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In a message dated 12/6/07 5:07:50 PM, gaznik111@... writes:

> Did u have the AVS done when u were in as a day patient, do u have a

> similar case as me or is yours not a tumor. Do u mind me asking your age as im

34

> and i feel young, no offence to the older patients but they all seem much

> older when u go the clinics

>

This is about the age of the very first Conn's as I recall.

AVS can be done as an outpt. We recommned it be done after ACTH stimulation

to minimze the risk of having to do another one. Details in our files I

think.

Be sure to keep copies of all you records as they seem to get lost over there

more than here. I would also do your own history and print it out as well

so they dont have to keep asking you the same questions.

You could even number the questions they are likely to ask you and say see

question number 4 and my answer.

Trust you are undergoing or have undergone a spironolactone trial to see if

it helps BP and K. Remind any newbies you see in his office that they need to

become very familiar with this disease as it is very common.

May your pressure be low!

Clarence E. Grim, BS (Chem/Math), MS (Biochem), MD, FACP, FACC, FAHS

Clinical Professor of Medicine and Epidemiology

Director, Hypertension Diagnosis and Treatment Center

Board Certified in Internal Medicine, Geriatrics and Hypertension

Published over 220 scientific papers, book chapters and 220 abstracts in the

area of high blood pressure epidemiology, physiology, endocrinology

measurement, treatment and how to detect curable causes.

Listed in Best Doctors in America

Specializing in Difficult to Control High Blood Pressure and the History and

Physiology of High Blood pressure in the African Diaspora

**************************************

Check out AOL's list of 2007's hottest

products.

(http://money.aol.com/special/hot-products-2007?NCID=aoltop00030000000001)

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In a message dated 12/6/07 4:01:29 PM, beecathy@... writes:

>

>

>

>

> Just wondering what the general Conns experience is in UK - I'm under

> Kings College in London which is a pretty big NHS teaching hospital,

> and I'm pretty happy with the consultant I have seen up to now. He's

> fairly high up in the food chain. However last time I went for an

> annual check in august I saw another person on his team (that's pretty

> normal here, to see different people - does that happen elsewhere??)

> Anyway - his opening remark was that " I looked younger than he was

> expecting " - subtext: on account of Conns. Pointed out that my dob was

> clearly marked on the front of my file but it went downhill fom there.

> He wandered through my file and made odd comments here and there,

> stopping to ask pointless questions. He then took my BP and failed to

> tell me what it was so i asked him, at which point he asked me what I

> thought it was!! Hadn't realised I'ld landed in a game show. Anyway I

> complained to PALS and magically had another appt sent through which

> was 8 months earlier than expected!!! So I'm there next week. I just

> felt like some 100 point item in the " I spy book of rare medical

> diseases " . I'm sure my file has a big sticker with " don't piss her

> off " written in doctor code. It's not the first time I've made a big

> fuss. Previously they wanted me to spend a whole w/e in a ward just so

> I could " maybe " secure a bed for the following monday to do the vile

> blood sampling test.I absolutely refused to live on a ward for a w/e,

> given that a)I live 15 mins from the hospital, b)I was perfectly well

> and there were lots of people who actually NEEDED the bed and c)I had

> a wedding to go to!My suggestions that I provided a mop dressed to

> look like me, or would arrange for my friends to tag-sit in the bed

> didn't go down too well but common sense won through and I managed to

> change their policy and was seen as a day patient instead!!

>

>

>

>

This is funny and clever but sad tale for the NHS. good observations.

Suggest you think about writing a magazine article about this experience when

things have worked out. Keep us posted.

May your pressure be low!

Clarence E. Grim, BS (Chem/Math), MS (Biochem), MD, FACP, FACC, FAHS

Clinical Professor of Medicine and Epidemiology

Director, Hypertension Diagnosis and Treatment Center

Board Certified in Internal Medicine, Geriatrics and Hypertension

Published over 220 scientific papers, book chapters and 220 abstracts in the

area of high blood pressure epidemiology, physiology, endocrinology

measurement, treatment and how to detect curable causes.

Listed in Best Doctors in America

Specializing in Difficult to Control High Blood Pressure and the History and

Physiology of High Blood pressure in the African Diaspora

**************************************

Check out AOL's list of 2007's hottest

products.

