Re: Possible to get statistics/data on thyroid disease?

[Guest guest]

Reply from Hampshire PCT:

" I am advised that NHS Hampshire does not hold the information you are looking

for. The prescribing data that we do have access to via the Prescription

Pricing Division of the Business Services Agency does not allow us to access

individual patient data; we can determine the number of prescriptions dispensed

for individual products but there is no link to what other medicines those

patients have been prescribed. It is therefore not possible to determine the

number or percentage of patients who are taking two or more different

medicines. "

My reply:

" Would it be possible to obtain this information from GPs? and if so would you

be able to help me obtain this information instead of me having to contact

individual GPs? "

Jonny

[Guest guest]

Hampshire PCT have jsut come back saying:

" My understanding is that GP practices do fall within the remit of the Freedom

of Information Act 2000, however I suggest you clarify their position with the

Information Commissioner's Office (http://www.ico.gov.uk/); on this

understanding you could therefore approach them individually for the information

you require.

Unfortunately NHS Hampshire is unable to assist you in obtaining information

from individual GP practices. To assist you I am providing the link to the list

of GP practices in Hampshire provided on NHS Choices:

http://www.nhs.uk/servicedirectories/pages/trust.aspx?id=5qc & v=2. "

So it looks like I will have to contact individual GP practices! I don't know

how to go about doing this as there must be several thousand in England.

Thanks

Jonny

[Guest guest]

Writing to each Primary Care Trust asking them if they would pass

on your request to the GP's in their area might give you the result you need

Jonny. Write a letter to 'Dear Doctor' setting out the information you

require and asking them if they would send this information to you direct when

they had time. The Primary Care Trusts did this for me, with no problem when I

needed to get out information to all GP's. I believe there are about 33000 in

the UK.

luv - Sheila

Hampshire PCT have jsut come back saying:

" My understanding is that GP practices do fall within the remit of the

Freedom of Information Act 2000, however I suggest you clarify their position

with the Information Commissioner's Office (http://www.ico.gov.uk/);

on this understanding you could therefore approach them individually for the

information you require.

Unfortunately NHS Hampshire is unable to assist you in obtaining information

from individual GP practices. To assist you I am providing the link to the list

of GP practices in Hampshire provided on NHS Choices: http://www.nhs.uk/servicedirectories/pages/trust.aspx?id=5qc & v=2. "

So it looks like I will have to contact individual GP practices! I don't know

how to go about doing this as there must be several thousand in England.

Thanks

Jonny

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18:14:00

[Guest guest]

I could ask them if they would do this, but they're reply states that they

cannot assist me with getting information from individual GP practices.

Would I need to send a letter to each GP, or just each GP practice?

And I would get presumably about 33000 replies, so it would be a massive job

sorting out all the information from each one.

Thanks

jonny

[Guest guest]

The Trust has told you THEY can't get the information. They

haven't said that they cannot send a copy of your letter of request out to

every GP in their area. This is the easiest and quickest way you can do this.

Just reply to their email and ask if they would do this - and the GP's could

respond to you direct. The PCT's are ALWAYS sending information out to the GP's

surgeries in their area - it would only involve one letter per surgery. You

could never write to each individual GP.

Sheila

I could ask them if they would do this, but they're reply

states that they cannot assist me with getting information from individual GP

practices.

Would I need to send a letter to each GP, or just each GP practice?

And I would get presumably about 33000 replies, so it would be a massive job

sorting out all the information from each one.

Thanks

jonny

No virus

found in this incoming message.

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18:14:00

[Guest guest]

Thanks Sheila,

Ill email them now and ask

Jonny

[Guest guest]

Hi Sheila/Jonny

Thyroid disease is part of the QOF Quality Outcomes Framework, I believe.

That's how they get lots of brownie points for treating their patients 'properly'...so they won't want anyone to find the truth of the matter.

Don' t expect anyone to start providing the data soon and without a massive fight.

