Advocacy toolkit for DPOs

Advocacy Toolkit To guide you through the steps needed to develop your own strategies, tailored to your own circumstances

Developped by IF – International Federation for Spina Bifida & Hydrocephalus. 2011

Forward Introduction About this Toolkit Good to Know Some Facts Policy Context

Elaborating an Advocacy Strategy Define the Issue Do your Research, Get Informed Set your Goals and Objectives Identify your Target Audience Establish your Key Messages Gather your Allies, Build your Network Develop an Action Plan Engage Media Interest Monitor your Actions, Evaluate your Efforts

How to … …Lobby …Write …Communicate

“There is always time to make right what is wrong” Susan Griffin

Lack of awareness about prevention of Neural Tube Defects, limited access to inclusive healthcare, social and professional exclusion and lack or non-existence of comprehensive follow up throughout life stages are some main issues about Spina Bifida and/or Hydrocephalus (SB&H) in many countries.

Disabled people organisation of people with SB&H can become active in improving the conditions of life of people with SB&H by implementing a comprehensive and integrated advices strategy.

Advocacy is most likely to be successful when seemingly diverse interest groups, people with SB&H and parents organisations band together to circulate common messages and call for unified action.

By combining these voices, comprehensive and integrated action can make a real difference. There is power in numbers.

This handbook shows the way forward to an advocacy strategy.

“Never be afraid to raise your voice for honesty and truth and compassion against injustice and lying and greed. If people all over the world...would do this, it would change the earth.�

William Faulkner

“Change comes from small initiatives which work, initiatives which, initiated, become the fashion. We cannot wait for great visions from great people, for they are in short supply at the end of history. It is up to us to light our own small fires in the darkness�

Charles Handy

About this Toolkit

This toolkit has been created to help disabled people organizations of people with Spina Bifida and Hydrocephalus to advocate for their rights. It will equip organizations with the skills and knowledge to get governments and decision makers to take this problem in more consideration and push them to take action. Inside there are useful information about SB&H and a step-by-step guide to building an effective advocacy campaign.

What is Public Policy?

Public policy can be defined as a system of laws, regulatory measures, courses of action (and inaction), and funding priorities concerning a given topic chosen and promoted by public authorities. Public policies are established by organizations and political units, such as boards of supervisors, city councils, municipalities, country legislature and the European Commission. They can be documented and enacted through a local ordinance, a law, regulation, executive order, or court ruling.

Lobbying and Advocacy: Difference?

There are complex definitions of lobbying and advocacy however the key difference is that lobbying entails support or opposition to specific legislation at the federal, national, or local level, while advocacy does not specify a legislative proposal.

Lobbying

Advocacy

Writing to your elected official to ask him/her to vote in favor of a specific law.

Inviting elected officials to participate in a community forum to discuss a specific problem.

Communicating your position supporting or opposing a proposed vote initiative to a member of the general public.

Developing a publication that explains specific problems and developing general recommendations for policy makers, communities and schools.

Engaging a lobbyist, public relations firm, or other individual or organisation to undertake the activities listed above in support of a specific bill on your behalf.

Encouraging the community to call your organisation for more information about some specific topics.

Inviting your elected official to visit your organisation or have a chat with people with SP &H

Good to Know

Policy Decisions Policy decisions affect our lives, the lives of our children and families every day.

From focusing on specific issues to increasing or limiting access to health care services, public policies can help or hinder our health and well-being.

Advocacy is critical to guarantee that the public policies passed in our cities and counties positively impact our lives.

What is Hydrocephalus?

Spina bifida is a neural tube birth defect (NTD) which occurs within the first four weeks of pregnancy. The spinal column fails to develop properly resulting in varying degrees of permanent damage to the spinal cord and nervous system

Hydrocephalus is a condition characterised by excessive accumulation of cerebrospinal fluid in the brain. The excessive accumulation of CSF results in an abnormal dilation of the spaces in the brain called ventricles

Lack of systematic preconception care is a barrier to prevent Neural Tube Defects in the EU

Given the rights circumstances, people with SB&H can live fulfilling, independent lives equal to others.

