How to become an advocate for KCSN

When a family is faced with a significant health issue like kidney cancer, the focus of their attention is understandably on helping their loved one get better. As they make their way through the system, at every step, people are hopeful their loved ones are receiving the best care, at the right time. But as many of you know from experience, there is much more that can be done beyond hope. One of those things is advocacy.

Advocacy gives individuals a way to make their voices heard and can bring about impactful change or action.

Advocacy is the process of supporting and enabling people to:

  • Express their views and concerns
  • Access information and services
  • Defend and promote their rights and responsibilities
  • Explore choices and options.

 

Advocacy also seeks to ensure that people, especially those who are most vulnerable in society, are able to:

  • Have their voices heard on issues that are important to them
  • Defend and safeguard their rights
  • Have their views and wishes genuinely considered when decisions are being made about their lives.

 

An advocate is someone who provides support when you need it; for example, helping you to access information, or supporting you with funding requests for the drugs you need to treat kidney cancer.

Advocates support people based on their own personal experience. To enable them to carry out this role, they need to be able to:

  • Tell their own personal story in their own words and comfort level
  • Establish and foster a mutually beneficial relationship with those who have the ability to effect change.

Advocacy is important because the alternative, not doing anything, is really no alternative at all; it never leads to change or progress.

Advocacy can make a difference because:

  • Decision-makers react to those credible groups or individuals who most effectively bring their issues to the forefront of the public agenda
  • In the case of advocating to government, they have competing interests and concerns that can only be fully discerned when people make their voices heard

As voters and taxpayers, we all have the ability to effect change.

There are two different kinds of advocacy: personal and issue-based.

Personal advocacy is the typical way one starts to engage. An issue that affects you or a loved one, like kidney cancer, compels you to take action. You’re not looking to change the world; you just want to get help.

Issue-based advocacy evolves when people start to realise they have an opportunity to bring about larger public policy change by advocating for broadly based issues. They not only help themselves, but also help others who perhaps are not able to make their voices heard.

Issue-based advocacy makes the greatest impact on decision-makers and policy.

As with most things in life, preparation is essential in advocacy. You must be able to identify and explain your issues using the tools at your disposal. Effective and successful advocacy has several components:

  • Knowing your issues better than anyone else
    • You need to have a clear understanding of the issues you want to raise with decision-makers. The more focused your issues are, and the fewer of them you have, the more likely you are to be successful
    • Demonstrate you know your issues and the core facts surrounding them, in order to establish credibility
    • Be able to discuss issues in the context of your personal story or experience.  You may want to write out your personal story, if you can, or get help to put it down on paper.  Whether you are a cancer survivor, caregiver, family member or friend, you have a unique story to tell about the issues and challenges faced from your perspective.  Make sure you capture those thoughts and feelings
    • Ideally, if you are advocating to a politician, your examples will incorporate concerns from constituents or reflect their personal interests.
  • Position your issues
    • Being able to position your issues so they fit within the agenda of the person you are advocating to will help draw in their interest and engage them
    • If you’re doing advocacy on behalf of an organisation, such as KCSN, find out what matters to the people you represent – this will help to frame your issues
    • Build alliances with other individuals or groups around common issues and move forward as a united force.
  • Building relationships
    • Make an appointment to visit your local MP and introduce yourself
    • Invite local politicians to community events you may be involved in around your issues
    • Communicate with them constantly about what you are doing
    • Offer to support them in their work by building opportunities for them to get their messages out to constituents, for example, by hosting a town hall meeting on access to medications
    • Offer to provide them with information or other resources that may be of assistance
    • Ask your local MP to provide you with introductions to others in government
    • Go to local events where you know policy influencers will be in attendance.

Initially, you may need to find out who you need to meet with, i.e. your local MP or relevant decision-maker; the issue you face will determine who this will be. Information about your local MP can be found on the British Parliament website.

A face-to-face meeting with a decision-maker can be one of the most effective means to support your advocacy efforts: There is really no substitute for meeting a decision-maker in person. When presented in a clear, compelling and consistent manner, your key messages can go a long way to building a good working relationship and achieving your ‘ask.’  But the real secret to success in advocacy is not giving up: Keep meeting and communicating with your decision-maker until you’ve achieved what you need.

