NEW ACCESS TO Historical Digital GP Records in ... - Thyroid UK

Thyroid UK

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NEW ACCESS TO Historical Digital GP Records in England

DJR1
DJR1

If like me you have repeatedly requested and been refused access to your online GP records please be aware the GP contract in NHS England has now changed.

All practices must give full historical access on REQUEST. This means you should be able to see all your computerised medical history with the summary of the conversation you had with the doctor/nurse/physio. You should see test results and medication. This is in addition to the full record going forward.

As I have posted before not all GP Practices have the software system to do this notably VISION. Patient Access, EvergreenLife and others DO have the functionality so it is worth checking with your Practice.

This information refers to England only

If your mission is to see thyroid function tests over the years bear in mind that they may just be recorded as ‘normal’ with no further detail. It seems for many years my test was just TSH. However access to medical records is important not only to see results etc but also to correct errors which may affect your treatment or even insurance claims.

My full access was switched on yesterday. After the years of refusal, as the executive GP does not believe in giving patients access to their own data, this feels like a huge success! Many other Practices have been giving full access for over 15 years so we now have an even playing field. The image is taken from Annexe A p54 of the BMA GMS contract.

Please ask for your online settings to be adjusted if you want this access. Use the information below if you meet opposition. Good Luck!

57 Replies
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helvella
helvellaAdministrator

Your posts about these issues have been, and continue to be, extremely welcome.

Thank you.

Did you notice they are not allowed to use Fax machines anymore ?

I thought Fax machines had become extinct decades ago......

I'm tempted to say that while online access may make it more convenient for those people who like all things 'digital' , the old fashioned 'Subject Access Request' route of accessing historic record allows you to see photocopies of the actual original paper records, as well as the transcribed to digital version.

I found lots of juicy bits of information when deciphering the doctors famously illegible handwriting . And the best bits were not transcribed into the later versions.

So i think there may still be a benefit in getting your historic records the old way for those of us old enough to have had 'paper' records.

DJR1
DJR1 in reply to tattybogle

I agree with you the detail in paper records is useful however my group of campaigners are focussed on easy access to records in case of emergency and the rights of patients to access information held in accounts online.

Medical records in the NHS are a shambles and not joined up. Our experience with a very sick relative in an emergency situation was frightening as information about his complex problems was not available.

Your online access to your record may be the only thing available in an emergency situation and may save your life. Your medical history is not shared within the NHS and with few exceptions cannot be accessed by other GP/hospitals.

I write on this here

cancermumblog.wordpress.com/

I have used Subject Access Requests for the paper copies of our records as our online GP record only started in 2015 as the computerised record was not transferred. This was common practice until 2017 so if you have moved GP Practice or moved house your online record may only start from that date. Some Practices scan in the paper records but our current practice does not. The paper records are warehoused off site. I would Certainly recommend getting copies of all paper records.

We feel we have achieved a small victory as the view that patients are not entitled to see their GP records without legal process has been abolished.

We now have the right to full access to the online record on our phones after all we can’t carry our paper record around with us.

I have written several blogs on the link above

BrynGlas
BrynGlas in reply to DJR1

I am very glad that this has been put into place and thank everyone who has been part of the 'lobbying' etc that you have had to do. It is a job well done.

BrynGlas
BrynGlas in reply to tattybogle

I have requested my full records here in Wales, there is a note on the necessary form that patients should consider the cost to the Health Service of printing out these records, before going ahead and ordering them. Adding a guilt trip to head us off it seems

RedApple
RedAppleAdministrator

DJR1, Thank you for posting this important updated info.

Because posts disappear from view so quickly on this busy forum, I have decided to make this a 'Pinned Post'. (Pinned posts are listed on the right on largish screens but may be elsewhere on small screens). Hopefully that way, over time it will be seen by more members.

Thank you for pinning the post.

I post regularly on Twitter as well as HU but getting information into the public arena and keeping it there is difficult. This information is not publicised by primary care or the NHS.

Thanks for posting this info (and all the other info you've posted in the past).

Do you have a link to the information you've given in your picture? It is helpful to see information in context if possible.

DJR1
DJR1 in reply to humanbean

dropbox.com/s/moffhehg2tp0c...