Toes are being trod on.

best wishes

Bob

>> Writing to each Primary Care Trust asking them if they would pass on your> request to the GP's in their area might give you the result you need Jonny.> Write a letter to 'Dear Doctor' setting out the information you require and> asking them if they would send this information to you direct when they had> time. The Primary Care Trusts did this for me, with no problem when I needed> to get out information to all GP's. I believe there are about 33000 in the> UK.> > > > luv - Sheila> > > > Hampshire PCT have jsut come back saying:> > "My understanding is that GP practices do fall within the remit of the> Freedom of Information Act 2000, however I suggest you clarify their> position with the Information Commissioner's Office> (http://www.ico.gov.uk/); on this understanding you could therefore approach> them individually for the information you require. > > Unfortunately NHS Hampshire is unable to assist you in obtaining information> from individual GP practices. To assist you I am providing the link to the> list of GP practices in Hampshire provided on NHS Choices:> http://www.nhs.uk/servicedirectories/pages/trust.aspx?id=5qc> <http://www.nhs.uk/servicedirectories/pages/trust.aspx?id=5qc & v=2.> & v=2."> > So it looks like I will have to contact individual GP practices! I don't> know how to go about doing this as there must be several thousand in> England.> > Thanks> Jonny> > > > No virus found in this incoming message.> Checked by AVG - www.avg.com> Version: 8.5.339 / Virus Database: 270.12.37/2130 - Release Date: 05/25/09> 18:14:00>

[Guest guest]

Gee Bob - that is SO positive - (thinks not *grin). What about

WHO - I thought all such information had to go to them?

Luv - Sheila

Hi Sheila/Jonny

Thyroid disease is part of the QOF Quality

Outcomes Framework, I believe.

That's how they get lots of brownie points

for treating their patients 'properly'...so they won't want anyone to find the

truth of the matter.

Don' t expect anyone to start providing the

data soon and without a massive fight.

Toes are being trod on.

best wishes

Bob

>

> Writing to each Primary Care Trust asking them if they would pass on your

> request to the GP's in their area might give you the result you need

Jonny.

> Write a letter to 'Dear Doctor' setting out the information you require

and

> asking them if they would send this information to you direct when they

had

> time. The Primary Care Trusts did this for me, with no problem when I

needed

> to get out information to all GP's. I believe there are about 33000 in the

> UK.

>

>

>

> luv - Sheila

>

>

>

> Hampshire PCT have jsut come back saying:

>

> " My understanding is that GP practices do fall within the remit of

the

> Freedom of Information Act 2000, however I suggest you clarify their

> position with the Information Commissioner's Office

> (http://www.ico.gov.uk/); on this understanding you could therefore

approach

> them individually for the information you require.

>

> Unfortunately NHS Hampshire is unable to assist you in obtaining

information

> from individual GP practices. To assist you I am providing the link to the

> list of GP practices in Hampshire provided on NHS Choices:

> http://www.nhs.uk/servicedirectories/pages/trust.aspx?id=5qc

> <http://www.nhs.uk/servicedirectories/pages/trust.aspx?id=5qc & v=2.>

& v=2. "

>

> So it looks like I will have to contact individual GP practices! I don't

> know how to go about doing this as there must be several thousand in

> England.

>

> Thanks

> Jonny

>

>

>

> No virus found in this incoming message.

> Checked by AVG - www.avg.com

> Version: 8.5.339 / Virus Database: 270.12.37/2130 - Release Date: 05/25/09

> 18:14:00

>

No virus

found in this incoming message.

Checked by AVG - www.avg.com

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18:14:00

[Guest guest]

Ill send WHO an email and see what they say.

If the GPs are under FOIA, wont they HAVE to give the information?

THanks

Jonny

[Guest guest]

Here is my email to PCT Hampshire and their reply..

" I was told that you may be able to send a copy of my letter to every GP in the

area? Is this a possibility? And then they could reply directly to me via

email? "

" In response to your request NHS Hampshire has followed the " Secretary of State

for Constitutional Affairs' Code of Practice on the discharge of public

authorities' functions under Part 1 of the Freedom of Information Act 2000 " .

Section III refers to transferring requests for information; following this

guidance NHS Hampshire has advised and provided you with the contact details for

the relevant public authorities you may wish to approach. Unfortunately NHS

Hampshire does not consider it appropriate to transfer your request to the GP

practices within the trust area; our reasons being that we cannot be sure that

each practice will hold relevant information, or that they could provide this to

you. "

Jonny

[Guest guest]

Hmmm! somebody being unhelpful here I think. I did get such a

response from a few Trusts when I asked them to send my letter out to the

doctors in their area, but an awful lot did. however, for such an exercise, you

really need everybody to be take part. Did you get a letter of to WHO?

