Update

[ShelWhitt]

What waste of time. Just been with DH for dementia assessment. Rudimentary questions, which he answered in a positive vein. So no help there then!. Able to get up stairs. Can get washed, dressed and showered/bathed. Walks using a stick. Helps with jobs around the house. All fine. I did add, that I kept a check on him. He then felt obliged to helpfully point out, that|I had always supervised what he did! Trouble is, I then lost it. Said the problem was, I was in a worse state than he was healthwise, and was not coping; and after sounding off about not being offered help or advice, as to where to access help and advice, when you are ill, burst into tears. To be fair nurse tried to be helpful and said she would ask for me to also have an assessment, for long term illness, as they now do them over 65. I'm 77!!! Have had fibromyalgia?? for forty years, and been diagnosed for more than 10. HB is 81. How does it work that some people get help. Some even get financial assistance of one form or another, when others get nothing? Moving on.....to the saga of accessing my medical/blood results, again. Receptionist explained, very nicely, that it was done privately (I don't know what that means, and didn't ask) and showed me a thick folder of 'work to be done'. I said, I had no problems with that, and now understood it could legally take up to 28 days! That being the case, in the meantime, whilst I waited, could I possibly just have copies of my last sets of blood results (full blood count, and thyroid) to be going on with! Was asked why? Didn't think it relevant, but told her anyway. Said she would put a request in to Dr. and they would let me know by phone. I then asked, if she could confirm that my request for paper copies was actually in the system to be processed, as I didn't want to come back in another two weeks to find it hadn't been started. Obviously touched a nerve, but she did, and has confirmed it is. End of update. Onwards and upwards, ECG clinic Thursday and Friday and physio also Friday.

[humanbean]

Regarding getting copies of all your results, if your surgery staff are going to play silly buggers then you have to approach the problem differently. Begging doesn't work, and it would be easier if you didn't even talk to them face-to-face and, instead, made your requests in writing. I know that legally this isn't necessary, but it is time to do things differently if you aren't getting anywhere.

Write a letter to your surgery Practice Manager. You don't need to know their name. Put your address and the date at the top like any ordinary letter. Then write a letter something like this :

Dear Sir/Madam,

Subject Access Request under the terms of Article 15 of the General Data Protection Regulation (GDPR)

I am writing to request a copy of all the personal data you hold about me in my medical records, held in any format, whether electronic or on paper, and this data is to include referral letters, blood test results, doctors' notes, results of any other kind of testing, letters sent about me, letters received about me, and anything else. I would prefer to receive this data on a USB stick if possible.

Yours faithfully

Your Name

Your signature

NHS Number : Your NHS Number

At the top of the letter write in pen "Delivered by hand on whatever the date is you intend to hand it in".

Put the letter in an envelope, address it to the Practice Manager, and put the surgery's address. Write on the envelope "Delivered by hand on whatever the date is you intend to hand it in".

I've actually included things in the letter that aren't legally necessary e.g. the bit I underlined isn't actually necessary, but it just hammers it home that your request needs to be taken seriously and you are making a request that legally they can't ignore. Make any changes to the letter that you want e.g. if you want the data on a CD then you can mention that instead of a USB stick. The other possibility is you could just ask for copies of your blood test results rather than your entire set of medical records, or you could ask for copies of only the stuff held electronically from a particular date. It's up to you what and how much you ask for.

The other alternative is to change the letter altogether and ask only for online access to your medical records and blood test results. But, again, it is up to you.

Once you've prepared the letter and envelope you should take it to the surgery, hand it to the receptionist, then walk away. If they ask what the letter is for, just say it is for the Practice Manager, don't get into conversation about it.

I would be interested on getting feedback on the wording of the letter and this whole post from anyone who knows about this stuff e.g. DJR1 and helvella

I'd also be interested in knowing whether a patient can supply their own USB stick (still in its packaging obviously) or will have to pay for one.

I'd also be interested in knowing if anyone thinks this letter is likely to get a patient kicked out of the surgery. I know it shouldn't, legally. But I'd hate to make that more likely with anything I suggested.

