Re: A day from hell

[Guest guest]

Dear Jo

First, HI! I don't think we've met, but as most say, we are family! We are

genetically connected, by something that makes us unconnected!

(I hope that made you smile, it did me, when someone once said it to me & I

sure needed it then!)

And yes, I read until the end. Something about it caught my eye & though I

don't read all mail, as no one can, I did yours.

You have every right to " vent " & that's why we are all here, for each other.

I wrote offline, as I felt this was a bit personal & not for everyone.

I am also a nurse, just like your Mom & I'm sure she'd agree that just about

the most important thing that one needs to be healthy, is complete & total

trust in their treating MD's. And if you don't have that & in fact it sounds

that not only don't you, but the effect that this person has had on you

emotionally has probably caused you even more physical damage. And it has

clearly been

physical & emotional, to my ear. Read your email, as though it were from

someone else & tell me what YOU think.

I could go on for hours here, but I just can't for a number of reasons,

including that my fingers really hurt now & I believe my blood pressure went up

a

great deal just reading your email & I'd probably have a stroke if I wrote

everything that was in my head right now!!!!!!!!!!!!!!!!

But, here is most of it in a nutshell

I personally believe:

You have the right

To be taken at your word.

To be treated with respect & dignity.

To have your Dr. HEAR what you SAY (not just listen).

To have you complaints researched until there is an acceptable

diagnosis & proper plan of action.

To be helped & not hurt.

And, though I'm in the U.S. & don't know the law in England, I do know that

here, you are entitled to a complete & total copy of your entire medical

record. You may have to pay a fee per page (for it to be copied), but you are

legally entitled to it & if it were me, I'd want to see every single page in

their

file & I mean everything! Their personal writings, the nurses, every lab

report, every consult report, you name it. The last job I held before I

couldn't

work anymore, was as a nurse paralegal. I worked for malpractice lawyers,

always for the plaintiff (the patient) for almost 7 years & surely know how to

write a request for the info.

I wish I knew a Dr. to tell you about, but from here, I could hardly tell

you. I would also want to know for sure that any new Dr. that you might see,,

would do so without any influence from your current Dr. And, it's not uncommon

for them to exchange info, though I don't know how it's done there, but

believe me, there are ways to get your old info & keep most of it from a new Dr.

And I do think that having confindence in your Dr., without all of the feelings

that you do have for your current Dr., is extremely important to your current

& future well being. I would never continue with this Dr., but that's just

me. It's not advice. This is all my personal opinion.

And here, it is illegal for them to take out information that has been in

your records & replace it with new information. They can explain in a new

record, something about what they wrote before, but they can't " erase " anything.

They can add, they cannot take away.

I would really like to help you. I'd bet your Mom could read the doctors

records & I would actually sit down at my computer & transfer all of the

information, from day #1, until now, onto it, so I had a complete record. What

you do

is up to you. But remember that, as a patient, you have certain rights.

Don't give them up. Please write back offline if you'd like, as I'd love to

hear

soon, that you are doing well & being treated with respect, as you deserve to

be.

Good luck, be well,

[Guest guest]

Dear Jo

First, HI! I don't think we've met, but as most say, we are family! We are

genetically connected, by something that makes us unconnected!

(I hope that made you smile, it did me, when someone once said it to me & I

sure needed it then!)

And yes, I read until the end. Something about it caught my eye & though I

don't read all mail, as no one can, I did yours.

You have every right to " vent " & that's why we are all here, for each other.

I wrote offline, as I felt this was a bit personal & not for everyone.

I am also a nurse, just like your Mom & I'm sure she'd agree that just about

the most important thing that one needs to be healthy, is complete & total

trust in their treating MD's. And if you don't have that & in fact it sounds

that not only don't you, but the effect that this person has had on you

emotionally has probably caused you even more physical damage. And it has

clearly been

physical & emotional, to my ear. Read your email, as though it were from

someone else & tell me what YOU think.

I could go on for hours here, but I just can't for a number of reasons,

including that my fingers really hurt now & I believe my blood pressure went up

a

great deal just reading your email & I'd probably have a stroke if I wrote

everything that was in my head right now!!!!!!!!!!!!!!!!

But, here is most of it in a nutshell

I personally believe:

You have the right

To be taken at your word.

To be treated with respect & dignity.

To have your Dr. HEAR what you SAY (not just listen).

To have you complaints researched until there is an acceptable

diagnosis & proper plan of action.

To be helped & not hurt.

And, though I'm in the U.S. & don't know the law in England, I do know that

here, you are entitled to a complete & total copy of your entire medical

record. You may have to pay a fee per page (for it to be copied), but you are

legally entitled to it & if it were me, I'd want to see every single page in

their

file & I mean everything! Their personal writings, the nurses, every lab

report, every consult report, you name it. The last job I held before I

couldn't

work anymore, was as a nurse paralegal. I worked for malpractice lawyers,

always for the plaintiff (the patient) for almost 7 years & surely know how to

write a request for the info.

I wish I knew a Dr. to tell you about, but from here, I could hardly tell

you. I would also want to know for sure that any new Dr. that you might see,,

would do so without any influence from your current Dr. And, it's not uncommon

for them to exchange info, though I don't know how it's done there, but

believe me, there are ways to get your old info & keep most of it from a new Dr.

And I do think that having confindence in your Dr., without all of the feelings

that you do have for your current Dr., is extremely important to your current

& future well being. I would never continue with this Dr., but that's just

me. It's not advice. This is all my personal opinion.

And here, it is illegal for them to take out information that has been in

your records & replace it with new information. They can explain in a new

record, something about what they wrote before, but they can't " erase " anything.

They can add, they cannot take away.

