Contents Moving Your MS Specialist Nursing Service Forward Midlands MS Nurse Group Nov 2005.

Contents Moving Your MS Specialist Nursing Service Forward Midlands MS Nurse Group Nov 2005

Contents This Program is Supported by an Educational Grant from

Contents

Introduction The role of the multiple sclerosis specialist nurse continues to be an exciting, challenging and ever changing role requiring multi-faceted clinical and professional skills. This CD Rom is a sequel to ‘Setting up a Multiple Sclerosis Specialist Nursing Service”. It is designed as a guide for those MS specialist nurses who have already established their service and are ready to further expand their knowledge, experience and clinical practice. The CD Rom explores some of the more intricate aspects of the specialist nurse role.

Contents Introduction The Midlands MS Nurse Group have a wealth of collective experiences in establishing and developing MS nursing services in both hospital and community settings. The ethos of the group continues to be to share and encourage best practice. The topics covered in this CD Rom are issues that we have become more involved with as our services have developed. Our aim as always is to prevent wasted time and energy by ‘reinventing the wheel’.

Contents Introduction This CD Rom contains 12 separate sections, each of which details a specific aspect of the MS Nurses role. The sections can be accessed in isolation if desired. Some of the sections also contain examples of sample documentation as appendices, references and a list of suggested further reading. This CD is intended to act as a guide to support your service development, it is not aimed to be a comprehensive tool.

Contents Section 1:Advancing your PracticeSection 1:Advancing your Practice Section 2:Business PlanningSection 2:Business Planning Section 3:Writing a ReportSection 3:Writing a Report Section 4:Undertaking Clinical AuditSection 4:Undertaking Clinical Audit Section 5:Developing a Directory of ServicesSection 5:Developing a Directory of Services Section 6:Getting PoliticalSection 6:Getting Political Section 7:Organising an Educational EventSection 7:Organising an Educational Event Section 8:Writing for PublicationSection 8:Writing for Publication Section 9:Integrated Care PathwaysSection 9:Integrated Care Pathways Introduction Section 11:Stress and BurnoutSection 11:Stress and Burnout Section 10:Setting up a Focus GroupSection 10:Setting up a Focus Group AppendicesAll Appendices & DocumentationAppendicesAll Appendices & Documentation

Contents Appendices Appendix 1:Draft Business PlanAppendix 1:Draft Business Plan Appendix 2:Organising an Educational Event DocumentationAppendix 2:Organising an Educational Event Documentation Appendix 3:Stress DocumentationAppendix 3:Stress Documentation

Contents Section 1 Advancing Your Practice

Contents Knowledge Knowledge is power and is essential when advancing your role Read, read and read again. Find a reputable journal and subscribe to it Ensure you are aware of up to date evidenced based MS practice-the MS Trust send out literature lists with ‘Way Ahead’, before you file it away, email them and ask for articles that are of interest to you

Contents Knowledge There is a need to be aware of professional issues that affect your practice Be strategically and politically aware-what are the key documents guiding your practice on both a local and national basis The MS Society have a section on their web site called ‘email alerts’ this is free of charge and is the most up to date service available for MS news. You need to register on line, once you have done this, emails arrive at your chosen address detailing up to the minute information regarding issues that affect the MS community. Knowledge is power!

Contents Key strategic papers you need to be aware of (1): 1. NICE Clinical Guideline 8. The management of Multiple Sclerosis in primary and secondary care (NICE 2004). 2. ABN Guidelines for administration of disease modifying treatments (ABN 2001). 3. The UK Multiple Sclerosis Clinical Management Manual. UKMSSNA (no date) 4. The Key Elements for Developing MS Specialist Nurse Services in the UK.(UKMSSNA, MS Trust, RCN 2001)

Contents Key strategic papers you need to be aware of (2): 5. Competencies for MS Specialist Nurses. (UKMSSNA, MS Trust, RCN 2003) 6. Developing MS Healthcare Standards. (MS Society and MS Professional Network 2002) 7. National service Framework for Long Term Conditions. (DH 2005)

Contents Key strategic papers you need to be aware of (3): 8. Case management competencies framework for the care of people with long term conditions DH 2005 9. Agenda for Change. Knowledge and Skills framework (DH 2004) 10.Supporting people with long term conditions: Liberating the talents of nurses who care for people with long term conditions (DH 2005)

Contents Become a reviewer for NICE guidelines As you are aware NICE is responsible for the development of national guidance on health technologies and clinical practice for the NHS. One part of the guidance development is the appraisal by various bodies, including nurses. This is a fantastic opportunity. If you want to get involved you can do so on behalf of the RCN and act as a reviewer. Look at the topics to be reviewed on www.nice.org.uk and if you are interested contact Caroline Rapu, project leader at caroline.rapu@rcn.org.uk indicating your area of speciality. www.nice.org.uk caroline.rapu@rcn.org.uk

Contents Education for you Specialist nurses are required to be educated to at least BSc level. Are you? If not investigate at your local university how you can achieve this qualification. Or email Nicki Ward, Lecturer Practitioner in MS on Nicki.Ward@uce.ac.uk She maybe able to provide you with the necessary informationNicki.Ward@uce.ac.uk There are lots of educational activities available but be selective, ask yourself what study days/conferences would be most beneficial to you at the current time and identify why

Contents Education for you Ask the MS Trust or MS Society if they need any volunteers to be members of groups that they may run e.g. the MS Trust have an educational committee that informs and supports their educational programme Speak to the pharmaceutical companies and ask if they are looking for nursing members on their advisory committee Contact one of the journals and ask them if they need any proof readers for articles that are submitted to them for publication. If you email the editor, they will point you in the right direction

Contents Educating others Run local study days aimed at people with MS. These are really satisfying to organise. Try half days at first to build your confidence (see section7) Organise study days on MS management for local health care professionals Run newly diagnosed courses for people with MS Ask your local university if they need any ‘visiting lecturers’ for their courses. This gives vital exposure to the academic world and provides great experience as well as looking good on your CV

Contents Educating others Be sure to have clear and realistic learning objectives to base your lecture/talk upon. Ensure you evaluate whether these objectives have been achieved Ensure you have advanced skills in powerpoint presentations, there are lots of courses available Entertain as well as educate during your presentations. Look at google.org.uk and look at the part marked images. This provides ideal pictures to support your verbal presentation

Contents Publishing your work Disseminate your knowledge by writing publications- you do not have to go to a national journal to do this. Why not write for your local Trust/PCT newsletter to start with. The MS Trust are also always looking for nurses to write for ‘Way Ahead’ Consider contacting the MS Society or Trust and ask them if they need someone to assist in writing any publications they are working on. When you are ready to write on a national level, send a brief summary of your ideas to the editor of a reputable journal and await their response (see section 8)

Contents Writing a report Produce an annual report detailing your service provision over the previous 12 month period. This is the time to really show off and let people know what you are doing/achieving For more practical advice on this, see section 3 on report writing in this CD Ensure this report is disseminated to the necessary people, the key players in your organisation.

