Access to results,scans

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Previous partial nephrectomy,then diagnosed on the other kidney,monitoring .CT scan last year showed a growth on the spleen,if it continues to grow will recommend surgery,also to monitor.

Recent lung health check CT,whilst awaiting results,saw an entry on my GP records,referred on 2ww suspected lung cancer.I have not even had a phone call,text,email or letter about the result,MDT meeting or being referred.

GP surgery said some letters should not be able to be read by the patient,until discussed with them,suggesting NHS app is at fault .

Referred to respiratory medicine,who whilst apologising for not having made any contact,how can you keep secret my own health results.

I do at least have an appointment now after complaint,over the 2 week wait already..

Really poor experience,human error ,IT or inept ,I shouldn't have to find a possible lung cancer diagnosis by 'being able to see the wrong letter'.

  • So sad to read this happened to you Nidge nobody should have to go through the menntal strain of discovering by such a discovery . I wish you well with the fuTUre

  • I saw my entire record on the NHS app, some of which was wrong and insulting. Later saw my GP who apologised, without prompting. As my biopsy results were 2 weeks overdue, they took pity and checked the hospital system, saying they shouldn’t really let me see it. Thankfully it’s not the worst result, but not great.

    Two weeks later, spoke to the relevant hospital department, who claimed the results weren’t yet in. Got the ‘official’ result a week later.

    Trust in the NHS has gone. I find myself using ChatGPT for my care plan. Much better.

    Best of luck with your journey, my advice is to use whatever works to get what you need. Don’t be afraid to use the complaints procedure, or even your MP. 

    The NHS is under pressure, but you need care. Get proactive, it will make a difference.

  • You need to get SAR1 form. It is subjesy access request under GDPR and data protection act 2018.You can find it online. I have printed it out, filled form, copy of ID plus copy of proof of address (council tax bill?). Also it's worth mentioning that you do not wish to have anything deducted - it means they will not black out "sensitive" words.

    For example in my case they blacked out all words like "depression" or "suicide" from my mental health records which made those documents useless, they literally blacked out actual diagnosis because they assumed that those words are triggers for me. Idiotic.

    Send it to your hospital. I was lazy and asked chatgpt for name of department and address. I send it to hospital, my gp and awp (which are mental health part of NHS in my area). I have already got all over 500 pages from gp ans all scans on my email.