 The total prevalence of NTD in Europe between 2004 and 2008 was 0.96 per 1.000 births.  Over 4.500 pregnancies are affected by NTD every year in Europe.  Up to 70% of NTDs can be avoided by adequate folate levels. All women should be advised to take a dose of 0,4 mg of Folic Acid daily, starting 2 months before the pregnancy and for the fist 3 months following conception.

Key message: Governments across Europe should implement the WHO standard on prevention of NTDs and systematically ensure that all women, whether they are planning a pregnancy or not, receive preconception care.

Margo Whitford

 Spina Bifida cannot be cured, but thanks to timely medical interventions many people with SB live into old age and have a good quality of life. Long term care is often necessary an lifelong follow-up is required.  Hydrocephalus is treated in most cases with a shunt placed in the brain and treatment requires a medical, psychological and social follow. Constant medical care ensure a good quality of life to people affected with these conditions.

Key message: People with SB have the rights to receive proper healthcare in order to enjoy fulfilling lives in the society.

Some Facts

What is Spina Bifida?

 United Nations Convention on the Rights of Persons with Disabilities It aims to promote, protect and ensure the full and equal enjoyment of all human rights and fundamental freedoms by all persons with disabilities, and to promote respect for their inherent dignity. www

 World report on disability The first ever World report on disability, produced jointly by WHO and the World Bank. This report "must have” advocates for people with disabilities and their families. www

 WHO resolution on Birth Defects The resolution was adopted to redress the limited focus to date on preventing and managing birth defects including Spina Bifida. he resolution calls on Member States to prevent birth defects wherever possible, implement screening programmes, and provide ongoing support and care to children with birth defects and their families. www

 The European Disability Strategy 2010-2020 This is a comprehensive framework committing the European Commission to empowerment of people with disabilities to enjoy their full rights, and to removing everyday barriers in life. Priority areas: 1. Accessibility 2. Participation in daily life 3. Equality and fighting discrimination 4. Access to Employment 5. Education and lifelong learning 6. Social protection and inclusion 7. Health 8. Promote these rights in external policies 9. Involving citizens www

Policy Context

There are important international frameworks and policies that reinforce and affect the success of your advocacy work. The more you understand about the context you’re acting within, the better prepared and effective you’ll be to fight for our cause.

Elaborating an Advocacy Strategy 1.

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Define the Issue Do your Research, Get Informed Set your Goals and Objectives Identify your Target Audience Establish your Key Messages Gather your Allies, Build your Network Develop an Action Plan Engage Media Interest Monitor your Actions, Evaluate your Efforts

Monitor your Actions, Evaluate your Efforts

Define the Issue

Do your Research, Get Informed

Engage Media Interest

Set your Goals and Objectives

Develop an Action Plan

Gather your Allies, Build your Network

Identify your Target Audience

Establish your Key Messages Picture: Workshop « Making our Network stronger » , Brussels 2011

“Of all the forms of inequality, injustice in health care is the most shocking and inhumane” Martin Luther King

Some of the main issues :  SB/H can be prevented through the promotion of preconception care  People affected with SB/H requires specific medical, psychological and social follow up

 Budget cuts affects people with SB/H or organisations that represents them  Transition schemes from childhood to adulthood are not supported

 Lack of multidisciplinary clinics for children and adults with SB/H

 Aging issues for people with SB/H are not addressed

 Expensive costs of treatment are not covered by governments in some European Countries

 Disparities of healthcare systems between EU countries

 Lack of access to information

Define the Issue…The Problem Tree This activity is best done in a group, but equally you can do it yourself with a pen and paper. This activity will help you break down the issues and identify the root causes and consequences. You might need to do some reading and research in preparation!

Steps: 1. If you are working in groups have no more than 8 people per group.

