Persistence pays off

[Permexpi]

Today I finally got access to my detailed coded record online from the NHS. I have been asking for this for some time. I believe there is a deadline for access to be given to everyone by the end of October so maybe it was part of that process rather than my persistent requests, but I'll take it as a win anyway! Now I have to go and study all my test results, that will keep me busy.

[Nackapan]

I'm in the system. Had some on paper . Not complete though 😕 Only made request as my NHS app I was using blocked my out of all sorts by surgery.

[mickeymouse42]

It's good that you have got access. The coded events have a complete history of all blood tests which is very useful. It took months for me to get access and I had to ask NHS England to make it happen. I don't get why so many GPs are so reluctant to allow people to see their own records; it's essential information for understanding the history of your health as it declines over time.

[Permexpi in reply to mickeymouse42]

I don't understand why doctors are so reluctant to communicate and give patients access to info either. The more information I have the more I feel like I can take an active part in my own health and well-being and give informed consent to treatment.

I understand that NHS doctors are under serious time pressures so don't want to have to give long explanations but I am capable of finding resources to help me interpret my results. Also I won't be so inclined to go and badger them for info if I can access it myself online, so it could actually save them time!

So far I have picked out a few interesting results that no one has mentioned to me - all I had been told is that I have a B12 deficiency and I only knew it was measured at 100 ng/L because I specifically asked for that info!

Intrinsic Factor test came back negative, so I'm taking that as inconclusive, bilirubin levels slightly elevated, also slightly elevated TSH suggesting sub-clinical hypothyroidism. All else seems normal.

[mickeymouse42 in reply to Permexpi]

Apart from fatigue, do you have any other symptoms - e.g. gut symptoms?

[Permexpi]

No gut symptoms I am pleased to say, just constant fatigue and I only really feel ok when horizontal. I have a low tolerance for sitting, standing or walking, these things can cause a flare up of symptoms like weakness, palpitations and vertigo.

[Tanglewooddream]

Apparently most GP practices are making records available from this month. However, I already had access to my detailed coded record but now all past entries and results have disappeared - it seems we are only getting access to new entries. Does anyone else have this problem?

[Doppydoo in reply to Tanglewooddream]

I have only had access to my records this week. Along with the rest of the UK it seems. I only have my last appointment listed on there from this month? Hopefully it will show previous test results and appointments soon. Judging by the notes written by my GP from my last appointment, i do not think they know we can now see the reports... It was proof that he was not listening to be during the appointment.

[Doris11]

Enjoy your reading 🙈☹️😂

[helvella]

Just to point out that "the NHS app" and everything associated with it is currently England-only.

The version for Wales has, I read, just started to roll out but I suspect few are aware of it. (The technology is said to be the same base as the England app.)

I simply do not know about Scotland and Northern Ireland - at all.