The following are some tips for meeting with decision-makers:

  • Arranging the meeting – by email or telephone to your MP’s constituency office. Introduce yourself and give them a brief summary of what you would like to talk about. Contact them well in advance of when you would like to meet and follow-up with a brief email. Be persistent and follow-up with further emails or telephone calls until you get a meeting
  • Before the meeting – send any relevant materials well in advance of the meeting, and keep it brief! Consider going to these meeting with at least one other person. Advise who you will be bringing to the meeting, and send an agenda, if necessary. Research the people you will be meeting with and contact them just before the meeting to confirm. Be on time!
  • During the first minute of the meeting – try to get down to business by telling the decision-maker who you are, who you represent (KCSN or kidney cancer patients), why you are there, what you need this decision-maker to do for you, and how supporting your issue will be mutually beneficial
  • Your presentation – review the background of the issue and know your core facts. If doing a formal presentation, keep it brief (10-12 slides), build it around 3 key messages, and repeat these messages throughout. Conclude with one ‘ask’, along with solutions, leave enough time for discussion, and keep to point, i.e. don’t go off the subject.
  • In the meeting – leave enough time for the decision-maker to speak, and don’t be afraid to ask questions or seek clarification. Establish clear follows-up with timelines and assign responsibilities.
  • After the meeting – you want to keep your issue moving forward. Call, write or email to thank the decision-maker for meeting with you. Provide any further information when requested. Follow-up shortly after the meeting to track progress. Be persistent!
  • Do not – threaten anyone, go to a meeting with a decision-maker without having information to back-up your ideas/issues/key messages, or make a technical presentation to a person with no background in the area.

As you’re preparing, take the time to craft your personal story. Write it out if you can, or get help to put it down on paper.  Whether you are a cancer survivor, caregiver, family member or friend, you have a unique story to tell about the issues and challenges faced from your perspective.  Make sure you capture those thoughts and feelings.  It will be fundamental to your advocacy activities.

Whether you’re meeting with a decision-maker in person or writing them a letter, you should always take a moment to tell them your personal story or experience.  It is what connects you to the listener and humanizes the issues you’re bringing forward.

What is a personal story?

  • A summary of what has happened to you as it relates to the issue at hand.
  • It is your perspective on the issue based on your experience, feelings and attitudes.
  • It is emotional – compelling, but believable.
  • It must demonstrate how the decision-maker’s action/inaction/policy has directly impacted your life.
  • It fuels the logic of your key messages and ‘ask’.
  • Take the time to write out your personal story – it’s essential because we all forget things and it’s a work in progress that you’ll always be adding to.
  • Conclude with why things need to change and bridge to the ‘ask’ that you have

There are 2 options: You either tell a summary of your entire story as it pertains to the issue, or you tell a portion of your story that focuses on one or two aspects of the issue.

Essential elements

  • Name, age, where you live
  • Occupation (former occupation) and family
  • Timing and circumstances surrounding your issue
  • Challenges faced as a result of the impact of the issue on your life
  • What you believe decision-makers need to do to help you and others
  • At every point, how you felt

Sharing your story with the media – newspapers, radio, television and the Internet – can be a powerful way to advocate for change or action on an issue. It is very important to remember that proactively speaking to the media should be only considered as a last resort in your advocacy efforts. Communicating through the media takes your issue from being private to being public and can educate a broader audience on the issue. This can put pressure on the government, who care greatly what their constituents believe.

For this reason, engaging media is a serious step that should only be considered after exhausting all other avenues of advocacy and consulting with KCSN.

If you see a story in the media – perhaps in the paper or on the evening news – that you would like to respond to, a letter to the editor or providing viewer feedback is the best way to do this. Most often media outlets have contact information on their website, and welcome the opinions of their readers and viewers, especially if they have a connection to the issue. Your response may appear in the public domain, so remember to consult with KCSN to help ensure your submission is inline with the organisation’s advocacy efforts.

Drafting your response

  • Keep your response brief (150 to 200 words), but make it powerful so it will stand out and grab the editor’s attention
  • Outline why you are an “expert” on the issue
  • Your response to media should address the issue directly, be straight to the point, include your key messages, and be supported by facts
  • Write the way you talk and speak from the heart. Don’t try to impress the editor with big words and encyclopaedic knowledge
  • Don’t get personal. You can disagree with an opinion or action, but personal attacks distract from the point you are trying to make
  • Write the same day or the day after a story appears – the more current the topic, the more interest it will attract
  • Send a letter whenever you have an opinion. You can send two letters on two subjects on the same day
  • If you are sending your letter by e-mail, put it in the body of the e-mail, do not attach it. Newspapers might not open attachments
  • Always include your name, address and phone number. Most papers have a policy of phoning to verify authorship prior to printing
  • There’s strength in numbers – try to get others to write on the same topic
  • Also, to increase your chance of being published, read the letters to the editor in your local paper to see what style is most often used.

