How to be an Effective Advocate for Kidney Patients &

Organ Donor Registration

ADVOCACY 101 For

BC & Yukon Branch Volunteers

ONE STRONG VOICE

Why we care…There is no cure for kidney disease

– Dialysis helps people survive for 5 years

13,000+ British Columbians diagnosed with kidney failure today – More than 3,000 are on dialysis

– 361 on the official waitlist for a transplant– 50% will die before getting a transplant

BC has the longest wait for a kidney transplant in Canada – 4.8 years

– Too many people are dying from kidney failure & we can do something!

Advocate• Government & decision-makers respond to credible individuals

who effectively communicate their issues – You have the power to change minds as well as the direction of policies & legislation.

• If you don’t advocate on behalf of the kidney community, someone else will on behalf of another group– Governments juggle competing interests & concerns constantly. – If they don’t hear from us, then the kidney community’s needs won’t be addressed.

Who should advocate? We all should…

Why?• Patients, families & caregivers vote in every riding in BC

• Kidney patients are engaged in all aspects of health care & know where & how the system can be improved

• Kidney patients have stories that go straight to the heart

• “No decision about me, without me.”

Types of Advocacy• Personal advocacy – is presenting issues that impact

directly on you or your loved one– This advocacy tends to be done by individuals

• Policy or issues advocacy – is presenting the case for change on behalf of a larger group of people– This advocacy tends to require government policy, regulation or

legislation & is usually done by groups or organizations

What is Effective Advocacy?• To be effective, Advocates need:

– ONE STRONG VOICE– TO BE INFORMED BY FACTS– TO SHARE EMOTIONS– TO TELL A PERSONAL STORY– TO ASK FOR ONE THING AT A TIME

Why One Ask?• Without a strong voice making one specific ask,

government tends not to act or move on an issue – They listen to the largest number of people asking for one action– Their response to many voices & many asks will always be “go away until

you all know what you really need”.• Therefore, let’s not give government the easy out!

Know the Election CycleGood time to educate & get our ask supported by all parties.

Congratulate, educate & celebrate if elected group supported our kidney ask.

Make our case, present our plan, ask for support & be a good, patient partner. It will take time to get to yes. Be prepared to wait.

Whenever kidney wins, celebrate & thank who

made it happen!!!

Not a given, but most likely time for success if we have done the ground work.

Good time for getting ideas implemented or into the election platform of all parties for the next round of priorities!

Remember timing is everything!Know when to do nothing….Be non-partisan. Ask all parties for support. No matter who wins, the kidney community must win!

Get started• Confirm our “ask” – work with BC & Yukon Branch team!

• Know our kidney ask, the research & background info

• Identify who to contact & decide whether the time is right

• Build on existing relationships & create new ones• Ask KFOC BC & Yukon staff for advice & help!

– We are here for you!!!

Know your issues

•Research the facts•Frame your story to

illustrate the ask•Understand what

government can do to help

•Talk with BC & Yukon Branch team

Work with others

•Find others with similar experiences that complement the ask

• Identify experts•Ask for help from MLA,

MP, Mayor, Council members

Build relationships

• Get to know people who know people – know the “connectors”

• Ask people in your circle to introduce you to new friends

• Remember to build relationships. You never know who knows who!!!

Everyone needs a planIdentify who you are going to involve in your advocacy activities

Chapter members, other volunteers, family members? Meet with them to discuss the issue, research & confirm a plan to advocate.

Contact the BC & Yukon Branch team to ask advice & help to: Confirm the “ask” & appropriate information/research Develop 3 key consistent messages Use available advocacy tools

Frame the ask using your personal stories Remember elected officials are just like you & me! Know what they need to be successful. Make is easy to understand & say yes (use the K.I.S.S. principle whenever possible!) Make it personal so they can feel why its important Keep it short – remember that the average attention span is far less than 8 seconds!

Frame the ask• Why is the issue, concern or challenge important to the official?

– How does our ask provide the solution? Know this answer by heart…

• Does our ask require change to policy, regulation or legislation?– Ask your BC & Yukon Branch team for advice….be able to answer

• Will you be able to achieve the change(s) required in your community or will the volunteers of the Kidney Foundation need to come together for a province wide campaign?

Develop a strong case• Make your presentation solid & ensure it works for you

• Decide how to highlight your story or stories in support of the kidney ask

• Contact the BC & Yukon Branch team for facts & stats

Always remember why we advocate

Finalize key messagesIdentify 3 key messages…

– Distill all the information into straightforward statements

– Use fact - not fiction!– Be sure KFOC – BC & Yukon Branch is on the same page with you!

• Mixed messages create confusion!

– Be sure every one of your advocacy team understands & is comfortable using the key messages & making the ask

Key messages– Should explain the salient points of your issue & story

– Should each be 25 words or less

– Should be clear, compelling, concise & consistent

– Here’s a quick tip:• Double check if your key messages work by presenting them to someone

with no knowledge of your issue… keep practicing till they work!

Who to contact?Decide who by considering…

– Is this a federal, provincial or municipal issue or matter?• If it is a combination of different government levels, please chat with Branch staff!

