Welcome !

1. Welcome ! Introductions Plan for the day

2. Aims of today • Consider how we as individuals and groups can contribute towards ‘No Avoidable Infections’ • Review how best to ‘make a difference’ in working with people who can deliver the necessary changes and improvements • Gather some useful new perspectives and a toolbox of ideas • Communicate messages and ‘asks’ to DH in a way which will stimulate forward action • Lindsay Wilkinson will be here at 2.30pm today • MP event on April 1st hosted by Dr Brian Iddon MP • Hone succinct messaging and communications plans driven by your own group's objectives • What else?

3. THE ROLE THAT PATIENT & PUBLIC GROUPS HAVE IN HEALTHCARE

4. Beyond token involvement • Government has passed legislation to involve patients and the public in shaping local health services so that they truly reflect the needs of the community they serve. • NHS is being given more responsibility by the Government for the design and delivery of local health services and has a duty to involve and consult patients and the public when planning services. All of this means that local campaigning and influencing will become more important and there is more opportunity for direct involvement in improving services

5. Across all sectors There is a long history in the UK of people coming together in groups to achieve a common goal. Quite often, ‘grass roots’ activists with similar experiences got together simply as a way of supporting each other, or because they felt they were being discriminated against. Some have campaigned for better services or better working conditions while others have simply strived to raise awareness. Many of the independent disability advocacy groups in the UK were started by grass roots activists; now they are properly funded and provide substantial support. RNIB (2004) ISBN 1 85878 621 5

6. “We need to work in partnership – in particular with patients and patient groups. In order to form effective prevention and control policies, it is essential to work closely with patients and their relatives to better tailor policies to patients real needs...well informed and empowered patients are a strong asset for European societies.”     Commissioner Vassiliou, 7 April at ECPC Cancer Patient Summit

7. “If campaigning groups don’t represent the public and patients in policy-making, then who is going to ?” Jeremy Laurance. Health Editor, The Independent. Challenges facing the Health Advocacy Community The views of policymakers & media, Health Equality Europe, 2006

8. “Who’s most active pressing for change?” a Challenges Facing the Health Advocacy Community: a Europe-Wide Survey of Health Campaigners (2006)

9. “Who values and takes you seriously as a health campaigner?” a Challenges Facing the Health Advocacy Community: a Europe-Wide Survey of Health Campaigners (2006)

10. “How do you deliver your campaign?” s Challenges Facing the Health Advocacy Community: a Europe-Wide Survey of Health Campaigners (2006)

11. Major activities of campaigning groups in Europe Challenges Facing the Health Advocacy Community: a Europe-Wide Survey of Health Campaigners (2006)

12. “Do you believe the patient/advocacy movement could become an effective force within healthcare systems?” “Yes but they’ll always have to battle for airtime with the likes of doctors, nurses & political players” Patient advocates need to be self-critical. People they put forward as representatives need to be effective Gary Finnegan, Editor Irish Medical Times Joanne Shaw, Vice-Chair NHS Direct “Yes absolutely. And it will. This is a definite trend” “Yes it already is” Jeremy Laurance, Health Editor, The Independent In: Challenges facing the Health Advocacy Community The views of policymakers & media, Health Equality Europe, 2006 Stephen Pollard, Director Health Policy Programme, Centre for the New Europe

13. Focus on HCAI stakeholders • Clear Government policies for increasing patient and public involvement in place • DH has set up the HCAI stakeholder forum with twice-yearly meetings + Your ad hoc interactions with DH + DH has asked for some input from some of you + You’ve been active in a range of your own initiatives • DH is aware of positive impact of working together with advocacy groups (eg cancer) Asked me to support you in developing the relationship • There is real potential for achieving better outcomes by working to deliver shared objectives with the DH, the NHS, patients and the public.

