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Five practical ways women of colour can advocate for better healthcare

From keeping a paper trail to requesting a second opinion, these are some of the steps you can take to make sure your concerns are addressed.

25 Jan 2022

Having a legitimate health concern dismissed by healthcare professionals is not only frustrating, but it can be invalidating and incredibly dangerous. Unfortunately, this is often the experience of women of colour in the UK today. A 2020 report by the House of Commons and House of Lords found that 78% of Black women did not feel like their health was equally protected by the NHS, compared to that of their white counterparts. This is further evidenced by the fact that Black women in the UK are four times more likely to die during pregnancy and childbirth than white women.

As someone who had my symptoms disregarded by my GP, it wasn’t until I insisted on being referred to a specialist for further investigation that they discovered that I had an 11cm cyst on my ovaries that would require surgery. In the current climate of having to battle to get an appointment with your GP, it is imperative that when you are seen by healthcare professionals, you’re confident that your concerns are being adequately addressed. Here are five practical ways you can advocate for adequate and timely healthcare for yourself.

Document your symptoms 

Keep detailed records of all symptoms and changes to your body, no matter how minor or seemingly unrelated, these may later help to inform your diagnosis. Include details like when your symptoms began, duration of symptoms, dates and frequency of symptoms as well as any activities that exacerbate your symptoms. Be as specific and descriptive as possible, highlighting how it impacts your daily life. A detailed and well documented list of symptoms will be difficult to dismiss.  

Speak up

When reporting your symptoms to your doctor or healthcare professional, describe how your symptoms manifest at their worst. If you typically struggle to advocate for yourself, bring a trusted friend or family member for support. During your appointment, ask your doctor or health professional to repeat your symptoms back to you so you can confirm that they have captured the full scope of your symptoms. Correct them where necessary, remembering to take your time and ask questions. If you have someone accompanying you, ask them to take notes, otherwise pause to take notes yourself. The Five X More campaign has great advice around this specifically for pregnant Black people. 

Ask your GP what your possible diagnoses are and which tests, scans or investigations would be necessary to confirm or rule out each possibility. If you feel that you could be better served by a specialist in the field, ask for a referral to a specialist. Before leaving your appointment, ask for timelines for when next steps should be completed – this will be vital to ensure that your case is dealt with in a timely manner.

Keep a paper-trail of appointments and correspondence 

Ensure that you keep an up-to-date record of the progress on your case. Save a summary of what was discussed at each appointment on your phone so it’s easily accessible and note the estimated date for next steps in your calendar. When the timelines that have been communicated to you are exceeded, call or email the relevant departments for an update. Where possible, communicate via email as a paper-trail will be useful evidence should you need to raise a formal complaint or take legal action.

Request a second opinion

Once relevant investigations have been carried out, conduct your own research into the diagnosis offered. The NHS website is a great place to get an overview of medical conditions, their symptoms and treatment options. There may be online communities where people with your diagnosis share their personal experiences and offer support. These may be useful in helping you determine which treatment option best suits you. You can also speak to healthcare professionals within your community for further information regarding your diagnosis.  This will enable you to ask informed questions and identify whether the diagnosis lines up with your symptoms. If you are unhappy with the diagnosis or treatment options offered, you can request a second opinion. While you do not have a legal right to a second opinion, it is rare for a doctor to refuse one. 

Requests for second opinions are usually processed by GPs however if your GP refuses your request, you have the option to change your GP. In addition, you have the right to access your medical records therefore you can request all scans, tests and investigations up until that point and forward them to a private doctor for review.

Raise a formal complaint

If the standard of care you are experiencing is not satisfactory, make a complaint in writing to the relevant department or practice outlining your concerns and how they can be addressed. Call the hospital or GP practice and ask how to make a complaint.

You will typically be directed to write a letter to the Patient Advice and Liaison Service (PALS) providing details of your complaint. Your letter should include your name, date of birth, address, and NHS number. Specify the healthcare professional and department your complaint is about and detail everything that has occurred up to that point. Send your letter of complaint as an email to your local PALS service

PALS will give you the option to have them mediate or escalate the matter to a formal complaints procedure. If you choose to escalate further, you will be assigned with an independent case handler who will investigate your concerns, arrange a local resolution meeting with relevant parties and report the findings of their investigation back to you.

Raising a complaint with PALS or escalating to the formal complaints procedure does not preclude you from taking further legal action. You have the option to take legal action if you’ve suffered a detriment as a result of negligent or substandard care. Although some of these steps may seem drastic, remember that your health concerns can be life or death, so fight to get the standard of treatment you deserve.