2. Identify the core problem you are working on e.g. Lack of multidisciplinary clinics for children and adults with SB/H. Different groups could choose different core problems.

Write this on the trunk of your problem tree.

3. Brainstorm a list of causes, e.g. health ministry doesn’t see it as a priority. These are the roots of your tree.

4. Brainstorm a list of consequences of the core problem e.g. people with SB/H has to go to different doctors in different departments. These are the branches of your tree.

5. If you are working in groups it can be very productive to stick the trees up on the wall and discuss each topic and how it relates to the key problem.

6. Find as much as possible information, data and statistic around your problems. This will help you when you talk with people you want to influence.

When you are coming up with your objectives you may find it useful to refer to the causes on your problem tree.

Define the Issue

Advocacy takes time and effort. Having a clear and well-defined problem helps minimize frustration and waste. It is important to get to the heart of the issue. In most cases, defining the problem helps organise the advocacy plan and can also lead to ideas for its solution.

When you meet with your partners or policy makers, you should be prepared for any question and you should be convincing.

Find out the facts about your issue:     

Who does this issue affect? How? And why?

What is the importance of the issue?

How does the issue relate to policy making?

Who is involved?

What needs to change?

Real Life Stories The reality of what it means to live with Spina Bifida and/or Hydrocephalus can influence a wide range of audiences.

Remember that you are competing for attention in order to create support for change. It is often crucial to capture hearts first, then minds.

Real-life stories and your messaging are key ways to achieve this. To support these stories, bring them to life with photographs that meet three golden rules: 1. Focus on people (at the end of the day individuals have SB&H – show them).

2. Engage with the individual (close up and eye contact work best).

3. Impact through emotion (photos need to stand out from the clutter and drive emotional response.

Using Research Using action-oriented and up-to-date research is a crucial way of showing decision-makers and the general public why a campaign is needed. It helps advocates to speak with credibility and confidence, and adds weight to their arguments.  Advocates either use their own research or that of others. WHO’s detailed, independent research on birth defects – for example - is available and easy to use and is backed up by the Organization’s authority.  It is often beneficial to use research to make positive recommendations and proposals, and to cite examples of good practice.  Research produced by your audience, such as a government or health body, will be a particularly powerful way of strengthening your messages and arguments.  Research must be relevant to your cause; if your objectives are to seek changes in the local situation then ensure you have statistics specific to that situation.

Do your Research, Get Informed

One important and decisive thing in advocacy is to know what you are talking about.

SMART= Specific, Measurable, Achievable, Realistic, Time-bound

Advocacy is the process of building strategic communications to educate people about a need and mobilizing them to meet it. This process should be concluded by a change.

You should also consider your available resources and establish focused, achievable objectives.

When setting your mission and objectives, consider the general context:  Opportunities and obstacles  Degree of public awareness and support for change  The specific policies or actions you want to be implemented.

What is a goal?

Your main aim — what your advocacy campaign hopes to attain in the long term.

What is an objective?

The milestones your organisation wants to achieve along the way to help you to reach your goal. Your objectives should be SMART (Specific, Measurable, Actionoriented, Realistic and Time-based).

What are tactics?

Tactics are the activities you carry out to achieve your objectives. Make sure these match your objectives.

You should be able to identify the opportunities and obstacles when planning your strategy and decide for the best actions to achieve your mission and objectives.

If you are aware, for example, that there is a lack of information about Spina Bifida and Hydrocephalus, you may initially need to focus to tackle he common misconceptions and lack of information

“A small group of thoughtful, committed citizen can change the world; indeed it’s the only thing that ever has” Margaret Mead

Set your Goals and Objectives

Set a clear long-term goal and SMART objectives at the beginning of your advocacy work.

Potential decision-makers

Potential Influencers

1. Government (ministries and parliament). Ministers (prime minister, health, finance, education, agriculture…)

2. Donors/funding agencies 3. Private sector employers, for example national and local businessnesses and business associations and multinationals.

