Patient Self-Advocacy: Be Empowered, Ask Questions, Get Better Care

What Is Self-Advocacy?

Self-advocacy is defined as the act of representing yourself; in other words, speaking up for yourself and your interests to ensure your needs are met. Being able to speak up and push back is particularly important when receiving medical care: doctors, nurses and other staff are over-stretched, resources and support are scarce and patients may receive sub-par care under these circumstances. Patients must know what they need and how to get what they need in a way that is non-confrontational but conducive to a good ongoing relationship with care providers.

The history of self-advocacy is linked to civil rights movements and the assistance of disabled people.

Health Is Political

Underfunding of public health services is a political issue and patients (who are taxpayers and get to decide who gets elected) shouldn’t have to suffer because their governments have cut spending. I am not the only one who thinks this: see, for example, this article from Think Global Health entitled ‘Public Health Is Always Political’, this article from the British Medical Association quoting a £850m funding cut in public health medicine between 2015/16 and 2019/20 in the UK, and this 2014 World Health Organization report on Ireland’s health system crisis quoting a 9% fall in public health expenditure between 2008 and 2012, a trend that is still ongoing.

Please read this quote from the 2014 WHO report:

Rates of poverty and deprivation have increased in Ireland since the beginning

of the crisis. Given the causal relationship between poverty and ill health, it is

inevitable that increases in poverty will impact on population health, although

they are not yet evident in most health statistics.

In fact, over the course of the Covid-19 pandemic, I, too, avoided using public health services in a bid to avoid being a “burden” on the system and “save resources” that should only be utilised in fighting the devastating Coronavirus. Many other people have done the same, sometimes neglecting their health and not booking doctor appointments.

Self-Advocacy Examples

Children with Disabilities

I spoke with Teaching Assistant Monika Girbicz who works with children with disabilities. She told me that there are so many challenges associated with her job:

  • on the one side, you may have a child who is on the autistic spectrum, for example, and you are trying to teach them valuable life skills like asking for help;
  • on the other side, you have the parents who may struggle with dealing with their child’s condition or may even be in denial, particularly when the child has high functioning autism.

Some disabled children may understand concepts on a rational level but can’t connect with them on an emotional level. Say, for instance, that an autistic child falls. The child may lay on the floor silent and motionless instead of asking for help. The challenge here for school staff is that the child may have received training and help several times but the message is just not getting through.

Then, there’s the issue that working parents are often so busy that they don’t spend enough time with their child, who will then lack valuable one-on-one attention to help develop self-advocacy skills.

If interested in exploring this topic more, you may find this Washington Post article on children with autism useful.

Self-Advocacy for Cancer Patients

Cancer survivors can really thrive by learning self-advocacy skills to improve their quality of life. The Oncology Nursing Society has plenty of information available online and the National Coalition for Cancer Survivorship has free audio Cancer Survival downloads teaching self-advocacy. Cancer survivors may find it difficult to talk about what they need to improve their quality of life and may need extra support in negotiating with healthcare professionals, their employers and their insurers if applicable to their situation.

This lymphoma patient shared his experience and how he learned to cope with his condition: “To help keep me centered, I chose to focus on four aspects of my life that I could immediately control: nutrition, sleep, exercise, and managing stress”, “I could control my emotional response to my diagnosis.” When he discovered that his cancer treatment was causing him memory loss and problems concentrating he was very proactive with his employer: “I decided to put my insecurities aside, and proactively requested accommodations at work and started seeing an occupational therapist to help me work on strategies to strengthen my cognitive abilities.”

Self-Advocacy and My Experience with the Irish Health System

My mission statement: I want to enjoy long-term good health and receive a good service from health professionals.

I went to have a Covid-19 test. I didn’t realise it at the time but a member of staff at the test centre had entered my home address incorrectly. When the test results got printed and sent through the post (so 20th century!), they were delivered to a house a few doors down from mine. I was lucky that the person who received the letter addressed to me contacted me via Facebook and alerted me of the mistake the test centre made with the address. In any case, this was a breach of patient confidentiality and, on top of that, it is a criminal offence in Ireland to open someone else’s post according to the Communications Regulation (Postal Services) Act 2011.

The person who lives in the same street as me mistakenly opened the letter containing my test results thinking it was addressed to them and they are not to blame because they assumed the letter was for them. They ensured I was reunited with my letter, which is now in my possession.

I used my self-advocacy skills to have the data entry error rectified and have given feedback to make improvements to avoid situations like this from happening to other patients. In case you are wondering, the test came back negative, which was a relief.

Final Thoughts

We all have different personalities and styles when it comes to dealing with medical professionals. I have seen people getting angry, passive, scared, panicky and so on. The key is to be non-confrontational and be able to build a trusting relationship with healthcare staff.

Here are some tips:

  • Check what data is held about you and make sure the healthcare provider has any mistakes rectified; errors in your medical history may result in you receiving the wrong treatment or medication — we check our credit report to rectify any errors that affect our credit score so we might as well have a perfect health score
  • Don’t be afraid to come across as “difficult”: as long as you keep conversations polite you have the right to know how your case is being assessed and what type of care you are getting, and if the level of care is unsatisfactory it is in your interest to have people act on it
  • Be brave and when necessary ask for an investigation or even a refund or reduction of fees if applicable and justified, it is within your patient rights.

Do you have any self-advocacy success stories you would like to share in the comments? Talking of sharing, if you found this article useful please share it with friends and contacts.

Also, would you be interested in an article discussing how mindfulness can help you deal with stressful medical situations such as surgery and other treatments?

Here is a preview:

Self-Advocacy and Mindfulness

Being able to communicate your needs clearly can be made easier if you are in a calm mental state. Through personal experience I found that my mindfulness practice has helped me to avoid panicking and get either defensive with health professionals or fall into a “victim mentality”.

It’s useful to stay in a neutral emotional state — when emotions run high we may end up getting upset, misunderstand what we are being told or get overly defensive.

Of course you will need to choose whatever coping strategy works best for your personal situation (yoga, meditation, running); the end result is to be able to cope well under pressure (and probably while also experiencing pain and anxiety).

You don’t even need to learn fancy techniques. This simple breathing exercise can help you calm down:

  • breathe in for 5 counts, hold for one second, breathe out for 5 counts;

alternatively

  • breathe in for 4 counts, hold for 4 counts, breathe out for 8 counts.

I found that being able to manage your stress levels, keeping your fear and anxiety under control and generally feeling more confident can make a huge difference in your interactions as people respond better to you, from your requests for information to receiving effective care. If you are relatively pleasant to deal with instead of being confrontational you are more likely to have a better outcome.

Author and freelance writer. I work with clients to create engaging communications. Keen forager and on a mission to have a low carbon footprint

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