(http://money.aol.com/special/hot-products-2007?NCID=aoltop00030000000001)

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Hi Catma,

I to am in the UK, i live in Stoke and am under the University teaching

hospital, i am happy with Dr Golash my surgeon and he seems to have a good

record with laparotic surgeries, i found some info re him on the internet.

My endo however good at finding the problem now seem poor, they did the aldo

test and that came back high, had CT scan and found the tumor,but no mention of

my illness ie conn's. Ive had 3 appointments now and i have learnt more from my

surgeon than from my endo, maybe im not asking the correct questions, but this

site is helping me do that. The last time i attended i also saw an understudy,

he seemed to no less than me, I also asked if this condition ( didnt no i had

conn's then and he didnt mention it) has any side effects, guess what he said

NO.

There were no notes on my file as the person i usually see was away and i had to

tell him what i had been told last time, he left the room and then came back in,

wen t on the pc and then found some info. I was that confussed (which isnt hard

2 do where im concerned) i had to ring back a few days later and speak to the

big chief and he clarified most things and wrote me a letter, but still no

mention of conn's !!! Oh and i even mentioned my aching legs,sore neck and

terrible migrans, but my ilness still has no side effects.

Did u have the AVS done when u were in as a day patient, do u have a similar

case as me or is yours not a tumor. Do u mind me asking your age as im 34 and i

feel young, no offence to the older patients but they all seem much older when u

go the clinics

Tales from the NHS...

Just wondering what the general Conns experience is in UK - I'm under

Kings College in London which is a pretty big NHS teaching hospital,

and I'm pretty happy with the consultant I have seen up to now. He's

fairly high up in the food chain. However last time I went for an

annual check in august I saw another person on his team (that's pretty

normal here, to see different people - does that happen elsewhere??)

Anyway - his opening remark was that " I looked younger than he was

expecting " - subtext: on account of Conns. Pointed out that my dob was

clearly marked on the front of my file but it went downhill fom there.

He wandered through my file and made odd comments here and there,

stopping to ask pointless questions. He then took my BP and failed to

tell me what it was so i asked him, at which point he asked me what I

thought it was!! Hadn't realised I'ld landed in a game show. Anyway I

complained to PALS and magically had another appt sent through which

was 8 months earlier than expected!!! So I'm there next week. I just

felt like some 100 point item in the " I spy book of rare medical

diseases " . I'm sure my file has a big sticker with " don't piss her

off " written in doctor code. It's not the first time I've made a big

fuss. Previously they wanted me to spend a whole w/e in a ward just so

I could " maybe " secure a bed for the following monday to do the vile

blood sampling test.I absolutely refused to live on a ward for a w/e,

given that a)I live 15 mins from the hospital, b)I was perfectly well

and there were lots of people who actually NEEDED the bed and c)I had

a wedding to go to!My suggestions that I provided a mop dressed to

look like me, or would arrange for my friends to tag-sit in the bed

didn't go down too well but common sense won through and I managed to

change their policy and was seen as a day patient instead!!

__________________________________________________________

Sent from - the World's favourite mail http://uk.mail.

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and ,

Your experiences are pretty common for the NHS. You are NOT entitled

to know your test results or the lab normals in the UK but most

specialists will share if you ask. Some won't as they consider it to

increase patient anxiety and will just say " low " , " normal " or " high " .

You do need to see someone who has experience in this area - and a

student or recent grad will not have seen many Conn's patients.

However you have no right to specify which specialist sees you - or

even if it is the specialist or a member of the team. Some doctors

think they are way above everyone and speak to you as was

spoken to. The only way to deal with this is to complain. I had a bit

of a head start as I was an academic staff member at the university

teaching hospital where I was treated so knew all the team very well.

However as a patient I was able to pick up shortcomings and did

manage to get major issues addressed. Still nowhere near perfect but

better than it was.

I have now moved away from this hospital and have issues similar to

yours at my local hospital. Some of the Drs at my new hospital refuse

to treat me as I am " difficult " as in I ask questions and prod and

probe until I am satisfied. They certianly don't like knowing that I

am also a doctor (but a PhD and DLitt not an MD) and have far more

experience in pharma and medical diagnostic testing than they do. I

think it gives them the willies when I refer to the pharma data

sheets (chapter and verse) and also the specs of the tests. No

medical test is 100% accurate for all patients after all.