Contents Audit Visit your Clinical Governance department and ask someone to help you design an audit which will result in you easily obtaining numbers. (i.e. how many patients seen etc) Audit the effectiveness of your role. What are the key areas of success, what are the areas that you still need to develop? See section 4 Audit your local MS service-ask patients and their families where they see the gaps as well as the successes Use the MS Society Standards of care on which to base your audit. This is an ideal way to measure your service against national guidelines

Contents SWOT analysis Following on from your audit use the SWOT analysis to help formulate your annual report and/or your business plan. SWOT allows a strategic approach to the planning of your MS service and is recognised by management in all sectors as a reliable tool It will provide you with a vision for your service over the next 12 months. The SWOT analysis allows you to examine/analyse your service objectively and asks you to look at its strengths, weaknesses, opportunities, threats (SWOT)

Contents SWOT For more details on SWOT analysis use the google resource on your internet and you will find a lot of relevant and helpful information regarding how to do this.

Contents Changing practice Always take time to consider who are the key people that the change will affect and involve them at the earliest time. Involve and value their input Remember to include service users (see section 10) Before you introduce change, read up on the principles of effective change management. Change can cause a great deal of unrest! Use your audit as a basis on which to implement change Plan how you will audit the effectiveness of the change that has occurred

Contents Knowledge and Skills Framework This is in its early stages of implementation, but it will be a leading strategy in the next few years. It is essential that you are familiar with it It will, in the future, guide your Individual Performance Review (IPR) or Professional Development Plan (PDRS) Your manager will use the 6 core dimensions within it and also 4-6 other specific dimensions appropriate to your particular post to guide you in the setting of your personal and professional objectives

Contents Knowledge and Skills Framework You will have to show that you are fully developed in regards to the KSF outline You will be required to keep a portfolio to show that you are meeting/working towards your specific objectives (look at the DH website for more details)

Contents Maintain a portfolio of evidence Definition of a Portfolio “…A private collection of evidence which demonstrates the continuous acquisition of skills, knowledge, attitude, understanding and achievements. It is both retrospective and prospective, as well as reflecting the current stages of development and activity of the individual” (Brown 1992)

Contents Why keep a portfolio? It acts as a record of professional and personal experience It contributes to meeting the Nursing & Midwifery Council (NMC) requirements for renewal of registration For marketing you for potential career opportunities when applying for a job It helps you identify personal goals and plan how these are to be achieved It is a tool to provide evidence of your advancing practice toward your KSF annual review Information from it can be transferred to a profile as a means of achieving accreditation of prior learning A way to support learning from practice

Contents Networking Set up a MS Interest group inviting local health care professionals interested in MS care. Encourage people to attend by organising influential speakers to present. Allow time for group interaction. Establish your own data base of healthcare practitioners who care for your patients. This will be invaluable Understand how to build leadership capability through strategic alliances and networking across disciplines, responsibilities and management levels.

Contents Influencing and inspiring others Ensure you are an active member of your regional MS Nurse group Put yourself forward to be a UKMSSNA committee member Speak to the 4 main pharmaceutical companies and ask if they have an advisory group you could join

Contents Important websites to advance your practice Department of Health www.dh.gov.ukwww.dh.gov.uk Health Services Journal www.hsj.co.ukwww.hsj.co.uk National Electronic Library for Health www.nelh.nhs.uk Nursing Times www.nursingtimes.netwww.nursingtimes.net NHS Health and Social Care Information Centre www.ic.nhs.ukwww.ic.nhs.uk NHS UK www.nhs.ukwww.nhs.uk Royal College of Nursing www.rcn.org.ukwww.rcn.org.uk

Contents Vision for the Future Develop your vision for your professional future as well as that of your service and then make plans of how you are going to get there Ensure you are aware of the future requirements of your service, how are you going to influence these?

Contents Top Tips Be adventurous, volunteer to teach on study days and to be a member of a key group (the patient council is a popular one at the moment) Keep an up to date portfolio, ensure you record all the activities you are involved in. Use a recognised template/format to maximise its effectiveness Seek out the influential people in your organisation, make their acquaintance. Tell them what you do, send them your annual report

Contents Top Tips Keep a notebook to hand and list all your key achievements as they happen. You may want to include: –Groups/committees you are a member of –Documents you have contributed to –Projects you have led/completed –An article you may have written for a local or national venture –Anything else you are proud of It is easy to forget some of these if you don’t record them

Contents Top Tips The MS Specialist Nurse post provides the individual with great variety and can have huge potential for improving the standards of care within the MS community. Advancing your practice is not difficult, but it can be very much left up to you to do this. There are fantastic opportunities within the MS world at the moment, so go for it!!!!!!!!

Contents References 1. NICE (2004) Multiple Sclerosis. National clinical guideline for diagnosis and management in primary secondary and care. Royal College of Physicians. London This is the full guideline detailing all the literature that was used during the formation of the document. Although you need to buy this, it is well worth it. For enquires regarding this, email: ncc-cc@rcplondon.ac.uk

Contents References 2. ABN (2001) Guidelines for the use of Beta Interferon’s and glatiramer acetate in multiple sclerosis. London: Association of British Neurologists. 3. Ward, N and Porter, B (no date) (eds) The United Kingdom Multiple Sclerosis Clinical Management Manual. Care across the disease trajectory. Serono Symposia International For details how to obtain this manual please email: admin@ukmssna.org.uk

Contents References 4. UKMSSNA, MS Trust, RCN (2001) The Key Elements for Developing MS Specialist Nurse Services in the UK. Multiple Sclerosis (Research) Trust. London 5. UKMSSNA, MS Trust, RCN (2003) Competencies for MS Specialist Nurses. Multiple Sclerosis (Research) Trust. London To obtain a copy of either of these documents phone 01462 476700

Contents References 6. MS Society and MS Professional Network (2002) Developing MS Healthcare Standards: evidence- based recommendations for service providers. MS Society: London This document is downloadable from: www.mssociety.org.uk www.mssociety.org.uk 7. Department of Health (2005) National service Framework for Long Term Conditions. DH: London To obtain a copy of this, visit www.dh.gov.uk

Contents References 8. NHS Modernisation Agency (2005) Case management competencies framework for the care of people with long term conditions DH: London For a copy of this document email: office@skillsforhealth.org.uk office@skillsforhealth.org.uk 9. DH (2004) Agenda for Change. London: DH For guidance surrounding this document please view www.dh.gov.uk www.dh.gov.uk The knowledge and skills framework can be viewed on this site also

Contents References 10. DH (2005) Supporting people with long term conditions: Liberating the talents of nurses who care for people with long term conditions. DH. London This document can be downloaded on www.dh.org.uk

Contents Section 2 Business Planning

Contents Business Planning As MS specialist nurses we are continually striving to develop the services we provide. Areas of improvement may be identified through clinical audit (see section 4).To advance and expand services it is necessary to understand and participate in the process of business planning. For a draft business plan see appendix 1.

Contents Key Points to the Business Planning Concept Stone (2002) suggests that before conducting a business plan, there are some key points to consider first:-

Contents Key Points to the Business Planning Concept 1.Understanding the business plan concept 2.Why you need a business plan 3.Setting basic objectives 4.Establishing the purpose 5.Why first impressions matter 6.Knowing who to involve 7.Obtaining staff input (Stone 2002)

Contents 1.Understanding the Business Planning Concept At the end of this information there is a list of relevant articles and books that may be useful, although this is not an exhaustive list. It is important that you understand the process of business planning before starting or involve people that have had experience. The process will be easier to follow if you understand it first.

