Any thoughts on what might be you? - AF Association

AF Association

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Any thoughts on what might be you?

john6 profile image

I had a Colonoscopy on June 8th with the results due in 2/3 weeks. On two occasions prior to this, my wife and I had had blood tests for other separate issues sent to the hospital only to find out the surgery had not passed the results back to us, it was only due to us, that we found out that they had actually had them. I had a word about this and thought it had been sorted.

When I found out that this is happening for a third time ie Colonoscopy, I decided to verbally complain to our Health Board. Today I received a call from our Practice Manager who told me; It is not down to us to tell you the Hospital test results as it was not us that requested the procedure. The bottom line being is that they have been sat on this for the past 3/4 weeks and have done nothing - I still don't know and as you can imagine I am not a happy chappy. This afternoon an email has gone off (telephone call before) and now they have something in writing.

Thoughts peeps?

42 Replies
BobD profile image
BobDVolunteer

You have the right to any and all test results and minutes from consultations but I suspect must ask in writing at the centre producing them. I seem to recall completing several forms for different departments (cardiac, cancer etc) over the years and have a huge door stop file of such correspondence.

john6 profile image
john6 in reply to BobD

Yes, I realise that I can get hold of my medical records - basically an individuals right. What I'm annoyed about, is a complete breakdown between the hospital and the GPs, a classic case of the right hand not knowing what the left hand is doing.

Falco1 profile image
Falco1 in reply to john6

Have you signed up to the NHS App to see if the hospital have added them to your records. The surgery didn't know my recent hosp test results then a week after coming home I found that they had all been uploaded to my records. Just a thought!

john6 profile image
john6 in reply to Falco1

It was not something that I was aware of, I will look into it. Thank you.

BobD profile image
BobDVolunteer in reply to john6

John this is not about seeing medical records it is about being copied in to all results etc. I have ALWAYS been sent copies of ALL correspondence between specialists and my GP.

Falco1 profile image
Falco1 in reply to BobD

Wonder if different health trusts do things differently as you say you have always been sent health results whereas I am under Hampshire Trust and only find out results if I ask or look them up

BobD profile image
BobDVolunteer in reply to Falco1

Devon and London cover most of my health needs so doubt it. . It is all about that initial demand for such information which I completed some fifteen or more years ago. Never needed to ask since except local GP when they do an ECG I have to ask for a printed copy. . I had a 72 hour holter earlier this year done remotely by a firm in Yorkshire and I had a full report.

One must be proactive.

john6 profile image
john6 in reply to BobD

There again why should patients have to do that, when all they have to do, is to do their jobs and inform patients of their findings ?

Good luck getting it sorted. You never know the results you want may have been uploaded on there by the hospital

john6 profile image
john6 in reply to Falco1

Thank you.

I think you will depend upon who ordered the tests. Certainly our surgery doesn’t inform patients of results automatically but you can access them online if the GP’s ordered them. If secondary care consultants ordered them them my understanding is that the surgery is under no obligation to inform you. If you sign forms at the hospital you will get a copy of the consultants letter to the GP but as Bob says - lots of form filling in for that to happen.

Don’t for one minute think that the NHS operates as one organisation.

Bob may remember a lady at Patient Day trying to explain the various structures of the NHS - she lost her audience after about 2 mins!

john6 profile image
john6 in reply to CDreamer

The hospital Doctor/Surgeon was the one who said the results would be sent to my GP. In any event I would have thought that [they] between them would have a line of communication set out and not a line of demarcation on whose job it is.

Buffafly profile image
Buffafly in reply to john6

They may not have written up the report yet. I suspect more things are falling behind than ‘just’ elective procedures!

john6 profile image
john6 in reply to Buffafly

Why would they fall behind it is not a C19 issue, the department concerned was working within C19 guidelines, the results would be through in2/3 weeks. I sent an email yesterday (complaints department), as of today I have had TWO phone calls and it is being addressed as of now and "Is it alright if we close this complaint ?

Apart from my GP surgery it is closed of a fashion, however, I do not buy into "We have 10,000 patients on our books - we did not instigate the procedure, so it is not our job"! With this attitude we now know the reason as to why cancer patients are dying.

CDreamer profile image
CDreamer in reply to john6

You might think so, I couldn’t possibly comment. My experience is unless there is something wrong you won’t hear anything unless you register with both the hospital and the GP surgery that you want copies of all correspondence between secondary and primary care. The results may well have been sent to your GP but that doesn’t mean they will automatically inform you.

john6 profile image
john6 in reply to CDreamer

There lies the danger, something that I have been guilty of ie " Unless there is something wrong - then you won't hear anything"! It all falls apart if both parties think the other has notified the patient. It leaves me wondering how many have died from poor practices.

