Lost Health data

[colo60]

Hi, I am curious as to wether anyone as ever had NHS testing for Heart problems and found their data regarding it is nowhere to be found, I ask because I had a operation on bad cut, I was asked of any health problems I had, cardiomyopathy says I, No data was to be found on my records, approx 5 years before I spent a period of time having hospital tests because my GP sent me with regards to a real bad chest pain, the final analysis was I had Cardiomyopathy, due to either a heart attack or defect, because a dead heart muscle was located through tests, told I would be ok but get out of breath at times and lead an healthy lifestyle, after my bad cut op' the hospital gave me letter to hand in at my GP about no data available, that was 2 yrs ago, I contacted my GP's reception because I really was worried with this Cov19, asking to clarify about my cardiomyopathy, I got an email back saying there is no data available and basically told me i'm ok ??? even though I explained, as anyone gone through a similar experience because I am totally at a loss what to do, I am almost 70yrs and find this utterly disturbing, thank you in anticipation - Col

[CDreamer]

Hi and so sorry you had this experience.

I would suggest that you contact the PALS service of your hospital and ask for an investigation. If this has happened to you, it may well have happened to others.

I have had data ‘disappear’ but not anything as crucial as the information you describe. I attended a cardiology department outpatient clinic and got into an argument with the consultant - me saying one thing and the cardiologist saying that was not in my file. Luckily I had kept my own copies of everything and reached into my own file and produced the missing document, much to his surprise.

I think that this really highlights the gaping holes in the administration’s protocols, which I have often commented about. Requests from GPs to consultants for consultations getting lost in the system - which is so 19C using letters and post - going missing being the most common I have noticed.

Tip:- Apply for copies of every letter between your GP and your hospital, your GP surgery should be able to supply these. Apply to your hospital for the same. You will have to complete and sign a form at both. Keep copies of everything in date order. Keep your own notes of every appointment of what was said/done etc. It’s amazing how things improve when the hospital knows that you are on the ball.

Our hospital, is supposedly going live with it’s computerisation of patient records this Autumn and as far as I am concerned, it cannot come soon enough as it is hardly surprising that things get overlooked when I look at the size of my hospital file! How anyone can possibly prepare for an appointment from paper records with all the data from scans, tests etc these days is beyond me. No system is perfect but our local hospital are well aware of just how easy it is for information to go missing.

Best wishes CD

[BobD Volunteer in reply to CDreamer]

Asking for copies should be the norm I agree but the other problem is typing errors which will be just as common onto computer files which themselves run the risk of corruption or hacking. As an example I had a report on a TOE before cardioversion saying " a thombus was found so DCCV carried out. " I had to write and complain and it should have read "NO thrombus was found etc. "

No system is perfect and we all need to be proactive regarding not only our health but our records.

[colo60 in reply to BobD]

Cheers Bobd, my records have no typing errors, they just don't exist ?

[CDreamer in reply to BobD]

As letters are also typed - same problem - will never be able to account for input error - but much less likely for information to be lost & much easier for doctors & nurses to read an updated summary on one page.

[BobD Volunteer in reply to CDreamer]

I still worry about data breaches knowing how sieve like most government departments are.

[colo60 in reply to BobD]

Good point BobD, what is curious is this, after my final tests consultation, the specialist told me my heart analysis as stated previously, he said, go to your Gp and let him know the outcome of this meeting and he will change your medications to suit, my details should arrive within a week at GP, I saw GP in 2 weeks giving details time to arrive, they did nt arrive at the time, my GP did nt sort new medic's, my blood sample took at surgery a week before by nurse went missing, GP did give me a code number in order to have a cardiologist be my periodic angel through life, I arranged this only to be notified 7 week later appointment cancelled, but not to worry they would re-arrange it, 2 month later I got a tetchy letter from NHS hub , asking why I had not fullfilled my appointment ???, I sent them the cancellation letter as proof of what happened, 2 weeks I received a letter back from the hub saying sorry etc' and to go see my GP to start it all again ( can you believe !!! ) I was so stressed I simply gave up on them, but all this does'nt explain why there is No data about my diagnosed with dead heart muscle and cardiomyopathy, my latest attempt at clarification as previously mentioned at my surgery was a somewhat blaise attitude, and perhaps I ought to see my doctor !!!

[CDreamer in reply to colo60]

And that requires an investigation. I agree it’s appalling & cant imagine the stress of dealing with all of it.

[colo60 in reply to CDreamer]

Thanks for that CD, Actually I got to a point and decided to look after myself, I swear it's all true, problem arose upon having a operation on hand ! meant either put into sleep mode or a local injection and remain awake, I had been left fri till mon cos they were so busy, surgeon was nt keen on the sleep option because of cardiomyopathy, he went with it because NO data on my record, you know what ! it's like I made it all up, that really is disturbing ! thanks for caring to comment CD ...

[colo60 in reply to CDreamer]

Thanks CD, appreciate your input

[Pita]

I had a mild heart attack in August 2011, spent 5 days in hospital on the cardiac ward. The hospital had lost all data of this admission and treatment. Before going home I asked for my discharge letter and any ECG's that was done, All they said we don't give them to the patient. I said I have the right to have a copy of any paperwork test results etc. I did finally get them, but my gp surgery did not get this discharge letter from the hospital nor any information on my stay. It is not the first time this has happened to me at my local hospital, and to be honest PALS are not much good either. So now I ask for all letters and any test results to be sent to me every time I see a consultant at the hospital.

[colo60 in reply to Pita]

Thanks Pita, appreciate your input, interesting !

[Hidden]

I’m the opposite to you. See I have had heart failure for a while! Pity nobody told me!

[colo60 in reply to Hidden]

Well I guess i'm lucky that I actually know Hylda, it's just the world that does'nt... did they fail to diagnose your heart problem by you not being sent by your GP to hospital for tests ??

[Hidden in reply to colo60]

It took a long time. I was having a minor day op

And the anaesthetist asked if I ever had palpitations

When I said yes but Dr had done nothing he said go back tell him you need a 24 hr monitor or else change Dr and it all took off from there

[colo60 in reply to Hidden]

Gosh Hylda it's lucky you had that minor day op or you would'nt know, it's strange how some things only come to light by chance, I hope you are being looked after well now though and doing ok !

[Hidden in reply to colo60]

Quick trip to Resus with AF and surgery still did nothing but a locum sent me to see a wonderful cardiologist and I’m successfully medicated now

[colo60 in reply to Hidden]

Excellent Hylda, a positive result, glad you're sorted,