 

If the media calls you

If you are contacted by the media for an interview, return their call as quickly as possible because journalists work on tight deadlines – not returning the call may result in a missed opportunity to get your key messages out. However, keep in mind speaking to the media can change your issue from a private to a public one and you have the right to decline participating in the interview. If you receive a media interview request, take down the information and agree to call back or arrange a date/time. By postponing the call (even for 30 minutes), you will give yourself time to write down your key messages and be prepared. We encourage you to contact us for guidance with media interviews.

In you initial conversation with the journalist, find out as much you can about the interview, including:

  • What is the journalist’s story angle?
  • Who else is the journalist contacting for the story?
  • Will the interview be live, taped or over the phone?
  • How long will the interview be? What is the preferred time and location?
  • What is the deadline and when will the story run?
  • Any other details like the journalist’s contact information.
  • If the reporter wishes to conduct the interview on the spot, don’t hesitate to say you’d like to collect your thoughts first. Be sure to call back well before his/her deadline.

 

Remember when you are being interviewed you have the right to:

  • Prepare for the interview
  • Accept or refuse an interview request
  • Know how the interview might be used
  • Stay within your area of expertise
  • End the interview after a reasonable time
  • Be treated respectfully.

Social media has become a part of many peoples’ everyday lives, but if you’re still asking yourself, ‘what is social media?’ you’re not alone. The social media world is large, complex and constantly evolving. Examples of social media tools include Facebook, Twitter, and YouTube.

In its simplest form, social media is a shift in how people discover, read and share news and information. By communicating online, everyday people can comment and become connected to information in ways that are not possible through traditional media.

So as a patient, carer, family member or friend of someone with kidney cancer, this means more than ever before you have the opportunity to have a voice, and have it heard by many people. The more contacts you make or followers you attract online can increase the volume of your voice, so the right people hear it.

But as you engage in the online world, remember whatever you post on the Internet lives on forever. Be mindful of this when posting a comment or linking to a video, for example. Always think: Is this something that may come back to hurt you in the future?

How to use Social media for advocacy

Social media is a quick and easy way to connect to people all over Canada, and best of all – it’s free!  You may know people in your community who want to help in your efforts to improve the quality of life of those with kidney cancer.  But by using social media, you can extend your network even further and share information with people beyond your immediate circle of family and friends.

There are multiple social media outlets. Here are a few examples of how various outlets can be used:

Facebook

Facebook is a social networking website where users can add friends, send their friends messages and update their personal profile to notify friends about what is happening in their lives.  Users can join and create groups according to their interests or areas of expertise, upload pictures and videos, and post links to their favourite websites.

What you can do: Join the UK Kidney Cancer Support Network Facebook group and connect with others around the UK with similar goals. Invite your friends to join too. You can also post relevant and interesting articles and videos about kidney cancer so your friends can see them and share with their friends as well.

Twitter

Similar to Facebook, Twitter is a free social networking and micro-blogging service that allows users to send and read messages known as ‘tweets’. Twitter is less personalised and tweets can only be up to 140 characters and, therefore, need to be very brief. Tweets are posted on the user’s profile page and delivered to the user’s subscribers, known as ‘followers’.

What you can do: Sign up for Twitter and you can give real-time recaps of your kidney cancer advocacy efforts. Find out if your local government representatives have Twitter accounts and begin ‘following’ them. This is a great way to get close and learn about some of their interests before you meet with them.

YouTube

YouTube is a video sharing website that allows users to upload and share videos, with their friends and the general public. The content is generated by users and can include movie and television clips, music videos as well as short original videos.

What you can do:  Speak to us about uploading a personal video of your experience with kidney cancer. Remember, before posting a video, double check to make sure it does not include any copyrighted content.

Tips for success with social media

  • Share often. What is new on the Internet can become old very quickly. Be active and keep on top of your social media.
  • Don’t be ashamed to ask for help. Kids, grandchildren, nieces and nephews can be a great resource when it comes to technology. The younger generation has grown up with social media and can help teach you strategies to make it easier than it may appear.
  • Online lives on. The social world is in the public domain and can live online forever. Remember to pause before you post.
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