Livid (long post)

I am STILL annoyed that I had a haematoma which was not noticed by the Breast Cancer Nurses and that one of them, when the Surgeon asked when the drains came out stood there and told a bare faced lie and said she hadn't done it.  This resulted in an emergency second op, Breast Surgeon looked shocked at what she could see and had to do the whole op again on one breast and clean out all the blood that had collected. 

HI GreyCats

I haven't had incorrect medical records, I asked for mine as I have a distrust of my local hospital and found out I hadn't been told something, regarding my diagnosis which I'm personally not unduly bothered about.  The only thing I can suggest for you is to use the Data Protection Act?
From Gov.UK  "Everyone responsible for using personal data has to follow strict rules called ‘data protection principles’. They must make sure the information is: accurate and, where necessary, kept up to date.  Your rights - Under the Data Protection Act 2018, you have the right to find out what information the government and other organisations store about you. These include the right to:: have incorrect data updated"

And another long post ..... I do think that many people have a belief that hospitals and Doctors don't make mistakes, but my personal experience regarding the care of my parents has been anything but that.  My Dad had a stroke, was taken to the local hospital and spent 3 days in A&E being observed as there were no beds on the stroke ward.  They did the scan within the hour, but failed to act on it by giving him blood thinners.  By the time he got to the stroke ward he was blind, paralysed down one side and couldn't even sit up.  We were told that there was nothing that could be done (I found a programme which improved his eyesight privately), but my Mum became his carer.  He needed a mechanical device just to get him into his wheelchair.  My Mum was 75 at the time. Then when she was 79 she got an infected toe and was admitted to hospital.  It was amputated and she was discharged.  Her blood pressure was low, her kidneys were deteriorating and she was disoriented and despite me saying that she 'wasn't right' they let her go home.  Fast forward to many calls to the doctor and her getting worse and worse and serious back pain, I eventually got her re-admitted.  Later I paid for her medical records and went through them with a fine tooth comb for the 3+ months.  My Mum spent her 80th birthday in hospital and died in Intensive Care shortly after.  When I went through her medical records I identified 97 errors with many, many of them contributing to her death.  On re-admittance "not sepsis, but unwell".  "no fluids to be given".  Treatment of sepsis requires immediate fluids.  It was then identified that she had sepsis and this sepsis had attacked her spine, hence the serious back pain and not giving her fluids meant she was near to needing dialysis.  Then when she was improving, they made a back brace for her.  She was over 6 foot tall and they made it badly which caused more pain so they just kept offering her morphine,  Then they thought she had dementia because she was getting confused with all the morphine, despite her records being quite clear that she was 100% ok mentally.  Then as the morphine was causing her kidney issues (after they had damaged them previously) they changed her pain meds to a patch of something else.  So, the day I had visited Dad in the afternoon at his care home (whilst Mum was in hospital), I was visiting Mum in the evening.  I got there and she had stopped breathing in the afternoon, twice and had to be resuscitated. It was an afternoon visitor that had noticed - not the nursing staff.  The day before I had complained that she wasn't awake and wasn't drinking - the doctor came and said she was doing well and just wrote on her notes "wake her up to drink" .  Going through that previous night's/ day's medical notes,  "Unable to wake enough to take medication (overnight) / ate breakfast on her own / 1 litre of fluids drunk / unable to obtain pulse/ oxygen given / burn dressed when patient tried to pick up tea and dropped it."  Looking at that little list - how can anyone NOT notice that something was seriously wrong?  Even a layman would know that there's something serious happening there! And clearly she hadn't managed to eat her breakfast or drink a litre of fluid, so that was obviously a complete fabrication.
After she was resuscitated, they discovered that the junior doctor hadn't stopped the morphine so she was getting the new pain patch and the morphine and had misconstrued how to give Gabapentin.  It was meant to be a dose of 1, building up to 3, but the started at 3 and it was the 3rd day where it was up to 3 x 3 does (which led to suppression of her breathing on top of the double dose of the morphine).
She survived 3 days in intensive care before she needed a ventilator and then 'there's nothing more that we can do".  

I actually went to a solicitor after going through these records, but after 3 years of barristers, solicitors, doctors opinions etc because she survived 3 days in intensive care - despite these 97 errors that were to me so obvious as I went through her records (I taught myself how to read them) -  there wasn't enough evidence that they directly caused her death.  

I then became my Dad's guardian and when he had another stroke, despite being promised after the previous time of not giving medication in time  - the same thing happened again.  I knew enough to fight for his rights this time and they got so annoyed with me in the hospital they sent me away, so I rang every half an hour until the doctor finally saw him and prescribed a blood thinner.  Then when he was in another time (as his health and welfare power of attorney, I refused to stick to visiting hours and had a legal right to be with him, so I spent several hours being his carer - food/drink etc) and I got asked about his wishes for resuscitation and I told them clearly that he wanted to be resuscitated.  100% I knew his wishes.  When he was discharged, I discovered they had filled in a form to Do NOT resuscitate.  And stated that family were unavailable - that day I had spent 5 hours in the hospital and they had both my mobile and my landline.  I was FUMING!  