Contents 2.Why You Need a Business Plan Planning enables us to be more prepared for changes Planning enables us to obtain approval and resources required for service development. It allows us to identify any weaknesses so that we can overcome them and our strengths so we can build upon them. It allows us to build on the importance of team working. Planning means we can monitor our progress and learn and plan for the future Planning will maximise our desired goals and objectives (particularly when looking at the NICE guidelines and the NSF).

Contents 2. Why You Need a Business Plan cont’ The York Health Economics Consortium (1993) suggests that business planning is managing change. “This involves thinking ahead; looking at the wider picture; monitoring the progress and being ‘in control’ rather than being overcome by events”

Contents 2. Why You Need a Business Plan cont’ For an effective business plan you need to: Establish the plan Implement the plan Control the plan

Contents 3.Setting Basic Objectives Be clear in your mind what your goals/objectives are. These may change as the process of planning develops. Keep your objectives simple and clear.

Contents 4. Establishing the Objective Preparation of a well structured business plan will not guarantee success. Lack of a structured business plan will almost certainly ensure failure. (Stone 2002)

Contents 5.Why First Impressions Matter Get the plan right first time as second chances are not always possible. Resubmission of plans may only be accepted on an annual basis. Ensure the language, words and content of the plan is readable and can be interpreted.

Contents 6. Knowing Who to Involve Get to know key people who have the knowledge and expertise to help achieve the plan. Involve key people who may be influential in your plan succeeding i.e. business and finance managers. Involve those who believe in your goal.

Contents 7. Obtaining Staff Input Involve all team members from the start of the plan. Brain storming sessions may prove worthwhile at the beginning. Work load should be distributed evenly throughout the team. Ensure involvement of people who are going to be beneficial in achieving the plan.

Contents Process of Business Planning Please see appendix 1 for layout of a business plan (taken from Business Planning – York Health Economics Consortium – 1993) The plan should also include:- Executive summary (see next slide) Contents page Appendices

Contents Executive Summary This is the most important aspect of the business plan. It is the last part to be written but will appear at the beginning of your plan. It needs to be interesting and well written to catch the readers eye.

Contents Executive Summary (continued) A business plan summary should not be more than one A4 sheet of paper and should include:- The business The team The proposal Why it will succeed What the rewards will be Identify major risks and how to minimise them What you want from the reader (Finch 2001)

Contents Further Reading Vestal, K. W. (1988) Writing a business plan. Nursing Economics,6(3):121-4 Earnhart, S. W. (1996) Same-day surgery manager. Here’s a template for writing a business plan Same Day Surgery 20(6):65-7 Eck, C. (2000) A strategic endeavour in business planning – an oncology perspective Seminars for Nurses Managers 8(2):70-5 (There is an exhaustive list of literature available on business planning)

Contents References Finch, B. (2001) How to write a business plan. Kogan Page Ltd, London. Stone, P. (2002) The ultimate business plan (2 nd Ed) How to books, Oxford. York Health Economics Consortium (1993) Using information in practice management: business planning. Charlesworth of Huddersfield, Yorkshire.

Contents Appendix 1 Please Click on Information Icon to Access It Draft Business Plan

Contents Section 3 Writing a Report

Contents Evaluating services Report writing is a valuable way of reflecting on developments in services provided for people with MS and professional and personal development Audit is an excellent way of evaluating services Involve the clinical audit department to undertake regular audit of services provided and promote development Evaluation should reflect the multiple dimensions and context of the nurse specialist role and the perspectives of stakeholders, consumers, peers other professionals and should inform effectiveness (UKMSSNA 2001)

Contents Objectives of report writing The report should identify the following from your role: Professional Achievements Clinical Activity – nurse led clinics, multidisciplinary clinics, ward and home visits, phone contacts, emails … Clinical Governance – All research and audit activities undertaken Education provided – patients, professionals… Management issues – objectives achieved, appraisal, any other achievements Future objectives - key areas for development

Contents Who do I send the report to? To get yourself known and to promote your service and developments we suggest as many of the following people as possible: Chief Executive of the Hospital Trust/PCT’s Direct line Manager Professional Head of Nursing – Neurosciences/PCT Clinical Director of Neurosciences/PCT Head of Division (Neurosciences) Consultant Neurologists or lead for MS Primary Care Trust Leads Others involved in service provision and development

Contents Professional development and achievements You may want to include: –All achievements in relation to previous objectives set –Any articles published, conference presentations nationally/locally or poster presentations –Gap Analysis undertaken –Mapping of services –Business case applications –Meetings strategically –Advisory boards of which you are a member –Outcomes from Focus Group on NICE/NSF

Contents Clinical Activity Analysis This can be charted for example every six months: January – Jun, July – December 2006, or annually from April The total number of patient reviews should be provided A basic example is provided in the next slide, this can be adapted to your own services

Contents

Discussion of Activity Analysis CLINICS – All Nurse Led or multi-disciplinary clinics if undertaken can be analysed in the following way: Newly Diagnosed Clinic Disease Modifying Therapy Clinic (DMT) – new patients seen - Screening for treatment DMT – follow up - for those on treatment Nurse-Led Symptom Management Clinic Fatigue/Pain Management Clinics Provide the Total number of patients seen in clinics Total number of phone contacts/emails Total number of home visits

Contents Patient Reviews This can include any other reviews you might undertake: Ward/Joint consultations/other hospitals/nursing homes…. Whilst every service is individualised these are just some examples: Palliative care reviews at hospice Community Rehabilitation team Group Psychology sessions

Contents Clinical Governance Some examples of what to include under this heading: Audit – An MS Audit is currently being looked into/will be undertaken in January …. Objectives are currently being set Standards have been written Questionnaires will be sent to patient in…. Data will be presented to the Clinical Governance Board (June) and NICE Implementation Group (September) Actions will be implemented by …. Relapse management is currently being benchmarked against published guidelines Results will be available in ….

Contents Research Involvement Examples for this section might include: We are currently participating in the following studies: Palliative care research project The BRIGHT study A regional MS Specialist project on ….. Other Projects I am involved in include: Re-writing Clinical Management Manual (UKMSSNA sub-group )

Contents Education provided Some examples might include…. Educational sessions that I have undertaken include… Overview of MS including patho-physiology, epidemiology, MS symptom management, relapse and DMT’s (Level 3) Palliative Care Module (Level 3) Facilitation and teaching on a symptom management course for patients and carers Fatigue Management course for patients Role of the MS Nurse to the Rehabilitation Team MS Service development/NICE guidelines for General Practitioners

Contents Management issues This will depend on who manages you and who you manage but some examples are: Currently we have 2 MS nurses in post, 1 currently funded through the Trust and 1 part-time funded through pharmaceutical monies Therefore, we need to secure this funding from PCT’s We need the 2nd post to be full-time funded therefore a business case is required. It is in process of being written. We need also to secure funding for a physiotherapist to complement MDT. A further business case is therefore required We require secretarial grade 3 input to assist the medical secretary Pharmaceutical money has been offered for 12 months

Contents Meetings attended Some examples of meetings you may have attended… I have attended the following meeting: Advisory Boards for …. (1 day) I attended 2 half day patient partnership meeting (previously the Patient Forum) NICE Guidelines meetings attended (2 days) National Service Framework Implementation Away Day Clinical Governance meetings (4 hours) UKMSSNA sub-group (1 day Birmingham) RCN meeting 2 days (London) MS Society meeting …branch (2 hours) MS Trust meeting (1day) Carers Association meeting (2 hours)

Contents Study undertaken I have attended the following study sessions: BSc programme 12 weeks module Consortium for MS Centres (4 days - date) UKMSSNA study day RCN Neuroscience Study Day (1 day - date) MS Certified Nurse study for exam (4 hours) Day spent with the Advanced Nurse Practitioner undertaking advanced neurological assessment and Lumbar Punctures

Contents Objectives for July - December Achieve funding for all posts Planned national conferences in September and October to prepare Complete research project - palliative care Re-write and revise protocol for relapse management Update data-base

Contents To conclude Report writing initially appears to be a lot of hard work and a bit of a paper exercise. However when you have achieved results, it’s well worthwhile. It acts as an audit tool in itself and helps you to analyse how far your service is moving forward. It is an excellent way of utilising critical reflection and is useful in life- long learning.