4. Community leaders.

5. Implementing NGOs 6. European MEPs 7. Delegates of your country to the EU 8. Attachés of your country to the EU

1. Civil society: formal and informal organizations and groups; NGOs; faithbased groups.

2. Opinion leaders: community and business leaders, authors, activitists, religious leaders, the media.

3. Celebrities and entertainment and sports personalities.

4. Teachers, professors and researchers.

5. Patient and Parent organizations 6. Specialised media 7. Health-care professionals

Keep in mind your goal and objectives, consider the political climate and the opportunities and obstacles you may encounter:  To what extent is the general public aware of SB/H?  Does the government need to be convinced that there is widespread popular support for action?

Or of the political benefits that have been obtained by other countries that have taken action?  Will it be enough to communicate directly with decision-makers? Do you need to communicate with influential individuals and groups, too?  Along with ministries of health, which other ministries can make a difference?  To what extent are physicians and health professionals actively working on SB/H?  What influence does the mass media carry? What are the communications channels most commonly used by your target audience – the Internet, television, radio or print?  Does the private sector play an influential role in the issue?

A key step to reaching your audiences is to understand them.

Consider their motivation and interests and the information needed to persuade them to act.

Ask yourself:  What drives their decision-making? How can your communications help them come to a decision?  How can you help them advance their agenda with yours?

Identify your Target Audience

In advocacy work, the two main audiences:  Decision–makers: Your primary audience. Who are the individuals or groups who can take the decisions you want to be taken?  Influencers: Your secondary audience. Which individuals or groups influence the decision-makers?

You cannot mobilize people unless you ask them to do something.

Once they have been aware of the the problems, people want to know the solutions. Create commitment among people, ask them to become part of the solution.

Focus on one of your objectives and make two lists: - the decision-maker(s) who can make that objective a reality.

- the key influencers on those decisionmakers.

Decision Maker Role Play This activity works best in pairs but if you don't have a partner just imagine each scenario, how you might react to it, what you might say and how the decision maker may respond. This activity will help you to develop the skills necessary to confidently meet with a decision maker and get your message across clearly and concisely.

Steps: 1. Split into pairs 2. Each pair has one of four different scenarios Scenario 1 — You get in a lift with the EC commissioner for health. Advocate for funding for a SP/H care-center in your region.

Scenario 2 — You meet with your MP at a NTD prevention awareness event in your community. Advocate for increased research into SB/H. Scenario 3 — You meet the head policy adviser from the ministry of health during the lunch break at a conference. Challenge him/her on why their ministry does not consider SB/H treatment charges to be fully covered for adults.

Scenario 4 — You met with a famous personality in the supermarket, explain to him/ her the problems of youth with SB/H and try to persuade him/her to join your cause

Identify your Target Audience…

Identifying your target audience is the most crucial part of your advocacy plan. Who do you need to target in order to achieve your objectives?

What will motivate and influence them?

Your Key Message A key message is the most significant element in determining how an audience perceives you and your arguments. It should be:  clear, convincing, brief, consistent  easy to understand and straight;  repeated and reinforced by different people or associations

How to Create your Key Message Invest time and effort in structuring an efficient messages that will convince decision-makers and/or influencers their actions.

Responde to these questions when you create your message: 1. Considering your aims and objectives, what do you want to achieve?

2. Considering your audiences, what will motivate them to act? What benefit will action on SB/H bring them? What attitudes will prevent them from acting?

3. Remember the power of real stories: combine the rational with the emotional in order to appeal to people’s heads and hearts.

4. Don’t be complicated: use simple and brief language 5. Ensure language and tone are consistent with the message and audience 6. Do not use jargon or acronyms.

Ideally, you should have one primary key message and two or three secondary key messages PRIMARY MESSAGE

This is your main message. It should will be:  interesting to all audiences;  the theme that will hold your advocacy campaign together;  simple and direct in order to gain maximum attention.

