I have a stroke got Ataxia illostomy bag diabetise EB and few other problems.
When I go to hospital as I did beginning of feb for a broken leg which took 10days to discover was broken,I am treated for the ailments that can be seen,such as being in wheelchair.
When am I and others going to be looked at for the full picture,because medical staff make notes but I don’t think notes are looked at,maybe I’m wrong but my experience says different. Any one else feel as vulnerable as I do in hospital ?
Do you have anyone who can be a patient advocate for you, such as a family member or friend? When your ill and hospitalized, it's difficult to be your own patient advocate and direct your care. If this is the case, yes, you feel and are vulnerable! When my first husband had terminal cancer and was going through some experimental treatment in the hospital, I was his patient advocate, as there's no way he could have done it himself. Just a thought..., ;o) My best to you, as you're dealing with so much health-wise!
rose said:
Do you have anyone who can be a patient advocate for you, such as a family member or friend? When your ill and hospitalized, it's difficult to be your own patient advocate and direct your care. If this is the case, yes, you feel and are vulnerable! When my first husband had terminal cancer and was going through some experimental treatment in the hospital, I was his patient advocate, as there's no way he could have done it himself. Just a thought..., ;o) My best to you, as you're dealing with so much health-wise!
Thankyou for reading and reply. I have to go back hospital on 4th April so I will be prepared.also looking into other ways to help
KimKempy said:
rose said:Do you have anyone who can be a patient advocate for you, such as a family member or friend? When your ill and hospitalized, it’s difficult to be your own patient advocate and direct your care. If this is the case, yes, you feel and are vulnerable! When my first husband had terminal cancer and was going through some experimental treatment in the hospital, I was his patient advocate, as there’s no way he could have done it himself. Just a thought…, ;o) My best to you, as you’re dealing with so much health-wise!
I know exactly how you feel I have cerebellar ataxia, cancer, fybromyalga and an uneractive thyroid. Each has its own specialist and no one talks to each other. I have found that the only person who truly understands what all these things are doing to my body is the physiotherapist. The GP only has chemicals to prescribe and the consultants only have surgery , but the physio helps me understand how to manage my condition and can help alleviate some of the pain.. Just make sure you talk to a neurological physio. I always take either my husband or daughter to my appointments and try to make a list with them, of the questions we want to ask.
Having an advocate is an excellent idea. Someone who knows you well and understands what you need to happen at doctors appointments. Write out what your questions are and make sure your advocate also has that list of questions and can write down the answers.
I have also had similar experiences with several different doctors. They seem to not look at the body as a unit that works together. I my case they just kept looking for my brain to show some type of damage and didn't look at any of the other ailments I was having. Even after I would point them out, they just ignored the aliments. One neurologist said that he didn't want to get side tracked. If they would have looked at all the problems, maybe I would have been diagnosed sooner.