Advocating for your Health.

“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

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/

September is Gynaecological Awareness Month!

According to a civil service blog on Gov.uk, there are more inequalities in Cancer morbidity and mortality amongst black women, despite equal access to the National health Service(NHS) .

Cervical cancer remains the commonest cancer amongst women under the age of 35 and posses a greater risk of death in Black Women over the age of 65 despite being preventable by upto 80% via screening according to studies done by Dr Ekechi, a London based Obstetrician and Gynaecologist, one on behalf of the Jo Cervical Cancer Trust. She also highlights the fact that deaths from endometrial cancer are highest in Black Women, a statistic also backed by a study by the in the American Journal of Obstetrics and Gynaecology who suggest that this is the case because Black Women are less likely than White Women to receive an early diagnosis!

So why are Black Women more likely to die from cancer? according to a study done by the Department of Obstetrics and Gynaecology at University of Washington, some of the reasons are:

• the inability to get an early diagnosis

• Doctors are more likely to view black patients as medically uncooperative and that diagnosis and treatment decisions are influenced by race.

• Lack of confidence by Black Women in the healthcare system due to difficult episodes and not being believed when they present with symptoms

Below are links to articles and organisations like The Eve Appeal that aim to address these issues and raise awareness about cancer and the black woman.

1)BAME women are let down by the health system – nowhere more so than in gynaecological health: https://www.google.com/amp/s/inews.co.uk/opinion/comment/bame-women-are-let-down-by-the-health-system-nowhere-more-so-than-in-gynaecological-health-288985/amp

2) Breaking Down the Taboos: Lifting the Lid off Cancer in BAME Communities: https://civilservice.blog.gov.uk/2020/10/19/breaking-down-the-taboos-lifting-the-lid-off-cancer-in-bame-communities/

3) Ciara’s Mega Mission: Stopping Cervical Cancer In Black Women: https://www.forbes.com/sites/lipiroy/2021/07/02/ciaras-mega-mission-stopping-cervical-cancer-in-black-women/

4) Gynaecological Cancers: https://eveappeal.org.uk/gynaecological-cancers/

5) One Type of Cancer is Killing Black Women at Record-High Rates: https://obgyn.uw.edu/news/one-type-cancer-killing-black-women-record-high-rates