I have had problems with links the Annex keeps disappearing. This is from my Dropbox Account. I download and save these days as stuff disappears very quickly. I hope this works

DJR1
DJR1 in reply to DJR1

Looks okay.....go to .....Annex A: List of 2020/21 contractual requirements and

non-contractual agreements page 53

humanbean
humanbean in reply to DJR1

Thanks very much for the info and the link. :)

Well done DJR1 for winning your fight for the right to party (or at least be party to...) your medical records. The executive GP (ha!) can jog on, now. His reticence to share is the mark of a person running scared...there is no reason why you should potentially suffer because he's an asshat.

Is there anything inherently wrong in we thyroidies ending up more knowledgeable than our GPs and all too often our consultants concerning this small and troublesome gland? I hope that you find the additional information useful. Best to you x

DJR1
DJR1 in reply to Rapunzel

Ah thank you. The executive GP is in his late seventies and very old school. He doesn’t see patients but runs the Practice group. He needs to retire as the world has moved on. I hope more people find out about their right to access. Best wishes

JaneChapple
JaneChapple in reply to Rapunzel

Very true Repunzel, but sadly the NHS thinks the thyroid is not a major organ to worry about and just send us away with levothyroxine at as low a dose as possible (especially when older!) and if we still suffer symptoms say we are depressed and need antidepressants and tells not to worry as everything will be fine, not!

Regards

JaneCx😣😎

Thank you very much for this post, and all your past help with online access issues.

After trying and failing some time ago to gain online access, I tried again today to get the basic level of access to my digital record because it has become impossible to order repeat prescriptions over the phone. The sole local GP practice covers a vast rural area; anyone who is housebound or without transport or internet access (still a big problem here) has been penalised by this latest policy.

My husband has online access, but until he intervened with the practice on my behalf this morning, I was not granted a login or password. Once again, I have to have a man back me up with the medical system in order to get anywhere!

However, the practice still maintains that even under the new GP contract patients are still obliged to go through a formal paper application process (pre-printed form, letter and ID) in order to gain full access to their historic digital record. From my initial reading of the new contract, this would appear to go against the spirit of it. What do you think?

DJR1
DJR1 in reply to Hillwoman

I think on the first registration for online access to digital GP records a formal ID check has to be recorded. It is a security check to make sure access is going to the right person.

Any future adjustments to that access can be a verbal request.

Historic digital access still has to be requested as it is not part of the standard access. If you want to see your historic records write this on your application form. Historic access has to be given on request except in cases where harm would occur on disclosing information.

Hillwoman
Hillwoman in reply to DJR1

Thanks very much for the clarification.

What about an access to children's record?

I have asked so many times...and the receptionist was always making such a big fuss. The peadiatricians and other professionals always send me test results....not the gp surgery.

Thank you for all advice.

DJR1
DJR1 in reply to Ania22

There information about Proxy Access in this link. It a quite clear that parents can apply to manage their children’s digital GP records. I will do another post as I can’t post another image on existing thread.

mysurgerywebsitemobile.co.u...

Is this through the Systmonline service? What charge do they make or will it vary from surgery to surgery as some have quoted me £40 for full access to historic records and my current one will not provide so much as a print out of TSH results.

First of all charging patients for copies or access to medical records is against GDPR.

This has been the case since 2018.

If your surgery tries to charge you for access report to the local Clinical Commissioning Group (CCG)

As far as I am aware Systmonline should have the functionality to provide you with access to your GP online record. I will into this further but as far as I know the VISION is the only system that needs to be updated. It may be Systmonline have a helpline and they would be able to advise.

I would contact the surgery and request your full historical and prospective access and if this is refused ask for a written explanation.

DJR1
DJR1 in reply to DJR1

Here is a link to useful info

england.nhs.uk/wp-content/u...

I can’t post an image in replies but I will do a new post

DeniseU
DeniseU in reply to DJR1

My GP surgery uses Systmonline and I can see my medical records as far back as when I was vaccinated as a baby and I’m 56! I’ve been using it for years and it’s very useful. I did have to click a couple of buttons early on to gain access to certain areas once I was in but that was no issue. I’m always checking my records as mistakes are made & it now appears I was interpreting my blood results correctly and my usual GP wasn’t; a trainee GP joined the practice and has realised I’ve been overmedicated for years which he is now remedying along with all the symptoms that’s brought!

DJR1
DJR1 in reply to DeniseU

Thank you for confirming the accessibility of Systmonline and what a brilliant post showing how important it is to have access to our own records.

