Open Up the Conversation: Advocating for yourself in the Doctor’s office.

Recorded June 2024

Our volunteer content producer Lauren Buchanan, sat down to chat with Rebecca Brown, Jen Moore, and Sheree Hargreaves to ask them about their experience advocating for a diagnosis and treatment. They touch on the good, the bad, and the downright ugly they’ve experienced on their way - and share their best advice for anyone who is in the same boat as them.

In this video:

Jen Moore: Endometriosis, Adenomyosis, and Medical Gaslighting campaigner @Jen.dometriosis

Sheree Hargreaves: Early Menopause Campaigner and Educator, Founder of Life of Poi @lifeofpoi_

Rebecca Brown: Fibroids Advocate, with The Guidance Suite @theguidancesuite.

Hosted by: Lauren Buchanan: Freja’s Volunteer Content Producer

See a full transcript.

Key takeaways for advocating for yourself in the doctor’s office:

You are the expert

Sometimes the journey to diagnosis and the treatment for a reproductive health condition can be long and you may see many healthcare professionals, although this isn’t always the case. You are an expert in your own body. If something doesn’t feel right, speak to your doctor, or multiple doctors, until you feel you have been heard.

Ask for a second opinion (or third, or fourth, or….)

Having a bad experience with a healthcare professional can be disheartening or in some cases even traumatic. However, there are so many healthcare professionals out there who want to and can help. If you feel you are not being heard, you can ask to speak to someone else. Consider asking to be referred to a gynaecologist if this is something that hasn’t already been discussed.

Ask to see the same doctor every time

If you have a good experience and have found a particular doctor you feel comfortable with, then request to see them again. Building a good relationship can be really beneficial and means not having to repeat yourself.

Research the doctor

In some areas of the UK you can enter your address and read up on doctors in the area [see Useful information and links below]. If you are waiting a long time for an appointment with a healthcare professional, you can ask if they have a cancellation list for you to be added.

Take notes. Lots of notes

Writing everything down clearly before going to the doctor can be really helpful both for you, and your doctor. You can also ask for your medical notes to be printed at every appointment, and if that isn’t possible for whatever reason, you can ask to take a picture of your medical notes or results to read at home later.

There are no stupid questions

Knowledge is power – ask questions, and don’t leave an appointment confused. You can also ask your doctor if you can record the conversation on your phone for your personal use, so you can listen back later if you have a lot of questions. If terms are being used that you don’t understand, ask them to clarify.

Build a support system

Having a support system is crucial. If you don’t have any family or friends you feel you can share your story with, there are many communities and people you can connect with online.

Useful information and links:

(Thank you Rebecca Brown creating this list for us).

Requesting medical records

To request your medical records you need to make a "subject access request".

There is not one standardised way of doing so, so we recommend doing an online search that includes: the name of the hospital you attended and ‘subject access request’ (e.g. Royal London Hospital and subject access request). You can request health records and scans (Ultrasound, MRI, and CT scans, etc.).

For your GP records, you can access these online or contact your GP directly.

Emails - Escalating urgent email requests

If you find that emails are not being replied to in a timely manner, or an email request is particularly urgent, you can cc PALS (Patient Advice Liaison Service) in your emails to the relevant medical professional/department. You can also cc your local MP.

Legal rights to accessing your results

You are within your rights to request your medical records, and legally you can't be denied access to your results.

Finding an NHS /private consultant

You can do an online search for either NHS or private consultants in your borough, this will present you with various directories. In most you can search by specialism.

Useful links