Luv - Sheila

Here is my email to PCT Hampshire and their

reply..

" I was told that you may be able to send a copy of my letter to every GP

in the area? Is this a possibility? And then they could reply directly to me

via email? "

" In response to your request NHS Hampshire has followed the

" Secretary of State for Constitutional Affairs' Code of Practice on the

discharge of public authorities' functions under Part 1 of the Freedom of

Information Act 2000 " . Section III refers to transferring requests for

information; following this guidance NHS Hampshire has advised and provided you

with the contact details for the relevant public authorities you may wish to

approach. Unfortunately NHS Hampshire does not consider it appropriate to

transfer your request to the GP practices within the trust area; our reasons

being that we cannot be sure that each practice will hold relevant information,

or that they could provide this to you. "

Jonny

No virus

found in this incoming message.

Checked by AVG - www.avg.com

Version: 8.5.339 / Virus Database: 270.12.44/2140 - Release Date: 05/28/09

18:09:00

[Guest guest]

No I havnt got a reply from WHO yet.

I also emailed the Prescription pricing division through the FOI. I emailed them

before but didnt state it was FIO so I think they just fobbed me off. THis time

they refered me to a pdf on the net but this only gave me how much of each drug

is prescribed and not out of those that take thyroxine and Armour. (Im quite

suprised that they made this mistake as I wrote it quite clearly)

I think I will email some more PCTs and ask them to email GPs. It would be nice

just to do it for one PCT and see the results of that.

jonny

[Guest guest]

HI

There is the US Center for Disease Control. They have statistics.

There is the article by Saravanan, et al. -- they claim 13% of all those treated

for hypothyroidism are unhappy campers.....

There is the Colorado Study...

But I you are probably looking for UK stats..

Have a great day,

>

> Hmmm! somebody being unhelpful here I think. I did get such a response from

> a few Trusts when I asked them to send my letter out to the doctors in their

> area, but an awful lot did. however, for such an exercise, you really need

> everybody to be take part. Did you get a letter of to WHO?

>

>

>

> Luv - Sheila

>

>

>

> Here is my email to PCT Hampshire and their reply..

>

> " I was told that you may be able to send a copy of my letter to every GP in

> the area? Is this a possibility? And then they could reply directly to me

> via email? "

>

> " In response to your request NHS Hampshire has followed the " Secretary of

> State for Constitutional Affairs' Code of Practice on the discharge of

> public authorities' functions under Part 1 of the Freedom of Information Act

> 2000 " . Section III refers to transferring requests for information;

> following this guidance NHS Hampshire has advised and provided you with the

> contact details for the relevant public authorities you may wish to

> approach. Unfortunately NHS Hampshire does not consider it appropriate to

> transfer your request to the GP practices within the trust area; our reasons

> being that we cannot be sure that each practice will hold relevant

> information, or that they could provide this to you. "

>

> Jonny

>

>

>

> No virus found in this incoming message.

> Checked by AVG - www.avg.com

> Version: 8.5.339 / Virus Database: 270.12.44/2140 - Release Date: 05/28/09

> 18:09:00

>

[Guest guest]

No Us stats would be just as good. I may give the diesease contral ppl an email

THanks

Jonny

[Guest guest]

If anyone here gets prescribed Armour by their GP, then perhaps I could send my

email to that GP practice asking for the information for Armour and

levothyroxine?

This would be useful as it would enable me to see if GPs will give me such

information (i do not know if they are required to by FOI or not....does anyone

know this?) and also may be interesting to see the results even if it is only

for a handful of patients (of course no conclusions could be drawn tho with such

a small subset of patients).

Could anybody that gets prescribed Armour by their GP give me the name of the

practice they attend?