SECONDARY MESSAGES

These messages should:  support your primary message and explain how it can be achieved;  be brief and unforgettable;  be targeted to the needs, perceptions and preferences of your target audiences  answering the question “what does this have to do with me?”

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Establish your Key Messages

Once you have created a clear goal and a set of objectives and you have defined your target audience, you need to be able to explain to people what you're trying to change!

“United we Stand, Divided we Fall”

Tips for Building an Advocacy Network:  Do not wait for a crisis to build your advocacy network  Involve different people around a single issues

 Engage your board, staff, audiences, donors and anyone else who has shown support for your organization to become part of your network.  Simplify your message. Determine key points when preparing your talking points. Be simple and to the point.

 Working with peer groups on the local and/or national level is a great way to expand your advocacy network.

Collaborate with organizations with same or similar advocacy goals.

Partnerships and Coalitions Partnerships and coalitions are indispensable. They can help spread your messages, provide credibility and help in access to communities.  Unexpected or non-traditional partners such as business people or economists can bring immediate credibility to a coalition.  Civil society plays a role that is distinct from that of governments and the private sector.

It adds human and financial resources to a wide range of issues.  Different partners may have different cultures, expectations and demands; respecting and meeting all of needs can be difficult or even impossible. Find a unifying goal around which all can work, and then motivate each according to their interests. Keep all members informed of progress and remember to say thank you.

Picture Your Network As a group, or on your own, brainstorm all the individuals and organisations who will support your advocacy efforts.

Steps: 1. Split into small groups, each group with a flip chart and marker pens.

2. Draw a picture of yourself in the middle of the paper and then, as with a spider diagram, draw pictures of the different organisations and individuals who could assist you with your advocacy campaign.

Gather your Allies, Build your Network

Create allies with different organisations and people who can bring in their ideas, skills, connections and voice. The larger your network is, the greater the chances of success.

Choose Effective Spokesman

Communication with Decision-Makers

Convincing your audience depends on the messenger as much as the message.  Chose a good communicator – someone who is persuasive.  But eloquence needs to be combined with legitimacy.  Who is best placed to influence your audience? Which individuals or groups do the target audience respect or trust? Which messengers may be unhelpful because they are disliked or distrusted by your target audience?

Direct communication with decisionmakers can be a powerful and costeffective. This may be done through letters, telephone calls, faxes and emails and personal meetings which are the most effective way to communicate.

Don’t forget to have some print materials to reinforce your points and the actions during your meeting. Information should be simple and well organised.

CAMPAIGNING IDEAS  Brainstorm with colleagues in order to create effective, creative and innovative campaigning techniques.  Ask supporters to write to your target audiences; provide guidance on content but recommend that letters and e-mails are in their own words.  A chain e-mail requesting support, or asking people to take simple action, and which can be passed on by recipients can reach great audiences.  Design a pro-forma letter to newspapers that can be customized to and used by supporters in different regions.  Write newsletters.  Think to prepare a celebrity short video: a few celebrities each reading a short request which could then be uploaded on the web (you tube.com).  Seek partnerships with newspapers, journalists or documentary film-makers.  Use internet and leaflets to inform people.  Develop case studies of people living with SB/H..

Develop an Action Plan

 Your advocacy plan will deliver your messages to your target audience.  Messages will be delivered many times and in different ways to have an impact  Communication channels to your audience could include face-to-face meetings, letters, events and the media  Your communication methods should be diversified, they usually work better when used together than individually.

Web Sites and Emails The Internet and email give an enormous advantage in:  Accessing information;  Finding, communicating with and mobilizing existing and potential supporters all over the world;  Bringing people to get involved, take action and donate.

The Internet has given everyone the potential to have direct access to an audience:  Anyone with a web site now has direct access to an audience, although this may not necessarily be your target audience.  Social media are used by all ranges of target audience. There are multitude of social media: facebook, twitter, linkedin,...etc. They should be part of your communication tools.