I would really like to help you. I'd bet your Mom could read the doctors

records & I would actually sit down at my computer & transfer all of the

information, from day #1, until now, onto it, so I had a complete record. What

you do

is up to you. But remember that, as a patient, you have certain rights.

Don't give them up. Please write back offline if you'd like, as I'd love to

hear

soon, that you are doing well & being treated with respect, as you deserve to

be.

Good luck, be well,

[Guest guest]

Dear Jo

First, HI! I don't think we've met, but as most say, we are family! We are

genetically connected, by something that makes us unconnected!

(I hope that made you smile, it did me, when someone once said it to me & I

sure needed it then!)

And yes, I read until the end. Something about it caught my eye & though I

don't read all mail, as no one can, I did yours.

You have every right to " vent " & that's why we are all here, for each other.

I wrote offline, as I felt this was a bit personal & not for everyone.

I am also a nurse, just like your Mom & I'm sure she'd agree that just about

the most important thing that one needs to be healthy, is complete & total

trust in their treating MD's. And if you don't have that & in fact it sounds

that not only don't you, but the effect that this person has had on you

emotionally has probably caused you even more physical damage. And it has

clearly been

physical & emotional, to my ear. Read your email, as though it were from

someone else & tell me what YOU think.

I could go on for hours here, but I just can't for a number of reasons,

including that my fingers really hurt now & I believe my blood pressure went up

a

great deal just reading your email & I'd probably have a stroke if I wrote

everything that was in my head right now!!!!!!!!!!!!!!!!

But, here is most of it in a nutshell

I personally believe:

You have the right

To be taken at your word.

To be treated with respect & dignity.

To have your Dr. HEAR what you SAY (not just listen).

To have you complaints researched until there is an acceptable

diagnosis & proper plan of action.

To be helped & not hurt.

And, though I'm in the U.S. & don't know the law in England, I do know that

here, you are entitled to a complete & total copy of your entire medical

record. You may have to pay a fee per page (for it to be copied), but you are

legally entitled to it & if it were me, I'd want to see every single page in

their

file & I mean everything! Their personal writings, the nurses, every lab

report, every consult report, you name it. The last job I held before I

couldn't

work anymore, was as a nurse paralegal. I worked for malpractice lawyers,

always for the plaintiff (the patient) for almost 7 years & surely know how to

write a request for the info.

I wish I knew a Dr. to tell you about, but from here, I could hardly tell

you. I would also want to know for sure that any new Dr. that you might see,,

would do so without any influence from your current Dr. And, it's not uncommon

for them to exchange info, though I don't know how it's done there, but

believe me, there are ways to get your old info & keep most of it from a new Dr.

And I do think that having confindence in your Dr., without all of the feelings

that you do have for your current Dr., is extremely important to your current

& future well being. I would never continue with this Dr., but that's just

me. It's not advice. This is all my personal opinion.

And here, it is illegal for them to take out information that has been in

your records & replace it with new information. They can explain in a new

record, something about what they wrote before, but they can't " erase " anything.

They can add, they cannot take away.

I would really like to help you. I'd bet your Mom could read the doctors

records & I would actually sit down at my computer & transfer all of the

information, from day #1, until now, onto it, so I had a complete record. What

you do

is up to you. But remember that, as a patient, you have certain rights.

Don't give them up. Please write back offline if you'd like, as I'd love to

hear

soon, that you are doing well & being treated with respect, as you deserve to

be.

Good luck, be well,

[Guest guest]

Jo,

I should think that since you have been communicating with the geneticist,

then you would not need a referral to see him again, so just tell the

geneticist directly that your GP isn't cooperating and that you feel you

need to see him again and make the appointment directly.

You need a new GP anyway though, go and find someone new that friends

recommend, interview them and get a feel for how they will work with YOU as

a patient, you have a right to do this - regardless of where you live in the

world. Never ever accept sub-standard care for yourself. You deserve so

much better, and it begins with a fresh start. find someone new and do not

mention your old GP to them, begin anew.

Jill

[Guest guest]

Jo,

I should think that since you have been communicating with the geneticist,

then you would not need a referral to see him again, so just tell the

geneticist directly that your GP isn't cooperating and that you feel you

need to see him again and make the appointment directly.

You need a new GP anyway though, go and find someone new that friends

recommend, interview them and get a feel for how they will work with YOU as

a patient, you have a right to do this - regardless of where you live in the

world. Never ever accept sub-standard care for yourself. You deserve so

much better, and it begins with a fresh start. find someone new and do not

mention your old GP to them, begin anew.

Jill

[Guest guest]

Hi Fay,

Thank you for your advice Darl, that means a lot to me. I'm hanging

in there and doing my research into new doctors now. I'm going to try

another doctor within the practice if possible, but I'm not sure if

it will wor out yet. I'm researching and checking out other options

too though and may even try talking to some to see where they stand

on EDS and being willing to be flexible and work with me in treating,

managing and monitoring things.

I hope you are okay. Do you mid me asking whereabouts in the UK you

are? As you know I'm in the N.E. around the Yorkshire/Durham border.

Thanks again for your help and please feel free to keep in touch if

you'd like.

Love and hugs....Jo

xxx

> Hi Jo,

>

> I am not in the North East UK, sorry, but I am in the UK. Anyway,

is

> there another GP in the practice that you can see?

>

> I do not like the GP that I am registered with, so I do not see

him. I

> see another GP in the practice for booked appointments. For open

> surgery (morning surgery, am emergency appointments on the morning)

two

> GPs usually work and I simply request the one I am happiest with.

Any

> consultants I see have been happy to forward paperwork to the GP I

> prefer. I have not seen the GP I dislike for 7 years and I have

not

> needed to change practice achieve this.

>

> Love,

> Fay.