Oh, another thing... I didn't specify how I wanted to receive copies of my own medical records a few years ago when I applied for a copy and I found that was a big mistake. I got it on sheets of paper - probably at least a couple of hundred pages if not more, which was not in date order, and there are lots of duplicates (e.g. four copies of some records). It would have been much easier to receive it on CD or USB stick, and then I could have backed it all up and organised it on a PC much more easily. As it is I have a massive scanning job to do to get it on to my computer, and so far I've only done this for a few very important pages. And I got my records about 5 or 6 years ago!

[Agapanthus1 in reply to humanbean]

This is brilliant hb, thanks so much 💐😊

[humanbean in reply to Agapanthus1]

I do hope it doesn't cause problems for anyone... I'd prefer if helvella or DJR1 commented on it before anyone considered using it.

I must stress I am not an expert on this kind of stuff!

[helvella Administrator Thyroid UK in reply to humanbean]

The Information Commissioner's Office have their version (just an example) starting here:

ico.org.uk/your-data-matter...

Broadly similar!

[humanbean in reply to helvella]

Thanks for the link, helvella.

[Batty1]

Don't you have access to your health record online?

[ShelWhitt in reply to Batty1]

Short answer no! Tried to access it, but I am a bit of a Luddite anyway. Got as far as it telling me which ? phone or ?ipad it was available on. We didn't have either! Then followed up by saying it was hoped to be available in Spring 2020. Gave up then and went back to requesting paper copies.

[Marz in reply to ShelWhitt]

I think when you do eventually get your results I do not think it will tell you everything that is needed for optimal thyroid treatment.

Reading the posts of this very busy forum it is mostly just the TSH that is tested and Levo wrongly adjusted. I would persevere with the Private Testing we discussed in earlier discussions. By now you would have many of the answers you are seeking. Tomorrow is Special Offer day on Medichecks.

Don't be held to ransom by people who do not have your best interests at heart. Surely 1,000's of us on this Forum cannot be wrong ?

Hope your week goes well.

[ShelWhitt in reply to Marz]

Hi Marz. Good to hear from you again. My intention is to put my latest results on here, when I get them, for you (or others), to give me your interpretation of them, as a starting point. For you to then let me know which tests you think have been omitted, and which I need to take privately. Hopefully, after that, when I get the complete (or more intensive) test results, these can be reassessed. and I can move forward. There is no wonder the NHS is in such a mess when everything seems to be bound in red tape and move at a snails pace. I have always been a champion of the Health Service, but I am starting to have second thoughts, particularly after what has been reported on here.

[Marz in reply to ShelWhitt]

Sounds very positive ! The GP will have quite possibly only done one of the 5 tests needed - the TSH - is usually the one. So if by some miracle the T4 was tested that still doesn't give you the FT3 result - which is the most important test as it is needed in every cell of the body and if low is responsible for over 300 symptoms in the body ...

It is not possible to have ths FT3 tested in isolation - you need the TSH - FT4 - FT3 to read the result correctly.

If you have not been told you have Auto- immune thyroiditis - Hashimotos - then it's more than likely your anti- bodies have not been tested either. Yes Docs do say the treatment is the same - but there is so much we can and do to help ourselves ...

Hashimotos is the most common thyroid issue globally - affecting over 200 million - and yet still stubborn GP's will not test antibodies. Of course there is more money to be made from the many symptoms caused by an under-treated or undiagnosed thyroid issue.

Also B12 - Folate - Ferritin - VitD are not routine tests and must be requested by you. These are covered in the Private Bundle on Medichecks that you were looking at ... I personally would not wait ...

The health of the heart is very closely linked to the thyroid too - you can google Low T3 Syndrome and Hearts 💕

EDIT Medichecks tests on offer throughout Feb ... see post on News Feed with link...

[ShelWhitt in reply to Marz]

Back at surgery on Friday, will check again then, if have not heard tomorrow.

[Marz in reply to ShelWhitt]

healthunlocked.com/thyroidu...

Special Offer for Blood Tests in the above link - a bargain !

[ShelWhitt in reply to Marz]

Thanks Marz. Just to recap - It is the Thyroid Check UltraVit Blood Test, £79, you think would be appropriate for me?

[Marz in reply to ShelWhitt]

Yes that's the one ! Go on - treat yourself - a Valentine Present Can you do the Finger Prick testing ? - as that is free. Other methods have a cost - all detailed on the site. Good Luck !