Maximizing Opportunities Make the most of opportunities to work with your government, health professionals, business leaders and civil society partners. Consider opportunities such as the to cope with, and take advantage of, evolving and changing situations. launch of United Nations and governmental programmes, international meetings, national and international days, celebrations and holidays. World Spina Bifida Day, World Day of Persons with Disabilities etc.

Sustainability Consider ways to ensure that your strategy has sustainability.  Can you maintain momentum and interest beyond your initial activity?  If you achieve your objectives, how will you maintain momentum?  Think and plan beyond the campaign’s initial achievements so that progress towards your long-term goal continues. Also, remember that your advocacy plan needs to be flexible enough

Dinner at the Annual Conference "What's the next step?" in Dublin in 2010

Develop an Action Plan

 Using a consistent visual style  A common visual style for information products (e.g. brochures and posters) gives a distinctive identity to your campaign  Internet in a very influential tool for advocacy

How to organise a successful event?  Be strategic in your choice of audience, time and venue. Invite the most relevant, inspiring spokesperson. Consider invitations carefully, to ensure you reach those you most need to persuade. Ensure that your venue is comfortable and convenient for your audience.  Develop an accurate agenda.  Share information , like the programme, with stakeholders  Have a realistic date. Give yourself time to organize the event properly, keeping in mind your resources, the logistics, and the need to promote the event to your desired audience.  Consider the benefits of inviting a range of media, or targeted journalists, and do so in good time.  Plan your materials. Do you need printed such as power point presentations, leaflets etc?  Know your audience. Brief yourself on who is likely to attend, and how best to communicate with them.  Stay on message. Ensure all staff and guests, such as external speakers, are briefed and know your message.

European Parliament in Brussels

Develop an Action Plan

 Public events such as meetings, conferences and workshops can be useful  Events need to be well planned, stimulating and informative.

Maximizing oppo rtunities: try to co nnect your initiat event such as th ive with some inte e World Spina B rnational ifida Day on the 25th of October.

How to attract media interest?

A strong news story that attracts journalists must be:  New. Something new or presented in a new way.  Of interest to the audience. Different media outlets have different subjects that they feel will interest their viewers or readers. General news media focuses on “public interest” issues – those that affect people’s lives, or have implications for society.

Make it easy for journalists. They are working under ever increasing time pressures – so if you can provide them with thorough and useful analysis and interesting examples they are more likely to pick up your story.

Presentation of the report “Act against Europe’s most commont birth defects” in the European Parliament in Brussels

Engage Media Interest

 Working with the media is a very important element of successful education and advocacy because it is a cost-effective, powerful way of communicating messages to a target audience.  Advocates can provide the media with well-researched and fascinating stories,  Media coverage can raise awareness and inform the public, persuading and motivating people and add authority to your message.

 Stories that are new, exciting, sensational, unusual, amusing or fun.  Real-life or human-interest stories from normal people.  The possibility to use good pictures.  The involvement of celebrities, politicians, companies, schools.  Links to related organizations or events, such as World Spina Bifida and Hydrocephalus Day on the 25th of October.  Links to most important stories that are already on the news. Journalists are often keen for new angles on a big story

Try to answer to this question when you contact a journalist: “why should people care?”

Featured stories and comments Media coverage is split between news and features. Feature stories may not contain news but need to be current and relevant. Features include:  broadcast documentaries;  articles of 1000 words or more, including photographs, in magazines and supplements;  comment and opinion pieces.

A good Press release should be newsworthy and include:  a punchy, informative headline;  the “pyramid principle”, which means that the most important information is at the top and more general information is lower down – who, what, why, where, when should be in the first paragraph;  a good quote by your most senior spokesperson;  your contact details.

Video news releases containing broadcast-quality footage can be produced for television outlets.

Shirley Keogh awarded the “Life Goes On” award in the category “Special Price”

Engage Media Interest…

Journalists pay attention to:

How to evaluate the process?

Take some time to note useful lessons learnt. Talk about what has or has not worked with your colleagues . Discus about these points:  Are the techniques working? How effective are they?  Are we reaching the target audiences?  Are we still sure that the target audiences, messages and communications channels are the most appropriate for achieving our objectives?