You can try taking Dr Grim's papers but I think you will find they

end up being filed in the bucket under the doctor's desk. They

certianly won't be read. It is part of the NIH (not invented here)

frame of mind.

AVS is not carried out as a routine procedure in the NHS due to cost.

If there is a tumour then surgery is the only route as recommended by

NICE and The Chief Scientist's Office. As there is a 50% " cure " rate

this is considered to be a good outcome. If a specialist goes down

the AVS route when there is a tumour and something goes wrong during

AVS (or the AVS doesn't give any additional information) the dr who

ordered the test would be subject to investigation.

The NHS system is very different to the US model. Both have strengths

and weaknesses. The NHS is very budget aware and has to remain within

spending limits which means treatment is not always as advanced as in

the US but no one in the UK is turned away from medical treatment due

to lack of funds. You don't get people in the UK who die due to a

simple infection for example.

Helen in Scotland

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Helen, that makes me dizzy. Not invented here. If anyone could find a

cure for that, can you fancy what a world it might be?

It sounds like licensing is very different from USA's, where each state

does it - and undoes them. My dad was the chief of the licensing judges

in Calif. for 21 years, so I have watched many docs get unfrocked.

Usually for leaving a foreign object inside someone's abdomen.

Occasionally, fr diagnosing outside their area of certification.

Duelling psychiatry and medical boards.

Dave

Helen wrote:

>

> and ,

>

> Your experiences are pretty common for the NHS. You are NOT entitled

> to know your test results or the lab normals in the UK but most

> specialists will share if you ask. Some won't as they consider it to

> increase patient anxiety and will just say " low " , " normal " or " high " .

>

> You do need to see someone who has experience in this area - and a

> student or recent grad will not have seen many Conn's patients.

> However you have no right to specify which specialist sees you - or

> even if it is the specialist or a member of the team. Some doctors

> think they are way above everyone and speak to you as was

> spoken to. The only way to deal with this is to complain. I had a bit

> of a head start as I was an academic staff member at the university

> teaching hospital where I was treated so knew all the team very well.

> However as a patient I was able to pick up shortcomings and did

> manage to get major issues addressed. Still nowhere near perfect but

> better than it was.

>

> I have now moved away from this hospital and have issues similar to

> yours at my local hospital. Some of the Drs at my new hospital refuse

> to treat me as I am " difficult " as in I ask questions and prod and

> probe until I am satisfied. They certianly don't like knowing that I

> am also a doctor (but a PhD and DLitt not an MD) and have far more

> experience in pharma and medical diagnostic testing than they do. I

> think it gives them the willies when I refer to the pharma data

> sheets (chapter and verse) and also the specs of the tests. No

> medical test is 100% accurate for all patients after all.

>

> You can try taking Dr Grim's papers but I think you will find they

> end up being filed in the bucket under the doctor's desk. They

> certianly won't be read. It is part of the NIH (not invented here)

> frame of mind.

>

> AVS is not carried out as a routine procedure in the NHS due to cost.

> If there is a tumour then surgery is the only route as recommended by

> NICE and The Chief Scientist's Office. As there is a 50% " cure " rate

> this is considered to be a good outcome. If a specialist goes down

> the AVS route when there is a tumour and something goes wrong during

> AVS (or the AVS doesn't give any additional information) the dr who

> ordered the test would be subject to investigation.

>

> The NHS system is very different to the US model. Both have strengths

> and weaknesses. The NHS is very budget aware and has to remain within

> spending limits which means treatment is not always as advanced as in

> the US but no one in the UK is turned away from medical treatment due

> to lack of funds. You don't get people in the UK who die due to a

> simple infection for example.

>

> Helen in Scotland

>

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In my 40 years of teaching medical students I find it hard to teach them to

think if they dont have it in them.

Memory and thinking are not the same. But unless you have programmed you

computer in your head with as many facts as you can, you cannot think well about

medicine because your random access storage is not there to call on when

needed.

In a message dated 12/7/07 5:54:17 AM, helenmpearson@... writes:

>

> Yes the route for medical registration is very different here.

>

> Here is a brief description:

>

> http://www.privatehhttp://wwhttp://www.privahttp://www.prihttp://w

>

> To complain about a doctor it depends where you live within the UK.

