*Warning this is a long blog post – I’m not apologising for it’s length, I’m just giving you the heads up.*


Even writing this blog I feel myself shaking.

Fear reaches peak as I wonder if my story will lead to even more negative repercussions for me. Anxiety flows through me as I recall events that deeply, deeply affected me. Nearly ending in the loss of my life.

Nearly three years ago, I was thrown into such an unexpected crisis that it directly impacted on me; my family; my business; my shareholders; my reputation; my career and those who were working for me, and with me.

The decisions made on that fateful day, and the months to follow, had such a negative impact they affect me still to this day.

I had so many opportunities to stand up and speak out about this issue (something of which my mentors and advisers supported me in doing so).

But I didn’t speak about it.

Being at all times open, honest, transparent and willing to compromise, I tried my damnedest to resolve this particular issue privately and pleaded with them to avoid a costly litigation battle.

I have always held myself to account. I have always held others to account. I have always stood by my ethics: I believe in working WITH people, not against people.

I escalated to the top of the top of the top. I shared all of my information with the hope the same would be reciprocated. I bought into a resolution process only to learn not all was as it seemed.

Oh, if I had only known then, what I know now…

I am still staying silent, for now.

Just about.

But. I am being pushed to the brink. As every day goes by I find myself in complete despair.

So how does one not advocate for one’s self when people need to be held accountable for their actions?

One does not publicy advocate because it is one of the hardest things in the world to self-advocate.

I know from many of my advocate friends in healthcare, just how hard it can be. I know from recent social media activity, just how horribly advocates have been treated.

And, truthfully, I am scared.

Yet, I am rarely scared.

I don’t shy away from controversial topics. My history in advocacy is a testimony to this.

I have been an advocate nearly all my life – advocating for myself as a child, a patient, a parent, a carer, an employee, a volunteer and an employer. I have always advocated for others – my children, family, friends, staff, colleagues. I have stood on international platforms advocating for all patients, carers, families, service users, health professionals and the public, as a whole.

I am also an activist – I don’t just talk the talk, I walk the walk.

But as time goes by I am getting more and more tired of people (especially those in “positions of power”) praising advocates who sing to their song, yet ignore/isolate those who go up against their agenda.

I have no tolerance for people who treat others badly.

I am sick of watching advocates being vindicated/singled-out/isolated/ignored publicly. I am sick of seeing this being done (almost slyly) by people who have a duty of care to do the complete opposite.

To be clear, in this blog I am not talking about the “big” subjects such as equality, global warming etc.

I am talking about when an individual advocates for a particular topic that has personally concerned/affected them. Examples of these issues could include bullying in the workplace, medical negligence etc.

Even more specifically, I am talking about advocacy in the healthcare arena.

It goes against every ethical principle in healthcare, to vindicate an advocate for others, who then self-advocates for themselves. Or vice versa.

Example in Practice 1: Health Professional Advocate + Self Advocate

A nurse advocates for a patient who is being treated badly by a doctor. Nurse is praised for advocating for the patient. The nurse advocates for herself, who is being treated badly by a doctor. Nurse is vindicated/isolated/ignored for advocating for herself. (E.G. Bullying in the Workplace)

Example in Practice 2: Healthcare Advocate + Self Advocate

A healthcare advocate stands up publicly for other patients who use certain health services. The healthcare advocate is praised publicly for standing up for others. The healthcare advocate stands up publicly for himself who works with/in/for health services. The healthcare advocate is vindicated/isolated/ignored for standing up against health services. (E.G. High Profile (Often Paid) Patient Advocates / Charities)

Example in Practice 3: Self Advocate + Public Advocate

A member of the public stands up publicly for themselves in relation to how they were medically mistreated by a specific health programme. The advocate is praised for their bravery. The advocate then speaks up publicly for others who were/could be medically mistreated by that specific health programme. The advocate is vindicated/isolated/ignored for standing up for safer practice. (E.G. High Profile Cases – e.g. Narcolepsy caused by Pandemrix Vaccine or Cervical Check Scandal)

The scenarios may differ. The genders may differ.  The industry may differ. But one thing is for sure – the feeling that that self-advocate has, does not ever differ.