Be prepared to review and revise these crucial parts of your campaign!

How to evaluate the impact Evaluating impact can be extremely difficult and can be more time-consuming than evaluating process.

Nevertheless, evaluation is possible.  Set your goal and decide how you will measure it. For media coverage, you might want to set a goal like “national media coverage” and decide to measure it by counting the number of targeted news outlets that covered your story.  Other ways of measuring impact will depend on the nature of your target audience, and often rely on inside knowledge about who is taking key decisions, when they are doing so and on what basis.  Consider whether there is firm or anecdotal evidence that your target audiences have changed their attitudes or behavior.

Monitor your Actions, Evaluate your Efforts

For many associations, time and resources are limited, which make it difficult to monitor and evaluate advocacy work; but doing so allows you to review whether your work is having an impact and lets you modify your efforts consequently. This can save time and effort in the future and ensure that your work is effective.

“It’s not what you know, it’s who you know” A large part of successful advocacy depends on the relationships advocates develop with decision makers and a face-toface meeting is a great way to start your advocacy activities. Get your points across clearly and come away with a great sense of achievement.

1 Pre-meeting:  Send a letter of invitation to the decision maker, detailing your advocacy goal and requesting a meeting with them. Follow the letter up with a phone call.

2 Preparation for meetings:  Be focused: Choose your main objective and keep it in mind as you develop a simple message for the meeting.

-What you want to achieve.

-Why you want to achieve it, explain the dangers of doing nothing -How you propose to achieve your goal  Be prepared to answer the question “what do you need me to do” -What action you want the decision maker to take. Impress the decision maker with a short briefing paper you prepared to remind them of the points you made in the meeting.

3 During the meeting:  Attitude — be confident and polite.

Keep eye contact, if you can!  Get to the point — use phrases such as “I believe” to show that you assume responsibility for your thoughts.  Tell them who else supports your cause: e.g. other decision makers, other NGOs.  Give the decision maker time to speak, it is important to know their opinions.  Be flexible and listen to any suggestions or alternatives the decision maker may have.

If you don’t know something tell them you don’t know but that you will find out.  If you’re in a group allocate different roles (e.g. note-taker, observer, questioner).  At the end of the meeting restate what you understand the decision maker has said they will do e.g. “Thank you very much for meeting with us today, we’re very glad that you will be able to. . .”

4 After the meeting  Follow up with a thank you letter restating what you understand he/she will do.  Find out the outcome — did they do what they said they would? If not, why not?

Lobby

Practice makes perfect: Role-play what you want to say at the meeting, prepare for possible responses and questions! And remember lobbying can happen anywhere.

There is no set formula for writing to your MP and in fact the more original your letter is, the more likely it is that your MP will pay attention. A very simple structure will ensure that your letter is clear and concise.

We suggest following this 3 step guide:  Introduce yourself.  Set out the problem and why it is important.  Clearly state what action you want them to take and thank them in advance for this.

As with other forms of advocacy, being polite is very important! Writing your own letter in your own words is by far the most effective.

A briefing paper clearly states the issues you are advocating for and gives your opinions on the action needed

write a letter to your MEP

Writing a letter to your MP/MEP is a great way to get your message across. As a constituent your voice matters and your MP/MEP will write back to you. The more MPs/ MEPs hear about an issue from their constituents, the more likely they are to take action.

How should it look like?

Short and concise Snappy and catchy!

What to include in a Briefing Paper: Background: what are the issues, what other policies, frameworks etc support the recommendations.

Evidence: give the facts and figures as well as case studies and examples which support your recommendations.

Your position: give a logical explanation of how the evidence leads to the recommendations. (Make sure you provide answers to potential questions or objections).

State your ‘asks’: SMART recommendations and actions that the decision maker can take.

Contact Details: give the name of your organisation and logo (if you’re part of one), your mission and goals and a contact person with their email/contact details.