Contents Section 4 Undertaking Clinical Audit

Contents Introduction A key component of the MS Specialist Nurse role is ensuring that practice is developed in accordance with standards, policies and guidelines. One activity that has the potential to enhance practice is clinical audit. By measuring current practice in this way service deficiencies can be identified and addressed. “The MS Specialist Nurse should participate in clinical audit programmes, which embrace a multidisciplinary approach and address important quality issues that will improve both the patients’ experience and outcome.” UKMSSNA, RCN, MSRT (2001) Specialist nursing in MS – the way forward. The key elements for developing MS specialist nurse services in the UK. MSRT, Letchworth.

Contents What is a Clinical Audit? Clinical Audit is a ‘quality improvement process that seeks to improve patient care and outcomes through systematic review of care against explicit criteria and implementation of change. Aspects of the structure, processes and outcomes of care are selected and systematically evaluated against explicit criteria. Where indicated, changes are implemented at an individual,team or service level and further monitoring is used to confirm improvement in healthcare delivery’ NICE (2002). Principles for best practice in clinical audit. Radcliffe Medical Press, Oxon.

Contents Audit versus research Research and clinical audit have many similarities and often get confused. It is therefore crucial to confirm that clinical audit is the activity most suited to achieving your desires outcome. Research and audit do have similarities as they both involve; collecting and assessing information to achieve an objective, observing practice data analysis disseminating findings in presentations and reports

Contents Audit versus Research cont’ However ….. There are clear distinctions and the choice depends upon how much is already known about the topic you have chosen. Research defines or helps to define what makes good practice (creates new knowledge). It seeks to extend scientific knowledge (Bull1993). Audit measures the extent to which good practice (as defined by research) is being followed in everyday practice and aims to improve the quality of care provided at a local level. Bull, A. (1993) Audit and research: complementary but distinct. Annals of the Royal College of Surgeons of England, 75 (5), pp302-311.

Contents The Clinical Audit Cycle The “audit cycle” is the term often used to describe the cyclical activity involved in undertaking an audit project from start to finish. When undertaking this process it is essential that you; Decide on a topic and the rationale for undertaking the audit Review the literature Contact your clinical audit department Prepare an audit proposal Collect data and analyse Evaluate findings to identify any inadequacies in services provision and the reasons for these Disseminate results Implement strategies to change practice Repeat this process to achieve and sustain improvements NHS Executive (1996) Clinical Audit in the NHS. Using Clinical audit in the NHS: A position statement. NHSE, London.

Contents Clinical Audit Cycle Set standards What should we be doing? Are we doing it Why aren’t we doing it? Do something to Fix the problem Have we made Things better?

Contents Choosing a topic The first stage of the audit cycle involves identifying a topic area you would like to audit and your rationale for doing so. Early considerations; Is it worthwhile? Is it possible? Exactly what are you trying to achieve?

Contents Possible reasons for undertaking audit To confirm that current local and national policies protocols or standards are being implemented e.g. NICE Guidelines, NSF. Deficiencies in care Obtaining users views Variations in practice Repeated complaints, problems or concerns Potential risks to patients or staff To investigate cost effectiveness

Contents Suggested topics MS Nurse activity / workload e.g. number of patients seen in clinic, telephone contact, caseload growth, referral sources and numbers Management of relapses e.g. waiting time for clinic appointments and steroid treatment The diagnostic pathway in relation to NICE guidelines / MS Society Standards Incidence of pressure sore development Patient satisfaction e.g. information provision

Contents Who to involve / inform Your audit may inadvertently identify deficiencies in other services. It is therefore vital that you inform and if necessary involve the key stakeholders in the audit. This may include the clinical or other staff whose co- operation will be needed to implement change e.g. commissioners, managers, service users, carers, consultants.

Contents Where to go for help and support Local clinical audit department Royal College of Nursing Utilise published audit tools e.g. those included in the key elements document (UKMSSNA, RCN, MSRT 2001) Discuss with regional MS Nurse groups MS Society Professional Network may provide contacts for sharing other audit tools UKMSSNA, RCN, MSRT (2001) Specialist nursing in MS – the way forward. The key elements for developing MS specialist nurse services in the UK. MSRT, Letchworth.

Contents Clinical Audit Departments How they can help can provide assistance in any aspect of clinical audit activity should be contacted early in the audit cycle as you will need to register your project will undertake data collection and analysis usually have proforma for audit proposals will write final report

Contents Reviewing the Literature This will help to identify; Whether your topic area has any recommended standards to measure practice against Guidelines or research which may help to define what constitutes best practice Previous audits that may provide help with standard setting, design and method of data collection

Contents Preparing a clinical audit proposal What to include Audit title Directorate / department Audit lead(s) and contact details How and why the topic was selected Objectives Stakeholders in the audit and how they will be involved / informed Measures to be used in the audit including the evidence base for these Details of any technical or financial support required Confidentiality and ethical considerations

Contents Data collection and Analysis Linking back to your aims and objectives helps to focus on what data you need to collect. The audit department will help to devise a collection tool. Data can be obtained in a variety of ways:- Questionnaires Interviews and focus groups Professional interviews Patient interviews Workload Clinical indicators Medical / Laboratory records Referral letters Remember – only collect data if you are going to use it!

Contents Evaluation of results It is important to inform stakeholders of the results and obtain feedback. This can be done by; Producing a written report of clinical findings. Present findings at local and regional forums. The audit department will archive results and report for future internal or external use e.g. for re-audit.

Contents Changing Practice Changes in practice may have already occurred. If the audit identifies areas of weakness then the team will need to discuss and develop strategies, including an action plan to address these. The action plan could include; -What needs to change -How change could be achieved -Who needs to take these actions forward -How these actions will be monitored and by whom -How and when to assess whether the actions taken have achieved the desired outcome -Timescales for action

Contents Re - Audit Audit is a continuous cycle and therefore re-auditing your topic at some point in the future is crucial. It will enable you to assess whether the changes recommended have been effectively implemented and the desired outcomes achieved. This should be repeated until there is evidence that the agreed good practice is being implemented routinely. Ensure that you have allowed enough time for any changes implemented to take effect before you re- audit.