All GP systems apart from VISION can and should be used like this to benefit patients. The functionality is there but the reticence and lack of knowledge of some Practices is an unfortunate barrier.

Access to our detailed medical records should be seen as a patient safety issue so mistakes can be spotted and put right. I hope you get your issues sorted now.

I had to sigh up to the GP app which I had no choice in. But gave permission for my medical records to be online so I can see them. I have access to most records but they have always hold back records that could discriminate the doctors or surgeons. I’ve found that in the past anyways as I had a surgeon caused serious damage to my insides and basically got away with it.

This is before I was diagnosed with UAT last year.

DJR1
DJR1 in reply to Sh69

You must be offered a choice of GP App. The GP Practice will use a particular Computer system such as EMIS Web , VISION, Etc

You can access your account using an App of your choice. You should be offered a choice by the Practice on Application.

So you could use Evergreen Life or the NHS App. You can set these up yourself as they will use the same Practice ID and Linkage keys that you used to set up the GP App you use now. If you are not sure of these you can usually find it on your App account page.

I use Patient Access, Evergreen Life and the NHS App as they all offer slightly different Services

DJR1
DJR1 in reply to DJR1

Under the new rules from April 2020 you can request access to your historical digital GP records. You have a right to see what information has been written about you and your care. There are specific rules on redacting records. These are mainly concerned with third party data and safeguarding. Records cannot be withheld if they are contentious around treatment. The ICO is useful for more information. I believe NHS England are currently working on further information on redaction and this will come out shortly.

Sh69
Sh69 in reply to DJR1

I know about the App and patience access app

Most GPs are offering the service, unless it’s postcode lottery area. I’m in Lancashire and they want you to sign up to the app so you order you’re prescription from the app and make appointments etc.

No medical records are on the app till you fill in a form with recent ID, then they add your medical records online. I can view mine and print them if required.

I know the laws and in the passed I had to pay £40 to get them printed, which then I noticed that they had removed the things I needed to take the surgeon to court. So basically lost the fight.

This will be the new way forward in most areas soon. They want you on the App.

DJR1
DJR1 in reply to Sh69

It is part of the General Medical Contract that GP have to offer prospective medical record access for all registrants starting in 2019.

From April 2020 historical access has to be given if the patients requests this.

This is a contractual obligation to remove the previous postcode lottery. If practices do not provide this service they are in breach of their contract with the NHS. The only exception is practices who use a system called VISION as it does not have the functionality. Upgrades are happening to ensure that these practices will be able to provide the full service within a time frame.

I think I am running 2 posts here but you can usually choose which App you prefer to use as most of the big ones like Evergreen Life, AskmyGP, NHS App are compatible with all GP computer systems.

My Practice uses Patient Access and they tried to limit choice to the Patient Access App. This was a breach of their contract as they excluded Evergreen Life and others. The DoH intervened and they had to offer choice.

There are many advantages of online services not least being access to your full medical record, ordering medication and booking appointments. Application is two tier. Basic access allows appointment booking and medication requests. Second tier allows access to the medical record so you can see what happened in your consultation, all letters/documents/test results etc. I run three Apps concurrently as each App offers slightly different services. My preferences are Evergreen Life, the NHS App and Patient Access.

If this hadn't be in the pinned post section I may well have missed it until much later on so thank you RedApple for your forward thinking as I am still trying to access my historical records before 2013 and I have found DJR1's posts and advice immensely useful.

Having (partly) followed your arduous journey to obtaining your records the access you have now, must surely feel akin to a lottery win! 🍾🎉🏆

Why medical professionals feel patients must be shielded from or somehow not entitled to records pertaining to our personal health is beyond me. I can't quite believe it's 2020 and such access has only just be granted! Do you know if practices have a time limit to implement a request?

DJR1
DJR1 in reply to ILR2019

Thank you for your kind comments. I am unaware of a time limit relating to the switch on of full historical after your request.

However if you frame a Subject Access Request for your historical data and ask for it as access to the online digital record it must be 20 days. My access was switched on in less than an hour as it merely required 3 boxes checking on the computer system. My record had no third party data or information likely to cause harm.

Bear in mind that if you have changed GP before 2015 there might not be an online record as it was common practice to only forward a paper record. My record starts in 2015.