Thanks

jonny

[Guest guest]

Jonny, I doubt anybody would want to give out their GP's name in

the same way we don't wish to give out our endocrinologists who recommend

Armour. This is such a 'touchy' business and if they thought anybody was asking

questions, they might change their minds. After all, they don't know who you

are and you could be a member of the BTA disguised as a thyroid patient, or a

student doing research, who might be weeding out these wonderful GP's to put

pressure on them to stop. Think you will have to think again on this. I guess

you are becoming a Norfolk Terrier like I have become a Yorkshire Terrier - once

you get hold of something, you refuse to let go - and gudonyer!

Luv - Sheila

If anyone here gets prescribed Armour by their GP, then perhaps I could send my

email to that GP practice asking for the information for Armour and

levothyroxine?

This would be useful as it would enable me to see if GPs will give me such

information (i do not know if they are required to by FOI or not....does anyone

know this?) and also may be interesting to see the results even if it is only

for a handful of patients (of course no conclusions could be drawn tho with

such a small subset of patients).

Could anybody that gets prescribed Armour by their GP give me the name of the

practice they attend?

[Guest guest]

I have just recieved data from Bradford Teaching Hospitals NHS Trust on 120

patients that take levothyroxine and the other prescriptions they have. Iv

posted it in the files section under " FOIA Response re Levothyroxine 2.xls "

Now we just need to find the same but for those patients taking Armour.

If we do find this data however, and it shows that those on Armour have less

prescriptions on average than those on levothyroxine, is this good enough

evidence as 120 patients is not a large number? Also, if the Armour data is from

GPs, then are the patients from the hospital bound to be on more prescriptions

anyway as they are probably at hospital due to more serious things being wrong

too?

If it isn't then perhaps it will be enough for the related authority to launch

their own larger investigation into the relative numbers of prescriptions.

Anyway Im getting ahead of myself a bit as we don't even have the data for

Armour lol

Jonny

[Guest guest]

On Tue, 25 Aug 2009 20:39:44 -0000, you wrote:

>

>If we do find this data however, and it shows that those on Armour have less

prescriptions on average than those on levothyroxine, is this good enough

evidence as 120 patients is not a large number?

if the differences are large then 120 is enough, the more similar the

results are the large the sample needs to be to be significant.

Nick

[Guest guest]

Hi Jonny,

Looking at the hospitalised patient listing, seems many are also diabetic,

rheumatic, cardiac patients, etc for whom current best practice would be

mandatory in a hospital setting ~ I didn't see many attempts to administer

magnesium in any form, but lots of calcium? perhaps I'm missing something.

I think we had a question about other drugs on the Hypothyroid Patient Survey

(on the website).

best wishes

Bob

>

> I have just recieved data from Bradford Teaching Hospitals NHS Trust on 120

patients that take levothyroxine and the other prescriptions they have. Iv

posted it in the files section under " FOIA Response re Levothyroxine 2.xls "

>

> Now we just need to find the same but for those patients taking Armour.

>

> If we do find this data however, and it shows that those on Armour have less

prescriptions on average than those on levothyroxine, is this good enough

evidence as 120 patients is not a large number? Also, if the Armour data is from

GPs, then are the patients from the hospital bound to be on more prescriptions

anyway as they are probably at hospital due to more serious things being wrong

too?

>

> If it isn't then perhaps it will be enough for the related authority to launch

their own larger investigation into the relative numbers of prescriptions.

>

> Anyway Im getting ahead of myself a bit as we don't even have the data for

Armour lol

>

> Jonny

>

[Guest guest]

Hi Jonny - I wondered where you had disappeared to but now see

how busy you have been, so many thanks for this. I will look through it when I

have time, but forgive me for not doing this right now. I am off on holiday

soon and too much to get through before then. Remind me at a later date if I

have not got back to you with my thoughts.

Luv - Sheila

>

> I have just recieved data from Bradford Teaching Hospitals NHS Trust on

120 patients that take levothyroxine and the other prescriptions they have. Iv

posted it in the files section under " FOIA Response re Levothyroxine

2.xls "

>

> Now we just need to find the same but for those patients taking Armour.

>

> If we do find this data however, and it shows that those on Armour have

less prescriptions on average than those on levothyroxine, is this good enough

evidence as 120 patients is not a large number? Also, if the Armour data is

from GPs, then are the patients from the hospital bound to be on more

prescriptions anyway as they are probably at hospital due to more serious

things being wrong too?