Contents Section 5 Developing a Directory of Services

Contents Introduction There is much evidence that people with MS find it difficult to access information about local services. Recent health care initiatives (MS Society 2002, NICE 2004) advocate the need for accurate, up to date, easily accessible information in order for people to manage their own condition effectively. Developing a directory of local services is an excellent way of signposting available resources.

Contents Planning If possible establish a multi disciplinary steering group including service users. This will share the workload and give a broader perspective for assimilating information Identify target audience e.g. pwms, GP practices, CAB, libraries Consider how the directory will be funded Decide which organisation will be credited with production – if it is the NHS Trust or PCT then relevant policy for publication of written material will need to be adhered to Decide on what information to include (a list of suggested topics is included on slide 5) Allocate sections to group members who can then undertake research in that area

Contents Planning Consider various formats i.e. CD Rom, booklet, website and the suitability for varying disabilities e.g. partially sighted Consider whether versions in other languages will be required Acquire information regarding writing patient information Estimate necessary numbers of directories based on target audience Determine publishing / production costs Plan how directory will be distributed Consider how the information will be updated in the future

Contents Writing a directory - suggested sections Breaks and Holidays Education, colleges, Employment Equipment Transport Health Housing Information Centres Legal Leisure Finance / benefits Parenting Research Shopping Social Services Support Groups Miscellaneous information

Contents Writing a directory Collate resources (phone numbers and addresses etc) on each given topic. This is best done by group members exploring local services For examples of Directories produced in other areas look on local MS Society branch websites (e.g. Solihull and District branch). These will provide numbers for many national organisations and give ideas about which local services to include Ask patient group to review draft and feedback You may want to include the date the directory was completed and a date that it will need updating

Contents Sources of funding MS Society (National Centre and local branches) Pharmaceutical companies Local PCT Local charities e.g. Rotary, Lions Lottery grant?

Contents Printing Carefully consider presentation e.g. loose leaf, spiral bound as this will be easier to revise or update Most Trusts have a contracted printing company who can advise on design Colours and designs are costly but look more professional – will need to work within budget You need to consider the size font used Clarify the printer’s requirements regarding format of text e.g. Word Ensure that backup copies are kept – this will make updating easier

Contents Distribution Consider a launch event MS Society branches may well help to distribute to their members Postal distribution is costly so may be more cost effective to give out directories at clinic appointments, patient events such as newly diagnosed courses Public facilities e.g. library, CAB will be keen to stock Other professionals involved in care of people with MS may welcome a department copy

Contents The revised edition! Unfortunately phone numbers and addresses change, organisations dissolve and new services develop on a continual basis. It is therefore necessary to regularly review and update your directory. Devise a plan to include annual review, amendments, and necessary reprinting and redistribution

Contents Section 6 Getting Political

Contents Introduction To enhance the care of PWMS it is essential to acknowledge and tackle health inequalities a client and their family will face. This requires addressing both on an individual and service provision level, against the background of legislation.

Contents The Chronically Sick and Disabled Person’s Act 1970 It identified a Disabled person’s right to assessment for specific services. It did not stipulate that after assessment the services would be provided but may be. This highlights the inequity of power between the service providers and receivers

Contents The NHS Community Care Act 1990 It identified that once a person with a physical disability had been assessed as in need, the local authority must provide practical help for ill and disabled people. Again it did not stipulate what services would be provided, but what may be available…..

Contents Available services A home carer to help with tasks such as dressing, cooking etc. Community meals Respite care such as day care or a sitting service Aids and equipment Counselling Occupational Therapy Help with installing a telephone and special equipment to use it Help with transport

Contents Disability Discrimination Act 1995 Disabled people and representative groups were proactive for many years striving to achieve equal rights. Consultation and partnership working with the Government led to evolution of the Act It was implemented through phases between December 1996 and October 2004

Contents It gives disabled people rights in the areas of….. Employment Access to goods, facilities and services Buying or renting land or property It aims to end the discrimination which many disabled people face

Contents The Community Care (Direct Payments) Act 1996 It paved the way for clients after assessment to have the choice and flexibility in managing their own care packages Utilising personal assistants more effectively would enable a disabled autonomy over their quality of life

Contents The Carers (Equal Opportunities) Act, April 2005 It will ensure that carers are able to take up opportunities that people without caring responsibilities often take for granted It places a duty on local authorities to ensure that all carers know that they are entitled to an assessment of their own needs, also to consider a carer’s outside interests.

Contents NSF For Long Term Conditions 2005 Ten year plan stipulates 11 quality requirements to make good practice standard practice nationally, rather than at present scattered areas of good practice. The Commission for Social Care Inspection and the Healthcare Commission will be responsible for monitoring progress

Contents Multiple Sclerosis Specific Documents The MS Society Standards of Healthcare for PWMS (2002) The NICE guidelines on management of MS in primary and secondary Care (2004)

Contents How can this be transferred over into your practice ? As a Specialist Nurse it can be applied in two areas……………  Individual clients and family members  Service provision

Contents Individual clients / family members Provide advice on all aspects of their rights to services Inform them of areas of support e.g. Disability Employment Advisors, Disability Law Service, Citizens Advice Bureau, Patient Advice and Liaison Service Encourage participation on Expert Patient Courses, Patient and Public Information projects Encourage membership of local MS Society Branch and other support groups e.g. Neurological Alliance

Contents Service provision Obtain background information on Health Inequalities, Locality Profile and Adult Lifestyle Survey from your Public Health department, and the Community Care Plan. These provide useful statistics when looking to develop services

Contents Service provision Encourage representatives from local branch of MS Society to join User/Consultation Groups within Health and social Services. Often training can be provided by services to enable users to feel confident to participate on such groups

Contents Service provision With your Consultant Neurologist establish an MS Services Steering Group with acute, community and voluntary staff. It is especially important to have GP representation. If there is a service deficit within your borough, liase with cross boundary services where there is such a service. For example if there is a Consultant in Rehabilitation Medicine in a neighbouring PCT, liase and network with them to join or advise to the group

Contents Service provision Identify your process locally to raise awareness of deficits and how to bid for funds to develop services e.g. Local Development Bids. It is very useful to identify key stakeholders on Primary Care Trust boards, Professional Executive Committee, Joint Executive Group, who will support your cause. Issues raised by the MS Services Steering Group can then be raised on the boards.

Contents Service provision It is especially important to network and liase with Commissioners to become aware of other local service developments. Bids can often be made in combination with one another e.g. if other neurological services identify a deficit in therapy services, could a joint post/posts be applied for?

Contents Service provision Utilise your Clinical Governance Departments to audit aspects of current service provision. Could this be done in combination with the MS Society Measuring Success toolkit? If there is a Care Pathway facilitator, choose an aspect of MS that requires looking at e.g. relapse identification and management. Choose something that will prevent unnecessary hospital admissions.

Contents Service provision NHS Alliance is a representational organisation of primary care and Primary Care Trusts. Its strength is a value based organisation, which has always emphasised equity, inclusiveness, co-operation, democracy and multi-professional working. Identify if your PCT is already a member and whether you can gain access it in order to obtain information and liaise with others.

Contents Final thought ! Join together with other staff to develop services, you can not do it alone. Nouwen (1982) wrote; ‘ Gathered together in common vulnerability, we discover how much we have to give each other’ Collaboration and partnership working is a great way to prevent feeling burnt out.