CDreamer profile image
CDreamer in reply to john6

Exactly. And why you have to be on the ball, be constantly proactive, understand how NHS operates and how to negotiate it.

They are in fact correct, it is the originator of the request to whom the results are returned so whoever called for those tests to be done get the results and not the patient. This has happened to us hence the knowledge so you need to contact the originator and/or your GP as a copy would be sent to them too HOWEVER there are lots of anomalies going on right now and it seems as if anything goes, the sooner everyone gets back to normal working the better.

john6 profile image
john6 in reply to opal11uk

Thank you. I tend to look at our health as a joint responsibility ie that everyone works together - not as mentioned in one other post of mine "demarcation". This I find is quite despicable on such an important thing as health, I mean, how hard is it to pick a telephone up or email as to how one is doing?

There is no communication between our GPs surgery and our hospital which i find incredible in this day and age of modern technology. Surely there must be a way of having a national data base for each patient using their NHS number.

I found myself in Worthing Hospital a few years back and they couldn't gain access to my medical records from Brighton because they were in different trusts. The hospitals are less than 20 miles apart!

My worry is what happens if I have a cardiac related episode whilst on holiday in the UK and nobody will be aware of my history or medication.

Hi John This is also a gripe that my hubby makes. Our GP surgery is really poor at letting people know their test results, even when the tests have been requested by the GP.

He did mildly complain last year and one of the GP’s now sends a text message, but there isn’t a uniform policy on letting peopleknow their results. Unfortunately a lot of folks assume that hearing nothing means all is OK.

Thomas45 profile image
Thomas45 in reply to Maggimunro

At my medical centre it's made quite clear that patients have to contact the medical centre after a week to find out blood test results. At that point you're also told if a follow up appointment with the GP is needed. If you forget to phone then if you need to follow up a test the medical centre phones the patient.

Maggimunro profile image
Maggimunro in reply to Thomas45

Well you have some clarity and a protocol to follow, which is good. Clearly our GP practice hasn’t got it’s act together yet.

CDreamer profile image
CDreamer in reply to Thomas45

That’s how ours works as well - you need to contact the surgery for results in the afternoon the day following the test but that only applies to blood tests the GP has ordered. My consultant wants the results but I have to formally request he be sent a copy of the results otherwise I have to go to the hospital and repeat the tests. Sigh!

For hospital ordered tests it’s a copy of the letter from Consultant to GP.

Some of my tests are now showing on the NHS App but again only when the GP initiated them but our hospital has just initiated a new computer system which if you enroll you can access your results, make your own appointments & get discharge papers - but that’s yet another App!

Thomas45 profile image
Thomas45 in reply to CDreamer

The NHS app! I've tried every way to get full details. I am going to have to get a new driving licence with a new photo. Then I should be able to get to the full app. The likelihood of me driving again is very low due to foot drop.

CDreamer profile image
CDreamer in reply to Thomas45

I’ve been trying to renew my license - I applied in January! Numerous emails, can’t get through on the phone, always recorded message or rings out, several letters - no response!

Tech is great when it works but boy do you go round in circles trying to get it to work!

john6 profile image
john6 in reply to Maggimunro

Yes you are correct, many will assume that all is okay. Tbh I am absolutely livid to think that in this day and age such sloppiness and lack of care exists.

Hi John! I have a colonoscopy/endoscopy scheduled for next week, and I am having tremendous anxiety about it due to the risk of going into afib during or after the procedures. I had a mini maze 4 years ago, but have had a few break throughs. I also have Inappropriate Sinus Tachy, which I take Metoprolol for. And Flecainide as PIP for any afib break throughs, which are few. I only take 81mg of aspirin and that is because they found a large Atrial Septal Defect during the pre mini maze trans esophageal echo. That was occluded. I also have an AtriClip closing off the Left Atrial Appendage, so no need to take anticoagulants. The bowel preps have warnings about heart arrhythmias.

What bowel prep did you use?Any complications?

The prep doesn’t bother me, it is just the possibility of going into afib. And being sedated for an hour.

I am in the US, and the Dr always comes in after the procedure to verbally give results and copies with photos of any polyps found and removed. Results from biopsies are always given via phone call or letter or both.

Due to recent incidental finding of pancreatic cysts via MRI,

I will be going to a Gastroenterologist at Mayo Clinic who specializes in pancreatic diseases., I know afibbers have colonoscopies/endoscopies every day, but it would help to know others experiences just to help ease some of my anxiety about it. If you can share yours, I would greatly appreciate it.