I've just double checked on my gp app and patient access and I can only search prescriptions and vaccinations how can I literally have my whole file for the last 35 years so I can see it. I have a really important time going back 35 years when I'd love to see my notes and diagnosis back then ? is there a way ? ( I already completed forms last year with ID for getting onto both sites I've mentioned ?

DJR1
DJR1 in reply to Peroxideblader

If the surgery is using Patient Access and you have previously asked for extended access they are dragging their feet. You should be seeing all consultation detail from April 2020, test results, appointment screens, prescription requests, letters and documents.

For historical data you must now make a clear request that you want to see your full digital record. The option to request this historical access only came into the contract in April 2020.

I would print off the section in Annexe A of the contract where this is clearly stated. This is the image at the top of the thread. You can then expect all prospective and historical digital records. If this does not happen complain to your local CCG.

It is likely that the Practice is not up to date with their General Medical Services contract. Presenting them with the printed evidence leaves no room for objection. Good luck.

Peroxideblader
Peroxideblader in reply to DJR1

thank you..i can't even get through to my surgery right now I hung up after 50 minutes still number 12 in the queue so I don't know when I'll get through to them to ask further. I wouldn't mind but what a long winded application process at the reception to just complete the forms...all for nothing ...

DJR1
DJR1 in reply to Peroxideblader

You have my sympathy, my practice refuse email and turned off messaging in Patient Access. Contact is by letter! or going down in person if you don’t want to spend all morning on the phone. I can’t leave as they took over the other 3 local practices which means I am ‘out of area’ for the next.

Peroxideblader
Peroxideblader in reply to DJR1

It's just a joke isn't it...i want results from recent thyroid results they classed as normal before I have to go private but no email either. don't think they've ever had a system to contact them other than phone or in person but they are not open to patients due to covid so I can't even nip down. I can change practice in fact it's on my list because I moved area but they're all just as bad in my eyes !

Thanks for this useful information DJR1! I am going to ask my PM via e-consult. I tried to get a form from my disabled son's notes as I act as his Assignee. The doc had put on the form do not let patient have this form as it is confidential between doctor and ESA! Firstly it was the infromation I forwarded to her as I knew they didnt have the up to date info the ESA wanted, secondly I had requested I be allowed a copy of this form, and she didnt say I could have it (she was being very cagey about it). Thirdly the docs were forwarded to ESA by fax as they were urgent and go to a POBox no, so wouldnt have got to the Dept that needed them on time, and they wouldchave to cancel the telsphone assessment. ESA say you cant send email as they should go by Fax only! I wonder if it is legal to send people's records to a PO BOX No? I eventually got a copy of the form via the local dept I was dealing with (via email) and low and behold couldnt read her writing. In fact the chap in the local dept said they had a heck of a job to decipher it at all!. Can we complain about illegible doctor's writing?. In this case it was very important as the ESA needed this info regarding son's higher mobility ESA! Thankfully it was agreed we didnt need 4 yr assessment anymore, but the amount of phonecalls I had to make to the surgery was ridiculous. If I hadnt given them up to date info it could have been a different outcome, yet ESA say there should be no need for me to contact GP! They already had plenty of info, so it was all done for nothing!

Also when we were at the surgery and my husband was poorly last year the doc said she couldnt see our records from previous surgery as we had opted out of shared data. Will they be able to put those old records on our system or will we have to opt in whilst they do this?

Thanks so much

JaneCx😥😎

DJR1
DJR1 in reply to JaneChapple

Your GP sounds confused and ill informed like mine. I feel for you, accessing information for ESA etc is a nightmare. My GP refused to get involved in benefit applications for my son which meant all the responsibility fell on my shoulders.

I see no reason why GP information for benefit applications is confidential and access should be given but I am not an expert in this area. In my experience of going to mandatory reconsideration the whole benefit system is a shambles. This experience was one of the drivers for patients/carers to have access to all their historical GP records.

Handwritten forms that are illegible should be returned to the GP for clarification and I don’t understand why the agencies don’t do this. You can request a copy of all information regarding medical assessments and information the DWP hold under GDPR.

Next problem

Opting out of sharing information covers a variety of issues. You may have opted out of

1. Sharing your “summary care record” which is a short summary of medication, key diagnoses on the national NHS spine accessible for other providers Like hospitals to access in an emergency. There was a national form sent to every household many moons ago.