> Scotland has a different system to England for example. If the

> complaint is serious is goes to the General Medical Council. Here is

> a brief outline of the ish complaints system:

>

> http://www.gmc-http://www.gmc-http://wwhttp://wwwhttp://www.gmc-http

>

> As you can see the medical profession are pretty much self-regulating

> in the UK. The complaints process is long and difficult. I have a

> complaint in progress at present - it has been going on for nearly a

> year now. I've been told it could take a further 2 years to come to a

> conclusion. Many people who are ill are unable to face this sort of

> trial (I use the word trial after consideration) as the process does

> leave one feeling as if one had been before a judge for several

> years...... I have a lot of academic qualifications and hands on

> experience so can satnd up for myself but I would think the average

> Jane Doe would be really overwhelmed.

>

> I usually refer to " NIH " as ignorance and " closed mindishness " I us

> also expains why when a patient moves from one hospital to another

> (or even one specialist to another within the same hospital and

> department) tests are repeated. I have been sent from the local

> hospital which can't deal with my problem (not PA related I hope) to

> another. The second hospital are part way through repeating nearly

> all the tests the first hospital ran even though they have been sent

> the full lab results. The only tests not being re-run are the

> biopsies sent to the second hospital for their lab to run originally.

> (Our local hospital does not have a path lab.) I asked why it was

> necessary and was told the results of the original tests did not come

> into any of their models so the tests must be wrong - well guess

> what? The re-run tests have pretty much the same results as the first

> and they still don't fit the model.

>

> My take on this? Well just maybe you are seeing something that hasn't

> yet been described in the medical literature. A chance for fame and

> recognition? Which specialist doesn't want a disease named after

> them????

>

> Most (and note I say MOST not all) medical students I have had the

> pleasure of working with have no greater intelligence than any other

> student but they do tend to have better memories and to work (and

> play) a lot harder. I also notice that most (again MOST) medical

> students work so hard on passing their exams that they don't have

> time to think out of the box. It is a rare student who asks questions

> that are not on the diagnostic flow chart. In short they learn how to

> pass exams and the creative thinking part gets shunted into a side

> alley.

>

> These are of course just my conclusions and opinions from what I have

> observed over 30 years of working in the HE sector......

>

> Helen in Scotland

>

>

May your pressure be low!

Clarence E. Grim, BS, MS, MD

Senior Consultant to Shared Care Research and Consulting, Inc.

(sharedcareinc.com)

Clinical Professor of Internal Medicine and Epidemiology Med. Col. WI

Clinical Professor of Nursing, Univ. of WI, Milwaukee

Specializing in Difficult to Control High Blood Pressure

and the Physiology and History of Survival During

Hard Times and Heart Disease today.

**************************************

Check out AOL's list of 2007's hottest

products.

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In a message dated 12/7/07 3:29:30 AM, riothamus2@... writes:

> but no one in the UK is turned away from medical treatment due

> > to lack of funds. You don't get people in the UK who die due to a

> > simple infection for example.

>

Some call this socialized medicine. I call it civilized medicine.

We need this in the US I can assure you.

May your pressure be low!

Clarence E. Grim, BS, MS, MD

Senior Consultant to Shared Care Research and Consulting, Inc.

(sharedcareinc.com)

Clinical Professor of Internal Medicine and Epidemiology Med. Col. WI

Clinical Professor of Nursing, Univ. of WI, Milwaukee

Specializing in Difficult to Control High Blood Pressure

and the Physiology and History of Survival During

Hard Times and Heart Disease today.

**************************************

Check out AOL's list of 2007's hottest

products.

(http://money.aol.com/special/hot-products-2007?NCID=aoltop00030000000001)

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Have you thought about writing a Helen's Guide to the NHS? You sound like a

real expert, unfortunatley.

May your pressure be low!

Clarence E. Grim, BS, MS, MD

Senior Consultant to Shared Care Research and Consulting, Inc.

(sharedcareinc.com)

Clinical Professor of Internal Medicine and Epidemiology Med. Col. WI

Clinical Professor of Nursing, Univ. of WI, Milwaukee

Specializing in Difficult to Control High Blood Pressure

and the Physiology and History of Survival During

Hard Times and Heart Disease today.