14. What motivates us? How to employ your experience to the best effect. The value of experience and how to use it to reach your objectives

15. Campaigning tools and using them with greater precision to achieve what you plan to achieve. Look at the range of decision makers – who could you reach out to? What are the different methods and techniques that you can use? What makes an effective patient group? What makes an effective patient advocate? How to ensure that people listen? Masterclass

16. DVT campaign

17. CMO responds to recommendations. Implementation Group established. DVT campaign Government established expert working group on DVT in hospitalised patients. Group submitted report with recommendations on best practice to Chief Med Officer. 12 recommendations from HSC resulted in favourable NHS environment for increased use of thromboprophylaxis Maintain pressure to ensure implementation of new guidance HSC Inquiry Arm Parliamentarians with the facts, ideas and do the leg-work MP & Peer Seminar: “VTE deaths” Communicate to Parliamentarians but also officials Think Tank Seminar: “Preventable deaths” KOL Parliamentary & Policy briefings:“VTE deaths in UK” Mobilise researchers and KOLs Advocacy-led project over 15 months Patient group launch. Etablish ‘Lifeblood’ in Westminster, Scotland and Wales Support patient groups in carrying the message

18. Implementing NSF for Diabetes Diabetes Czar “The consultation is a great initiative which helps my work tremendously” Launched at Treasury Grassroots feedback via managed blog Events in libraries & hospitals Health Minister “The grassroots information helps me raise diabetes issues in Government” Report presented To Minister with media

19. Patient group responses to negative NICE Each patient group made a robust direct response to NICE Beating Bowel Cancer Mobilizing email to 50 “Patient Voices” International Myeloma Foundation Website ‘How To’ and response mobilization Mailed 600 haematology nurses Lymphoma Association Website ‘How To’ and response mobilization Patient activist for media & political activities Macmillan Cancer Relief Website ‘How To’ and response mobilization Ovacome Mobilizing email to 1,300 members Mother & daughter patient activists Leukaemia CARE Website ‘How To’ and response mobilization Bowel Cancer UK Website ‘How To’ and response mobilization CancerBACUP Led joint consultation response The Patients Association Media personality with cancer open to media

20. Cancer Campaigning Group: Call to Action

21. Routes to generate your data & mobilize supporters • Telephone hotline audit • Vox pops • Zoomerang questionnaires • Web-based voting around a Service Pledge • On-line surveys (managed blogs) • Publication reviews • Learning at the NHS desk/ in the lab • Trials • Patient groups eg diabetes, kidney disease, DVT, cancer

22. Range of delivery vehicles • You, and your memberships supported by templates • Telephone, emails and e-virus chains • Websites – your own and related interest groups • Newsletters, pamphlets and magazine articles • Letter to the Editor / Letter to the Minister • Local user groups (LINks) • Response to public consultations • Ask for input to DH/local NHS working teams • Journalists and health editors • Seminars & Radio Days with experts

23. Range of delivery vehicles • Letters, briefings and meetings with Ministerial, DH, MPs and councillors • Constituency Days of Action/ MP clinic visits • Parliamentary tactics via MP APPGs and peers: PQ/WQ, debates, EDMs, MP visits in House of Commons, stakeholder inquiry event (World Health Day, 7th April) • Parliamentary elections: MEP election issue/ party health manifestos/ prospective candidates • Co-signed declarations as a political tool (launch events with media coverage) • Mass lobby of Parliament

24. Co-signed declarations and calls for action, examples • Warsaw Declaration • Breakthrough Service Pledge • European Patients Forum • Europacolon • Lung Cancer Plan • Cancer Campaigning Group

25. Resources • Professional Panel of experts, includes • Prof Martin Buxton/Julia Fox-Rusby (HE & Social Sciences) • Prof Nick Bosanquet (Health Policy) • Prof Ray Powles (Oncologist) • Dr Martin Duerden (Consultant Public Health) • Mr Michael Sobanja (Chair NHS Confederation) • Ros Meek (CEO ARMA) • Jane Jones (Consultant in medical education) • Isobel Davies (Consultant in HR) • Introductions to other charities • Cancer, Kidney disease, Diabetes, DVT etc • ‘How to’ for your members to be effective advocates • Learning at the NHS desk/ in the lab • Platforms for the HCAI stakeholder groups are in development

26. What makes an effective advocate? • Clear aims, simple messages and what you are calling for • Impact and need for change • Personal face on the issue • A well-argued case supported by facts • Anecdotal feedback • Statistics/ questionnaire/survey • How the proposal has worked well elsewhere • A message that is and sounds helpful – in line with DH objectives • Politically relevant • Takes into account all relevant issues • Comes across appropriately • One that helps people to do their job