2. You may have opted out of sharing your data for research and asked for it to be used only for your care

This does NOT have any bearing at all on GP records being passed on to the next surgery if you move GP Practice. It is part of the GP contract to transfer all your previous digital and paper records to the next surgery. However if you moved before 2015 it was not common practice to transfer the digital record and usually a paper copy was forwarded. Your GP is talking through her hat!

I would speak to the Practice Manager about this and if indeed they have no digital or paper record state you want a lost records investigation to track them down. they have the paper record relevant information can be scanned onto the GP record. This was done for my son however 400 documents were scanned into the record as attachments with no headings! It remains entirely useless as not even I have the patience to download each attachment to see what it says.

I don’t know your circumstance but you sound like you act for your son and manage his care. I am in the same situation. I have proxy access to my son’s full record. I use the Evergreen Life App to Access our records. The Evergreen Life App is available to use across all the GP systems. You can arrange proxy access on the App without asking the GP permission unlike Patient Access which I believe needs a form and permission from the GP.

You might also benefit from the “Personal Records“ section on the Evergreen Life App. Within this section there is another file called “Documents and Letters“. This little file is a Godsend to me. You can photograph all information like ESA letters, Power of Attorney and keep a digital record in the App. I have created 15 years of medical record for my son in this section. All information on his health is available on our phones at any time.

You can download the Evergreen Life App to Access your medical records using the Practice ID and digital keys given to you by the Practice to set up digital access. A word of warning ......my practice said the only App they used was Patient Access and had crossed out Evergreen on the application form. This was b* you can use any App of your choice.

This information refers to NHS England, if you are in Scotland Wales or Northern Ireland there may be different policies on GP record access but the Evergreen Life App is universal and can be used independently of GP record access.

If I can be of further help please ask. Good luck with it all.

JaneChapple
JaneChapple in reply to DJR1

Thanks so much DJRI. Yes I do act as Power of Attorney for my son who is 25. (I sometimes wish I didnt). He is special needs and has Hashimotos like me. You can guess the preblems in urred in getting that disgnosis, se ond opinions etc.

Now I have discovered GP's writing is practiczlly illegible but hubby deciphered it better than me! The local Health and Disabilities chap was extremely helpful and emailed the form back to me! Ridiculous as it only had the info on it I had sent accross. If I had not sent it they would have had very little info via the GP so for ESA to say I didnt need to contact GP was a nonsense. Because I sent it, time was saved and even though they struggled with GPs writing it means we dont have to have 4 yearly statements ever again! Im dreading Universsl Credit arriving to our area in 3 years time. Im 65 now so just hope I am still of sound mind to be able to cope with it all. Stupid thing is the cancellation letter came from Bristol even though I was dealing with chap in Exeter. The PO Box where they sent his info was Wolverhampton! Yes the whole social care systemchas been a mess for some time and is getfing worse. Its completely disjointed like most things in this country!

I will upload the Evergreen App. as I already have digital access so shouldnt need to complete another form? We moved surgeries in 2016 in Exeter so that should be ok. Am wondering if I will be able to read any of them though. May be I should put in a formal complaint, but she doesnt know I have the form! I dont have a legal form re Power of Atfodney, it is just what they call it on ESA letters. I suspect I need to look into that too!

Thanks for your help and good luck!

Janexx😎

JaneChapple
JaneChapple in reply to DJR1

Hi DJR1

How so you think this sounds. Feel free to amend!

Hello

I understand that from October 2019 via the BMA GMS Contract I am allowed ro have a full digital copy of my historical and recent mecical records. I am therfore writing to as that these records be switched on for me. I am not sure if you have all my previous records from other surgeries so if not, I would appreciate you doing a 'lost search' for these other records. My previous surgeries were St Thomas MP, Exwick Surgery Southernhay House Surgery,and latterly Isca MP. i am aware that I signed a Data sharing record form to say that I did not want my records shared with third parties, but I understand there should be no problem with you getting the records from my previous surgeries. However, if it is a Data Protection issue, please take this e-consult as my authority to allow you to collect my other surgeries records.

I would appreciate your input. Might ask for full paper copy as well. Will do other family members later!

Best wishes

Janexx😎

DJR1
DJR1 in reply to JaneChapple

Just a few things

Access to the historical digital record was from April 2020

Access to prospective records was from October 2019 for new registrations and from April 2020 for existing patients.