Contents Section 7 Organising an Educational Event

Contents The MS Specialist nurse role includes education of both other professionals and people with MS e.g. newly diagnosed or symptom management courses, study days etc. The organisation of such events can be time consuming and stressful but can also be a worthwhile and rewarding experience. The aim of this section is to provide a toolkit for organising a successful event whilst avoiding pitfalls. Introduction

Contents Start to plan as early as possible e.g. six months ahead for a major event. If possible establish a multi disciplinary steering group. This will share the workload and also give you a broader contact base for acquiring speakers. Determine target audience (numbers, people with MS, multidisciplinary team, carers) Consider how the event will be funded You need to strongly consider how the day will be advertised as this is the key to a good attendance rate Planning

Contents Choosing a venue There are many factors to consider when finding a suitable venue; Location (ideally central to the audience you want to attract) Number of delegates attending. Facilities i.e. Disabled access and facilities. Catering facilities – consider menu and adequate seating arrangements. Cost Appropriate environment e.g. informal patient group may need a relaxed setting Conference facilities

Contents Choosing a venue Visit potential venues and obtain information on layout, wheelchair access, cost, facilities, catering, parking etc You will find that most venues only have one disabled toilet, is this adequate for your client group? Is there a suitable free venue in your locality? Are there any hidden costs e.g. parking for attendees?

Contents Booking the venue Always obtain a confirmation letter confirming the date, times and price of the event Ask when final numbers, deposit and balance of payment are required Request a terms and conditions contract and all health and safety requirements

Contents Funding your event You may need to secure funds depending on venue, catering and numbers attending. MS Society branches are usually very willing to fund venues and refreshments for patient educational events. Pharmaceutical companies often sponsor study days and will exhibit product information stands, but regulations prohibit presence at patient events For a high quality event in a good venue you may need to charge delegate fees in addition to part sponsorship Remember to include hidden costs in your calculations such as travel expenses, lunch for non paying attendees (speakers, company reps)

Contents Organising finances Varies depending on circumstances but suggestions include; Speak to finance department and identify an account for incoming payments e.g. trust fund account Allocate person responsible for coordinating payments / receipts, and chasing up non-payments Keep accurate record of incoming delegate fees and sponsorship funds Check your sums!!

Contents Planning the programme The success of your event depends on the quality and relevance of the programme and the expertise of the speakers.

Contents Planning the programme High profile key speakers will attract the audience – aim to start and finish the event on a high note Quality speakers are usually in demand so invite them as early as possible Be prepared to be flexible and arrange the rest of the programme around key speakers

Contents Planning the programme Aim to begin with an overview which will set the tone. Plan for the sessions to follow a logical sequence. Vary teaching methods – case studies or interactive sessions keep the audience awake and interested Arrange regular coffee and lunch breaks Consider what you would do if a speaker cancelled at short notice. Have a ‘spare’ session that you can do just in case!

Contents Planning the programme Try to have at least 2 of you running the day as there maybe unforeseen events that may happen that may take you away from the conference area for a while Ensure that the programme meets the needs and interests of the audience using a variety of disciplines at the appropriate level. If relevant try to include first hand experience e.g. from a patient or carer.

Contents Briefing your speakers Phone your chosen speakers to check availability and your requirements (length, time and subject matter of the session) If they are unable to attend ask if they can recommend a colleague as an alternative Provide information on delegate numbers and background of target audience Forward a draft programme to each speaker and confirm date, time, venue. Include map

Contents Speakers Check if speakers require lunch, also if they have any special dietary requirements. Confirm format of their presentation – which audio visual aids are needed? Ask if they can email the presentation in advance. Do you want to provide handouts? Always offer each speaker travel expenses

Contents Advertising your event Design a flyer to include theme, outline of content, venue, cost, date and time. Ensure contact for further information and payment details is included Distribute to relevant target audience – if possible collate database for further use Consider wide distribution for example nursing homes, GP practices, cottage hospitals, acute wards, therapists, hospices etc If event is for people with MS use MS Society branches to distribute and advertise Use local press or radio

Contents Preparing for the day On receipt of delegate payments send out confirmation of booking with programme and map Prepare speakers presentation onto CD Rom / hard drive Prepare handouts, registration and evaluation forms Order relevant leaflets i.e. MS Society publications Recruit an IT literate colleague or rep to take charge of IT and audiovisual aids on the day Keep in contact with venue to check arrangements

Contents Running smoothly Arrive early, introduce yourself to venue staff and identify contact person in case problems arise Lay out leaflets and stationary Prepare your introduction – welcome, housekeeping, acknowledgements (especially sponsors), advise on keeping to time, mobiles off etc. Know your speakers and subject matter – when do they want questions? Timely prompt 5 minutes before end of session Be flexible with timing – run a little over if appropriate Chivvy delegates back from breaks to keep on time

Contents After the event Collate evaluation forms Don’t take evaluations personally – you will never please everyone all of the time Write to thank speakers – include summary of evaluations, offer travel expenses Breathe a sigh of relief and have a large gin!

Contents Suggested timetable 6 months – establish steering group, identify target audience, draft programme and speakers, identify potential venues and arrange to visit 5 months- book venue, phone speakers and confirm in writing, arrange sponsorship, calculate fees, find IT helper 3 months - finalise programme, prepare flyers, registration form evaluation forms and maps, order leaflets 1 month- advertise/send out flyers 1 month onwards – send out programme, map and receipt to delegates 1 week – confirm numbers with venue, chase outstanding payments and sponsorship. Check speakers presentations and prepare handouts. Prepare your introduction. Check equipment.

Contents Appendices Please Click on Information Icon to Access It Letter to speakers Letter to sponsors Sample programme Sample flyer Sample evaluation sheet Sample thank you letter Certificate of attendance

Contents Section 8 Writing for Publication

Contents Why? To describe what you do To disseminate evidence, research and good practice To publicise the needs of people affected by MS To increase awareness of MS and how it is experienced by people To put new ideas across as nursing evolves To enhance your professional status

Contents Things to consider What is the article going to be about and why do I want/need to write it? What is the right structure for the article? Which is the right journal to publicise the article? Does the journal pay a fee? If not, does this matter? Who are your target readers? How can you capture the readers attention – and keep it? If the reader finds your words boring, pompous or full of jargon it will put them off finishing your article. Write the way you talk if it is appropriate.

Contents Standard structure for a literature review Title page Abstract / summary Introduction Literature review Discussion Conclusions & recommendations Acknowledgements References Tables/figures

Contents Standard structure for a research article Title page Abstract Introduction Literature review Methods Results Discussion Conclusion & recommendations References

Contents Writing a subjective article The aim of this sort of article is is to excite some emotion in the reader using humour, personal anecdote, dire warnings, questions left unanswered, and so on. The article tends to be short But you will lose your reader if you use too many similes, adjectives, exclamation marks and witty asides. Also don’t think that because these articles are shorter and seemingly less structured, they are easier to write. They call for as much discipline and attention to technique as any other kind of writing.

Contents Writing an objective article Objective articles tend to have an ‘invisible’ author and you will appear as ‘the writer’ or ‘the researcher’. These are the more classical article. They tend to be logical in structure, whether they be reporting original research, reviewing a subject topic or putting forward an idea or hypothesis. They commonly start with a labelled ‘introduction’ and end with a ‘conclusion’: everything in between will lead you logically from the former to the latter.