**************************************

Check out AOL's list of 2007's hottest

products.

(http://money.aol.com/special/hot-products-2007?NCID=aoltop00030000000001)

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Share on other sites

Yes the route for medical registration is very different here.

Here is a brief description:

http://www.privatehealth.co.uk/privatespecialists/medical-training

To complain about a doctor it depends where you live within the UK.

Scotland has a different system to England for example. If the

complaint is serious is goes to the General Medical Council. Here is

a brief outline of the ish complaints system:

http://www.gmc-uk.org/concerns/making_a_complaint/referal_Scotland.pdf

As you can see the medical profession are pretty much self-regulating

in the UK. The complaints process is long and difficult. I have a

complaint in progress at present - it has been going on for nearly a

year now. I've been told it could take a further 2 years to come to a

conclusion. Many people who are ill are unable to face this sort of

trial (I use the word trial after consideration) as the process does

leave one feeling as if one had been before a judge for several

years...... I have a lot of academic qualifications and hands on

experience so can satnd up for myself but I would think the average

Jane Doe would be really overwhelmed.

I usually refer to " NIH " as ignorance and " closed mindishness " . It

also expains why when a patient moves from one hospital to another

(or even one specialist to another within the same hospital and

department) tests are repeated. I have been sent from the local

hospital which can't deal with my problem (not PA related I hope) to

another. The second hospital are part way through repeating nearly

all the tests the first hospital ran even though they have been sent

the full lab results. The only tests not being re-run are the

biopsies sent to the second hospital for their lab to run originally.

(Our local hospital does not have a path lab.) I asked why it was

necessary and was told the results of the original tests did not come

into any of their models so the tests must be wrong - well guess

what? The re-run tests have pretty much the same results as the first

and they still don't fit the model.

My take on this? Well just maybe you are seeing something that hasn't

yet been described in the medical literature. A chance for fame and

recognition? Which specialist doesn't want a disease named after

them????

Most (and note I say MOST not all) medical students I have had the

pleasure of working with have no greater intelligence than any other

student but they do tend to have better memories and to work (and

play) a lot harder. I also notice that most (again MOST) medical

students work so hard on passing their exams that they don't have

time to think out of the box. It is a rare student who asks questions

that are not on the diagnostic flow chart. In short they learn how to

pass exams and the creative thinking part gets shunted into a side

alley.

These are of course just my conclusions and opinions from what I have

observed over 30 years of working in the HE sector.......

Helen in Scotland

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I do have a tumour - left adrenal about 10 - 12mm which I thought was

ENORMOUS until I found here. I was about 40 when this started though

it took a year to diagnose. Now 45 and yes I do feel very young still

in the clinic. I did have the AVS done as day surgery but only after

a humungous fuss.

>

> Hi Catma,

>

> I to am in the UK, i live in Stoke and am under the University

teaching hospital, i am happy with Dr Golash my surgeon and he seems

to have a good record with laparotic surgeries, i found some info re

him on the internet.

>

> My endo however good at finding the problem now seem poor, they did

the aldo test and that came back high, had CT scan and found the

tumor,but no mention of my illness ie conn's. Ive had 3 appointments

now and i have learnt more from my surgeon than from my endo, maybe

im not asking the correct questions, but this site is helping me do

that. The last time i attended i also saw an understudy, he seemed to

no less than me, I also asked if this condition ( didnt no i had

conn's then and he didnt mention it) has any side effects, guess what

he said NO.

> There were no notes on my file as the person i usually see was away

and i had to tell him what i had been told last time, he left the

room and then came back in, wen t on the pc and then found some info.

I was that confussed (which isnt hard 2 do where im concerned) i had

to ring back a few days later and speak to the big chief and he

clarified most things and wrote me a letter, but still no mention of

conn's !!! Oh and i even mentioned my aching legs,sore neck and

terrible migrans, but my ilness still has no side effects.

>

> Did u have the AVS done when u were in as a day patient, do u have

a similar case as me or is yours not a tumor. Do u mind me asking

your age as im 34 and i feel young, no offence to the older patients

but they all seem much older when u go the clinics

>

>

>

> Tales from the NHS...