The GP staff will not do a search for missing paper primary care records. The Practice Manager must refer to a separate unit called Primary Care Support England.

I think you need to

1. Ensure that you have requested historic access

2, Ensure that you have prospective access to records after completing the application last year.

3. Ask if the paper records were transferred if they are missing the PM needs to request an investigation by the Primary Care Support Unit

4. Ask which digital records were transferred by the GP2GP transfer system after your move.

I usually find the PM has more knowledge about these things than the GP. I hope that helps

D

JaneChapple
JaneChapple in reply to DJR1

Thanks DJR1

Im going to send via lerter and then I can get gubby and son done the same (they know I act as his Assignee, but I shall check that and make sure its on record too!

I also intend getting paper copies of our medical records at hospital as they are about to go digital and if you go and see someone there none of your file will be on the ne digital system which is ridiculous really. They can rquest a file but that will usually be after they have seen the patient! Its a real nuiscance but I need to make sure we have everything correct and up to date - it will give them all something to do!

Thanks again.

Regards

Janexx😎

If they have the paper records......

Missing if - sorry

This information is so useful, i have just changed g.p surgery and was able to access full records at last one.

I have just been to the practice to request full online access to records (i am currently having lots of tests etc and like to keep on top of it all) they point blank refused access to online records... simply saying it's their policy!! They use sysmonline (something like that) i can only book appts and meds online.... no records. Is this legal?

From what i have read all should be online from april 2020... i am livid as last practice was so accommodating, this is a practice in knightsbridge London (supposed to be in a good area) yet the surgery staff are bloody awful.

Hi Sweeneythyca

Its called SystemOne and its not great tbh. It only shows the basics and no consultation detail. Am going to get letter to PM and she can do some work for a change. I have blood test on 15th and will take lettwr in then to make sure they get it and put it urgent, for PM attention. I dont think it is legal but surgeries/hospitals get away with loots of things that I dont think areclegsl. I plan to get my hospital records as well because we are going digitsl next month and the old files are not even being scsnned in. The consultant will have to request them if he feels they are needed which is just going to slow diagnoses and treatment in my view. Cost - £73M and risiing!😣😎

Mine is called systmonline... fingers crossed for u x

DJR1
DJR1 in reply to Sweeneythyca

Please see the post from @DeniseU early in this thread. All systems including except VISION have the functionality. You are being told porkys by the staff. This usually means they don’t have the up to date information on access or the technical knowledge. Print off the contract page and insist on your access. If you use the Evergreen Life App they have a helpline and will often talk practices through the set up. This makes me so cross that this continues to happen across the country.

DJR1
DJR1 in reply to DJR1

NB @DeniseU is a Systmonline user with full record access!

DJR1
DJR1 in reply to DJR1

*All systems EXCEPT VISION

I attempted to get my historic thyroid tests since diagnosis last year. I live in North Wales where we have no way of digitally ordering repeat scripts, or access to results of any kind, or notes. What I found was that my test results only consisted of 6 results which had been recorded or filed within the 2 decades since diagnosis and being on Levo..

The present GP at my practice has been here at least 5 years (wish I had a memory) and there was only one test result available from his time here too and I have had tests each year.

I am cynical. I don't believe that my hypo problems have ever been treated correctly since diagnosis and beginning treatment with Levo.

I have always been fobbed off by being told that I was perfectly normal on Levo and that an endo would never agree to see me because my results were text book perfect, though I was never seen the results or given any inkling of what they actually were, except normal, or low - increase Levo.

I don't think it is outside the realms of possibility that tracks might have been covered, but maybe it is just my suspicious mind that is working that way.

Anyway, I don't think it will be happening in North Wales, though I would like to be wrong about that.

DJR1
DJR1 in reply to BrynGlas

There are a several answers here!

I like you wanted to see my thyroid function tests going back ten years. Like you I found only 2 or 3 results, which stated “normal” no numbers or reference ranges, despite annual tests.

Why is this?

The reliance on TSH as the only measure of thyroid function was historically held up to be the gold standard. I believe in some practices it remains so. However T4 and TSH is more common now although there remains variation throughout the nations. Often if TSH was normal it just wasn’t recorded.

Another reason for poor recording is down to historical technology issues. There was/is no transfer of data from the hospital online. Paper forms were generated and stuffed in Lloyd George folders. It was probably easier if the value was in range,to note the result as normal in a one liner in the record. Space and filing were saved and the paper result shredded. Either that or the paper hospital report fell out of the folder which is also a common problem.

