Self advocacy, dealing with pre-existing conditions and variations in cancer care - a place to share your experiences and support one another

This is an important topic as self advocacy is hard, really hard, for most of us.  We're all conscious that Doctors are busy; we don't want to ask “stupid questions; we're scared to admit when we don't understand something; some stuff is just really embarrassing to talk about; some medical staff can be quite intimidating.   Somehow though, we have to get over these fears and concerns and remember that WE are the most important people in this situation.

My top tips, even though at times I have to push myself to do this:

• Write a list of questions beforehand, and tick them off in the discussion
• Ask when you don't understand something, and ask again until you do understand 
• Ask “why” - it's a powerful word to gain better understanding 
• Repeat what you're being told in your own words to check you understood 
• Make notes, and don't be afraid to say “hang on, slow down” to make sure you capture everything
• Call your medical team when you have a concern and be politely insistent to speak to the right person
• And if this is still difficult, bring a friend or family member with you and ask them to support you actively in the discussion 

It's great that Macmillan are encouraging self advocacy and bringing this topic for discussion. 

Hello Steph (Steph - Macmillan) 

Yes - I have had many delays in my treatment. Personal advice, anyone you come into contact with on your journey, CNS, consultant, get their name, e-mail address and telephone number. You never know when you might need it!

Always be polite but firm and remind them you are ill - you may have anxiety and you are easily available to take any cancellation that would bring forward your next appointment.

A "Thank you" and a box of chocolates can get you a long way. .

It is hard and if you are on the diagnostic path remind the staff of the cancer pathway time line.

PALS (PASS in Scotland) - Patient Advice and Liaison Service are always there to help.

My CNS said "Brian, he who shouts in the NHS gets" - I did laugh and shouted at her and got what I needed but we were having a laugh at that point.

I wish you all the best with your personal journey.

Best wishes - Brian.