27. What makes an effective advocate? • Being strategic • Picking short-term wins but being ready to play the long game • Integration of political, clinical, scientific and public elements • Being fleet of foot, alert to opportunities with clear talking points • ‘Elevator speech’ for a quick briefing of official, MP or journalist • Mobilising people who have the power to make the changes – and those who influence them • Active/influential supporters – diverse experts, related interest groups and public • An appropriate range of delivery vehicles • Being mindful of ones personal and professional reputation as a campaigner

28. What makes an effective advocate? • Effective communication • ‘Open’ questions, cool-calm-collected • Listening skills • Assertiveness not aggression • Negotiation • If there is complete disagreement over an issue try to find a ‘middle ground’ that you can all agree on • If there is no middle ground, a reasonable, realistic compromise

29. Promoting patient-centred healthcare around the world ADVOCACY: LESSONS LEARNED • Get Their Attention; It’s the Sizzle That Sells • Make Them Care; Engage Them Emotionally • An Effective Demonstration Needs Numbers; Make It Politically Worthwhile to Solve the Issue • Engage Influential Insiders to Support Issue; Better Yet, Get a Seat at the Table • Row Together; Find Common Ground; Watch Out for “Divide and Conquer”; Keep Everyone Informed and Engaged • Let Others (Without Vested Interest) Speak For You; Make Solving the Issue the “Right Thing” to Do • Small is Good; Don’t Forget: David Won • When You Get to the Top, Don’t Forget to Send the Elevator Back Down

30. Characteristics of an influential campaigning group Challenges facing the Health Advocacy Community The views of policymakers & media, Health Equality Europe, 2006

31. Characteristics of an influential campaigning group Mel Read former MEP. Challenges facing the Health Advocacy Community The views of policymakers & media, Health Equality Europe, 2006

32. Where does local practice need to change? Where does national policy need to change? Beginning to think through which parts of your agenda “fit” best where and therefore how to communicate so that people listen and act. What are you campaigning objectives and who are you trying to reach and why, what are you going to do and when; who will take this forward? PLANNING YOUR MESSAGES & TACTICAL PLAN

33. Strategic Planning • Simply put, strategic planning determines where an organization is going over the next year or more, how it's going to get there and how it'll know if it got there or not • Goals-based planning is probably the most common and starts with focus on the organization's mission, goals to work toward the mission, strategies to achieve the goals, and action planning (who will do what and by when).

34. Benefits of Strategic Planning Strategic planning serves a variety of purposes, including: 1. Clearly define the purpose of the organization and to establish realistic goals 2. Communicate those goals and objectives to the organization’s constituents. 3. Develop a sense of ownership of the plan. 4. Ensure the most effective use is made of the organization’s resources by focusing the resources on the key priorities. 5. Provide a base from which progress can be measured and establish a mechanism for informed change when needed. 6. Bring together of everyone’s best and most reasoned efforts 7. Provides clearer focus of organization, producing more efficiency and effectiveness

35. NAME OF GROUP: Mission Statement Key Objectives 1.J 2.’lk 3. G 4. FGHJHM G G G G G G G

36. NAME OF GROUP: Key Achievements To Date F D D G FGHJHM G G G G G G G What Else We Would Like to Achieve eg Change What ? F D D G FGHJHM G G G G G G G

37. NAME OF GROUP: STRENGTHS WEAKNESSES FGHJHM G G G G G G G FGHJHM G G G G G G G OPPORTUNITIES THREATS

38. MAJOR DECISION MAKERS RELEVANT TO US

39. OUR ACTIVITIES WITH EACH MAJOR DECISION MAKER

40. OUR ENGAGEMENT PLAN TIMELINE OBJECTIVE: 1 2 3 4 FGJ Y FGXJSYKDUK

41. NAME OF GROUP: New Support or Skills We Need To Deliver Our Plan F D D G D D D D F B F F FGHJHM G G G G G G SDG G DFHF V VHJN B FGHJHM G G G G G G G

42. NEXT STEPS