Add to that the poor education and poor understanding of thyroid health the numeric detail was/is not considered important if the result is in range.

My results in NHS England became properly visible in 2014/5 where technological infrastructure improved.

GP systems like EMIS had templates which needed populated fields for TSH and T4 because it produced trend graphs. The improved technology forced better recording of results and reference ranges.

The current view mentioned by many contributors on this site that a full thyroid profile plus vitamin and mineral levels is the only true assessment that will show how well your thyroid is functioning alongside a full clinical presentation. There is very good advice by others on requesting these from your GP or arranging the full set from commercial providers so please refer to those.

What I would say to your comment about referrals, is, that if a person has continuing clinical issues that have not been alleviated by treatment with Levothyroxine despite in range results you can insist on being referred to a specialist for further advice.

Please reference the NICE guidelines for the treatment of Hypothyroidism to confirm this.

People all over the UK have the same issues with historical thyroid results it really isn’t North Wales rest assured. I do not have information about online systems in NHS Wales or what is available. In NHS England we can now track our information easily online.

BrynGlas
BrynGlas in reply to DJR1

No, I know it isn't only North Wales, what I meant when I said that is that here, we have no electronic way of ordering prescriptions, my chemist still has to walk to my surgery three times a day and pick repeats up, we are still in the dark ages here. Although the old paper records have supposedly been turned to electronic versions within the practice here where I live, electronic access for a patient to their own test results is non existant.

And believe you me I have asked both for different medication and for a referral to an Endo. I was told that my blood tests were textbook perfect and no Endo would agree to see me because of that. I was never given a test result and never told the values within it, as you say, 2 decades ago I was not allowed to know such things.

And if I had been told, I would have not known what the devil they meant then.

Without this site I would still know nothing, but I have made no bones about informing everyone involved that I am complaining now, I refuse to be quietened and that is all there is to it. I will treat myself if I have to, but I am not taking the blame for the last 20 plus years and the hell I have had in that time.

The Nice site is next on my list for perusal, but thanks for the nudge ;-)

DJR1
DJR1 in reply to BrynGlas

Keep shouting about access to your records

Dr Ann Marie Cunningham is a good person to write to/email she is associate medical director of NHS Wales Informatics Service

Go armed with the NICE guidelines to your GP

If you can’t get anywhere

Do private tests with Medichecks/ Blue Horizon etc

Self treat like me by importing drugs for personal use. This is what we are driven to sadly. Good luck with it all

BrynGlas
BrynGlas in reply to DJR1

Thanks for the Info , much appreciated

DJR1
DJR1 in reply to BrynGlas

PS do you have a full paper copy of your historical GP record?

Have you asked your current GP why the results for the last five years are not recorded?

This post should follow the post underneath. Out of order apologies D

BrynGlas
BrynGlas in reply to DJR1

I have requested my full record but they are holding me to a 30 day limit in time, so trying to be patient, but I have included lack of tests results into a complaint I made to health board, MP, Assembly Member & GP was copied into every complaint I have made or Message made to others. So if he hasn't seen it, he should have read it.

I have no way of contacting my GP directly, though his wife is Practice Manager. If I rang the surgery I could't speak to him. I sent him a letter which I hand delivered (took a copy!) And he was scathing. telling me how many letters he received daily, Insisted it took him too long to read and accused me of complaining of having a "swollen Finger" I can assure you that I wasn't at all.

The first thing that people advise is to go to your doctor, but how do we go see our doctor with Covid.?

I have fired another complaint off this afternoon because he says my FT4 is too high but I don't agree, I did point out that it has been high for some years though.

.5 higher than in test done in 2019

22.0 range 12.00 - 23 ie 1 off upper range in February, and

New result was 17.9 range 7. - 17.0

He told me to reduce my levo to 125mcg from 150 cg I refused, he rang me on Friday last week and I told him that I was not going to agree to that and he said OK.

But today my chemist rang to tell me that my levo was reduced and that my named brand Accord, does not come in 25mcg strengths, so it means either I take the brand that I am given in 25mcg which I prefer not to do, or take a 100mcg only from now on.

I have complained and told him of my anger and that I will hold him totally responsible if my health goes back because of this. He agreed with me.

I think he is upset because I am a mere woman who dares to disagree with me

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