Wishing you good results!

Thomas45 profile image
Thomas45 in reply to KatzFib

I have permanent AF and chose not to be sedated. The procedure didn't exacerbate my AF. It's because my AF went very fast when I was under general anaesthesia for taking out my appendix on an earlier occasion, that I chose not to be sedated. It all went well.

KatzFib profile image
KatzFib in reply to Thomas45

Thank you for sharing your experience! I appreciate it! And, glad yours went well!

john6 profile image
john6 in reply to KatzFib

I took a solution called "Plenvu" which did not start my Afib off and I have taken before. The procedure normally (in my case) should have taken 30 mins, it took an hour. I did not (out of choice) have any anesthetic to put me out or the other option - gas and air, apart from stomach cramps caused by the doctor expanding the insides whilst looking around, there was no pain which included tissue removal . I rested up at their request for around 30 minutes and drove myself home. Everything will be on hand so do not worry over Afib starting. My Afib will normally start at the drop of a hat and I had nothing - you will be alright, good luck. P.S. I had to stop my anticoagulant a few days before and start again 6 days later.

KatzFib profile image
KatzFib in reply to john6

Thank you John! I will check out the Plenvu. What a guy choosing no anesthetic or gas/air! Wish I was as brave as you and Thomas45! I will stop my aspirin 5 days prior. I am in such fear of being under general anesthesia with this, that I might request some other type of sedation, if possible!

john6 profile image
john6 in reply to KatzFib

As opposed to being brave it was a more (I think) a rationalised decision based on 1) They give you an option, as such it cannot be that bad! 2) I then say; I don't want either which they then say ok! Based on both I reasoned that whilst it is uncomfortable, it cannot be that painful. Having said that; I was after an hour of delving a wee bit, sore for a few days 😳😉

I had two colonoscopies in 2019, one while still on an AntiCoagulant which found 4 polyps, and one a fortnight later, having come off the anticoagulant, to cut out the polyps. On each occasion the doctor performing the colonoscopy told me the results and asked if I had any questions.

I chose not to have sedation so was able to watch both procedures on a screen.

It was the hospital which had initiated the procedure after finding a polyp three years earlier. That earlier procedure, a sigmoidoscopy, came about when my GP referred me to the hospital after I reported to her that I had passed blood through my anus.

Following the sigmoidoscopy and the more recent colonoscopies, I received a letter from the hospital telling me what they'd done and telling me they'll see me again in 3 years.

With the prevalence of criminal hacking and ransomware I'm not surprised that there's no national data system.

Frustrating. I had an echocardiogram last week and was told the report goes directly to the consultant ,not GP,and I could discuss with him or her.As I'm not due to see him until October I shall ring the secretary next week or so.I go on no news is good news but even so it's MY data! Same for you!

Hope you get sorted out .x

john6 profile image
john6 in reply to wilsond

There lies the problem "no news is good news"! That is the way that I have thought in the past, believing that the medics were watching over me - it does not appear to be the case.

wilsond profile image
wilsond in reply to john6

Yes it's worrying to think that important information is lying about ' somewhere'

Im in East Hampshire and have attended both QA and SUH and the consultants have always sent me copies of results/findings along with copies to my doctor. If I have any blood tests etc at the Doctor's I can either phone or access the results on their website record, however they will only contact me if there is any problem or issue with the results. I tend to check online whenever I renew prescriptions.

john6 profile image
john6 in reply to Silvasava

Going on my experience and believing that if anything was wrong then they would contact me - my confidence on that has gone right out of the window. I now realise that is how patients fall through the cracks in the floor and miss vital treatments.

My cousin went to her doctor with a lump in her breast. Her GP referred her to the local hospital telling her 'they will let us know if there is anything untoward'. Eighteen months later she went back to her GP as the lump was considerably larger and they had had the results - malignancy - sitting on file. She was told patients 'ring in for results'. Some four years later she has undergone a considerable number of major operations, chemotherapy and radiotherapy and was advised the practice has a case to answer.

john6 profile image
john6 in reply to irene75359

That is terrible. I spoke to the hospital complaints department and at one stage of the conversation I said, as far as I am concerned the GP surgery have "A duty of Care" - she agreed.

irene75359 profile image
irene75359 in reply to john6

Her legal advice was the same. I agree, it is terrible. She is self-employed and always very busy so had assumed that it was a cyst as the hospital had indicated that it probably was.

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