S.D. Onyango 12/27/22 S.D. Onyango 12/27/22

Research and US: Changing the narrative!

Using Research to Advocate for your Healthcare and Treatment.

Thanks to research, we now know that Black men, women and children and other people of colour are disproportionately affected by diseases such as cancer, high blood pressure, diabetes and women’s health just to name a few in comparison to their white counterparts. Research has laid bare the stark health inequalities that plague our communities, raising much needed awareness and prompting questions as to how these inequalities came about and how the gaps could be bridged if not closed!

For some reason, these pieces and articles of research are wielded out and about by the government and doctors surgeries when there are relevant campaigns that suit their current agendas at that particular time, like a window dressing of sorts or a way to gaslight the already disadvantaged that it is up to them, they need to take more care of their health so as not to end up as part of the statistics that are quoted in the research articles. “Get screened, recognise the signs and symptoms, tell your doctor if you feel that there is something wrong”- we have all had the above and the powers that be, are aware of these statistics and disparities, then why is it still so damned hard to get the treatment that one deserves, especially as a woman, a Black woman?

Let’s use uterine fibroids as an example, according to the NHS website (link at the end), fibroids develop more frequently in women of African-Caribbean descent, but it can takes years for them to access treatment with symptoms that include but are not limited to: heavy and or painful periods, abdominal pain, lower back pain, pain and or discomfort during sex, the increased urge to urinate and constipation. Black women, myself included, who have presented with the above list of symptoms at the G.P are more than often ignored or fobbed off despite research pointing to the high prevalence of uterine fibriods amongst Black women and this has led to prolonged unnecessary suffering with detrimental effects on Black women’s health and wellbeing.

So how do you look after yourself and your health?

Using knowledge and research to advocate for one's health and treatment is definitely a form of self-care, i have come to realise. It may mean that you get labelled as a ‘problem patient’ because of how hard to may have to fight to get the treatment you deserve( we are hopeful that somewhere down the long line, this fighting for appropriate treatment, will no longer be necessary, but until then, be battle ready!).

So gather as well as note down:

all your symptoms, start dates, what makes them worse or better
how many times if any you have sort medical advice and what was said/recommended, what remedies, medication you have tried/used
any family history/ family member who has or had same symptoms
What information/research is out there as pertains to your symptoms especially as a Black man/woman or child
what treatment/management plans are out there/recommended and which ones are specifically/ proven or shown to work for or on Black people

G.P appointments are notoriously short and the planning above helps make those allocated ten minutes count. Take someone with you if you can and most important of all, always ask for a differential diagnosis and management plan, that way you start a conversation around ‘if it is not what i know it is then what else do you think it could be and how do we( you and the doctor) tackle it’?

It is great that there are a lot of articles both research and lived experiences about health inequalities in relation to Black and other minorities as well as specifically ones on Black Women and while much still needs to be done, like increasing diversity in terms of more Black people and women in research trials, we can still use what we currently have to help advocate for our health and treatment and in the process keep the focus on reducing and eventually eliminating all forms of health inequalities.

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/