinic as medical staff
Top Tips
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• Stand up, meet people by the office door, if you don’t want them to stay
• Don’t be pressurised into acting before you have set up and planned your service
• Keep pestering for office equipment and clerical support
• Service can quickly become chaotic if you respond to all ‘crisis’ calls – need to keep time free for urgent cases
Top Tips
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• Try to estimate your work load – how many people can you realistically see in one week? What is feasible?
• 1st assessment may take approximately 1-1.5 hours and this generates a tremendous amount of paperwork
• Need to let people know what you do via annual report • Develop good contacts with community groups and
patient groups
• Find out about free disability/benefits/ counselling
advice services available locally
Top Tips
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• Negotiate how you are going to work with people – you have a say in this!
• Always ensure that the diagnosis of MS is secure e.g. hospital or GP records before assessment/home visit
• It is helpful to set up MDT meetings – good way to discuss and plan for PWMS, also to clarify roles and reduce duplication
Top Tips
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Section Eleven
References
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References• Department of Health (2000) The NHS Plan: a plan for
reform. London: Stationary Office• Department of Health (2002) Cost effective provision of
disease modifying therapies for people with Multiple Sclerosis. London. The Stationary Office
• Hughes, M. (1999) Group Clinical Supervision in the District Nursing Community. Br J Nursing. 4. 2. 90-93
• United Kingdom Multiple Sclerosis Specialist Nurse Association (2001) The Key Elements for Developing MS Specialist Nursing Services in the UK. Multiple Sclerosis (Research) Charitable Trust
• Ward, N. Embrey, N. Lowndes, C. et al (2002) Specialist Nurse Network Improves MS Practice. Nursing Times. 98(30) 34-36
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Appendix 1
MS Teaching
Session
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Multiple Sclerosis
An Overview
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MS Facts
• MS is the commonest cause of disability in young adults
• Approx 85,000 people in the UK have MS
• The cost to health and social services in the UK is estimated at £1.34 billion per annum
• Cost to the individual and their family is immeasurable
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Who does MS affect?
• It is usually diagnosed between the ages of 20 – 40
• More common in women (2:1)• Genetic predisposition (familial tendencies /
twin studies)• Incidence varies geographically i.e.with
latitude • More common in certain ethnic groups• More common in developed countries
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Contents
Twin studies
Clinical MS Plus MRI
Monozygotic 25% 35%
(identical)
Dizygotic 3% 12%
(non-identical)
Siblings 2%
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What causes MS?
Possible clues:
• Diet
• Climate
• Environment, ie soil , pollution etc
• Viruses
• Genetics
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What causes MS?
Most common theory:
• Genetic susceptibility
• Environmental Factors – most likely to be infectious agent
• Element of chance
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Anatomy & Physiology
• MS affects the CNS (ie brain & spinal cord)
• The CNS is protected by the blood brain barrier
• CNS consists of 2 main types of cells, glia and neurones
• Neurones receive, process and send information
• Most neurones are covered with a sheath of myelin
• Myelin acts as an insulator, speeding up nerve conduction
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The Nervous System
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Immunology
• Increasing evidence that MS is an auto - immune disease
• Auto-reactive T cells enter the CNS via the normally impenetrable blood brain barrier
• These T cells coordinate attack on the myelin sheath, secreting cytokines and activating macrophages
• Leads to an inflammatory response and characteristic MS lesions
• These lesion disrupt electrochemical conduction along the axon
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Contents
Courses / types of MS
• 10% benign
• 40% relapsing remitting
• 40% secondary progressive
• 10% primary progressive
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Contents
Prognosis in Multiple Sclerosis
• 2 year interval between the first and second relapses in relapsing remitting disease
• Took 7 years to reach EDSS grade 4• 15 years to need stick to walk• 29 years to reach EDSS of 7• Survival is estimated at 45 years (variable
studies)• Person spends approx 15 years in a
dependant state» Confavreux et al 1980
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Prognostic Indicators
Favourable• Females• Onset of disease prior to
35 years of age• Few lesions on MRI• Complete recovery after
first relapse• Sensory symptoms at
onset• Long interval to second
relapse
Unfavourable• Males• Older age at onset• Multiple lesions on
MRI• Residual deficits• Early cerebellar
symptoms• Short interval to
second relapse
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Signs and Symptoms
• Motor e.g. weak legs• Bladder disturbance• Spasticity• Spasms• Sensory disturbance
(tingling, pins and needles)
• Sexual dysfunction• Dysphagia• Tremor• Ataxia
• Eye movement disorders e.g.nystagmus
• Fatigue• Bowel dysfunction• Pain• Cognitive dysfunction• Optic neuritis• Depression• Dysarthria• Vertigo
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Symptoms
• No two people with MS will experience the same symptoms to the same degree
• Many of the symptoms of MS are “hidden” e.g. fatigue, pain
• Many symptoms are worsened by heat, fatigue, stress, infections
• Symptoms can fluctuate from day to day
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Pharmacological Treatments for MS
• Steroids
• Symptomatic treatments
• Disease modifying treatments
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Disease Modifying Treatments
• Beta interferon (Avonex, Rebif, Betaferon)
• Glatiramer Acetate (Copaxone)
• Methotrexate
• Mitoxantrone
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Current Research
• CAMS
• Campath
• Antegren
• Statins
• Stem cell transplants
• Myelin repair
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Other developments
• New MS Society Standards
• NICE guidelines for MS management
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Please Click on Sample Documentation to Access It
Appendix 2
Sample
Documentation
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Thank-you for watching
The Midland MS Nurse Group would like to thank Jason Green (Biogen Area Business Manager) for his hard work and support
with this project