>

> Just wondering what the general Conns experience is in UK - I'm

under

> Kings College in London which is a pretty big NHS teaching hospital,

> and I'm pretty happy with the consultant I have seen up to now. He's

> fairly high up in the food chain. However last time I went for an

> annual check in august I saw another person on his team (that's

pretty

> normal here, to see different people - does that happen

elsewhere??)

> Anyway - his opening remark was that " I looked younger than he was

> expecting " - subtext: on account of Conns. Pointed out that my dob

was

> clearly marked on the front of my file but it went downhill fom

there.

> He wandered through my file and made odd comments here and there,

> stopping to ask pointless questions. He then took my BP and failed

to

> tell me what it was so i asked him, at which point he asked me what

I

> thought it was!! Hadn't realised I'ld landed in a game show. Anyway

I

> complained to PALS and magically had another appt sent through which

> was 8 months earlier than expected!!! So I'm there next week. I just

> felt like some 100 point item in the " I spy book of rare medical

> diseases " . I'm sure my file has a big sticker with " don't piss her

> off " written in doctor code. It's not the first time I've made a big

> fuss. Previously they wanted me to spend a whole w/e in a ward just

so

> I could " maybe " secure a bed for the following monday to do the vile

> blood sampling test.I absolutely refused to live on a ward for a

w/e,

> given that a)I live 15 mins from the hospital, b)I was perfectly

well

> and there were lots of people who actually NEEDED the bed and c)I

had

> a wedding to go to!My suggestions that I provided a mop dressed to

> look like me, or would arrange for my friends to tag-sit in the bed

> didn't go down too well but common sense won through and I managed

to

> change their policy and was seen as a day patient instead!!

>

>

>

>

>

> __________________________________________________________

> Sent from - the World's favourite mail

http://uk.mail.

>

>

>

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I also ask questions, so many that in the middle of my AVS procedure

they asked me if I would like a sedative!! It is the seeing different

people that really makes me mad.I've been navigating this for 5 years

now so I feel like I know the ropes and I'm always happy to complain!!

>

> and ,

>

> Your experiences are pretty common for the NHS. You are NOT

entitled

> to know your test results or the lab normals in the UK but most

> specialists will share if you ask. Some won't as they consider it

to

> increase patient anxiety and will just say " low " , " normal "

or " high " .

>

> You do need to see someone who has experience in this area - and a

> student or recent grad will not have seen many Conn's patients.

> However you have no right to specify which specialist sees you - or

> even if it is the specialist or a member of the team. Some doctors

> think they are way above everyone and speak to you as was

> spoken to. The only way to deal with this is to complain. I had a

bit

> of a head start as I was an academic staff member at the university

> teaching hospital where I was treated so knew all the team very

well.

> However as a patient I was able to pick up shortcomings and did

> manage to get major issues addressed. Still nowhere near perfect

but

> better than it was.

>

> I have now moved away from this hospital and have issues similar to

> yours at my local hospital. Some of the Drs at my new hospital

refuse

> to treat me as I am " difficult " as in I ask questions and prod and

> probe until I am satisfied. They certianly don't like knowing that

I

> am also a doctor (but a PhD and DLitt not an MD) and have far more

> experience in pharma and medical diagnostic testing than they do. I

> think it gives them the willies when I refer to the pharma data

> sheets (chapter and verse) and also the specs of the tests. No

> medical test is 100% accurate for all patients after all.

>

> You can try taking Dr Grim's papers but I think you will find they

> end up being filed in the bucket under the doctor's desk. They

> certianly won't be read. It is part of the NIH (not invented here)

> frame of mind.

>

> AVS is not carried out as a routine procedure in the NHS due to

cost.

> If there is a tumour then surgery is the only route as recommended

by

> NICE and The Chief Scientist's Office. As there is a 50% " cure "

rate

> this is considered to be a good outcome. If a specialist goes down

> the AVS route when there is a tumour and something goes wrong

during

> AVS (or the AVS doesn't give any additional information) the dr who

> ordered the test would be subject to investigation.

>

> The NHS system is very different to the US model. Both have

strengths

> and weaknesses. The NHS is very budget aware and has to remain

within

> spending limits which means treatment is not always as advanced as

in

> the US but no one in the UK is turned away from medical treatment

due

> to lack of funds. You don't get people in the UK who die due to a

> simple infection for example.

>

> Helen in Scotland

>

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