Getting hold of my data

[kc4t]

Hello!

Unfortunately as my hsp was progressing I moved from Northern Ireland to England where I've finally been diagnosed and in the next few months I'm moving to Scotland. I've ask the GP for my blood results and all the test info - I'm keen on tracking this long term as I'm only 35 and I understand this thing is likely to stay will me. I've been sent log in details to the patient online system which tells me my test results are not available. Having asked the GP they said as all my results were done by the hospital they have no access to them. And when I ask the consultant they say the GP should be able to give me access to them.

So I was looking for a bit of advice. Anyone able to shed some light on who has my test results and who I need to ask in order to get copies of them?!

[Madamec1]

Ok get all my results via Patient Access except when a specialist hasn’t read them. You can ask your surgery for print outs and they should provide them. I recently had thyroid checked and for some reason it isn’t showing on PA but forgot to ask local local Dr why🤔All other results are there. I also keep a log in a little book which I carry around with all the important test results in. My consultant Haemotologist set this up for me so that if anything happens whilst I away from home everything is in black & white without having to go through notes etc. Also has specialist/personal contact details, drugs I am on. Iam PBC IgG4 diagnosed in January this year but apparently subject to anything autoimmune, Alopecia at age 22, B12 def,hypothyroidism, mild asthmatic and appears eosinophils elevated for about 10 yrs. now back to normal. On Pred, Aza, & Oxi. Feel fine. So far no aches & pains. Cindy

[kc4t in reply to Madamec1]

Hi madamec yes patient access is what I have. But there are results on the system. Only that I have no allergies and my repeat prescription requirements. I don't understand why there is nothing on the system. I've had two years of tests that must be somewhere.

[Madamec1 in reply to kc4t]

Have you taken your iPad/phone or what you use to the surgery so that you can show them what you are seeing and not seeing. I just click on medical records, click on 3 lines left hand side and then click on test results and they are there. My results from Feb aren’t showing on mine but are on the system but I know the respiratory prof hasn’t looked at them yet so assuming this is reason. Who knows🤔

[kc4t in reply to Madamec1]

Good idea - I'll take some screenshots from my desktop on my phone to show them. I dont have a tablet that will function without wifi. Thanks for suggesting

It doesn't quite explain why the GP cant see the data that apparently the hospital have though. I have asked the consultant again and have yet to receive a response about how I can get hold of it. Just one more thing to keep on about i suppose!

[Madamec1 in reply to kc4t]

That's strange as the one lot of bloods I had taken at the hospital for the consultant can be seen by the surgery but not by me.

[Hidden]

I often wondered about this.

My GP is not in the same local area as my rheum hospial, where my results are kept and so far not sending me a copy after over 12 months since these were requested. Data protectin act etc.. I had to ask GP to get a copy on my behalf. It's odd, as to why. Results, I thought, belong to the patient, not hidden away in hospital as if something for them to keep as a memorabilia.

[kc4t in reply to Hidden]

I agree completely!!

[kc4t]

My consultant has emailed me my test results directly which is great. But there are no reference ranges in the data. Anyone have any good UK NHS websites that might help me out in interpreting these? The description of my googling so far has been wide ranging and I'm not convinced accurate.