In contrast, my care for my BC was very good and I've no complaints whatsoever about my care. So, I think some hospitals have major problems and you do have to stand up for yourself when things aren't right.  Perhaps a solicitor letter regarding DPA for your medical records may be enough to frighten your hospital never to make this mistake with you again?   I too didn't bother with PALS as they just offered me a discussion with the doctors who had 'cared for' her - and I certainly didn't want to meet them again.

Venicelagoon -- I remember you mentioning this in another thread. I wish I could say something effective, but I just want you to know that I hear you, loud and clear.

lesleyhelen -- this made my blood boil. I wish you did take them to court, based on what you said here, but I do realise that you took legal advice and that's the outcome.

Many thanks for the advice regarding the data protection act, and about getting a solicitor to send that letter. As it happens, one of my children is a solicitor, so I'll see if she can do this, or someone else in the office whose legal field is closer. 

I don't get how they get away with this. I too work for the NHS, and in my organisation people get disciplined on far less than that, there is a meticulous net of checking and re-checking, and since sometimes mistakes do happen, the culture in my own organistaion is such that people immediately report their own mistakes, take action to rectify, and get the right correction as needed. I was naive to think that other NHS organisations would be the same. :/

Long reply, get a cuppa.

Have you written to the health board?

My oncologist 3 years ago was a *****: my first appointment with him, he was running late so by the time he got to me (I was last on the list) he was an hour late, my anxiety had gone through the roof, and tears were streaming down my face. His first words to me? "why are you crying?" "all of...this." "but you don't need to be upset, the cancer's gone, we've taken it away."

My then husband and I followed him into the consulting and we sat down. He went through my records (and I've seen them since, at the top of *every* single letter from the consultant (wonderful bloke "family history therefore high risk") and his first question was "do you have a family history of breast cancer?" I thought 'are you having a ******* laugh?' Instead, I said "yes. My mum died of it and my sister was diagnosed in 2015.“ "And how are they now?" WTAF? "My, mum died in 2000, the day after my birthday, my sister had two rounds of radiotherapy and she's OK." We talked about my other illnesses, of which there are many, then he gave me my schedule for radiotherapy. 

Fast forward a few weeks and I've finished radiotherapy so go to see him for my final appointment. Husband couldn't come with me so my friend came [funny tale: said friend had not long since come out of A&E after slipping on ice, spraining both wrists & getting two black eyes in the process. Keep this in mind. Oh, and she's also much, much taller than me]. In pretty sharpish so we sat down & could see oncologist glancing over at my pal. "How are you feeling now?" he asks me. "Uhh, OK, fatigued but glad it's done" *are you ready? *

"Why are you fatigued? You only had radiotherapy." 

Yes, I *only* had radiotherapy. My friend said if she'd not been with me she wouldn't have believed it. I got in touch with my MSP and wrote a letter/email of complaint to the health authority about him. Got a very long, very apologetic, very nice email from the head of the health board. 

I had to go back to oncologist about tamoxifen (side effects making mental illness worse) guess who I saw? A woman, and one of the breast cancer nurses was there as well. Don't assume that because an oncologist is female she'll be more sympathetic. This one was *almost* as bad, and I'm so so so pleased I don't need to go back but apprehensive about attending if (highly likely) I develop cancer again. 

I'm so so sorry to hear that you and many other women seem to be treated like idiots when it comes to our health - we need to keep kicking up a fuss and not resting until we get a result. 

Sending you all much love and hugs

I got the cuppa you prescribed, nearly choked on it when I got to, " "yes. My mum died of it and my sister was diagnosed in 2015.“ "And how are they now?" " 

Not BC related but in 1988 my mother repeatedly visited GP, both alone and accompanied by my father, with various symptoms to be told nothing wrong she just had empty nest syndrome as the last of her 4 children had left home.  Refused a second opinion - even private, as no one he could refer her to as nothing wrong with her.  We took her to A&E in desperation and within 30 minutes the doctor identified an enlarged liver and suspected bowel cancer.  They wrote to GP who visited my mother in hospital and told her they were wrong, even though bowel cancer confirmed, and the only reason her liver appeared enlarged was because she was so thin!  She died weeks later .

Then in 2011 my sister visited multiple GPs in practice .  One used the empty nest diagnosis.  All tried to force her to take anti depressants.  A few days after last visit and over a bank holiday had to call out of hours GP and a locum did home visit.  Within minutes he was calling for ambulance and I heard him mention his concerns on call to GP assessment unit.  An hour later after a scan told devastating news she had brain tumour.  She died a month later.   The GPs excuse for them missing was they rarely see brain tumours.  She had classic symptoms of brain tumour.

The only thing I can add, to put my penny's worth in,  is to ignore PALS and go straight to hospital trust. They will also have procedures in place. Failing that perhaps the General Medical Council as all medics have to be registered and if they are making mistakes it ought to be investigated. I'm stunned to read your story. I have had inaccuracies in my post surgery letter too but nothing like yours. Good luck x

https://www.gmc-uk.org/concerns

THIS!  

I wonder if men have the same issue? I know of many *many* women who've been fobbed off time and time again only to be diagnosed, sometimes far too late, with something that could have been treated a lot easier if the women had been listened to. 

*puts ranty pants back in the cupboard*

I think men hold back from going to GP longer when they know something is wrong but embarrassment or putting brace face on it means delay so when they do present taken more seriously.  Also less screening for men.  Women have breast and cervical but I've not known my soon to be 60 year old husband called for any.