Contents Writing an objective article cont Read it and read it again to minimise mistakes. Presentation is essential and will catch the editors eye. You can only submit the article to one journal at time The language will be more measured and formal – you are unlikely to find many adjectives telling you how ‘ghastly’ or ‘fantastic’ something is – with suggestions being offered, rather than assertions. Statements need to be backed-up by references and the article will tend to have longer sentences and paragraphs

Contents Key points Know what you want to write about Know who you are writing for Obtain guidelines from the journal you are targeting You can send either a draft article or approach the editor with an idea / abstract. This may save a lot of time and effort. Spend time finding the right structure for your article Write clearly – ask a non-nursing friend if the article makes sense

Contents Key points cont’ Do not try to include too much information. Be focused then you can concentrate on one particular aspect of your work Use a spellchecker, but ensure it checks English, not American, spellings Use up-to-date literature/references

Contents Key Points (3) Make a note of all your references as you go along, this will save time at the end Don’t assume journals are inundated with articles, they often very interested in new ideas Don’t be disheartened if your initial draft is rejected or is returned with many required amendments

Contents Acknowledgements Adapted from a presentation given by Helen Scott, Editor of the British Journal of Nursing. Edinburgh, September 2004 and www.cybernurse.org.uk/career/writing_skills5htm

Contents Further reading Albert, T (2000) Winning the Publications Game, 2nd ed, Radcliffe Medical Press, Oxford Cook R (2000) The writer’s manual: A step-by-step guide for nurses and other health professionals, Radcliffe Medical Press, Oxford. Thomas S (2000) How to write health sciences papers, dissertations and theses, Churchill Livingstone, Edinburgh. Docherty, B. (2000) Writing for publication: some core ground rules, Professional Nurse, 16(2): 910-911. Sheldon, L. and Jackson, K. (1998) Writing for publication, Paediatric Nursing, 10(10): 36-37.

Contents Section 9 Integrated Care Pathways

Contents What is a care pathway? An opportunity to develop multidisciplinary records and improve the team approach. Considered essential by most trusts as a way of a way of maintaining effective clinical governance.

Contents What do care pathways do ? They reflect best practice Standardise patient care Provide individual and personalised care Promote interdisciplinary/multi-agency working Audit tool

Contents Designing a pathway Create a development team/group from ‘hands on staff’. Liaise with all disciplines. Draw up objectives. Look at measurable outcomes. Process mapping of current service.

Contents Stumbling blocks to change. Anxieties about clinical freedom from professionals. Insecurity about changing practice. Documentation can be lengthy. Adequate warning and training needed. Needs to be piloted/validated.

Contents Benefits of care pathway. Complete record of patient care/journey. Valuable tool. Improves clinical practice. Effective clinical governance. Effective risk management. Shared/seamless care.

Contents Why use care pathways? Implementation of new guidelines; i.e. Nice guidelines. Stimulates audit- tool to measure. Teaching tool for both trained and untrained staff. Comprehensive document and source of information for patients.

Contents Mapping process. Process Mapping looks at the bigger picture Strengths/areas for improvement Bottlenecks/inefficiencies Specific task & events involved Looks at inputs/outputs Dependencies and interfaces. (Hammersmith Hospital 2005)

Contents Mapping process (cont/d..) Mapping also identifies; Scope and complexities of key operational issues. Identifies specific elements of timing, volume, and resource requirements. Development of ownership of issues. (Hammersmith hospital 2005)

Contents How to start mapping. The process is identified: Start and stop points. One process at a time. The right people: Staff, patients, carers. Prepare resources: Paper, post it notes, flip chart, pens. Test run.

Contents Preparation Define objectives, scope and focus Meet with clinical, managerial and service leaders beforehand Organise event for whole day if possible Arrange venue i.e. off site, neutral setting Give plenty of notice Set goals Define individuals roles and expectations

Contents Completing the mapping Allow time to set up (at least an hour) Keep the process moving Use a large paper sheet or flip chart Use post it stickers and flow charts Add comments to original suggestions Validate responses, comments and ideas Compare staff, patient and carer flow charts Agree preliminary action plan Try to make it both practical and fun

Contents Mapping exercise. QUESTIONS TO ANSWER. What happens the majority of the time? Refer back to objectives and vision. What else? What next? How often? Don't deliberate, capture the facts and do not pass judgement.

Contents After the mapping process. Show results to someone neutral for an opinion Take photograph of mapping plans Send copies of notes and action plan to all involved and those unable to attend Meet with service leaders and lead clinicians to decide on next steps Finalise plans and project groups Set dates for further meetings Review action plan with project manager and members at regular intervals i.e. 3 monthly

Contents Examples of tools for M.S. Care Pathway “The role of the nurse in the management of spasticity” Jarrett, L. Multiple Sclerosis Trust. Letchworth

Contents Other pathways. Various algorithms have been developed which are essentially a mapping of the process of individual symptoms of M.S. i.e.: Fatigue, Continence. Created in the U.S.A and essentially outlines a pathway. Multiple Sclerosis Council for clinical practice guidelines. Paralyzed Veterans of America. (1998)

Contents The future of care pathways. The documents will eventually follow the patient home and back to hospital. Patients will have greater participation in their care planning. Individual professional/agency documents will be integrated into one care pathway.

Contents Section 10 Setting up a Focus Group

Contents Objectives Define ‘Focus Groups’ within clinical practice Identify the objectives of focus groups Discuss the practicalities of setting up a local focus group Identify ways in which focus groups’ can impact on service design and delivery

Contents What are focus groups? A focus group is a carefully planned discussion designed to obtain perceptions on a defined area of interest in a permissive non- threatening environment. Group members influence each other by responding to ideas and comments in the discussion. (Krueger 1994)

Contents Why use focus groups? By conducting a focus group you send a powerful message to your clients/patients about your commitment to excellence in service delivery

Contents Focus Groups Now in regular use in the private and public sector consultation process. They overcome many of the disadvantages associated with the more traditional methods of consultation

Contents The concept of Focus Groups Communicate information on how groups of people think or feel about a particular topic Give greater insight into why certain opinions are held To help improve the planning and design of new (product/service) To provide a means of evaluating existing service/products Are often used in research to generate ideas or topics for further research

Contents Why involve users? Improves the range of choice and quality of life for all service users Identifies needs and concerns which are common across care categories Informs and advocates user perspectives Identifies any gaps in communication / comprehension The service becomes one where people are respected, treated as individuals and involved in their own care, improving the quality of care and influencing priorities

Contents Practicalities of setting up focus groups The numbers in the group need to be carefully considered 6-8 members constitutes a group 10-12 maximum number- anything larger would prevent each member from making a significant contribution to discussion Even 3-5 in the group can be effective for the cross fertilisation of ideas Larger groups could be split into several smaller ones

Contents Issues for consideration Attempt to compose a group of similar gender, age and social class – it is easier for them to communicate effectively May need more than one group to investigate all relevant issues – for example ……. A group of people with early MS would have different ideas to someone diagnosed many years ago

Contents Creating positive reasons for attendance Sound enthusiastic Tantalise the respondent Provide materialistic incentive Remove barriers preventing attendance Reassurance

Contents Ground rules for focus groups Involvement of group Agenda pre-arranged Confidentiality Team-working Openness and honesty Minutes/notes taken Individual behaviour – expectations Members will be reminded 2 days pre-meeting

Contents Practicalities of setting up focus groups Frequency of meetings/discussions - no hard and fast rules 2 meetings is the preferred minimum to obtain a better feel and counter the possibility of a rogue response Takes time to organise, develop an agenda, a script, prepare materials, invite participants, test the questions, organise a site, agree date

Contents Issues for consideration Venue and timing Easily accessible to all Well known location Good parking facilities Room small, intimate and quiet Lunch times are good!

