Advocating for your Health.
Tips on how to be your own health advocate.
“Health is wealth”, as the saying goes and when your health is not right, you are not feeling yourself, you look to the experts to help you make sense of what is wrong and how they can help you get better. More often than not, it takes several attempts/ appointments for you to even be listened to, let alone get the treatment you need. This is a scenario that Black people, especially Black Women are familiar with and can make an already worrying and anxious situation even more frustrating.
We are going to share some tips below on how you can advocate for your own health and in some way help you take charge of your health/treatment.
Health Advocates take control of their health care experience. You and your doctors make decisions as a team. You speak up with your questions, needs, concerns, and preferences. Webmed.
1) Keep a Symptom Diary.
If you are anything like me, by the time you rock up to a doctors surgery or pick up the phone to call your GP, you have suffered for awhile and have tried all sorts to get better but you have now reached a stage where you have now acknowledged that something is indeed wrong and that none of your self treatment options are working and you need help! Problem is your Doctor/ healthcare provider doesn’t know that and will base their opinions or treatment options on whatever you are most likely presenting with at the appointment, which always happens to fall when you are relatively well and symptom free! To help your doctor/healthcare provider make sense of what is happening, it helps to have a clear picture of sorts, hence a symptom diary would be of help to them and you as well. It shows a pattern.
How did it start?
possible triggers
what makes it better or worse?
what treatments have you had self and prescribed?
It would also be a good idea to know your medical/ surgical history if any and any allergies you might have as this is not always recorded correctly or might be missing from your medical notes. In short: KNOW YOUR BODY.
2) Research.
Are your symptoms unique to you or is there a family history of the same? Ask family members, they may tell you about an aunt or grandmother etc who had the same complaints as you. Some illness are hereditary/genetic and knowing your family history can be of great help, including treatment options that they had if any and at what age(s) their symptoms/illness started and outcomes. This can help speed up treatment options/ referrals.
Treatment options that are out there/ available on the NHS and which ones you prefer, also who are the specialists and where they are located because some illness are rare and not all hospitals have a specialist or a dedicated treatment center. It also helps to know what help in terms of support is out there in the community, like support groups, charities and how you can access them if you need to. They can help you navigate timelines by providing more information like how long it takes to see a doctor , get a referral and test times and what is involved.
3) Ask Questions.
Don’t be afraid to ask questions, for example: about your illness, treatment options, if you do not understand what is being said, during your appointment. If you think you might be overwhelmed and not remember what you need to ask, you can write them done prior to your appointment or take a trusted family member or friend who can ask on your behalf or remind you. If English is not your first language and you need the information in your native language, let the doctor/healthcare provider know.
4) Keep Records.
While we may have one healthcare system, The NHS, the various parts of the system rarely talk to each other, let alone use one central system. Which means your hospital records and what is contained in them varies from one part of the hospital/ specialty to different NHS Trusts and are completely separate to your G.P records. This can be very confusing and frustrating when you finding yourself having to explain, recall and recount your medical history, tests and referrals each time from memory. Keeping a record of all your hospital appointments, times, specialist names, tests, results, basically anything and everything will help ensure that nothing is missed and that you have a clear timeline and record that you can refer to each time.
5) Know when you need a second opinion.
Get a second opinion when you feel like your concerns are not being listened to or that you are not being taken seriously and are being fobbed off. You will know when the doctor or healthcare provider does not seem interested in what you are saying or your experiences and tries to hurry you along or not allow you to ask questions or seems to dismiss your questions. You may not be a medical expert but you are an expert on your own body and if something doesn’t feel right then it probably isn’t.
The medical community has a long way to go when it comes to believing women about their health - Meredith Fineman.
Here is a link to an interesting article and we hope the tips above help. Let us know in the comments.
https://www.shondaland.com/live/body/a19878029/how-to-advocate-for-your-health/
Black Women and Breast Cancer: raising awareness through patient stories
Black women are twice as likely to be diagnosed with advanced breast cancer in comparison to white women.
NHS England and NHS Improvement feature Leicia’s story about breast cancer. Click on the link below to read more about it from their instagram page.
'Black women are twice as likely to be diagnosed with advanced breast cancer in comparison to white women. This #BreastCancerAwarenessMonth and #BlackHistoryMonth, I want to share my story to help raise awareness.' Read Leicia's story in full. https://instagram.com/p/CU7Fyn0jfUo/
The Unofficial Guide to Nursing while BLACK: An Ebook.
Racism in the NHS and other organisations is still an ongoing issue that has been highlighted by the recent black lives matter movement as well as the COVID19 pandemic. It is also great that more and more people are coming out and being vocal about it and calling for change which in my opinion is way overdue. I am also encouraged by the younger generation who are coming up the ranks and calling out incidences of racism and inappropriate behaviour. While all this is good and looks like we are heading in the right direction with regards to stamping out racism within and without the NHS, we must not lose sight of the fact that there are colleagues who are living this sad reality at this moment any given day up and down the country with serious consequences for their lives, livelihoods, health and family life and it can be a very lonely and frustrating place to be in.
The COVID19 pandemic and the Black Lives Matter movement have highlighted the issue of continued racism within the NHS and the wider work community. A number of recent studies have shown that black people still face alot of racism and job discrimination in the United Kingdom(U.K). Indeed a disproportionate number of Black, Asian and Minority Ethnic(BAME) nurses and midwives get referred to the Nursing and Midwifery Council (NMC) by their employers as opposed to their White counterparts, this is according to findings published by the NMC of their - Equality, Diversity and Inclusion research⁴ with the NMC not faring any better in dealing with racism within its organisation and in how it deals with the findings that a disproportionate amount of BAME nurses are referred to them under fitness to practice. It is disheartening and plainly unbelievable that in 2021 we are still talking about race and racism and that as a black nurse, indeed a black worker anywhere, i have to put in three times the effort, triple check my work and be in constant awareness of systems and regulations that in some instances sorely exist to trip me up. It is frankly exhausting but until change comes and I would like to believe that it will come, we still have to be on our guard, double up and prove ourselves over and over again. In this unofficial guide, I aim to pass on some of the gems I have learned and have been passed on over the years in what I call the extreme sport of nursing while black, in the hope that it will help my fellow Black Nurses navigate their workplaces, maybe even the playing field a little bit while we wait for changes to take place within and without our workplaces.
There are brilliant people out there who are voicing their concerns and shaking up the status quo. Silence is no longer an option. We must make our voices heard. Dr Maya Angelou sums it up beautifully in this quote below.
“When you know you are of worth - not asking it but knowing it - you walk into a room with a particular power” - Dr Maya Angelou.