…Write a Briefing

To whom it is meant?

Journalists: attached to a story to give them more knowledge.

MPs or decision makers: at the end of an event/meeting.

Anyone who needs to be educated about the issues.

How to write a letter to the editor: 1. Read other letters in the Editor’s section of the paper; get a feel for the kind of things they print.

2. Identify an article that links in to your campaign e.g. concern about the increasing rates of NTDs, or unplanned pregnancies.

3. Use that article as a platform to voice your opinion; the best letters are those that show a strong reaction so don’t be afraid to voice your opinions!

Content: 1. Make sure you include all your contact details.

2. Refer to the previously published letter, a news story or column, including headline and date of publication.

3. Focus on one or two key points, keeping it punchy (it will be edited). Use evidence and be witty!

4. Mention your organisation and gain others support; the more organisations that support your statement the greater impact your letter will have.

5. Don’t make disagreements personal. Graciously offer the counter argument and try to advance the debate so that other readers might join in the 6. discussion in subsequent letters.

7. Respond drawing from personal experiences. Make sure the piece contains your own voice.

8. Timing is critical; make sure that you respond the day you read the article.

9. Get others to proofread the piece for accuracy; if written on behalf of an organisation, get approval!

10. Email the letter, and then follow it up with a phone call to the Letters to the Editor department.

11. They will edit it, so call them to make sure that you get to see the final edit before it is printed.

Write a letter to a newspaper

Letter to the editor: Write a letter in direct response to an article published in the paper.

This is a great way to get your message across to a large number of people. The more reputable the paper you are published in, the greater your impact, but don’t forget, targeting your local media might be more effective if you are lobbying your local MP.

When producing a story you need to decide:  What do you want to achieve?  Who do you want to target?  What is your message?  What would be a good news “hook”?  How to communicate or “sell” the story to the news desk.  How to follow-up and sustain momentum.

Methods of communicating your story  sending a press release, information note or letter to the editor about what you are doing;  letting broadcast media know what you do and that you are happy to give interviews; journalists need good interviewees – and usually need them at very short notice;  issuing invitations to events; arrange a photo opportunity or send in your own photos of events with a covering press release.

Dealing with the media is a symbiotic process. As an advocate on chronic disease, you want to get your news out, while journalists want stories. Developing an understanding of what drives and motivates the media, and what affects their decisions to report a story, is one vital part of effective media relations work – which in turn ensures that you and your concerns are presented in the best possible way

DO

DON’T

 Communicate efficiently and to deadline to retain credibility. Respond positively to media calls.  Get the timing right. Set things up as far in adavance as possible and consider media deadlines when you issue news releases.  Know your media and target them carefully. Who is their audience? What is their agenda? When do they go to print?  Cultivate contacts.  Ensure that you have a list of credible spokespeople armed with the facts and evidence, who are prepared to talk to the media.

 Exaggerate, lie, mislead, overstate your case or speculate. If you do not know or cannot provide the answer, say so.  Issue press releases that are poorly written or lack news value-or your materials may be ignored in the future.  Forget that you are not speaking as an individual if you are representing an organisation.  Ever be unpleasant toa journalist  -negative media coverage can be very damaging.

But if a journalist makes a mistale or misquotes you, tackle the matter sensitively  -unless you think that it is in the interest of a longterm relationship to ignore it.  Expect the media to cover a story just because you offer it.

Communicate your story to the Media

Press releases are a standard and widely used way of issuing news to the media. They are one of the best ways to alert journalists to a story, and to give them enough information to report on it.

• http://www.who.int/chp/advocacy/posters/en/index.html • http://education.gov.uk/childrenandyoungpeople/sen/a0065985/disabilitytoolkit • http://assets.sportanddev.org/downloads/63__disability_rights_toolkit.pdf • http://www.vta.vic.edu.au/TDN/Documents/Disability_toolkit.pdf • http://www.ifglobal.org/en

REFERENCES

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