I know (from personal experience) that it can take a serious amount of courage for a person to stand up for themselves, be it publicly or privately.

Often an advocate may feel they cannot speak up and out for themselves – and so they stay silent:

  1. The person may be too scared to tell anyone about the problem, for fear of the problem getting worse
  2. The person may be being bullied/victimised by the person they are supposed to report to
  3. The person may feel they have to “suck it up” (sure, it’s part of the job or that’s how we’ve always done things)
  4. The person may feel they are the problem (as implied by an employer/public/professionals)
  5. The person may want to progress their career: feel it may be career suicide to “stir it up”
  6. The person may fear funds will be stopped in their organisation/charity
  7. The person may not know how/who to escalate the problem to
  8. The person may not recognise they are being bullied (workplace mobbing is an example here)
  9. The person may be an extreme introvert and not be able to talk to anyone
  10. The person may not trust anyone (due to how they were treated)
  11. The person may live in hope that it will “sort itself out”.
  12. The person may not want to upset colleagues, let them down or make them feel they have to “choose sides”
  13. The person may be afraid of any negative repercussions
  14. The person may feel the public will not understand the topic enough/think it’s not important
  15. The person may not be healthy enough to advocate
  16. The person may feel they will not receive the care they need (medically)
  17. The person may feel they are not (legally) allowed to advocate publicly

The list goes on.

Furthermore, the advocate may feel they will not be supported by anyone – so what’s the point? Related healthcare organisations, NGO’s, charities or individual colleagues/staff may actually want to publicly support the advocate, but because they are in fear of potential negative repercussions for themselves or their organisations – they don’t.

Even other healthcare advocates may not show their support.

And the advocate knows this.

This in itself is wrong – but it is understandable too why this may be the case – especially in a close knit healthcare network where strategic relationships are the deal breakers.

Taking all of these complexities into account, it is obvious to see that when an advocate speaks up for themselves it is a seriously brave move.

Advocacy is the act of pleading or arguing in favor of something, such as a cause, idea, or policy.  In essence, advocacy is actively supporting something important to a person. (1)

Across the world, health organisations say they support advocacy.

But do they really?

Case Study Example: 

A senior manager has a specific role in the promotion of a specific health programme. A member of the public contacts this manager raising concerns they have of the programme, based on personal experience. The manager decides to meet with them and/or send links to “evidence based” materials to “reassure” them. The manager may ask the individual to raise the issue as a complaint.

This goes on for a number of weeks/months/years (yes, seriously – years).

The individual soon realises that the manager does not have an open-mind to the idea and/or information is being held back on purpose. The individual is continually frustrated/concerned and eventually decides to speak publicly about the topic, concerned that there is a patient safety issue. Immediately, the manager feels threatened. All the work they have done could be unravelled – especially if the public buy into the advocates theory and/or evidence.

What does the manager do?

  1. Do they go straight to their communications/legal department for a plan on how to respond?
  2. Do they use the “wait and see” approach – how much reach does this topic get/how many followers does the advocate have? Has the media picked up on it?
  3. If they personally respond do they respond in a defensive, passive aggressive or open-minded manner? Do they twist words and insinuate blame on the individual?
  4. If they don’t personally respond do they send text/online messages to colleagues letting them know “their side” of the story (bias)? Do they ask other “collaborators/insiders/overarching company” to respond online but “be careful”- i.e. protection in numbers/group mobbing?
  5. If they don’t respond, how long do they ignore for?

The manager often takes what is said as a personal attack. Their agenda/belief in the programme is being directly threatened, and so may think the advocate is “out to get them”. The manager may worry about their job – what if they do not meet their targets because somebody has potentially devalued the programme? In this instance, the managers response to the advocate is usually defensive, dismissive, passive aggressive – or downright aggressive.

This leaves the advocate, not only frustrated and isolated – it can also leave them extremely vulnerable to backlash.

We have seen people in power not only completely dismiss concerns, but actually publicly name call.

Remember, the advocate is only actively supporting something that is important to them (and/or a group they are advocating on behalf of).

Not someone. It is not a personal attack.

Solution?

If the manager really wanted their health programme to work, while ensuring it was safe for patients then, by default, listening and acting on said concerns is not only the right thing to do, but the only way to do it.