– Which elected official can best help you with this matter? • Is it the Minister responsible?

• Your MLA or MP?

• Your Mayor or Councillor?

Are you ready?• When you are ready, your first task is to arrange for

an appointment to meet with your local elected official (MLA, MP, Mayor, Council member)– Introduce yourself & the Kidney Foundation of Canada– Remember, you are a constituent - they will want to meet

you!

Every chance you get…• Build a relationship with your elected official & their team

– Getting a meeting will be easier if you contact them regularly– Send information about Kidney Health Month or Kidney Walks for

example. Provide info or opportunities that build understanding…• Try to connect a few times throughout the year – a minimum of 4 “touches” over a year is

considered best practice in building a relationship• It doesn’t need to be a face to face contact to build a good relationship

– Remember staff have influence & they understand government process better than most of us. They also know people!

• Be friendly, considerate & share information with everyone you meet! You never know who talks to who…..

Before meeting• Ask for a meeting by letter sent in an email or snail mail

– Follow up with a phone call– Briefly outline why you want to meet your local official– Follow-up repeatedly until you get the meeting

• Decide who will attend with you– 3 to 4 people as a maximum & all should have a defined role

• Draft an agenda– Plan for 30 minutes. If it is longer, you’ll have plenty to talk about. Make sure you make the

ask at least once in the first 10 minutes– Also remember to leave time for the official to ask questions– Listen to the questions closely as they provide a clue as to where there might be support as

well as opposition. A meeting is important, so pay close attention!

Preparing for a meeting• If you can, ask for the names of attendees from their

office beforehand & research their interests & experience.– Try to find out if they have a kidney connection already!

• Contact the office one or two days before to confirm the meeting.

• Remember to be on time, but expect to wait a few minutes.

Who should attend?1. Purpose of your meeting is to inform with facts & persuade with stories2. Try to include a representative of KFOC, a health care expert & a patient

or caregiver. This is not mandatory3. People comfortable with these key messages who can frame stories to

support the kidney ask4. People able to meet in advance to practice working together. Identify

who does what & when…5. Most important role: decide who will take notes of follow up items6. Be prepared for anything

Surprise…• After persistent follow up, you finally get a meeting but its with

a staff person. Now what?– Meet them of course! Make our case & provide them with info & materials.– Thank them for meeting with you, but continue to ask to meet with the

elected official.

• A quick tip: Provide any material you want them to read a few days ahead of time so they can be prepared to answer you during the meeting

Congratulations…• The good news is you got a meeting with an elected

official…• You’ve got your 3 key messages, the right group of people, you’re well

prepared & you’re ready!

• The bad news is you only have 1 minute…• to explain who you are, why are you there, what you need & make the

kidney ask!

The power of a slide deck…• A well crafted slide deck can be left to read later

– Keep it brief; build on key messages & be sure to include the “ask” – Include your contact details if more information desired

• FACTS TELL, STORIES SELL…– Use your one minute to share your story & the kidney ask– Don’t fret! Although you may want to practice beforehand …

• It only takes 45 seconds to make a personal connection with your story • And another 15 seconds to make the kidney ask

– Leave the facts to be told in the slide deck

When you have 30 minutes…• Always ask how long you have with the official at the start

• State the kidney ask in your introduction & then repeat at the end • Leave half your time for questions!• If you leave without being asked a question, you have NOT been successful

– So be sure to have one person assigned to watch the time– And DO NOT go off topic or allow yourself to be pulled off topic by anyone!!!

• Ask for advice or suggestions on how to move to next stage

• Ask if more information is needed

Keep in mind…• If you are asked about something that you don’t know the answer to,

ask for clarification & say you will get back with the answer – Credibility relies on being truthful

• Be patient – your meeting is one of more than 24 the elected official or staff will have throughout the day

• Do not leave until you have agreed on clear follow-up requests & timelines. ALWAYS leave info related to our kidney ask

After meeting• Provide any information that was requested right away

• Call or e-mail to thank the elected official & staff for the time

• Follow-up according to timelines agreed to during the meeting

• Track progress & update on efforts to move our “ask” forward

• Let KFOC BC & Yukon Branch staff know how things went!

What NOT to doNever…

– Threaten – Make an appointment to talk to someone in government when

you have an idea, but no research or ask – Complain about government or their lack of attention to kidney

issues – be positive, be polite & be welcomed back– Talk negatively about another charity or disease group– Keep what you learn to yourself

• Tell us what you learned!

Success Checklist• Know the ask, key messages & your story

• Ask for the one “ask”

• Plan for a long term relationship – NO is simply a YES waiting to happen!

• STORIES sell – please share yours!

• Government wins when you give up…so never, ever give up– People with kidney disease need your strong voice!

Be Inspired - SPEAK OUT!

Thank you!We have the information & tools you’ll need to advocate…

By working together, we will make a meaningful difference in the lives of people who face the daily challenge of living with kidney disease.

Karen Philp, Executive DirectorKFOC BC & Yukon Branch

kphilp@kidney.bc.ca