>

> If it isn't then perhaps it will be enough for the related authority to

launch their own larger investigation into the relative numbers of

prescriptions.

>

> Anyway Im getting ahead of myself a bit as we don't even have the data for

Armour lol

>

> Jonny

>

No virus

found in this incoming message.

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18:07:00

[Guest guest]

Bob, are you saying that this list wouldn't be worth much as these patients also

have other conditions? This is what I thought

I think we really need a list from GPs

Jonny

[Guest guest]

Hi Jonny,

Yes, I think a GP list is vital

best wishes

Bob

>

> Bob, are you saying that this list wouldn't be worth much as these patients

also have other conditions? This is what I thought

>

> I think we really need a list from GPs

>

> Jonny

>

[Guest guest]

Hey,

Iv started on this little mission again lol.

I email a few PCTs a few months ago but they said they couldn't give me the

information and that Id have to go to GPs to get it. When I asked if they could

email GPs for me they said they couldn't.

Iv posted the same message on the NTH forum now to see if it would be better in

america sine there are mostly americans on that forum.

I have sent a FOI request too to how many prescriptions for Armour there are at

each PCT as hopefully there will be some that are doing most of the prescribing.

This should make my life easier in terms of only having to email a few PCTs or

more likely having to email a fraction of the GPs I otherwise would. I know one

PCT I emailed said that they dont prescribe it.

Im quite looking foreward to getting this data anyway as Im hopeful that it will

show us that Armour is doing a better job than thyroxine alone. I think we'll

need the difference in the average number of prescriptions for Armour and

levothyroxine to be " significant " to be sure that the medical profession will

take notice as otherwise they could just say it was chance that Armour has less

prescriptions than levothyroxine. Mathematically speaking, " significant " means

that the chance of this difference occurring is less than 5% (P<0.05). This is

the standard that they often use in medical studies to determine whether a drug

has made a difference or not (ie. the chance of it outperforming the placebo by

this much is <5%, so it's probably not chance).

Thanks

Jonny

[Guest guest]

I Jonny - I just realised, I have ALL the email addresses for

every GP in Glasgow City and the Glasgow area, and ALL the GP's in the

Harringay area. Would it help you if I sent them to you - you could do one

email and send it to all of them with your request. You can only send

about 25 or 30 emails in one Email (you send it through the Bcc and not the CC.

I am away after Monday, so let me know as soon as you can.

Luv - Sheila

Hey,

Iv started on this little mission again lol.

I email a few PCTs a few months ago but they said they couldn't give me the

information and that Id have to go to GPs to get it. When I asked if they could

email GPs for me they said they couldn't.

Iv posted the same message on the NTH forum now to see if it would be better in

america sine there are mostly americans on that forum.

I have sent a FOI request too to how many prescriptions for Armour there are at

each PCT as hopefully there will be some that are doing most of the

prescribing. This should make my life easier in terms of only having to email a

few PCTs or more likely having to email a fraction of the GPs I otherwise

would. I know one PCT I emailed said that they dont prescribe it.

Im quite looking foreward to getting this data anyway as Im hopeful that it

will show us that Armour is doing a better job than thyroxine alone. I think

we'll need the difference in the average number of prescriptions for Armour and

levothyroxine to be " significant " to be sure that the medical

profession will take notice as otherwise they could just say it was chance that

Armour has less prescriptions than levothyroxine. Mathematically speaking,

" significant " means that the chance of this difference occurring is

less than 5% (P<0.05). This is the standard that they often use in medical

studies to determine whether a drug has made a difference or not (ie. the

chance of it outperforming the placebo by this much is <5%, so it's probably

not chance).

Thanks

Jonny

No virus

found in this incoming message.

Checked by AVG - www.avg.com

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05:51:00

[Guest guest]

Yes that would be useful thanks Shelia. I think Ill wait for the FOI request for

the number of Armour prescriptions at each PCT to come through before emailing

any actually to see if I can whittle down the number of emails I have to send.

With so many replies coming in from each GP, it will easy to get confused.

But yes Id like this anyway please as I may need it in future. Also, could you

tell me where you got them from as I may be able to get it for all the PCTs?

Thanks

Jonny