If the manager really cared about patient safety, then they should investigate the issues in a completely open minded manner and instigate research/focus groups/clinical trials to validate if these concerns are/are not valid. Or even better – hire an external person, with explicit consent from the advocate, to perform a review to remove any personal reporting bias. Furthermore, they should find out why the advocate personally feels so strong about this particular issue. In taking this approach, not only would it open conversations, it could potentially dissipate tensions and provide an opportunity to learn.

If the concerns are valid, then the programme can change for the better.

If the concerns are not valid then the advocate can feel reassured.

Win Win.

The above is only an example, but simply change the job titles and topics and it can be easy to see how relevant this scenario could be to so many areas e.g. workplace bullying etc.

There is a very simple solution to working with advocates – have an open mind, listen to their concerns, evaluate their concerns, find out their overall objective and work with them to learn and better the cause. Ask them to join your team.

Most of all understand, it is one of the bravest things to do to stand up for one’s self.

Most advocates are not negative – they normally only go public out of sheer frustration from 1) not being able to get in touch with the people they want to raise the concern with and/or 2) not being allowed to engage properly with the people they’ve raised concerns with and/or 3) being listened to but no solutions/clarity/answers forthcoming.

At the moment I really have nothing to lose by sharing my story. I’ve lost it all already.

(Well actually, truthfully I kind of do have things to lose – organisations may stop asking me to speak at events or I may not be seen as an ideal candidate for jobs I applied for or people I’ve worked with may stop engaging with me publicly or decisions may be made by people in power to make my situation worse.)

These are risks I have been weighing up for a long time. Of course, I will know if this blog leads to any of the above happening. I may or may not call people out on it – but I definitely will know.

Right now, I know, I just need to make the decision to speak up or shut up.

I’m not afraid of the public eye – I am afraid of bullies.

I need to advocate for me, I know that.

Especially when I know those that did wrong, not only denied – but worse: lied. That failed processes were the causation of problems which followed. Or that someone else’s agenda purposefully prevented proactive discussions which could have stopped the inevitable.

Personal bias overriding public buy-in.

I need to advocate for me especially when I know that no workable solutions were offered, even when the most practical and reasonable of solutions were presented. Or to find those who preached engagement, did not practice it. Or when admissions of failures were made, and recommendations were not implemented.

I need to advocate for me especially when my name and reputation is darkened by unfounded insinuations.

SO what has stopped me speaking up until now, three years after the fact?

  • I knew there were people on the inside who believed in what I was doing. They were advocating quietly for me on the inside and I wanted to dual-protect those people. I knew they felt they had to stand by their clan for fear of personal repercussions.
  • I believe in working with, and not against, people – name and shame is not my game.

But I cannot think about other people anymore. I need to put me and my family first.

My reasons for sharing this article?

  1. I am advocating for other advocates – I am tired of hypocrisy and double standards in our health system.
  2. I need to stand by my values – I need to speak up for myself, or else I am not an advocate, nor an activist.

And lastly, I am calling you, yes you, to action.

Don’t be a bystander.

Stick to your ethics.

Do you or don’t you support genuine advocates?

You do not have to necessarily support the topic the advocate is raising.

But at least…

  • Acknowledge the strength it took for that person to speak up and speak out.
  • Acknowledge the pain, hurt or fear that advocate may be feeling.
  • Acknowledge that, more often than not, the advocate did not make the decision to speak publicly lightly.
  • Acknowledge that the advocate can more than likely back up what they’re saying with facts and evidence.
  • Acknowledge that the advocate may come across as angry/emotional  – this is usually out of sheer frustration.
  • Acknowledge that the advocate is often taking a huge risk by speaking out.
  • Acknowledge that the advocate is not just an “advocate”.

Advocates are people.

People who value themselves enough to fight for what they believe is right.

People who are willing to fight for answers, truth, clarity and resolution.

All I ask is that you try to be kind.

Ask yourself the question: 

“What would you do personally if you were in their shoes?”

And to those in positions of power:

“What would you do personally if you knew what you knew?”

 

 


References

  1. The Value of Advocacy, 6/08/2012 Link: https://institute.uschamber.com/the-value-of-advocacy/