Thank you so much. This has been so helpful. I have had an illness for 12 years and have never really left a doctors appointment feeling really “heard”
I had one appointment on my own and that made me realize that I really need someone else with me or I'll just get really anxious and start agreeing to anything so I can leave. Which is not good when you're trying to get heart problems delt with.
They're great in certain circumstances. Hope you're doing okay. My planner is actually fairly clear over the next few weeks - so if you'd like to chat I'd be excited to! xx
Thank you Hannah for sharing your tips. I have written (through letters)to you before which you have kindly responded to. Forgive me for not continuing to keep in touch. Since then, my children have presented themselves with medical issues and my husband and I have had to do quite a lot of advocating. It has been very important (even life saving for us to do so). I will look into PALs.
Fab video, I am the same as u and do all tha same and my specialist all find it much easier I take a medical folder and can put my hands on things faster than them. Oh i wish I could get someone to alow sub cut fluid but my cardiologist don't feel comfortable as he dont know much about boys and knows i have an nj, so he is trying to get me into a London specialist for pots and eds. I haven't asked my gastro..... but ill probably get do it through yr nj tube, even though yr feeds run for 10-12 hours of the day. They really not good with a few of my conditions but least my cardiologist is getting help outside the NHS as getting me under a London specialist and then he will be liaise with him for future questions i think... I got to say its brilliant how u carried on with yr bag farts 😁. Made me giggle because I'm waiting for my bag and I know i will probably get loads of them. Good on u leaving them in and showing these conditions and medical adds and things we need to help us get through a day, also the things that come with them.. its all natural and u cant control it. X
Thank you so much. This has been so helpful. I have had an illness for 12 years and have never really left a doctors appointment feeling really “heard”
I had one appointment on my own and that made me realize that I really need someone else with me or I'll just get really anxious and start agreeing to anything so I can leave. Which is not good when you're trying to get heart problems delt with.
This was my issue! I hope your appointments will be more helpful next time. Sending good vibes
As someone with cognitive difficulties, the points you made about voice memos & asking for things to be writing down are en pointe 👌
And I had not heard of something like PALs before either!
Good job Hannah. you must always advocate for yourself even if you dont have a chronic illness or condition
Thank you so much for making this video Hannah, it's very helpful :)
i always tell a new doctor they are on trial until we find out if they will work for me. since in fact they do work for you. you pay them
great tips, thanks!
Great video Hannah! I’ve always been too scared to get into contact with PALS, so I would love a video on that!
They're great in certain circumstances. Hope you're doing okay. My planner is actually fairly clear over the next few weeks - so if you'd like to chat I'd be excited to! xx
Thank you Hannah for sharing your tips. I have written (through letters)to you before which you have kindly responded to. Forgive me for not continuing to keep in touch. Since then, my children have presented themselves with medical issues and my husband and I have had to do quite a lot of advocating. It has been very important (even life saving for us to do so). I will look into PALs.
Fab video, I am the same as u and do all tha same and my specialist all find it much easier I take a medical folder and can put my hands on things faster than them.
Oh i wish I could get someone to alow sub cut fluid but my cardiologist don't feel comfortable as he dont know much about boys and knows i have an nj, so he is trying to get me into a London specialist for pots and eds. I haven't asked my gastro..... but ill probably get do it through yr nj tube, even though yr feeds run for 10-12 hours of the day. They really not good with a few of my conditions but least my cardiologist is getting help outside the NHS as getting me under a London specialist and then he will be liaise with him for future questions i think...
I got to say its brilliant how u carried on with yr bag farts 😁. Made me giggle because I'm waiting for my bag and I know i will probably get loads of them. Good on u leaving them in and showing these conditions and medical adds and things we need to help us get through a day, also the things that come with them.. its all natural and u cant control it. X