Contents Running a focus group Anyone can do it! Good level of knowledge and understanding of the subject matter! Requires a degree of confidence Good people management! Post-it notes are invaluable! Flip charts Make it fun!

Contents Ethical Issues Ethical considerations for focus groups are the same as for most other methods of social research (Homan 1991) Full information about the purpose of the meeting The use of participants contributions Being honest and keeping people informed and expectations of the group and topic

Contents Ethics Participants should not be pressurised to speak The handling of sensitive material and confidentiality need consideration Moderator need to clarify that contributions of participants and moderator will be shared with the group If a research focus group must anonymise data from the group

Contents Qualities required by the moderator/facilitator This is a challenging and demanding role! You need to possess good interpersonal skills and have a personable quality Be a good listener, non-judgmental and adaptable Remain impartial You need good organisational skills You need to promote participants trust and increase the likelihood of open interactive dialogue

Contents Role of the Moderator/Facilitator To provide a clear explanation of the purpose of the group and help people feel at ease To promote debate – asking open questions To challenge participants To draw out people differences and explore a diverse range of meanings of the discussion Progress discussion if conversation drifts To keep the session focussed To ensure everyone participates and gets the chance to speak

Contents Some ideas for running your own focus group Develop open ended questions for example: “If money were no object how would you run an MS service” The best way to do this or prompt them to answer honestly is to reveal a flaw about the service – participants realise its ok to discuss sensitive concerns Provide a safe environment for the participants – they feel safer if they know they are amongst like-minded people Ensure non-defensive posture is maintained

Contents Focus Group meetings Preparing the session Developing the questions Planning the session Facilitating the session What you do immediately after the session

Contents Opening the group Thank everyone for attending Let people know the aim is for this to be a positive experience Remind them of the purpose of meeting Blackmail works!

Contents Closing the meeting Carefully reflect back a summary of what has been heard Thank everyone for taking time to attend Expenses Let everyone know comments will be taken seriously Follow-up – send a report After – make any notes/ write down any observations

Contents Partnership group How can the MS Society branches and MS nurses work together to improve MS: Services improvement/modernisation Information for - Newly diagnosed patients, symptom management, palliative care/rehabilitation, professionals with an interest in MS, carers Develop services Preferred provider Evaluate services

Contents Terms of Reference for ‘Partnership Group’ and Ground Rules The aim of the group: ‘ To work in partnership in the areas of …………….. for the best possible outcomes for people with MS’ Aims of the group clearly stated and understood Membership explained Facilitator nominated How many meetings?

Contents Examples of Questions generated for the MS NICE group What are the priorities for MS service development? What could be improved? What are the things that are done well at UHNS? What is done poorly? - Give example How would you like relapses to be managed? What would you change about the service?

Contents Palliative care group focus group How can we develop a service based at the local hospice to provide day care facilities for those moderately severely affected by MS? Who should be involved? What should the structure be? What criteria should be applied? How can we maintain it?

Contents Focus group research Theory underpinning focus group research is that information generated in a group dynamic is rich and useful for: To generate ideas To gauge attitudes towards particular issues To find out how why and when people use services To ensure quality control

Contents An example of MS research using focus groups Investigated the lived experiences of people with MS and examined their needs from their perspective Courts et al (2004)4 themes identified: ‘nobody listened’ Symptom devastation Making choices to maintain control Self-advocacy ‘taking charge’ The most poignant need was someone to listen to them and knowledge. Findings support nursing interventions that empower and teach self-management

Contents Section 11 Stress and Burnout

Contents As a specialist nurse in Multiple Sclerosis you are responsible for your own time management and workload with the patient at the centre of your service. This should not be achieved to the detriment of your own well being. By working within a stressful environment your ability to achieve set goals will diminish. This can result in lack of job satisfaction and lead to demotivation.

Contents What is stress? Stress is a condition or feeling experienced when a person perceives that “demands exceed the personal and social resources the individual is able to mobilize”. Richard s. Lazarus

Contents Stress Stress is often viewed as a flight or flight response. It is a basic human survival response left over from our primitive past in order for us to respond to perceived dangers. In our modern society this response can be seen as problematic or inappropriate unless transformed to a more useful form.

Contents Some common physical symptoms Lack of energy Back and neck problems Insomnia Headaches Palpitations Loss of sex drive Irritable bowel

Contents Some common emotional symptoms Depression Constant worrying Anger Being critical of self/others Feeling swamped Panic attacks Emotional Feeling isolated Loss of humour

Contents Some common behavioural changes Denial – oblivious to problems Reduced work performance Poor time management Becoming confused, aggressive or irritable Unable to perform familiar tasks Escapism – alcohol, food, drugs etc.

Contents Coping with stress We all respond differently to stress. The body becomes vulnerable at its weakest point, whether this is emotional or physical, and we develop our own unique ways of coping and maintaining normality. Therefore it is important that we recognise these symptoms when they arise and take steps to limit the effect they have on us, by seeking support at an early stage.

Contents Analysing workplace stress Work overload – too much to do or not enough training or skills Work underload – not sufficiently challenged Poor working environment Excessive responsibility Role ambiguity Poor pay! Dealing with difficult people Poor working relationships Inability to influence things Constant organisational change Imbalance between work and home life

Contents Managing your stress When we become chronically stressed we can lose insight and the ability to focus on the situation. It is important to take time out to identify the sources of stress, how you react, and make plans to address the problems. Use tools to assess personal susceptibility to stress (appendix 9) Identify sources of stress Target your greatest sources of stress Planning interventions; primary intervention to change, reduce or eliminate the problem. Secondary interventions to improve your coping and resilience e.g. relaxation techniques, pleasurable leisure activities

Contents Long term interventions Clinical supervision Regular meetings with your line manager Peer support e.g. specialist nurses within your Trust Healthy lifestyle e.g. balanced diet reduce toxin intake (tobacco and alcohol) regular exercise Effective time management e.g. pace yourself, take regular breaks Learn to say “no” Don’t try to control the uncontrollable

Contents Long term interventions cont’ Be aware of your own moods and feelings Use a relaxation method acceptable to you such as yoga, meditation, massage or breathing exercises Be aware of stress factors in those around you – support each other Keep your sense of humour

Contents Managing stress and preventing burnout involves finding the level at which it allows you to be stimulated within your work but not so high as to be overwhelming.

Contents Reference Lazarus, R.S. (1993) Why we should think of stress as a subject of emotion; in the handbook of stress. The Free Press, New York.

Contents Appendix Please Click on Information Icon to Access It Doc.1Doc.2 Stress Documentation

Contents 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

Contents Moving Your MS Specialist Nursing Service Forward Midlands MS Nurse Group Nov 2005.

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Contents Moving Your MS Specialist Nursing Service Forward Midlands MS Nurse Group Nov 2005.

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